Saturday, January 14, 2012

Michael Aaron, Our Special Angel.

Yesterday morning at 4:19am my third son was born. I've know for years that if God blessed us with a third boy, I wanted his name to be Michael. Michael is my middle name and somewhat of a family name as well. I only recently warmed to the idea of giving him the name Aaron as a middle name. I liked the connection it made to the Shust family (both Daniel and Nicky are named after family members) and thought it would give he and I a strong connection later in life.

Last May, while kayaking off the coast of Maui (how often will I ever get to say that?!) Sarah informed me that we were pregnant and we couldn't have been more excited. After all of Nicky's complications with EE and a near death experience or two, we weren't sure whether we could handle another child with all the care and attention Nicky demanded. But we felt strongly that we wanted more. God blessed us with another who, despite some complications in the pregnancy, grew to be a strong healthy little baby, due January 30th. The anticipation to such an event is palpable. The house starts to look like a baby lives there again as high chairs and cribs come down from the attic, the nursery gets reassembled and parts to the family band have long been assigned: Daniel on keys (or bass?), Nicky on drums (that was easy) so Michael will have to learn electric guitar. (That way when I'm old and cant afford Nate, Duffy and Coker, I'll hire my boys.)

At 37.5 weeks, Sarah had another of many sonograms and for the first time, doctors said that Michael should be much bigger. Within hours we were at the hospital and Sarah quickly delivered our tiny, beautiful Michael. Within five minutes a doctor told us that they were seeing strong signs of Down Syndrome.

The celebration came to a sudden halt.

Our Michael, who will be needing open heart surgery very soon for the often present AV Canal Defect, is in the NICU right now with an infection they can't locate, and Sarah and I have navigated the most bizarre, disorienting balance of being joyful over a new life surrounded by congratulations with grieving the loss of simple dreams we had for our boy and our life together, facing the unknown fear of how in the world to parent a child with Down Syndrome. We keep thinking all this is an absolute dream, because this is always someone else's story and never yours.

This story is ours, not just for today or for this year but the rest of our lives and as I type this I don't know what to do.

Sarah has had Psalm 46:10 on her heart for weeks. "Be still and know that I am God," and has felt the Spirit prompting her for about a month now to start a blog called "Down Came the Rain" and couldn't imagine why that title would make any sense unless our next child would bring more 'rain' into our lives. And she was pretty sure she couldn't handle any more rain.

And we can't. Joyce Meyer just tweeted that old saying that was cheesy to me before today: You don't need to know what the future holds, you just need to know Who holds the future. I've never cried before when I read that. But I did today.

Calloused and bruised, dazed and confused, I am not skilled to understand what God has willed or what God has planned, but my hope is in Him alone! God alone will receive the glory and the praise, He will watch over us in the darkest valleys and when the night seems long and He'll help us to see the way before us. All of my plans and all of my dreams, we lay before His feet. We submit to His design.

I get to remind myself of these truths every night I sing them.

Sarah and I now fearfully look forward to raising a second special-needs child, knowing that God has something up His sleeve! And that something will bring Him positive attention: glory. My resolve to be a good and faithful servant in His sight grows stronger. And I have a feeling we will see a lot of Jesus in Michael, our little angel.

Welcome to the Shust family, Michael. :)


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celdridge said...

There's a reason God gave you the babies he did, but you already know that. I have 4 kids, all of whom were preemies, and 3 spent time in the NICU. Being a parent of a newborn is such a rollercoaster anyway, but when you throw in the craziness of complications and hospitals, some days all I could do was cry. I know I can't make it better, and I'm not sure why I keep typing. I guess I'm just trying to say that you aren't alone. You have God. You have us. Don't try to take on all of this by yourself. Congratulations on your beautiful son. :)

John said...

He is beautiful! A gift. Not exactly what you were expecting, but nevertheless a gift. I have 2 "special needs" children. Our 12 year old daughter has autism and my 15 year old son is battling a rare chronic illness. I know the feeling of thinking that there is no way I can handle it, but each day the Lord Jesus calms my anxious heart and brings me hope through my children. Praying for your precious family.

flatlanmum said...

Indeed ALL Glory & Praise to our Wonderful God! Blessings to you Aaron and the beautiful family God has given you!

Vicki said...

So praying with you. I don't really know you or your family, and I can't even imagine what you are going through. BUT I know our BIG God who adores you and Michael. I will be praying that you feel every inch of how big He is and every ounce of the weight of His love.

flatlanmum said...

Indeed ALL glory & praise to our Wonderful God. Blessings to you Aaron and the beautiful family He has given you!

Jess :) said...

Welcome to the world, sweet Michael Aaron! What a beautiful post about how our walk with God is entirely in His hands ... Only HE knows.

What a precious little face the Lord has blessed you with. Praying for all of you as you embark on this journey God has you on. I can't help but imagine what amazing things He will do through Michael and your story.

mandy said...

That was beautiful.

Anonymous said...

Praying for you, Sarah and all 3 boys as you begin this journey. Thank you for your honesty and openness and God bless precious little Michael. And 3 boys are awesome! That's what we have. Thank you for your ministry Aaron. My family is so thankful for you and yours.

Dragonflysoul said...

I can't think of anything worth saying....

So I'll just say that without ever having met any of your family members, I'm convinced the hand of God is resting firmly on you. This child is someone quite special - I just know it. Blessed be the name of the Lord. He will carry you.

Anonymous said...

Praying for you and Sarah and your 3 boys. God bless you on this journey. Thank you for your honesty and example. We are so thankful for your ministry...and 3 boys are awesome! (that's what we have!). Welcome to the world, precious Michael.

andysr3 said...

God does have a plan, indeed! I'm sure you know Matt Hammitt and his family's story. You are not alone. You have the Lord and a family of believers surrounding you. Prayers going out to you, your family, and baby Michael!

"You're gonna have all of me
You're gonna have all of me
Cause you're worth every falling tear
You're worth facing any fear
You're gonna know all my love
Even if it's not enough
Enough to mend our broken hearts
But giving you all of me
Is where I'll start"

sandyv said...

CONGRATULATIONS!!! The Lord blessed us with a beautiful baby girl with Down's Syndrome 12 years ago in June. Her name is Gianna, which means "gift from God"~and she truly is just that. She also had a partial AV canal. She had open heart surgery on February 29, 2000~making leap day a very special day for us. You and your family are in my prayers. God bless you and WELCOME TO OUR WORLD, MICHAEL!

Kelly Beaty said...

Your faith is marvelous. Your understanding that your story is His story is evident. And Michael...he is beautiful.

These words, that you wrote, helped me through some of the darkest hours of my life. Thank you for sharing them with the world.

I am not skilled to understand
What God has willed, what God has planned
I only know at His right hand
Stands one who is my Savior

Rai and Shannon said...

Thank you for your openness and honesty! What a journey you and Sarah have been on the last couple of years!! And what a testimony you have! It is easy to show faith in the good times, but much harder in trials. This sweet child, Michael, was wonderfully and fearfully made. And while you guys were expecting something different, God knew him while he was in Sarah's womb. How reassuring!! He has a plan and purpose for your life, and I think Michael is going to be a big part of it! Congratulations to your family on the newest member, and we will pray for the challenges little Michael will face with surgery, etc. Thank you again for sharing!!

Kerry said...

We adopted our two boys, one of them was a premie, born at his house because his mom was doing drugs, had a really rough start. Had a enlarged liver, trouble breathing, feeding, acid reflux, and possiable Osteogenesis Imperfecta because he had two breaks already. We did not get him until he was 4 months. He was diagnosed with Osteogenesis Imperfecta (brittle bones) at 1 year old, didn't walk until he was 2. He will be turning 5 in a few weeks. He has had 7 breaks in his life so far. I had our adoption workers ask if we even wanted to adopt him because of all his health issues. I said "of chorse!" I fell in love with that little boy within a day! And God has showed me to just take it day by day, hour by hour, min. by min. If I don't its easy to freak out!Try to find groups of parents going through the same thing, that helped me feel not so overwhelmed and alone. God dosen't give us more than we can handle. Congrats on your new baby.

The J's said...

Praying for your family. What joys and adventures await you! Please check out This family has a little boy with Down's, and are so in love with their treasure. I am a single adoptive parent of many special needs children--not an easy walk, but with God guiding you, you'll do fine!

FashioNatalie said...

This is beautifully written and really struck a chord with me, so much so that I had to write a blog post on how it affected me! You are a beautiful family of God, and I know he's got you taken care of, every little thing! Lots of love, prayers, and congratulations!

Scott said...
This comment has been removed by the author.
Robin said...

Wow!! God has GREAT trust in you and the abilities He has give you both. He looked at you and said, Those two look like they can take great care of my most precious angels and delievered them to you.

No doubt this will not always be a Hallmark card. At times it may be a shoe box card. Don't forget to love each other and slip away together.

Will pray as God brings you to mind!

Scott said...

My dear brother in Christ,
Aaron, I stumbled upon your blog a few months ago while watching one of your videos on YouTube Thank you for ministering to this soul in Virginia.

A dear brother once told me, "Don't be tempted to project yourself into a graceless future. The grace for that time is not here yet. It is only here for today. Hold onto the grace for today."

I encourage you to hope in our God who saves.

Though this is not an outright Christian poem, I pray it ministers to you.

Scott said...

My dear brother in Christ,
Aaron, I stumbled upon your blog a few months ago while watching one of your videos on YouTube Thank you for ministering to this soul in Virginia.

A dear brother once told me, "Don't be tempted to project yourself into a graceless future. The grace for that time is not here yet. It is only here for today. Hold onto the grace for today."

I encourage you to hope in our God who saves.

Though this is not an outright Christian poem, I pray it ministers to you.

Anonymous said...

Aaron, my heart breaks for you as I read this, but at the same time rejoices in the grace of our God who prompted you to write the very words that will continue to speak to your hearts as you start this new journey. Praying!!

Erika said...

Hugs from Jeremiah & Erika Gordon! Praying for peace during this time, I did want to send this link to a fantastic author who's family was "rocked" (in her words) by the birth of their beautiful daughter who has DS. I think you will find her writing shockingly honest and her story to raise awareness encouraging.

and the link to N's birth story here

Hugs and Prayers!

Debbie Greenwald said...

Aaron, I heard you & the special song you sang about your son when you were at my church last year, (McLane Church, Edinboro Pa.). You showed how special of a dad and person you are. I will keep you and your family in prayer. God has given you hidden blessings. Debbie

Anna M said...

Welcome to the world, beautiful, precious Michael! You have been known from eternity! God bless you!

Janae said...

Thank you for sharing the story. Make sure to check out the organization Special Touch that caters to people with disabilities. When he gets older we may even want to go to one of the one week (5 day) long camps. I have quite the background of helping those with disabilities and Down's kid/people are so nice. They can be strong-willed though. I think of the words to Steven Curtis Chapman song "His strength is perfect, when our strength is gone, He'll carry us when we can't carry on, raise in His power, the weak become strong, His strength is perfect, His strength is perfect".

Love and prayers to you and your family.

dalitest said...

Welcome to the world Michael. You will be a great gift to your parents. God has blessed our family with a little girl with DS 3 yrs ago and she is a complete joy.

Laura's On Her Way! said...

Will be praying the surgery goes well and for strength and comfort in the coming weeks! You have given is so much of yourself with your wonderful music, it's time for us to give back to you through prayer and good thoughts!

Anonymous said...

