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. :)

268 comments:

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laura said...

Aaron, I can't tell you how much your story of your 3rd childs birth and diagnosis sounds like our 6th child. We too had other children with different special needs and my husband has a mental illness. I wish to encourage you. The grief is normal, life will improve. Your music so encouraged me as I sat on the couch and cried to it in the beginning. Today there is rejoicing. Praying for you.

Cathy said...

Congratulations!!! As I read this post to my husband, he said...sounds a little like our situation. Except our Michael Aaron is a Lily Anna. She is 3 1/2 year old now and the light of our lives. Today in church as she was "singing" with gusto, I thanked Him once again for this beautiful child He has entrusted to me. Michael is surely a good and perfect gift from the Lord. You are embarking on a beautiful journey. May God bless your family and hold all of you in His arms.

Tarah said...

Thank you for sharing your story. My mom and dad adopted my little brother Sterling(who has downs syndrome) 20 years ago and I can't say how great an impact he has had on my life! Sterling is a living example of Christ's unconditional love for us. Your son will bring you more joy than you know. I will be praying for you guys. Thanks again for your willingness to share your heart.

block4evr said...

Congratulations on your new little angel! My little girl has down syndrome, is 9 now and the most amazing gift in my life. I tell her all the time that she is exactly who God intended her to be, and that is awesome. God bless you and your family.

Sherrie said...

Dear Aaron,

Congratulations to you and Sarah. Michael is a beautiful baby boy! I had the opportunity to speak with you after a concert in Chillicothe, Ohio in April 2010. It was an awesome concert. Your song, 'My Savior, My God' was one of the first songs I learned all the words to and listened for when I first started listening to Christian radio. You are an inspiration and you, Sarah, and your precious children will bring glory to our God! My hope and prayer for you all is my favorite blessing found in Numbers 6:24-26:

“The LORD bless you and keep you;
The LORD make His face shine upon you be gracious to you;
The LORD lift up His countenance upon you,
And give you peace.”’

You are a good and faithful servant Aaron. I know that in the way that you give of yourself...your time, talent, gifts, and love. Thank you for your service to our Lord and for the sacrifices you make. Love and peace to you and your family. God be with you all,

Sherrie Grennell
Columbus, Ohio

Carol said...

When our little guy, Justin, was born six years ago with down syndrome, we had so many of the same feelings you shared. During this time I listened to your first cd and especially the song My Savior My God many many times. It conveyed to me that my savior will always be there for me even through what was a very difficult time. I know, as you know, that He will be there for you and yours also. Michael will bring your family some extra challenges and he will also bring oh so much joy.

Michelle Turner Garrison said...

Aaron and Sarah, Michael is SOOO beautiful! What a blessed little boy to have been brought to your family where he will not only be overwhelmed by your love, but from day one be taught about a Heavenly Father who created him exactly the way HE intended and has an unending love for him. We will pray for safety and healing during heart surgery. We have walked that road with our Abbey. It is scary, emotional and overwhelming.

Emilee Kaye said...

So sweet. We recently received a new member in our congregation and they are nothing short of beautiful. When the Lord brings you and your family to mind I will be lifting you all up :) Be blessed... And be still :)

Kathleen L. Maher said...

First of all let me say I am so blessed by the outpouring of love and community here. My husband and I are raising three children, one of whom has Asperger Syndrome. I hope this doesn't sound selfish, but it comforts me to know that the special needs community is represented by one of the most articulate and compassionate artists in the Kingdom right now. Thank you for your transparency in your ministry. God bless the Shust Family, and all the wonderful people that have shared their hearts here.
A book I have found particularly helpful is by Christian author Jolene Philo called Different Dream Parenting. Prayers and hugs,
The Maher family

Crazy Beautiful Love said...

Congratulations and welcome to the club. There are thousands upon thousands of us that have children with Down syndrome. We are always here to help.
I will keep you all in my prayers, esp your wife and baby Michael. The beginning is the hardest but...heartache will soon give way to a love like you have never known. Worry for his broken heart will become joy of healing and a renewed faith in prayer. My Eslea has shown me the truth of life. It is a gift, this I promise.

Andrea Ziegler said...

So funny, January 30 is my beautiful daughter's birthday. She was born with Down Syndrome, a surprise to us like it was to you and your wife. SHe has been a blessing, just like any other child. I'm not saying the road is always easy, but life never is. And please, grieve the hopes and dreams that are now lost. It is best for you to get those feelings out so you can move on to the happy times. Good luck with the surgery. Anistyn had AV canal defect and her surgery went so well we went home a week later! Congratulations on your beautiful baby boy!

pooh said...

I pray that you know God is using you in this, through this and for this to bring Glory and honor to His holy name. I appreciate your honesty and realness. God is blessing you and right with you every step of this journey. I am praying with all my might for your beautiful son. God bless you all.

Kirsten said...

Congratulations on the birth of your son! He is absolutely beautiful and what a precious gift. In April of 2009, our first daughter (after 6 boys) was born. We found out a month before she was born that she had Down syndrome. She had surgery for Duodenal Atresia and Trachial Esophageal Fistula at 12 hours of age and open heart surgery for an ASD, VSD, and PDA at 7 months. She's been through so much and is the strongest person I know! We went through alot of grieving and questioning when we were told her diagnosis, but I can tell you now on this side of it, she is the biggest blessing of our life! We are forever changed and we are so thankful to God for that! Like some of your previous posters, after we realized what a blessing we had, we knew we wanted to adopt and we brought our 2 daughters home from Ukraine in fall of 2010. Both girls also have DS. When we were beginning the process, we made a video of our family's story and the reason's we wanted to adopt children with DS. The cool part I thought you might be interested in, is that we used your music, My Savior My God, as the first song in the video. The song was so inspirational to us, and I just had to share the link with you. :)
http://www.onetruemedia.com/otm_site/view_shared?p=b39ce367ae9406296e3d5b&skin_id=1705&utm_source=otm&utm_medium=text_url

If that doesn't work, click here:

http://bringinghomeourgirls.blogspot.com/2010/06/light-to-our-path-at-onetruemediacom_26.html

Your little boy is so precious and what a blessing he is!!! Prayers for your family and for your little guy!
Kirsten

www.bringinghomeourgirls.blogspot.com

Brianna Heldt said...

CONGRATULATIONS!!! Michael is precious and I am so thrilled for your family.

I have two daughters with Down syndrome, ages two and four, both adopted from Ethiopia three months ago. Both girls had heart catheterization procedures in November, and then last month the four year old had open heart surgery.

We will be praying for your family. Your son was created by God JUST as he is supposed to be, and Down syndrome is such a beautiful blessing in so many ways. God bless!

Amy Troyer said...

Let me start by saying CONGRATULATIONS!!! This is indeed a blessing. I am a mom to an 11 year old (Ryan) who also happened to be born with Down Syndrome and had an AV Canal defect as well that was repaired at 3 months. He is a strong wonderful boy that lets us see joy like never before! He has made our family grow in love like we never expected.
There is a poem called "Welcome To Holland" by Emily Perl Kingsley, That was given to us after Ryan's birth so I hope it touches you like it did us!
"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 Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several 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 guidebooks. 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. You begin to notice that Holland has windmills. Holland has tulips. And 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 experience will never, ever, ever, go away. 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." So welcome to Holland IT IS BEAUTIFUL HERE!

Jeremiah 29:11
Much Love,
The Troyer's
Mark, Amy, Abby and Ryan

Shannon said...

Welcome Michael Aaron. Fearfully and wonderfully made. No exceptions in that verse for Downs or any other condition. I remember God showing me that after a diagnosis of chronic illness in our son. So incredibly comforting to me still.

God bless you and your dear wife on your journey with Michael.

Momma T said...

bless you all and especially Michael. God is absolutely with you and you will witness His divine presence in ways you've never imagined. Our eldest daughter was born in the same set of circumstances. She is a guiding light for our family. She just turned 8! You can see some of our journey here.... http://detourautism.blogspot.com/2011/12/happy-birthday-my-love.html
Hugs and prayers to you all. Congratulations on your beautiful boy!

jkamleiter said...