Prayers for your family. Among all of these posts, you may not have time to read them all...but if you should happen to read this, you may be encouraged by a book called "a good and perfect gift" by Amy Julia Becker. It is about a family who unexpectedly had a child with downs syndrome and it goes through their journey of faith. A beautiful, encouraging book. Blessings to you.

turtlepearl said...

God Bless you & your family, and especially your new little angel. Jonathan White wrote a song about his little Down's girl, called "Downright Beautiful." If you've never heard it, I'm pretty sure it's on youtube. Downs kids are very special & I'm sure God had a very special reason for sending him to you. Hugs & Prayers. <3

LyonsLady said...

you said "The celebration came to a sudden halt."...i pray God will engulf you and your family with HIS wonderful Peace.Joy and Thanksgiving! i also ask God the Creator of all things to touch precious Michael Aaron with His healing Hands...JEREMIAH 32:27
In the Matchless Name of Jesus Christ. AMEN

Anonymous said...

congratulations on your new bundle of joy. i will be praying for you and your family. God bless! Love your music!

kimper said...

It is so hard to not have all the answers in life and put all your trust in God, but it was we are taught to do. I hope and pray that you can find peace and joy in the beautiful gift from God and even if you don't have all the answers now, I am sure you will find them at some point. I pray for you all and wish you the best. Keep your faith and keep making your beautiful music!!

Christi said...

Praying for Michael Aaron, now. Father I pray for a miracle for this little one! Bring light to where this infection is Lord, and wisdom to the doctors, nurses, and hospital staff. I pray for PEACE that surpasses all understanding to surround Aaron and his family now, Lord. In Jesus' Precious Name, AMEN!!!!

Christi said...

Praying for baby Michael Aaron. May our heavenly Father bring a miracle healing to this little, in Jesus' Name! AMEN!

Lee Anne said...

Just as you watch a "normal" child grow in God, you watch a down's syndrome child grow. you will appreciate what he learns & what he learns to do. I am positive there are times with my heavenly Father, I haven't developed with Him in ways He wanted me to but He loves me anyway & He accepts how I've grown. So to will your wife & you accept this baby.

Mary Law said...

I wanted to share a poem...

Welcome to Holland
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

DannyFStephens said...

Hey, man. This is Danny from Smalltown Poets, used to work w/Dan Hannon,etc...Praying for you, bro. You've already done things in your life that most people will never do. You can do this too. Blessings on your precious family.

Christine said...

Aaron & Sarah:
Congratulations on your little blessing! As a life-skills trainerforadults with learning disabilities, autism & Down's Syndrome, I have been blessed in spades by knowing the people I serve. The special minds & hearts of these folks know no bounds, and the love they share is immeasurable. I will pray for health for your young ones, and His guidance for you as you face the challenges and joy that new life brings. Hallelujah!

Anonymous said...

Here is the poem that was read on that shared youtube link

Welcome To Holland
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

* * *

©1987 by Emily Perl Kingsley.

Aaron Shust said...

Thank you so much all. I am the only person who can view this account and I approve all I'm reading all of them :) Some of you have asked if you could share this story. If you feel inclined to do so, and feel it gives God glory, please do.

And Mary, that Holland Story? Jeremy Theissen from the band Downhere (who's son Liam (same exact birthday as my Nicky) has Down's too) shared that story with Sarah and I last night. Amazing! Sad and amazing. and Hopeful!!!

God is revealing His plan for us that is more epic than we'd planned! :)

Carole said...

As a grandmother I went through a similar experience when my daughter was expecting twins. We were told that one of the twins was not going to survive due to a genetic abnormality. My daughter safely delivered her son, but her daughter only lived for a few minutes.
Psalm 139 helped us through this time & we believe that "We are fearfully & wonderfully made".
God has a plan for Michael & I pray that it will be revealed to you in the days ahead.
May you rest in the peace & love of our Lord at this time.

lisa dean said...

You have just told the story of my life almost four years ago verbatim (except the Maui part :) )! My baby, Gracie, was born with the same complications and diagnosis at 29 weeks. We were so scared, but God saw fit to comfort us and show us that He had just given us a miracle that would allow us to see HIM every day! Our Gracie has blessed us and everyone around her beyond measure. We have raised her no different than her sister and she is thriving. Remember that God means everything for good for His children. It may be difficult now, but very soon, you will see His magnificent work and wonder how the earth ever rotated without your precious Michael! may God comfort and bless you. If you want to see my miracle Gracie, you can find me on facebook as Lisa Minton Dean. God Bless!

Victoria said...

I'm not a huge commenter on blogs of strangers, but you need to understand the inspiration you and Sarah are to so many, myself included. To see this sort of faith in the face of less-than-perfect circumstances is incredible and beyond uplifting. In 1 Peter 3, we're reminded to set apart Christ as Lord and to have an answer for those who doubt us. The passage also reminds us "it is better, if it is God's will, to suffer for doing good than for doing evil for Christ died for sins once for all, the righteous for the unrighteous, to bring you to God..." Your family will remain in my prayers, and your faith and peace is a testament to God's love. Thank you for sharing your life and your faith and hope in Christ.

angie said...

God has not blessed you with one miracle baby, but with two. Michael will be your special personal angel to cheer you when you are sad, and to love you when you feel that no one else does. God doesn't make mistakes and the Bible says He giveth more grace...
This is your little miracle. I am praying for you and your family. <3:

Dee Gillespie said... I write this tears roll down my cheeks. I can only imagine the fear that is in your hearts but I strongly believe that God gives the children with the special needs to special people. God Bless your family. He will hold you all even when you don't know he is there.

Dee Gillespie said... I write this tears roll down my cheeks. I can only imagine the fear that is in your hearts but I strongly believe that God gives the children with the special needs to special people. God Bless your family. He will hold you all even when you don't know he is there.

Gen said...

I got tears as I read your post. Prayers for continued strength for you and your family, and praises to God for this wonderful gift He has given you! He is indeed a big God and knows the plans he has for you, trust Him!
Love and Peace.

Tracy1918 said...

My son was diagnosed was Type 1 Diabetes. I know what it's like to have a plan for your child and then you discover God has another plan. He will equip you and strengthen you on this journey. I will keep you in my prayers.

Donna said...

I found this blog today via a post on Facebook. I've been encouraged by reading your words.

My daughter has a lot of special needs including physical disabilities and low-functioning autism. Some days the struggles are overwhelming, and in those moments, I try desperately to remember that God is with us always. That is His promise.

I know the Shust family is dealing with many different emotions today as you each navigate this "new normal." My prayer is that God will provide you peace that passes all understanding, that He gives you strength to be still and know that He is God, and that Michael Aaron's heart is healed.

I often say that even though our daughter has very few words, God is speaking through her every day. I can't wait to read future blog posts by you as you share how Michael Aaron brings blessings to your family and glory to God!

Welcome to the world, Michael Aaron. You are fearfully and wonderfully made!

Donna Murray

Michelle said...

Aaron, I have been blessed and ministered to many times by your music. Thank you and God bless. Our youngest was born with Mosaic Down Syndrome (has a "normal" cell line as well) I love analogies and the Holland story really helped us begin to put things in perspective. There was NO info about this almost 18 years ago when he was born. We felt like we were stumbling and fumbling in the dark. But, God was and is the Light that guided us through things, One Step at a Time. God will give you, your wife and Michael (as well as the siblings) all you need exactly when you need it. May the Lord richly bless you Aaron. I will keep you and the family in my thoughts and prayers.

Nancy Staton James said...

Our plans are not usually God's plans. Congratulations on your little boy blessing. He will be and you will someday know just why he came to you as a special needs, maybe because you are more special parents? Love you to and your family and certainly God will strengthen you to do whatever lies ahead. You will NEVER be alone, even in the darkest of nights. What an amazing mighty God we serve and that has not and will not EVER change. ONE second at a time since it might be too much for one day at a time...

Anonymous said...

I was so impressed that as a worship leader who is already so well known would give himself and family to serve your local church - I felt it was such a prophetic statement of the Bridegroom's heart in this hour - believing worship in the local church is about to be majorly visited by the Lord this was how I connected with you than I read your story of your son and because I prayed and contended for IHOP's Media Director Jono Hall's son and he experienced miracle after miracle (their son had the same complications yours did) - thinking I would encourage you with his testimony if you hadn't heard of it already.... and then today...I saw it ...the real reason God led me to you....nothing I believe is an accident when our lives are His.
As a full time intercessory missionary at IHOP (International House of Prayer in Kansas City) I live in constant communion and worship before the Lord ministering to Him and partnering with His heart.. I have for the last 3 years been contending that EVERY child with down syndrome be healed starting with the orphans.
I KNOW it is NOT His will that any suffer and I choose to believe your son will NEVER suffer and His miracle will cause multitudes to know the power and glory of a risen Savior and King with whom no disease can stand including Down Syndrome - please let me tell you that God(in His wisdom before you even had need of an intercessor...He has sent you one to stand before Him 24/7 and contend for your sons complete healing because that is I believe the Fathers desire! I so hope you are in agreement! I love the power of the resurrection and more than anything I LOVE His children...He said suffer not them to come unto Me...I just feel so bold to send this post and share what I believe is His heart and now the burden I feel honored to carry!

Kathleen Quinn said...

Congratulations on the birth of your son! As the parent of a son with Fragile X, I can tell you that the 'highs and lows' are extra intense, but you will never be able to picture your life without him, and the joy he will bring to you will be insurmountable.

Nikhila Thomas said...

Wow that is such a great name to give that angel of yours..I don't comment much on posts but today I was going through a hard time emotionally and was hurting about so many things that happened in my life .... Felt sad..although I am a preacher, and a counselor.. I know God really has great expectations on u both..He loves u so much and he trusts u..i am going to pray for u guys k ..may the lord bless u and ur wife and may he strengthen u guys..what i love abt ur faith and ur honesty...i want the world to see that and know its okay to be scared because God is in control...
We do have a god of miracles and he will protect ur boys...
xoxo from Kuwait...

Mom of 4 said...

Praying for you guys right now - as I think the beginning is the most challenging. I have a child with Fragile X Syndrome. Huge surprise to us too - after 4 years of searching for answers and no known family diagnosis. There have been days that I have cried because I just could not have this challenging life anymore, but there are more days that I praise the Lord for the blessing of this incredible child - who has a purpose and a plan from the Lord.

I told God that I did not want an ordinary life but an extraordinary life, and that is what God has given to us. We have left the ordinary behind for this incredible journey - and you all will find it incredible. As you meet other families with children with special needs, they become your family, and you will minister to these people in a way that you never imagined. Your life and Michael's life will be a testimony of God's incredible love, grace and POWER!

Julia Wreyford said...

We miss you and Sarah and will be praying for you guys! Thank you for your words...this has put a lot of my own prayer requests into perspective. Bless you Aaron!!!

Susie Reed said...

Prayers for the surgery and infection. I'll tell you from personal experience that nothing compares to a person with Downs - How can something extra be a "defect"? - I am drawn to them like a moth to a flame. Never will you meet more open and honest and beautiful people. I had a cousin with Down's and he had more love for God and more love for other people than anyone I've ever met in my life. He was the embodiment of "Faith like a child" I've never experienced a purer love! You will get a trillion and five pieces of well-meaning advice from this second on - and take each one with a grain of salt. God gave you an amazing gift. And through that gift - you will be blessed beyond anything you could ever dream of!

A Family 2 Care 4 said...

What a perfectly made child you have. He is so blessed to have born to you and your wife. Trust that everything will be fine because God has prepared you all your life to welcome and love him and his brothers.
I wanted to post the Trip to Holland story because it really helped us when we learned our little grandson would be born with a life threatening disease. But you already have what you need to walk this new and different path. You have faith that our Heavenly Father has a wonderful plan for you and your family. I pray that you will discover this and rejoice in your new son over the next days, weeks and years.

Emma McGarity said...

Aaron, WOW, your head must be literally spinning, and I am sure you are riding an emotional roller coaster right now. I feel strangely encouraged to read this blog post simply because looking back at the events of the past few months I see God's hands all over this. The music He gave you for your most recent album is hopeful and encouraging and offers hope. Then touring with Downhere on the Called To Love Tour... I can't help but think back to the post Jeremy made about the Down's Syndrome boy that joined the stage while you were singing Mighty to Save. At the time of the post, I felt that God was using this to reach Jeremy. But looking back, I feel that this was also to prepare your heart for Michael

Prayers for you and your family as you navigate the journey God has laid before you.

Joy Portis said...

As the adoptive mom of a son with DS, let me congratulate you and tell you what a blessing you have in store. Can't wait to see how the Lord uses your family and your son for His glory and to bring awareness! You have been givien a precious gift!

Tiffany said...

A mutual friend sent me over oldest girl, Elise, also had a surprise Downs diagnosis. She has been a non-stop blessing in our life, I know your Michael will be for you as well.

If I can answer anything,

My blog on my Elise:

You are in my prayers.

Debbie said...

Praying for you and your family. God has a special plan for each of you.

Rebecca Mecomber said...

I wonder if God gives us Christians the weaker babies just because He knows we will carry them through and love them with His love. Such kids are so special to Him, just like your blog post title says! You and your wife are very blessed, Aaron. My heart goes out to you as Michael suffers health problems. God is able to heal him and to BE WITH YOU guys as you raise him up. Don't be discouraged. Your baby is absolutely BEAUTIFUL (thanks for showing us his photo!!!) and he will be a delight to your hearts!

Owlhaven said...

"The peace that passes understanding is my song..."
Two of my sons and I are singing your song in church tomorrow. I know that the truth of that message ministers to me, and I pray it does to you. Congratulations on your beautiful son, and I pray he will soon be healthy and strong.

Mary, momma to many

Lizzie's Thoughts on Life said...

Always remember you're not alone. If you feel you have too much for your family to handle, remember your family is much bigger than 5 people. You can see 51 additional family members who have posted right here. :) I pray for many blessings, joy, and strength for the days and years to come.

Kayla Henretty-Sniezek said...

Aaron, I do not know why God has chosen your little boy but I can tell you from experience as I take care of Ford on a daily basis that he knows what he is doing. God has chosen you and Sarah to be Michaels parents and he will teach you so many things every day. When Ford was diganosed with SMA and the doctors told us his best chance was 2 years I can't explain what went through my head....but God knows his perfect plan. We may never know what that is on this Earth but continue to trust his guidance. Love you guys!!! Praying for your new little one, Sarah and the rest of your family.

Penny's Peeps said...

Welcome to our little "extra chromosome" club.... We were also shocked at the birth of our third being born with Down syndrome. He is now 2 1/2 and beings great joy to everyone he meets! our God will give you all you need in the days to come. The feelings you are having....whatever they might be....are normal..... Praying for you all during this time.... I blog about our life too!

Anne said...

I've never left a comment before, but your familiar feeling post makes me want to run to you and HUG you! I have a 7 year old son--Joseph--with Down syndrome and he is God's perfect creation and my entire family's joy. He is funny and smart and understands Kingdom wisdom in a way most of us cannot. Trust Him who created Michael Aaron according to His plan. Hold on to His Word..John 9:3, Mark 10:15, Jeremiah 1:5, Psalm 139:13-14, Gen 1:27, 1 Cor. 12:12 are all verses that helped me when I was where you are. I'm praying with you! God's perfect plan is revealing itself to you in a WONDERFUL way! Michael is so beautiful.

Anne in Alabama

Ilisa Ailts said...

Congratulations! Our 3rd son, Calvin, also has Down syndrome and a repaired heart. And he is awesome, though it took us awhile to go through what is now your turn :) Check out our little blog for pics and such if you'd like.

Joan said...

May our Lord and Savior bless you and your wife with the strength and patience to love and care for your children. We are confident He will, because God is love, and He love you and your family. God bless you for the music you give the world, it gives so many us hope and peace. God bless your you and your family with an overflowing love, healing, health, peace, and happiness. I ask these things for you in the precious name of our loving Savior Jesus Christ.

Joan said...

May our Lord and Savior bless you and your wife with the strength and patience to love and care for your children. We are confident He will, because God is love, and He love you and your family. God bless you for the music you give the world, it gives so many us hope and peace. God bless your you and your family with an overflowing love, healing, health, peace, and happiness. I ask these things for you in the precious name of our loving Savior Jesus Christ.

Melody Joy King said...

What and extraordinary gift and sacred trust you and your family have been given. Please know that you all will be in my prayers!

Mary said...

Congratulations on the birth of your son! He is perfect, and will bring you more joy than you can possibly imagine now. Our 5th child was born 21 years ago with Down syndrome. We have gone on to adopt 4 more children with Down syndrome, including two who just arrived in our family a month ago from Bulgaria.
Hard? Yep! More blessings than ever? YOU BET!
It is difficult right now. Many of us understand your pain. But, know that parenting a child with DS is so much like parenting any other child. You get to know YOUR child, you get to know what he likes and doesn't like, and you go from there. One day, soon, you will look at him, and see "just" your perfect son, and for a moment, "forget" that he has DS!
Welcome to Holland! The Weather is great here!
Mary Stolz

Katrina {In Katrina's Kitchen} said...

Chuck and I send our love and prayers. Welcome, sweet Michael. (Chuck & Katrina Bahl)

Anonymous said...

As the mother of a 9 year old with Down Syndrome, let me just say that you are beginning an incredible journey. It will be the most difficult, yet the most rewarding experience of your life. Like your precious Michael, our Caleb had heart surgery for AV Canal Repair at 5 months. You would never know now how sick he was that first year. He has taught us more about God's love & forgiveness than any sermon or Bible study ever could. God's strength to you as you raise this special gift.

lisa said...


lisa said...

praying for you and your family

momofone said...

While I understand the shock of having a child with Down Syndrome, know that God has a plan. My son is 18 and a blessing to us and his community. And we all jokingly say he has a straight line to God because when he prays, things happen. Is it an easy journey? no. Lots of ups and downs (no pun intended). But as we look back, we see GOd's hand at every step. I just told a friend that God has been one step ahead of our needs. If you live in Georgia, he qualifies for Katie Beckett medicaid which will help with medical costs. Love your son. Treat him like a "normal" child. If you expect more of them, they will rise to the occassion. Watch out though, they are sly, tricky children! And yes, they are lazy by nature. Help Michael to be independent from the very beginning. Oh, Babies Can't Wait is another program to help with therapies from birth to three. May God give you the strength you need to walk this road!

Bev said...

Aaron, God bless you and your family. Once you get accustomed to dealing with Michael's special needs, you are going to find that you have the sweetest, most loving little guy in the world. I have a cousin with DS, and I've worked in an office with a guy who had it. Wonderful, loving people!

The Lord has blessed you, because no matter the difficulties of learning to parent Michael, the rewards will be so much larger!

Janet said...

Congratulations on the arrival of your sweet baby boy. Welcome Michael Aaron! My prayers are with you and your family as you travel this unexpected journey.

Susan O'Leary said...


We are so sorry that you are going through this. Please know that you and your family are in our prayers. You have such a beautiful testimony. Your baby is beautiful and you can be sure that God has not given you more than you can handle although it may seem like it right now.

The O'Leary Family (Patrick's parents)

Anonymous said...

Hi Aaron
My name is Wendi, I will be adding you and your family to my prayer list. I'm not sure where you live but there is a program called Stephen Ministry that would be happy to serve you. This ministry provides lay Christian caregivers to listen and pray for you. I'll be happy to help you find one in your area or you can contact Stephen Ministries directly. They are based in St. Louis MO and there website is You can speak to anyone there and they will give you local contact information. There is no cost, it is completely confidential and could provide someone for you and/or your wife. Confidetially is a major priority and a must.
Prayers to you and your family.

Cheri said...

The Shust family is in my prayers as you navigate this new territory. Michael is a beautiful baby and I'm sure he will bring you much joy. I appreciate your transparency with your struggles and your hope in Christ.

Cari said...

Aaron & Sarah,

First off -- congratulations on the birth of your son. I say this with all sincerity as 18 years and 6 months ago (8/7/93) I gave birth to a beautiful baby boy that just happens to have Down Syndrome. I won't lie and say it is always easy or even fun but as my father told me the day after Nick's birth, God has a plan, we have to trust in that.

There will be days when you want to scream and cry and even wrestle with God over his plan for you and your child's life. There will be days when you will smile and laugh and praise God for all that has happen in your life and your child's life.

Reach out there are many of us who have walked this path before and we love to help others along the path.

Praying for you as you and your family begins this new adventure.

Vanessa Tachenko said...

Praying for your family!

kjmesa said...

We also have three boys. Our middle son, Lucas, has DS. He is 5 years old. He is an amazing baby boy who God has blessed us with. Challenges? Yes, many. Worthwhile and fantastic? YES! We can't imagine our lives without him. Have you read the poem, "Trip to Holland." If not, look it up. It tells our story perfectly.

Find your local DS support group. They will provide a lot of help, guidance, peace, and love for your family. You are not alone. We are on the journey with you. Please feel free to email me if you would like.

God bless you and your family.

Robin said...

This blog is a must read. It is written so beautifully, and their Down Syndrome daughter is one of the most beautiful babies I've ever seen. I have watched her grow from a newborn to a two year old on this blog. Click on "start here if you're new" and you will be in tears in no time. And then you can look at the rest of the blog and see what blessings you have to look forward to. Michael is beautiful, and I pray his heart issues will be resolved easily.

Sunday said...

As a special needs parent 2 times over I would strongly urge you to check out This is a father of an infant boy with down syndrome and he is also a pastor. I know you will be blessed by what you read and see.

I am praying for your your son, you and your wife during this time of transformation

Leslie said...

First of all - Congratulations!!!

I understand your feelings and I remember feeling much the same way 5 years ago when we had a sweet little girl with Down syndrome. She needed heart surgery at 4 months of age.

I wish I had words that could make this all easier for you, but wanted to tell you that after a hard beginning, the road has been filled with more joy than I could have imagined! She is a delight and joy and I know your sweet boy will be as well! God has not only taught me so much through her life, but has also used her to bring a sweetness that I hadn't known before her. Praying for you and praising God for the mighty works He is doing and is going to do!

JoeyMike36 said...

God bless you and your wife & your whole family in this new experience. I just saw the movie "Joyful Noise" and there was a scene between Queen Latifah & her special needs child. He said (and I'm paraphrasing somewhat), "If you love me, you should hate God for how he made me." She hugged him and fiercely said, "God doesn't make mistakes and He's not going to start with you." That just touched me so deeply. God's only going to use you (and your family) through this new experience. I am the youngest child of my parents. Each one of us has had special needs of one kind or another. My late brother had Diabetes. My sister is mildly retarded & has cerebral palsy. I had Juvenile Rheumatoid Arthritis. The opportunities we've had to testify to God's greatness are all because of our disabilities. Again, May God bless you all through this and may you be able to testify to His Greatness.

JoeyMike36 said...