Gorgeous son! I know this is a difficult place emotionally right now because I have been where you are right now. My husband and I's firstborn is a young man with DS. He is now 9 years old. We were 24 when he was born and had no knowledge beforehand that he may have DS. He is a gift from God and has made us grow closer as a couple and a family. But, I remember those dark days at the beginning, so much of the darkness being fear of the unknown. It's hard to admit that fear and that sadness b/c we are Christians and believe that God always has a plan and our son was a part of it, but I'm being truthful. God bless all of you. I can't wait to see your posts as Michael grows. Many prayers sent your way as he undergoes surgery.

Amy said...

We don't know esach other but we too found out after birth that our son Gabriel would be born with DS. We stay in the nicu for 5 mos for he had breathing issuses and would not eat. We grieved (still are) the loss of our perfect NORMAL child. Gabriel is perfect and while his road has been long and rough he is a Miracle from God. I won't go through the specifics here. Grieve and rejoice!!! I have a blog the Dolloff family chronicles. He is a beatuiful BABY Boy. Remember he is your BABY first of all. Prayers.verything else is second.

Aimee said...

Congratulations!! Praying for you and your family!! He is strong enough and will help you handle it!!

Travis said...

Aaron, my wife adn I just went through this exact experience. AV Canal, Down Syndrome, Open Heart surgery etc. We found it helpful to read blogs of those who had been where we are. Both of us have written about our experience at www.vnorton.blogspot.com and at www.modernparentonline.com. It's a tough road, but as you know, God stands with us, surprising us with his Grace all along.

gailcay said...

You are in for a lifetime of HUGE BLESSINGS with your son! The world tells us negative things about kids with Down Syndrome, but I'm here to tell you, you are going to be blessed like crazy with all the laughter, joy, hugs and unconditional love Michael will bring! My husband and I can't even imagine why God would give us such a special, happy little boy! We feel we sure don't deserve him! He is so AWESOME and you will find this out yourself. Trust God and sit back to see how many lives will be changed because of your little blessing! Your family will be forever changed for the better! Since the birth of our son Garrett, we have trusted God and not looked back. Our preacher told us at the time of Garrett's birth "It didn't surprise God one bit that Garrett has Down Syndrome". Michael is a great gift from God! Looking forward to hearing the AWESOME things he will do in your family! Don't put any limits on him, he will surprise you. Don't listen to any negative things about Down Syndrome. God is in control as you already know! :) God Bless you and your family!

Melissa said...

Welcome sweet Michael!

Michael and my little girl with an extra chromosome, Claire, share a birthday. When we went to our 37 week appointment we too found out our little one wasn't as big as she was supposed to be, and we headed to the hospital to deliver her. She had her OHS at 5 months (same heart defect as your little one) and breezed through it.

I know you are adjusting to so much, but please know that our Down syndrome community is a strong and tight knit one. You have joined (however unexpectedly) a wonderfully supportive group who truly love your son.

CARRIE ROTHONES said...

Thank you for sharing your Michael Aaron with us. I am praying for you all. May God be glorified.

Carrie Rothones
Loveland, CO

Wendy said...

Congratulations on this new bundle of joy! I am sure God will walk with you through this time. He is there for you and He definitely has a plan! Love your music, and love the beautiful pic of you sweet boy. :)

Clapp Clan said...

Like so many others we too have a son that came into the world and surprised us by having DS. I remember those first days, weeks, months and trying to sort out all the emotion. There are still moments when the emotions feel raw and I look to God for His guidance and strength in our lives. I wanted to share with you something that we found when our son was born. we sent this out to all of our family and friends as we felt like it perfectly explained how we felt on his "birth" day.
WE BELIEVE:
All life is a gift from the Creator, God, and for this we rejoice.
Though our journey has deviated, our destination remains the same.
Even though we did not choose this journey, we graciously and humbly accept it.
The blessings that lie ahead will be a testimony to God's goodness. The challenges that lie ahead will draw us closer to God's faithfulness.
THe uniqueness of God's gift will fill us with wonder, joy, excitement and love.
We will never be the same again as we draw closer to our Heavenly Father and to each other!
Praying for your family as you begin your journey!