God bless you and your wife & your whole family in this new experience. I just saw the movie "Joyful Noise" and there was a scene between Queen Latifah & her special needs child. He said (and I'm paraphrasing somewhat), "If you love me, you should hate God for how he made me." She hugged him and fiercely said, "God doesn't make mistakes and He's not going to start with you." That just touched me so deeply. God's only going to use you (and your family) through this new experience. I am the youngest child of my parents. Each one of us has had special needs of one kind or another. My late brother had Diabetes. My sister is mildly retarded & has cerebral palsy. I had Juvenile Rheumatoid Arthritis. The opportunities we've had to testify to God's greatness are all because of our disabilities. Again, May God bless you all through this and may you be able to testify to His Greatness.

Anonymous said...

There is absolutely nothing like hearing the doctor say your child has Downs Syndrome. Nothing can prepare you for that. We were told that at a 22 week sonogram with my twin boys so we had time to digest the information. The more I have read about DS and interacted with DS kids, the less I worry.
Take one day at a time. Remember to breathe. You are being uplifted before the throne by many. And congratulations on Michael. he's beautiful!

Jen said...

Isn't it crazy how God brings about His fame through children?! I do trust Him alone with you guys. he trusts you two to parent this sweet bundle and that is huge. We were at Toccoa with you Aaron and have been watching God unfold your story...this is a precious chapter and we are praying for hope and mercy as you take each moment for what it is. he is a sweet little lamb!
Jen Howell

lwiese said...

Michael Aaron is a beautiful baby.

EmilyBumbaloughCox said...

Congratulations!! I have a son Cooper with Down Syndrome. He is a miracle. He was never suppose to live. He too had av canal and was repaired at 3 months. He was in the hospital prior to that because his heart was so weak, but we made it and oh HOW I PRAISE GOD DAILY. Cooper is the best blessing!

sturleyknight said...

Praying for you all- our son was born a year ago with an AV Canal defect after a pregnancy that showed no signs of it. While, Landon does not have Down's, he did spend some time in the NICU after birth. He had open heart surgery to repair the defect at 3 months of age and at this point, he shouldn't need another one after a very successful, first surgery. We feel for you and know the vast range of emotions you are going through. He is there with you and I pray He makes himself very evident to you and your family.

I was asked what was the biggest thing I learned through it all and I would have to say that it is this... "That no matter what, God CAN be trusted with our children. The One who made that precious little heart also holds it."

Donna (Dodge) Rey said...

Aaron, with tears in my eyes I am praying for all of you today. I was out running errands this morning and I heard you in the radio, and I thanked God for your ministry, then I saw this news. I think you know our son lives with Jesus, and God has paved that path for us. We have learned so much and have been able to use the to help so many people. Just when you thought you knew what Gods' plan was for you to reach people with His good news, the rules change and GOd gives you a different path. We are praying for your family and we know where your hope is as well as you do!
Love, Donna (Dodge) and Omar Rey

Telisha Garris said...

While parts of your hearts may be hurting and you are treading once again into the unknown and unexpected.
Your baby - your joy, someone who in a year you won't know how you ever lived without - survived!
Small, born early, pending surgery little M.A.S is a survivor!
I will pray for his surgery as well as your hearts - never fear God knows what is best - yes your lives will never be the same but any baby would do that!
May the Lord guide you and keep you, strengthen you and bless you.

Dana said...

May God bless you and your family. Your son is a gift from God, who will touch the lives of many people. I prayer God will lay his healing hands on your son as his heart heals. Thoughts and prayers are with you.

karen spikes said...

congratulations are in order!! The lyrics you sang ministerd to my heart when our son Grady was born with Down Syndrome 4 years ago..I am not skilled to understand, what God has willed , what God has planned..' His plan is perfect and good and full of creativity . I remember feeling the loss of a dream, and the fear of the uncertainty will fade. it is a journey, and you are not alone. Michael is beautiful and will change your heart forever. Grady is the middle of our 3 boys, and greets us all every morning with a Good Morning, then a thank you . Every morning ! Congrats from The Spikes :)

Ashley said...

My niece was born a year ago this week. She also has down syndrome. She is a joy to have! After you get through the scariness of this surgery and get adjusted to life with 3 children I am confident that you will feel joy for his life. I know you do feel joy. It also sadness, fear, and honestly probably anger. Those feelings are NORMAL and you and your family NEEDS to experience these feelings honestly.
I told my brother this the day after she was born: Ava has down syndrome. Yes, it's true. But she is MORE than that. She is a new baby I this world. YOUR baby girl. You are worried about the future....but right now, she is just like any other baby. She needs to be held, loved, fed, bathed, sang to, rocked,...and that's what you need to worry about RIGHT NOW. We aren't promised we are wasting our energy on it. Just treat her like a baby. And, when you do think about how she will develop prematurely and you are tempted to compare her with her older brother....its okay. Any parent does that for any child after a first born. It's not weird. So, dont be guilty about this either!

The best thing I can tell you to do is to read Kelle Hamptons blog:

Enjoying the small things.

It will. Very much. Encourage you.


Samantha said...

Congratulations!!! He is such a beautiful baby. Wish he will be home with his family soon. My son was born in Aug 2011 and he stayed in nicu for a month. He is 5 weeks earlier and has trisomy 21. I cried and cried and wanted someone to tell me what I should expect for my son's futures. I asked so many times why me why my son... I am his advocate and we work with occupational therapy to help him. Early intervention can make a big difference. I want people know DS kids are not special. They are just like other kids without chromosome problems. They should not be stereotyped.

Carlee said...

Congratulations and prayers all in one fell swoop! Michael is beautiful- a perfect picture of the boy God made him to be.

I wanted to share with you the blog of Kelle Hampton, who has two daughters. She is an amazing photographer and regularly shares photos and stories of their everyday adventures. Her younger daughter, Nella, has Down Syndrome as well. I hope you can find some comfort and hope in her words and pictures.

Ashley said...

I just typed a very long message to you!....but then it got deleted.....but the point is this:
1. A year ago my niece was born with down syndrome.
2. Our family grieved through it too.
3. It is a normal and healthy process to go through.
4. Your pain, anger, sadness, fear, will get better.
5. The Lord is NOT going away from you now, or ever.
6. You will feel joy. You do feel it. Give yourself time.
7. Be patient with your wife and family. They are grieving in their own way and in their own time.
8 Remember not everyone grieves the same way.
9.. Find families who can help walk you through some things (infant/toddler connection, Medicaid, etc)
10. Read Kelle Hamptons blog: It's called: enjoying the small things. Her daughter has down syndrome and the blog is so very well done.

11. Know you are not alone. Look at all the responses already! People who have walked this road or similar to it can understand your fears, sadness, etc. if anyone criticizes you for how you are voicing this know that they aren't you. So don't feel guilty.

pinkdaisyjane said...

Rick Smith at is an incredible resource and encouragement. If you have a moment check out his blog and his amazing little son, Noah.

Many blessings on your gorgeous son!

Kim said...

First of all... Congratulations! God has entrusted you with the care of a little soul that is beautiful beyond words. Through your son, He will teach you things you can't imagine, and you will get to see the world in a new and glorious way. You will be present at miracles and will marvel at the awesomeness of God. These things I know to be true. It has been almost 21 years since my son Greg was born with Down Syndrome and he continues to amaze me! For now, lean on our Heavenly Father. He is right by your side as surely as I am typing this message to you. When you are weary and need rest, ask God and He will send the angels to stand gaurd over Michael so that you may rest. Greg and I will be praying for Michael and your family.

Renee Swope said...

I'm so sorry for the sorrow, the sadness, the roller coaster of emotions from the sweetness of celebrating Michael's birth to the grief of what you had dreamed his birth and life would be like and now to be walking through so many unknowns. But I know your's and Sarah's hope and faith is rooted in a Savior who redeems, resurrects and restores. I have a feeling your little angel is going to bring you more joy than you've ever known.

We walked into the unknown of being the parents of a special needs child 6 months ago. Our little girl from Ethiopia is now 3 and cannot talk.We're still in the midst of testing and diagnosis so we have no idea what we're doing but I've never been more dependent on Jesus. Some days it's exhausting and extremely lonely but when I reach out or cry out for help - He comes. I know He will do the same for you and your family. Wish we could be there to serve you.

Please know our family is praying for yours!

The Swope family
Charlotte, NC

Beck Gambill said...

Aaron, I see it as such a sign of respect that God would entrust the precious gift of Michael into your family. I pray as you travel the parallel tracks of grief and joy that God's peace will rest on you. One of the most important life lessons I've learned came from my friend Jennifer who has Down syndrome.

Ryan said...

Welcome young one! God has created and chosen you to serve a great purpose in shining His Light in this dark, dim, dying world. Whether this be to show His great healing power, or something more, I shall pray each day that I will see your face next to the Lord our God's in the Wonderful Gates of Heaven!

Tealynn said...

Thank you for sharing your story. Congratulations on your new addition Michael Aaron, what a precious angel your family is again blessed with. I appreciate your music it is such an inspiration. God has blessed you with many gifts and I am certain Michael Aaron is yet another specail gift God has blessed you with, so you have that electric guitar waiting for him. I know you are fully aware that with God, ALL things are possible. With that said, I would like to share a story with you; just another inspirational story. Please copy and paste the link.
May God continue to bless you and your family as you are such a blessing to so many. Again, thank you.

Thrifty Mama said...

He's beautiful.

Ange said...

Welcome to Holland. We moved her almost five years ago and never looked back. You are starting the most amazing journey and I can't wait to read all about it.

LauraC said...

I am so excited for you! This is a journey that will open your eyes to a wonderful new world of hope, love, and amazement beyond your wildest dreams. We've adopted 6 kids and our youngest has Down Syndrome. He has made such a huge change in our lives and a day doesn't go by I don't thank God for bringing him to me. Please read this about how God chooses who He wants to be a parent to a special needs child.

Twilson9608 said...

I want to first congratulate you on the birth of your beautiful son, Michael. We have three girls here and our youngest, Vada, has Down syndrome as well. We found out half way into the pregnancy so we had our time to grieve what we thought we were losing and prepare for the worst but let me tell you how wrong we were. We hadn't lost anything and even on our worst days (like the surgeries) they don't compare to the good ones. Our daughter has changed our lives in the most amazing ways a single human being ever could. She has made us closer, stronger, wiser, more accepting and more grateful. She has taught us what beauty truly is, how to not give up and how to stand up for what is right. She has showed strength like I've never seen and finally, although I'm sure I'm leaving tons out, she has brought us closer to God. Your son will only be a blessing. He will do all of these things and more. He will reach his potential and he will make you proud! Doctors have a way of leaving the good and throwing our children into one lump some. The truth is our children don't get enough credit from the medical professionals so don't listen when they spit out all of their "dont's" Michael WILL don everything that he is intended to do. Love him support him and treat him like your other children. Don't second guess his abilities and don't let "don't"' "won't" or "can't" be words used often in reference to him. Things are going to be amazing. Congratulations again. I can't wait to read more about your little guy.

Ellen Stumbo said...

"You will experience shades of color you never knew were possible" from the Book Gifts:Mother's Reflect on How Their children with Down Syndrome enrich Their Lives, which I recommend you get!

It has been a true statement in the past 4 years! The best part is our Down syndrome community. As you can already see from the comments here, you won't have to do this alone! And you know what is so exciting...okay, you will discover this on your own, so I won't spoil that for you!

Congratulations, you have a beautiful baby boy! And all that you are feeling (good, bad, tears, fears) those are all normal, they are part of the process, they are part of the journey. There are so many blogs out there by parents that will inspire you and give you so much HOPE.

Oh how we love our little angel, but just beware, angels are rascals too!

jayna eitemiller said...