Christy said...

Thankful for God's greatest blessing of Michael Aaron, and believe that the Father has plans for good, not harm, for your family. He makes no mistakes! Praying that Jesus will keep you strong and courageous.

Nathalie said...

Congratulations on the birth of your beautiful son. It's strange, I have been listening to your music so much lately and when I heard the other day that your son had been born and was in the NICU the question flashed in my mind about whether he had Down Syndrome. I was praying for you about it - mostly that you would get through the grief and onto the joy quickly. Our daughter's Down Syndrome was a surprise as well but she is absolutely the joy of our lives and I wouldn't change a thing about her. God bless you guys! You're in for the most amazing ride you never knew you needed.

Sheri Holthe (Oleson) said...

What a perfect little boy you have been blessed with. We are praying for a quick recovery from his surgery so you can get him home and love him to pieces and see the blessings of Down Syndrome start to show themselves.

4himcamper said...

Congrats on the newest Shust boy. Just skimming through the comments and a few of your replies, I can tell you and Sarah are getting a lot of support. Another person in Christian music you could always talk w/ is Jeremy Camp...his youngest brother Josh has Ds as well as food allergies.

And depending on how severe Michael's Ds is, you still might have the Shust sons band some year.

Catherine Pittman said...

Praying for your family. You have been given a gift from God and he is beautiful. Congratulations.

dtrvGod said...

Through my son's own struggles, Jesus has reminded me often of Matthew 6 when He says why worry about tomorrow when today has enough worries of it's own? As an encouragement, take one day at a time, God will get you to where you need to be. He will supply all your needs according to His riches in glory in Christ Jesus, and He will give us wisdom when we ask. I am praying for that for your family right now, as well as joy and peace. :)

Trish Iiams said...

Congradulations on your new little one. I wanted to share a poem that I had written I wrote this from my heart and from the experiences that I faced with my son J.J. who is now 13. When J.J. was a baby I was sitting in the ER waiting to find out what was wrong with him and than finding out that he had a heart defect. Also before he was born being told he wouldn’t make it and that I needed to abort him because he would be born with major defects. This was my hearts cry.

My Little Angel

A little angel I hold in my arms I know that God sent him to me to show me His love from above. As I hold him in my arms I never want to let him go. As I look into his eyes my love for him grows. He is so sweet and so pure Dear God I pray for a cure. I know that my time with him may not be as long as I would hope it would be, but I am so thank for to You for giving him to me. For I know now what true love really means. Words can not describe the joy and the pain I feel in my heart. Oh God the only relief I have is because of you I know that we will never truly be apart. For I know if and when you choose to take this little angel back I will be with him again because of what You have done. You so loved the world that you gave your one and only son that whosoever believes in him will not parish but have everlasting life. Sitting here holding my son You have given me a new insight. I pray for strength for me, for my other little ones, my family, and my precious little son. Help me hold it together and not lose sight. Dear God, help fight for what is right. Oh how I love my sweet baby boy and he has brought me and so many others so much joy. I know that You love him too and he truly belong to You. I know that You will take care of him and will continue to love him even if You have to love him up above. Please Dear God; comfort my heart because I don’t ever want to be apart. He is my treasure, my gift, my heart. Thank you though for the time I have, for this little angel I hold in my arms I know that You have sent him to me to show me what true love really means.

Trish Iiams

wheniamweak said...

TODAY i woke up down, burdened, weighted by our "new" life. i felt alone on an island watching the happy people across the ocean dance and celebrate their "normal" life. two weeks ago my one year old daughter was given the official diagnosis of mitochondrial disease. we've been on this crazy rollercoaster ride from the day that she was born. TODAY i asked God again if He was sure i was the right person for the job - doesn't He know how weak i am?
TODAY i also turned on klove and immediately heard your story. about your two boys. i heard the radio person tell about his daughter with cerebral palsy and it was loud, God's voice, saying "YOU ARE NOT ALONE" and i started to cry and thank Him for the opportunity to know that i'm not the only one walking this path. i felt at ease knowing i had other christian brothers and sisters walking this road beside me - celebrating this "new" life together. I praise God for your family and your story TODAY!