All three of my children have been born with a very rare genetic disorder, very similar to Downs and Autism. When my daughter, (our oldest) was born, I felt like I'd been gutted when they gave us the news. Charlotte spent a month in the NICU before coming home, and since she was three months old, she has continuous therapy. She is five years old now, and was recently diagnosed as intellectually disabled. I know what it is to mourn your expectations for your children, but I also know the grace that God has given us to hope in new expectations. Do not be afraid. God gives us good gifts in our children, really, really good gifts. Congratulations on your precious son. - Jayna (Stratton) Eitemiller

Mary Kubow said...

Dear Aaron and Sarah, the trials you have faced in recent years would have pushed many people AWAY from the Lord, but your response has been to DRAW CLOSER. And this is a great testimony of your knowledge of the Lord and your faithfulness to Him, as well as His faithfulness to you. Never underestimate the witness of God's power through your mortal beings! "To God alone be the glory!"

I have been sooooo encouraged by what the Lord is doing in and through you and your music. From your very first album, Aaron, God's Spirit was speaking to me, telling me that there is "something" in you that is very, very good! And now your blog entry is confirming the very nature of Christ in you. Yes, "To God alone be the glory!"

And now to encourage you both from Ephesians 6:10-18: "Finally, be strong in the Lord and in his mighty power. Put on the full armor of God so that you can take your stand against the devil’s schemes. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace. In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. Take the helmet of salvation and the sword of the Spirit, which is the word of God. And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the saints."

... I think I can hear another/a new song coming on! :)

Aaron and Sarah, may you be strengthened in and by God's mighty power!

God bless your family and ministry,

Mary K

P said...

Down came the rain, luckily you already had an arc- an intuitive set of weary but ready parents who are willing to be carried by their supporters and float at times. Now is that time, praying for the best medical attention and helpers for you. Down syndrome is a diagnosis, not a prognosis. Your son will play guitar and drums and whatever you need. And we will love and watch you all. We already do!

Lucas mom said...

Welcome to the world Michael !!!
I know where you are right now Aaron, it's like an emotional roller coaster !
My son Lucas was born with DS 2 years ago and had an open heart surgery at 84 days old .

Today he is a healthy beautiful boy and the absolute love and light of our life .
Michael will bring you so much joy .
Congratulations on your beautiful son !

No Greater Gift Mom said...

About 8 years ago, I knew that God was clearly calling us to adoption. We had 3 biological girls, but I just knew our family wasn't complete. Our story is long but I will say that we are now also parents of 2 INCREDIBLE little ones both rockin' a little something extra (Charlie age 2 and Celia 11 months)!! I was talking to someone when we first realized God was calling us to adopt a treasure with Down Syndrome, and she said something I will never forget. She said, "Elisabeth, you will experience colors of the rainbow you never knew existed." What a statement...full of love and life and hope! And a statement that has proven to be part of the story God is writing using our children as His disciples. He is allowing us to experience those colors of the rainbow we never knew even existed and we are so unworthy! Michael is a treasure, an angel here on earth. Our Father will use him in mighty ways!! CONGRATULATIONS!!! He is beautiful.

Arizona mom to eight said...

I will say a heartfelt congratulations to your family. A new baby is miraculous and your new son is truly a wonder and a joy. Life changes abruptly when you get the news, we did not know until our daughter was born either, she is 11 now. Those first few weeks were hard, the health issues are scary. We will keep your family in our prayers. Remember to reach out to your local Ds group, cultivate a support system, and enjoy that special little boy.

Jennie said...

Wow. What a blessing you have on your hands! Congratulations on the birth of Michael. My middle son, Micah, has designer genes too.

Personal experience: from the Holland poem... you know toward the end, where it says that the pain will "never, ever go away"? Well, I'm here to tell you that the pain DOES go away.

You will grieve the dreams you had for Michael and your family while he was in utero.

But though the new dreams you will have for Michael will be different, they will be just as significant.

And what a blessing that Sarah already has a "Mommy MD" from your experiences with Nick.
Seriously, you guys are going to rock this.

I'll be praying for Michael's health, specifically that the infection would be identified and quickly treated.
May God richly bless you on this journey.

Aimee said...

Aaron and Sarah, congratulations on beautiful baby Michael. As a mom of 4, one of which has severe special needs, I certainly understand all that you're going through right now. All of the emotions you're experiencing are very normal. I had many days when I thought the grief would swallow me up. 15 years later I can't honestly say our life seems really ''normal''! It does get easier. It does get better.

I will pray for baby Michael's surgery and for healing for his tiny body.

Another great blog if you need some more inspiration is
They are the Balsis family. They also had a surprise Down's baby that has blessed their life immeasurably, so much so, that they decided to adopt a little girl from Ukraine that also has Down Syndrome. One of her most recent posts shows her little girl reading to her! Love their blog!

Blessings you and your beautiful family!

Political Jules said...

You are the new parents of an angel with an extra chromosome. It was unexpected and I am sure you could use some love from the outside world. He looks precious. Praying for your strength and know we will love and pray you through short storm of tears. It will help you to see the other side of Holland. I wish I could tell you not to spend too much sadness in your worries, but you will figure it out. Precious potential love fixing to bloom from this family.

Amy Flege said...

congratulations on your beautiful baby boy... we too were in your same footsteps almost 6 years ago with the birth of our daughter..... she has brought us more joy than not.
your michael is perfect in every way, just how God intended him to be. just remind your self that you can have those same hopes and dreams for michael, he just may achieve them a little bit differently!!!!

Tara Marie said...

Welcome to the World Sweet Michael truly are a Blessing.

You will know exactly how to parent him, and he will bring such joy and amazement to your life.

One day he will be kyaking off of the coast of Maui with you.

Enjoy the is sure to be a magical one.

Many Blessings.

Peace and love, Tara Marie & Emma Sage and her family.

Kim C. said...

Congratulations on your beautiful son! You may not think you know how to parent a child with Ds, but you do - you love them just like you would your other sons. It's a shock at first, but then you will come to the realization that it's wonderfully ordinary with sprinkles of amazing. Our 14 month old daughter, Kaylen, has Ds and our family (she is our 4th child) can't remember what we did without her. Our 11 year old son is so enamored with her that he says she has "up" syndrome because he can see absolutely nothing wrong with her. Please know that God knit Michael Aaron together in just the pattern He wanted. The world sees it as a disability, but my heart wonders if it truly is, or whether I am the one with a disability instead of her. Welcome to an amazing journey. Your family will be in my prayers that you will fall absolutely in love with your child and your grieving will be thorough but short. Here are some websites to check out that focus on the parental side of things instead of just the 'informational side'...

Brittany D. said...

First of all, CONGRATULATIONS on the birth of your beautiful boy! Welcome to the Down syndrome community:) It may not seem like it now, but it's a beautiful place to be. My husband and I welcomed our Josiah last April and were also shocked to learn that he has Down syndrome. These early days for you and your wife are scary and confusing. I get that. I remember the moment we heard those words and it still hurts to think about. You will cry tears and wonder how you're going to do it, BUT that WILL pass...very soon. You are about to embark on the most joyful journey you could ever imagine. This little one will bring more love into your heart than you have ever experienced before. You will meet the most amazing, encouraging, generous, genuine families traveling this path with you and you will thank God that He chose you and your wife to raise Michael. He will teach you so much about true love-unconditional love...the kind of love that God has for His a way you've never seen it before. We will be praying for you as you adjust and process all that this means. I can't wait to see how God is going to work in you because of Michael! He is going to do something amazing! I'm sure you'll be bombarded with information, but if you'd like someone to talk to and offer some great resources, my husband and I would be honored to help! I'm also a music therapist and I'd love to share about that too. To God be the glory!

Jessica said...

So many people will tell you it's going to be ok. And it is! You have God on your side! Take time to love on him and grieve the loss of your perfect boy, and then one day you will wake up and SEE why he's in your world. The DS family is an amazing group to be part of. Praying and following.

Virginia's Mommy said...

Praying for you and your family! Michael is beautiful and I'm sure that he will be a blessing to everyone that he meets!

Mandy said...

He is beautiful and I want to encourage you with the news that down syndrome is an amazing gift from God. I know it may not feel like it right this moment, but I promise you it is. Here is a blog about a family who two years ago, today, found out their little girl was born with Down Syndrome:

Because of this family's journey and Patti's advocacy, our family is choosing to adopt 2 little boys with down syndrome, because we can't imagine a life not blessed by a child with down syndrome.

God knows you're grieving and that's okay. JOY is coming in the morning. We'll pray for Michael to grow strong quickly and for God to mend his heart.

melissamaren said...

My 19-mo. old daughter has Down syndrome and my cousin's 2-year old has EE. I just wanted to tell you that, while our lives do suck sometimes, life goes back to normal! You can do it!!! Please keep writing out your thoughts and feelings - it helps so much to get it out and the support of others reading is so amazing.

Congratulations on your gorgeous baby and welcome to the most awesome community of people you will ever meet.


momto6kids said...

Congratulations on the birth of Michael Aaron!!!!! He's perfect!! Absolutely beautiful!!

We were blessed 2.5 yrs ago with our 6th child, Justin, and he is also blessed with Ds. He had a Complete AV Canal which was repaired at 3 mos and now he is healthy as a horse! Michael will be too!!!

Parenting a child who has Ds is the exact same as parenting a child who does not have Ds in that you will address the symptoms of Ds like you would any other issue and continue on. It really is that simple. No fear. Jump right in, reach out to others who have been down this path and keep praising God for all He has given you.

Since the birth of our first son with Ds, we have been blessed with 4 more children, who also have Ds, through the miracle of adoption. We see our journey with Ds as a beautiful and amazing path that is similar to the scenic route you can take while going places. You are still going in the same direction, to the same place as before but now you are getting to enjoy going there on the amazingly awesome scenic route. Thus...the name of our blog...The Scenic Route. Take a peek at our journey with Ds if you get a chance at Yes, we started that blog 4 kids ago. LOL. GOD is so incredibly GOOD!!!

Congratulations once again on precious Michael!!!!!

Heidi Ehle said...

Welcome to the family!
This is a club that none of us would have chosen to belong to but once you're in it, I think you'll find that like the rest of us, you'll get so much more out of life because of being a member.
CONGRATS! He's a beautiful, perfect creation of God. :)

Melissa said...

Congratulations on the birth of your son! As a Mama to a little girl with Down syndrome. A little girl that has taught me SO much in just the year that I've been her Mama - I am so excited for the journey that you have been set on.

Downs Side Up said...

Welcome to the world new little person. Congratulations from your friends across the ocean.

Natural Mom said...

Congratulations on your beautiful son! My prayers are with you and the Doctors as your little one heals. May they find the infection soon. My husband and I are in the beginning stages of adopting a child or children with Down syndrome. We are excited about being a part of this special group of amazing people. If you get a free moment check out the blog It is about a family's journey with their biological daughter who has DS and also their journey to adopting another little girl with DS.

Mom with 4 Angels said...

God Bless you and your family during this difficult time. I know what it is like. I have 4 amazing gifts from God. One if them who us 7 with autism and one of them who is 11 with Aspergers. You will come to find out from doctors if in fact Michael does have Downs he will need lots if therapy ( speech, occupational, and physical) maybe not all of them. The best thing to do is find a good one. I work at Peachstate Therapy in Buford GA. We have so many kids that have Downs and it is amazing to see God working in their lifes as well as the families. These angels endure so much and I love watching their progress. With early intervention and the right therapies your angel will grow up to live a happy and productive life. May his strength and love be with you.

Stephanie @ Ralphcrew said...

Congratulations! What an extraordinary blessing you have received.

Gabriel's mom said...

Welcome to the world beautiful Michael and welcome to the family Shust family. The Down syndrome family is the largest closest family you never knew existed. When you are feeling low we are there to help lift you up. When you have a confusing medical situation we are there. In our family it is hard to be somewhere someone else hasn't already traveled. You are NEVER alone. Facebook has become out community home base. If they haven't already, friend requests will start to poor in. I know at this point you are in survival mode. Please don't hesitate to lean on us!
If you need some smiles you are more than welcome to check out my son Gabriel's blog. Gabriel is a three year old who had complete AVSD surgery when he was six months old. His story plays out every single day when with the assistance of pictures.

Lisa said...

Beautiful! What a precious gift Michael is! We just adopted our son from Bulgaria. He is seven and has Down Syndrome. He has been an incredible blessing to our family. We could not be more blessed.
Praying for your family!

Amy said...

Congratulations! I know that word may be a little difficult to hear right now as you are absorbing everything, especially grasping heart surgery and all, but do know your life has been enriched far more than you realize right now. You will realize it soon enough though. :) Evan rocked our world with a surprise DS diagnosis also, and while it was a hard pill to swallow at first, he has been SUCH a joy. We are SO blessed God called us to be his parents, and since he is so awesome we have been moved to adopt another child with DS. :) We hope to bring her home in the next few months.

Michael Aaron will remain in my prayers as he grows and gets through surgery. (family/DS blog) (adoption blog)

Heather and Suzanne said...

What a beautiful baby boy and so blessed to have such a wonderful family. We share in the joy of having a son with down syndrome, the road may seem rocky at first and believe me I understand completely the fears, and uncertainties you are facing, but PLEASE be reassured that your life will be more enriched and more "normal" than you think. Murphy, our son and Madden (my daughter who is 12 months younger) are bigger blessings than I could have ever imagined to pray for...please let me know if you need anything we are always here and are happy to know friends who share in our special gift...take a look when you have a minute!
Congratulations on your new baby! Enjoy every second....
Suzanne and Clay Culpepper
Memphis, TN

Abbie said...

Congratulations on the new addition! I will pray that the infection is quickly located and taken care of, and that Michael comes through any OHS without complication. My family was there, not all that long ago. This is a link to my sister's blog
We did know that Ollie had DS and would need OHS surgery before she was here. We all shared fears, wondered what Ollie would need and how our lives and hers would be different from the other children in the family. All our fears were in vain, she is one of our biggest blessings! If you are looking for encouragement and support please message us! We will be praying for you!


Ethan Underwood said...

You very succinctly described the same feelings I had when my daughter was born with Down Syndrome 9 years ago. We had no warnings, no indicative test results - just a surprise at birth.

I remember resenting all the sayings I then felt were trite about God having a special purpose for her, and He must have had some reason for allowing her to have Down Syndrome.

Finally, someone sent me a story about a family whose dream it was to go to France. They saved and saved and finally booked the trip. They boarded the airplane with great anticipation and could hardly make it through the flight.

When they got off the plane, however, they discovered they were not in France, but in Holland! Disappointed, they had no idea what had happened. After a while, though, they started to notice the beautiful tulips, buildings, and waters. They decided to make the best of the altered plan, and found they had discovered a love for a place they never planned to go.

A bit sappy, I know, but this story has stuck with me as we learned to love a situation I would not have chosen. I promise you will learn more about the nature of God from this special child than you feel like you can now.

Just know that God does have a purpose, it's OK to be disappointed for little while, but God asked you, of all people to care for that child, and that, while different than you planned, you are still in a great place.

Lorraine Cotten said...

Our son, James, is 11 and has DS. We found out soon after his birth and were scared as new parents that we wouldn't know what to do. God will give you all that you need to care for him. Don't be afraid to rely on the help of others.

Our son is not an angel all of the time any more than his younger sister is, but, he lives life to the fullest and everyone who meets him is affected by his joy. He just started drum lessons and will be acting in his school play (Music Man) soon. He's a fun, precious, little man and I am excited to see him grow up into a lovely human being. We truly feel blessed to have James.

Carissa said...

Congratulations! You have just been inducted into a huge family that is full of amazing people. I am not a direct part of this family, but I am an advocate for a ministry called Reece's Rainbow, who serves orphans with DS around the world. We hope to.adopt through the organization one day. One thing that strucjk my soul when I first became aware of it was that most of the families who are adopting kiddos with DS already have a biological child with DS. This immidiately made me think this must be something awesome!
You and your wife will grieve and that is totally normal! But Oh the JOY! The joy this little guy will bring!
There are many many blogs I could suggest. If you want more you can email me. But Nella's birthstory at is probably the best story I have ever read of the first emotions. She was right where you are two years ago.

Welcome to the world baby Michael, perfect creation of our almighty Father. Congrats big brother Nicky!

And to quote a song that is speaking to me a lot lately: "My hope is in you Lord, all day long! I WLL NOT BE SHAKEN by drought or storm! A PEACE THAT PASSES UNDERSTANDING IS MY SONG and I sing my hope is in you Lord!"

Meredith said...

Congratulations on your beautiful baby boy! We too were surprised by the unexpected blessing of a baby with down syndrome and an av canal defect. She was born early because od a lack of growth in utero and at 5 months and only 8 pounds had a successful open heart surgery. Though we didn't know then what God's plans were... Our beautiful Brianna just turned 6 last week, and God has used hr to open our hearts and minds. She is nos the proud sister to four more children with down syndrome, adopted in to our family because we heard God's call through her. We have also adopted a child with cerebral palsy. She was our second biological baby, and we had another sweet and healthy daughter 3 1/2 years later and are now waiting to welcome baby #9 due in late July. God's plans are not always our own, but they are always so much more wonderful than we could have dreamed up for ourselves! I will be praying for you all as you grieve the dreams that you dreamed for your son, and realize the potential that he still has to fulfill so man of them, in his own way and in his own timing. It's not an easy road at first, but once the health difficulties pass, and the heart surgery is over, then life begins to settle and the joy of the sweet baby that he is will fill your hearts and home for many many years! Congratulations again, and you will be in our family's prayers! Blessings to you all,

The Lehnick Family said...

First of all congrats on your beautiful baby boy! And what a beautiful post you wrote! We have 3 children and our youngest Brayden has designer genes too. He is 3 years old and the light of our lives...I can't imagine life without our little man...we found out prenatally so we too had some time to go through the grieving process of what our dreams were for Brayden but after went through that which was a short time we realized our dreams really didn't change much. We want a great life for him as we do our other two children... He has taught us so much and we have met soooo many amazing families along the way! Praying for you at this time and know there are soapy families waiting to welcome him to our DS community!

Holly Fedele said...

Hello Shust Family! Welcome to the Down syndrome family! Welcome to the world precious Michael Aaron!!

Congratulations on the birth of your son, he is absolutely beautiful!

I am sorry for the loss of the child you thought you were having. I remember that pain well as my own child with Ds is three years old now. I can promise you that after an undetermined amount of time, you will not want to hear "I'm sorry" because you will no longer grieve and there will be nothing to be sorry about. But for now, you have every right to feel that way, and it is a normal and healthy way to feel.

I often call Trent "the blessing I didn't know I wanted and certainly didn't know I needed." But that is what he is. God smiled on me the day He chose me to be Trent's mom. I never used the word "joy" much before Trent, but now it is the only word that fits. The amount of pure, unabashed joy in my life simply amazes me. I weep happy tears some days because of it.

I look forward to following your blog. Please continue to be as honest as you have in this post. It will help your new extended family help you work through the familiar emotions. I had so much support during Trent's open heart surgery and other hospitalizations, and it made such a difference.

Again, congratulations to your lovely family!

Kelly said...

Welcome to our DS family! With 3 kids with special needs, through the beauty of adoption, I can say the beauty and joy and love this little one will bring into your life will be almost to much for earthly words!

A big congratulations. Michael is adorable!

Stricklin said...

I have 4 children. I believe all children are 'special needs' in some way. My son Sawyer has Down syndrome. Such a special blessing he is. Congratulations on such a beautiful new baby boy.


Rachel said...

Congratulations on your little one! He's going to bless your life more than you could have ever imagined. I have a 4 year old with down syndrome, and he's the most amazing person I've ever known. In your spare time, (ha!) check out There's hundreds of parents there who know exactly what you're going through and you can read all about heart surgery experiences. It helped so much before my son's surgery.
Enjoy your little man, I hope his infection is healed soon! Congrats!

Kim said...

Aaron and family, my name is Kim and I have a child with Down Syndrome. He's almost 2 and I can say without a shadow of a doubt that God has a plan. This child belongs in our family. He was made for our family. He fits right in and he's like a healing balm to our home. Yes, I was dazed and confused, calloused and bruised in the beginning.... but you have a wonderful life ahead with a child you will adore and who will adore you like none of your other children have. Whether you know it now or not, you are blessed. I have recently come to know someone else in the Christian music world who is in the same boat as you... Do you know Nicol Sponberg... formerly of Selah? She recently gave birth to a daughter who also has DS. If you know her, get in contact with her... it would be a great help to you both. Tell her Kim McGuffey sent you! Also, Jeremy Thiessen, the drummer for Downhere, has a 3 year old son with DS. You are not alone!!!

Mommyto2 said...

We have 2 angels with Down syndrome. God has given you an angel. There is a great support group in the Down syndrome community. Get connected and they will help so much. Feel free to contact me too.

Congratulations! He is adorable!


Lynette@ A Hodge Podge Of Randomness said...

Congratulations and welcome beautiful Michael!

We were blessed with our Levia Joy on Mother's Day last year and were surprised to receive a diagnosis of Down syndrome and complete AV canal defect. The first few weeks and months were filled with more than we thought we could handle (open heart surgery at 5 months) but we've held fast to the promise that God sees the beginning and the end and knows what blessings she will bring in this life.

Robin Z said...

Congratulations!!!!! Michael is absolutely adorable :) Me and my family will be praying that his health issues resolve quickly and he can come home with you soon. My oldest son, Caleb, just turned five and also has Down syndrome, and I have been so very, very blessed that God brought him into our lives. I have learned so much about people, relationships, prayer and God's love through Caleb and having him has made me a better person. Enjoy that precious little baby of yours and congratulations again!

The Sanchez Family said...

CONGRATS on your third baby boy Michael! Our third son Joaquin also blessed us with his extra chromosome and we went through the same shock and celebration and thought we had to quickly change our hopes and dreams for us. Little did we know, Joaquin would knock our socks off and complete our family in a way only God knew. Joaquin is the light and joy of our lives and no dreams of ours need adjusting...our boy will and can be whatever he wants to be! Praying for you and your family and that Michael heals quickly! Bless you all! We blogged the first two years of Joaquin's life at and then started a few new blogs since Joaquin inspired us to adopt a baby girl with DS from Ukraine through Reece's Rainbow Now our family is complete and we are the Sanchez Six. You will love the Down syndrome community. So much support and guidance here for you! Welcome and CONGRATS again!!!!

Anonymous said...

Aaron what can I say in light of what every one else has already said. I am so very sorry, that it is happening again to your family. My heart cries out for God, to heal Michael. One thing I know and that is prayers are very POWERFUL, and Michael is God's child.
When a family member has an illness, the entire family can be affected. The way that the illness is dealt with has an affect on the entire family. Some parents feel that it is best to discuss the illness as little as possible with their children because they don't want to worry them. This can often have the opposite effect. Because the children know something is going on, but they don't know what, it often feels more scary for them. It is often best to give them as much information as they ask for. In this way they will feel a part of what is going on.