Jenn said...

Down Came the Rain. Love it.

Congratulations on the birth of your son. Personally, I think that's all that needs to be said.

Still, you'll hear a lot of other things, too. People often have lots of things to say: advice, platitudes, "encouragement", even outright pity. Maybe you'll be like me and not really know how to respond to any of it -- the well-meaning and the not-so-well-meaning -- so you'll nod, smile and mumble, all the while thinking in your head that it's odd to even have to have these awkward conversations (after all, nobody feels compelled to tell you how ALL kids with _______ are so _____, like is often the case with people talking about kids with Ds). Once the immediate medical issues (the infection and his heart surgery) have been addressed I think you'll find that parenting a child with Ds is not any harder than any other. The hard part is helping other people to realize that too. :)

*Peace and blessings+
~jenn

gretchen said...

Michael is beautiful! My son Julian (20 months old) has Down syndrome too and he is awesome. The adjustment period after hearing a diagnosis is tough but those sad feelings DO eventually go away and believe me - our life is pretty "typical" if you ask me! Check out http://blog.gretchenmather.com for a bit about us. Julian just had his 18 month developmental check in and is doing great.

WesternPATexan said...

When I was pregnant with our son 15 years ago (we knew he had Ds), I listened to Natalie Merchants song "Wonder" over & over again - it gave me so much strength. I recommend it.

Robyn from Hope Shows said...

Thinking of you. I think God putting you on tour with Jeremy so much of this year will prove to be a most-generous gift. I worked with Downs kids in the past and love to watch (via Facebook :-)) how Jeremy and Erin parent their kids. Blessings to you and your wife ... Robyn Florian

Karly Jaco said...

I pray that Jesus wraps His arms around you and gives you peace. I have been in your shoes. It is a hard place to be, the shock, the not knowing etc...but oh the joy of having a new life a new creation...there is so much to celebrate. There are so many familiar faces i see commenting on here. You will have so much support!

When our precious ava was born we were rocked too...and i was also injured. we've been on quite a journey, but if there's one thing i know for sure, it's that God always does best. I have seen His hand at work in every detail even in the whirlwind of events at her birth. God is good all the time...

Praying you are feeling the support and prayers of all of us. God bless. You have blessed so many of us with your music. Now hopefully we can bless you!

Melissa said...

I know you're scared. I know you're probably angry. You may think that you will have to lower your expectations for him. Work on changing your expectations. He will walk and talk but he will not do it on the timeline you knew to expect with your other kids. Throw out the baby book. This is a whole new plan. You will be OK. Michael Aaron will be OK. You ALL will be OK. When you're ready there is a lot of support waiting for you. If you feel up to it here is a link to video about a little girl with a 'gambling problem'. You will smile, you may cry. Welcome to a new world. Down Syndrome Awareness - Maddox Lucille
www.youtube.com Good luck. God bless and lastly congratulations.

Deb said...

May I respectfully, lovingly add~
" My Savior loves, My Savior lives, My Savior's ALWAYS there for me...."
I have sung that aloud loudly, alone in my car, where my feelings are able to unfold into words as I sing a sacrifice of praise. Your own penned worship lyrics have brought to my heart, the reminders of who He is in my storm. We buried a healthy Godly week shy of 19 yr old son, 10 yrs ago. While I cannot agree with the common sentence "there is a reason for everything" I DO know, that I KNOW, that God is with us in everything...and HE is MY reason, for pressing forward, offering sacrifice of praise....watching for Him to move, and listening for His spirit to sing over me, and guide me. ( my first cousin's Down son....is a pure delight. In high school now...lettered in bowling last year! Can't imagine life without him...in the extended family. It IS like thinking you are flying to Paris, and getting off the plane in Holland. Different scenery, but with God with us, Always there for me...My God He was, MY GOD HE IS.......you know the rest. Praying for you each and all. God knows the details, and is Faithful. I have experienced more than I might ever write down, of His faithful acts and songs. Sincerely, Genuinely, your sis in Jesus, Deb