Aaron & Sarah,

If I had one last wish to make it would have to be,
That God would heal Michael and give his pain to me.

It makes me so sad to see you so sick,
I wonder why you were god's pick?

He did not come on a white horse, with armor shining bright
He simply was born in the wee hours of the morn

He came to fill your life with a glorious loving light,
So my tears will not be falling like warm summer rain

You will destroy the enemy and claim back your precious gift,
Your little hero will climb in your arms, and you will rock him to sleep

There is nothing greater than this moment in time
Thank you Lord, for Michael, that they will have him for a lifetime.

My prayers will be for you and your family always Aaron. Your friend, Starla

Aaron Shust said...

Healing and Life. Your comments are bringing us Healing and Life. :)

Honey said...

I have a 5 year old with Down Syndrome, and, like you, his older brother battles a rare disease that can be overwhelming at times. The beginning is hard. We did not know before our son was born and we had to go through a process of coming to terms with the change in our lives. I found a quote from Mother Teresa that said "I know God will not give me anything I can't handle. I just wish that He didn't trust me so much" Well, I'm glad that he trusted me, because my son is such a blessing. The way people respond to him, I know that it is a God thing. Prayers are going up for your family. He is a beautiful baby!

The Priests are Growing! said...

There is no need to give up any hopes and dreams. Because he is capable of achieving them all. Our Artem (DS) has exceeded every expectation and is constantly showing us that he is capable of anything. Don't be disappointed, I think you will soon find how blessed you are.

Kathy said...

Please know that we are praying for you, your wife, your precious baby, your other sons and the medical professionals caring for your son. I sobbed when I read your I was holding our daughter, Kara, who will be nine years old tomorrow. She had just given me some of the biggest hugs and was sitting on my lap as I was reading. You see, Kara was born nine years ago with DS and with duodenal atresia and av canal defect. Our journey hasn't always been easy but we share with others that she is truly a blessing. God has truly shown us his present-day miracles, his grace, his mercy, his presence, his peace that truly passes all understanding. I could go on and on but I know you're getting lots of messages so just know that there are many who are praying for you. Oh - and I cried yesterday too when I saw Joyce Meyer's quote - brings a whole new meaning. :)



Dashers said...

Five years ago we gave birth to a little girl with DS. She had open heart surgery when she was three months old. Five years down the road I now realize that Down syndrome is not a negative thing! We have been so programed in our society to fear that diagnoses! Your son will do most of the things you have been dreaming he will do! We adopted another child with DS in 2011 and plan to adopt another this year. Children with DS usually handle heart surgery very well. It is not easy at first while you work through their health issues but it does get better and it is worth it! Amy

JaneeNoel said...

Just over a year ago, my husband and I adopted a little girl with Down syndrome. She makes our lives more beautiful every single day. You will be blessed in ways you can't imagine! Congratulations on your beautiful, perfect son.

Patti said...

Just wanted to stop by and tell you a huge CONGRATULATIONS- our Lily was born two years ago tomorrow and she has brought us more joy and cause to celebrate than we ever knew possible. You have every reason to celebrate, and although things may seem uncertain right now, you just enjoy your baby and leave all the what-ifs and how-can-we's till another day. Enjoy, enjoy, enjoy. Many hugs to your sweet family from ours. ~Lily's mama

Jodi said...

Your heart is beautiful and it will grow to this challenge, as it has for many before this. This gift will change you in ways you will fight and question, but it will change you in a way that will make you so much closer to God. Only WITH God can you face such a journey and learn the true joy that comes from a child who needs you more than a typical child. This Gift was custom-made by God. It may not be the gift you thought you were getting and it may not be what you knew was the perfect gift, but there are no gift receipts for gifts from God. He knows the perfect gift. Always. You will find this gift will be an eternally perfect fit and one you will never dream of exchanging. Even when the gift makes you cry and makes your heart hurt with fear and lack of understanding, you will know your heart was made for this perfect gift. Cling tight to God, accept His hand to guide you, and reach out to others who have walked this path before you as they will share with you the joy you have yet to know.

Cheri said...

First and foremost..... congratulations, Michael is absolutely beautiful!! What an incredible blessing he is! Welcome to the world baby Michael! ...and Aaron, I want to welcome you and your family to an amazing community, one I never knew I wanted to be a part of but one I would now never trade for the world!

I got a lump in my throat when I read your blog post... because I so vividly remember those first raw feelings you wrote of, when my son Reid was born 5 years ago with Down syndrome.

I also wanted to share with you the lyrics of the VERY FIRST song that played on the radio as we were leaving the hospital to bring our son home. We have no doubt that God orchestrated the timing of that song... and needless to say both my husband and I had pools of tears running down our cheeks as we listened (it's a wonder we all made it home safe) ;)

Take My Hand ~ by The Kry

I know there are times
your dreams turn to dust
you wonder as you cry
why it has to hurt so much
give Me all your sadness
someday you will know the reason why
wih a child-like heart
simply put your hope in Me

take My hand and walk where I lead
keep your eyes on Me alone
don't you say why were the old days' better
just because you're scared of the unknown
take My hand and walk

don't live in the past
cause yesterday's gone
wishing memories would last
you're afraid to carry on
you don't know what's comin'
but you know the one who holds tomorrow
I will be your guide
take you through the night
if you keep your eyes on Me

take My hand and walk where I lead
keep your eyes on me alone
don't you say why were the old days better
just because you're scared of the unknown
take My hand and walk where I lead
you will never be alone
faith is to be sure of what you hope for
and the evidence of things unseen
so take My hand and walk

just like a child
holding daddy's hand
don't let go of mine
you know you can't stand on your own

Repeat chorus

....Aaron, I have no doubt that Michael will be an inspiration for YOUR music and I for one cannot wait to hear it! Praying for peace in your hearts today... and specifically for Michael's little heart and the doctors who will be overseeing his care!


cara said...

Dear Aaron,

I just found your blog through a Facebook link. I had to comment because we also have a son with down syndrome. He is also our third boy. His name is Benji- Benjamin Noah. We also have three daughters. It is obvious that you know God and are giving glory to Him. I am SO glad that the Lord is carrying your wife with a perfect Scripture. I love how God uses His Word to encourage and uplift us and carry us through everyday. I will pray right now for his heart and the infection in his precious body. Our son was also born with a hole in his heart. I just want to encourage you now that this little boy is going to bless you all more than you will ever know. That special extra chromosome is a gift from the Lord. He is going to bring SO much joy to your family, and you will be in awe of him. I know things are difficult now, especially with the health complications that come with this. But there is sunshine, and God created him perfectly and wonderfully in her womb. There is no mistake here, and you all will be wonderful parents to this sweet boy. May His unfailing love surround you all right now. Much love to your family.

Eileen said...

Dear Sarah and Aaron,
Congratulations on the birth of Michael Aaron! He is beautiful! There is no way for you to know this now, but believe me when I say that little Michael will give you more joy than you ever thought possible, and you will have difficulty expressing to others your love for him with human words.

It is normal to feel fear and sadness when you get the diagnosis, so let yourselves feel that sadness, cry with each other if that is what you feel you need to do. However, you will find that the reality of having a baby with Down sydnrome is nothing like the fear, and your baby boy will transform your sadness to joy.

Also remember that right now your baby boy is just a baby and only needs the things that all babies need: To be loved, fed, loved, diapered, loved, bathed, loved, carressed, loved.....And any challenges that you might face won't happen all at once. You will go through it gradually. Of coure, the heart issue is something that needs to be watched and any other health problems he may have, but don't worry about his future; he will most likely surprise you time and time again.

My daughter had an AV canal defect also. She had surgery at 3-1/2 months. It went very well, and she has been healthy for 13 years now. She goes for an annual checkup with her cardiologist, and will likely never need another surgery.

I hope this is of some encouragment to you. God has given you a great gift, though it may not seem that way right now. But you will see that very clearly in time. Congratulations on your beautiful baby boy!


Jim and April said...

wow. Thanks for your transparent heart. Many cheesey sayings or verses that I would say so fast or skip over my life changed completely for me too when we lost our Annabelle. Michael is precious and I am excited to see what God does through and in Him for His glory!

Amy said...

Dear Shust Family,
Congratulations on the arrival of precious Michael! We are the blessed parents of 10 children, 4 of whom have Down syndrome. They have been a blessing beyond anything we could have imagined! 2 of our sons had corrective heart surgery as infants and they are healthy active boys now (ages 8 & 13). Praying for precious Michael and your entire family.

ChristineE Johnson said...

When I read your post about Michael I couldn't help but think about Matthew West's song "Strong Enough" God thinks very highly of you and your wife because He thinks your strong enough to go through what He is allowing in your life. Remembering that the Bible says We can do ALL things THROUGH Christ Who gives us strength. Our strength comes from The Lord! You have many stories to share about your family. Whether its through songs or through blogs, God will show Himself Strong in your lives! Your testimonies will be helping those who are struggling with their faith in God because they may see their situation as a punishment instead of a blessing! God wants to continue to reveal Himself to and through you and your family as you already know!
May God continue to richly bless you as you continue to touch so many lives for Christ!

Deborah said...

Welcome precious Michael!! Your family will be blessed by him and all he meets. Ou family has been blessed by the adoption of a precious baby girl born with Down syndrome and had surgery at 4 days old for a blocked intestine. Janae is now 3 years old and amazing. We again were blessed with the adoption of a sweet baby boy born with Down syndrome- he had open heart surgery at 4 months old for Tetralogy of Fallot. Jamin is now 16 ,months old and loving as can be ! We serve an awesome God who can do amazing things. His plan is not always our plan, but still the perfect plan. Our love goes out to your family and prayers for Michael's heart to be healed.

jskin said...

To the Shust family, congratulations on the birth of your beautiful Michael.

When my child was born in the same situation it was God's Word that set me free to see the vision of a new baby through His lens and not my own. As we know the number of scriptures that indicate, we are knit together by the Lord in the wombs of our mothers. So is it too, that this child was as well, perfectly and exactly the way the Lord God Almighty wanted this child to be. So very perfect in every way.

As you adjust your sails and walk through this tunnel, you will come out of it with a renewed spirit...the understanding of the fact that we are not in control, that the Lord is, and that He has very special purposes for this child and your family.

I wish you the best in this journey, and prayers of course for your sweet Michael. What a fitting name for your new son.

God bless you.

NDMom said...

We have felt the same confusion in the birthroom that you and Sarah felt. God blessed us, too, with a third child who has Down syndrome in April of 2000. He gave us her name just weeks into our pregnancy, Grace, a blessing given, undeserved. We clung to that promise in the moments and weeks that followed. Outside of our hospital window the next day were two younger inmates who were sweeping sand from the sidewalk into the street after another long, snowy winter here in Minot, ND! ( I got your autograph on your CD while you were here with Mercy Me and Audio Adreneline in March of 2007) Back to my story: I said to my wife Paula, "I don't know what all God has in store for us with Grace, but I'm sure she won't ever be incarcerated for committing some crime. I'll bet there was much joy in the delivery room when those two young inmates were born because their parents were rejoicing that they were blessed with a healthy, typical son"! Grace has turned out to be a blessing to us and our extended family, church family, and community! God also used her to give us another mission field, we have since adopted a little girl named Bella from Ukraine in 2009 and a boy named Nole' from Serbia in March of last year, both with Down syndrome. In many eastern European countries, children born with Down syndrome, or any disability, are left at the hospital and then placed in an orphanage for the first four years of their life to grow up without parents, but relatively good care. At that point though, they get transferred to mental institutions where most die in the first year. God sent us on a rescue mission, much like he sent his son Jesus for me. I didn't know what laid ahead for me without Jesus, but God drew me to Him so that I might be adopted too, into His family. Not because of what I could do for Him but because He loved me, broken and imperfect and destined to suffer and die.
Congratulations on the birth of Michael Aaron! If you'd like to see our family and share our journey, my wife has a blog about our two adoptions at
Love in Him, Kevin Burckhard, Minot, ND

Anonymous said...

Congrats to the Shust Family! :)

You have been so blessed by this precious little one! What an exciting day!

My husband and I are both huge fans of your songs...but we also just found out a week ago that our unborn son will come to us with Down syndrome.

Can't wait to see what is in store for you guys. Many blessings!

-Newman Family

Lisa said...

Congratulations on the arrival of Michael Aaron. Our 3rd child, Eli, arrived 8 weeks early last February. We found out he had Down syndrome prior to his birth. He has been very healthy and an easygoing baby. You take care of a baby with Ds just like you take care of any baby - they really aren't that different. Prayers for his heart and that the surgery will be smooth - many of them are. Praying for the infection to heal. You can find some really good information at and at - Down Syndrome Board
Many have been on a similar journey and you will find your way together and with God:)

Kim said...

I am a Mom to a 3 year old with DS (our 3rd child). We were so scared when he was born but that was based on so many misconceptions. He is the light of our world. Check out a recent blog and FB post - for some inspirational stories.

the three wise menn said...

First of all, congratulations! Your blog was posted on a Ds page I follow. My family is a fan of your music as well. :)
We have two girlies, both with special needs, the youngest with Ds and a complete AV canal that will need repaired down the road (and a coarctation of her aorta that was repaired at six days).
We will be praying for your family as you walk and new and unfamiliar road.

In Him,

Kaiti said...

COngrats! We welcomed our daughter Harper in August who also has Ds and an AV Canal defect. She underwent OHS on 1-4-12 and is doing great. Michael is and will be a tough boy who will melt your hearts daily. Please reach out to any of us in the Ds family for love and support. The Ds blog family is amazing. Here is mine: Your family just got more beautiful with Michael!

CindyB said...

SO many great comments and thoughts :-). Congratulations on your new son! Your eyes and hearts are going to be so much more aware of God's Plans for us all... even through the hard times. Praying for a smooth surgery, quick recovery and an end to infection.

Back when God was calling us to adopt our 3rd child (all 4 of our kiddos have sn's of one kind or another), I really, REALLY wanted to say NO. It was fear. As I told hubby at the time, who wondered why a child with some six diagnoses by age 35 months scared me so much more than a child with one, I remember saying "But THIS one is extra, EXTRA special!!". Ten years later... and yes he is :-)). And WE are better people, in a much closer walk with God, because of him.

It'll be okay. Cyber hugs to all of you.

Cindy said...

Congratulations!!!! You have been blessed with the most wonderful surprise EVER!!! We have a 3 year old little girl named Jillian who was born with Down Syndrome. She knows and identifies all of the letters in the alphabet and has over 350 sighns. Just this past week she spoke her first 3 word sentence, "I Love You." She melts our hearts as well as the hearts of those around us. Just watch as your little boy transforms your heart and takes you to places you never thought you'd be.
There is a wonderful blog about a family with a one year old boy just like our kids. Check it out.
I am so excited for you!

Tara said...

I remember well that day for us almost 3 years ago. We waffled between wanting to run out and buy a "My kid has more chromosomes than your honor roll student" bumper sticker, and being overwhelmed by grief from the plans we left behind.:) Whatever you're feeling is ok. Feelings pass.
Know this: Michael Aaron was fearfully and wonderfully made and was created in the image of an Almighty God. One day, you will realize that Down syndrome has added so much to your life and you will be so grateful for the journey. You will also realize that all your plans and dreams for your little guy didn't really need to change. He will amaze and delight you...daily.
Congratulations on the birth of your perfect baby boy! Welcome to the journey.

I'm sure it's been said, but get a copy of the book Gifts and find the Down syndrome board on Both of those are sanity savers. Oh, and read the blogs of those of us who are living this life. It's not at all as scary as you think. ;)

Tara said...

Oh, I also wanted to add to my comment that Eon, with Ds, is our third son, too. Although, he has 3 older sisters (and now one younger), as well.
Someone helped me by pointing out that he came to us as a baby and we needed to not think too far ahead. I didn't give birth the the grocery bagger at my local store. I shouldn't project another's life on him. We would grow together.
And we have. :)
We like Ds so much, we're adding another child with it this year from a country far away. :)

orphans4me said...

May God richly bless you in the days and months and years ahead. May your precious son be the light of your life and a shining light for Jesus as well.
Joy, mom to 2 little guys with Ds adopted from Ukraine

Emily Greenman said...
This comment has been removed by the author.
Rebecca said...

Congratulations! Welcome to the wonderful world of DS! Our second son was born with DS, we found out postnatally. It was quite a suprise, and after much fear and trepidation about caring for a "special needs" baby I realized there was nothing "special" about his needs, they were the same as every other new born. He had open heart surgery at 12 weeks to repair a VSD and close his PDA,and is completely healthy in the surgeons eyes today. I would never consider trading him for anything, and as most DS parents can attest, once you get to know your little one, if you look at the Reeces Rainbow web site (orphans with DS) you will find yourself considering another.

Sharon Caswell said...

Congratulations on the birth of Michael Aaron. :) 6 years ago (on January 10th) we welcomed our 4th son to the world, and were surprised at diagnosis of Down Syndrome as well! It was rather crushing at the time. But, our little Tyson is...beyond amazing. He is incredible. I know things are confusing right now, but I cannot tell you how absolutely beautiful your lives will become because of this child. God bless you!

Hi~I'm Alysha said...

Welcome you beautiful boy, you!! And as his parents Welcome to the beautiful world of Down Syndrome!! I know you might not be able to see them right now, but soon your going to be seeing soooo many more wonderful colors in the rainbow of parenting that you'd never would have been privlaged to see without
God opening your eyes through Michael :) Our 5th child (Eli) is blessed with that extra something and has lead us on the journey of adding our 6th child through adoption (our Isaac) whose got that extra something too & soon our 3rd son (7th child) will be home :)I strongly encouage you to check out this page on fb!/NoahsDadcom
Wish it was there to read when our Eli blessed our lives.
Your gonna have your socks blessed off you by Michael, you just wait & see! ♥
I pray that right now the Lord will just be flooding your heart with the pure joy of him. I'm soooo excited to welcome another family to this beautiful journey!! :D

Irma said...


Your words and music have comforted me at times that I have cried out to the Lord for answers and have blessed me many times over. I pray the words of your fans and the Ds community bring healing and peace to you and your wife.

Congratulations to you and your wife on the birth of your newest son!! Over two years ago my husband and I welcomed our third child who is our only son. We found out shortly after his birth that he has Ds. My first reaction was complete fear. Then I heard these words: “we are all made in the image of God – including your son.” Often new and unfamiliar things are scary to us until our eyes and hearts are opened to a new world. I am so grateful for all that my son has opened up our hearts and eyes to. He has enhanced our lives greatly. Recently I asked my 13 year old daughter “how has your brother changed your life?” She responded, “In every way, but ALL for the better – he brings so much joy to me.” How many 13 year olds could honestly say that about their brother? You’ll find in the Ds community this is the norm. My son has taught us many lessons in the short time he’s been with us. I made a 6 minute video about the life lessons my son has taught us that I’d like to share with you and your wife. I hope it will reassure you that life might be a little different, but it’s still very similar to what you had before your newest son was born.

Welcome to the Ds family. It is a very loving and special community that we are honored to be a part of.

God Bless you and yours.

Pauline said...

Hi Aaron, my cousin is 14 years old with DS. She is the happiest person I know. It's difficult seeing the struggles she goes through, but she is truly the light of our lives. It must be incredibly difficult for you and your wife right now. I'm praying for your family, and praying that God will reveal His goodness to you more and more clearly. We know he is, even when we don't understand how.

Laura Watts said...

Congratulations on the birth of your baby boy! Yes, you are on a roller coaster now - there is joy, fear, wonder and sadness. I know, because I have been there. When I was pregnant with our 2nd son I was diagnosed with breast cancer and had a mastectomy in my third trimester. When our son was born 6 weeks later and surprised us with Down syndrome we named him Jonathan - God's gracious gift - because, despite all predictions, we were still sharing the gift of life we had started together. He too spent time in NICU with what turned out to be an infection due to my having strep of the placenta, a condition often considered to be fatal even in a typical child. But now, 25 years later we are not just surviving - but thriving! Because of having Jonathan, we were led to reach out to other parents and soon became one the country's largest Down Syndrome Associations. This led to doors opened by God for me to start a ground-breaking professional Center focusing not on the health concerns, but on the amazing and long ignored learning potential of our children with Down syndrome. God continues to bless this outreach and I have had the privilege of working with over 1600 families from many foreign countries and all over America - pre-natal to young adults. Through them I have learned to appreciate the creativity and love for diversity that our awesome God has so freely used in the gift He has given us with this population. And our son has been able to reach others with a new insight of what it means to be created in His image with his unrestricted praise and love for his Lord. You are about to begin a journey that will take you to high places that you would never have known to ask for. And at some point, as you move through them, you will suddenly realize that you are wondering how you ever lived without them.
I look forward to meeting Michael some day!
Laura Watts, M.Ed., Down Syndrome Center at Hope Haven, Jacksonville, Florida.

The Monier Family said...

Congratulations to the Shust Family!
I do not know you personally I did want to stop by and encourage you. We recently chose to adopt a little boy with Down Syndrome from the Ukraine. We CHOSE a child that has Down Syndrome. He is the light of our family and blesses anyone he meets. The Lord shines through our son and sometimes I think Dima sees the world the way the Lord intends for us to see it.
I have no doubt that your son will be a blessing to the world and bring your family joy. I am also fairly certain that I am "preaching to the choir".
Your family will be in our prayers!

mlfont said...

Never fear, God has the perfect plan! Our precious 4th child was born with DS, no warning, in fact we left the hospital not knowing! He had open heart surgery as well, He is one amazing child! Parker is 2.5 and doing amazing, pray about everything and most importantly don't listen when the "experts" tell you there is nothing that can be done. So much is known these days!! Our kids are doing amazing things!

mlfont said...

Lisa and Julie said...

My brother has Down syndrome. He is going to turn 30 this year, and I can honestly say he is the best gift God ever gave our family. I hope to be as kind, genuine and thoughtful as he is some day. God used him to inspire my sister and me to adopt children with Down syndrome when we grew up and married. Between us, we have adopted 6 children who have Down syndrome, and our lives are rich beyond measure. One of my daughters was born with Complete AV Canal and she is now healthy, strong and thriving, thanks to God’s healing hand.

I know that Michael’s diagnosis may not feel like a blessing now, but I have no doubt that one day you will look at your little Michael and wish that God would give everyone the opportunity to have someone like him in their family.

Praying for you.

Jim & Molly said...

To be encouraged subscribe to: The Works of God - Amy Julia Becker - author of "A Good and Perfect Gift"

Both sites are wonderful, godly inspiring sites by families on the front lines of parenting special needs children. We will be praying for your family.

January 15, 2012 5:42 PM

Ruby's Mom said...

Congratulations on the birth of your beautiful son!I have a wonderful and perfect three year old daughter named Ruby who is blessed with Down syndrome.
I'm praying for your son.

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