Tracy said...

our third son was born with downsyndrome. I remember those long days and nights wondering when he would come home. He had a sucking issue, that I did not know if he would ever get it. God sustained me as a mom who wanted to be by his side.
He is now 14, and it is amazing on how God shows us everyday the blessings he gives us. We chose to take each day at a time with Sam. We did not know all the challanges we would face with him, but God is there and walking through all the stuff. I have realized, wow God you have given us such a privilage to raise such a special gift. He has entrusted the 2 of you with such special boys. God Bless, I am praying for you as you journey through this. I understand the difficulty as we also had 2 boys to take care of at home. May God give you his strength, through the weariness of the family being seperated. Praise God for Christ's family to help with the burden.
God Bless, as my heart connects with your family.

Becca said...

Congratulations on the birth of little Michael! As so many others have already said, you have a truly beautiful journey ahead of you, and that little boy will teach you things you never thought you'd learn. The Ds community is HUGE and very strong, and an amazing place to be. My daughter, Samantha, is 5 1/2, and the absolute light of our lives. She, too, had an AV canal defect that required surgery at 4 months old, but with that behind us, we've never looked back!

Dawn said...

Shust family,
God bless you, and God be with you comforting you through this very scary and unknowing time. I am here to say this: little Michael is a blessing, and having a special needs child isn't as scary as you think. I too was given a son who is now 13 with Rubenstein-Taybi syndrome. We didn't know if he'd walk, talk or have any type of regression. He is the most absolute joyful, loving and smiling boy in the world. I love him so much it hurts. He has amazed us every day. He has come so far, and I couldn't imagine my life without him. He is a treasure.
Please know that many of us are praying for you, many of us parents who have entered this new scary world of special needs are here to support you through this. I pray you find comfort and know you have a huge support group in this world.
Sincerely,

Dawn

Lacey C. said...

God doesn't see disability, he sees different abilities and purpose and grace and master design. For both you and little Michael. He knew from the beginning of time that you would be trusted with Michael. Trust yourself to God, he will not fail you. Praying for you as I send this!

HIHI said...

My prayers are with you and your family..may God bless each of you thoroughly :)I cannot imagine what you are experiencing right now but I do know that if God brings you to it He will surely bring you through it! Whether it be for a day, a year, or a lifetime...

Yo Mamma Mamma! said...

You have been given the most wonderful gift! I know it doesn't feel that way now - I remember hearing the words "she is beautiful, she is perfect and I am quite certain she has Down syndrome." Please visit Downsyndromepregnancy.org and download the free ebook - so much good information (it is geared for prenatally diagnosed families, but I think you will enjoy it anyway.

Connie said...

Congratulations!! We, my husband and I started are journey almost 12 years ago, when our 3rd son, Collin was born with DS. I can say it has been the most amazing journey and one that we would never want to change.

God knew what he was doing when he blessed our family with all of our children but especially Collin. He has brought so much to all of our lives.

You and your family our in our prayers. God Bless!!

Then Longshore's

teresa said...

Congratulations on the arrival of your precious son, Michael Aaron. I believe you will find him to be a beautiful blessing to your hearts, lives and family.

http://www.deannajsmith.com is the blog of a family that were introduced to the world of "a little something extra" a couple years ago. she recently released an ebook of their early days and journey. i'm finding it a blessing to read.

Trusting God to provide all you need as you raise your beautiful family.

Adrienne said...

Your son is beautiful, congratulations!! Our son too, was born with Down syndrome and had open heart surgery for an AV canal defect when he was only 3 months old. He is now 2.5 and is truly a blessing. He seriously brings us so much joy. He's changed our hearts and shows us how to love with an open mind. Raising a child with Down syndrome is extremely rewarding even with all of the challenges. The joy far outweighs those challenges. We wouldn't change our son for anything! You have truly been given a gift with this boy, cherish it, cherish him.

Kim said...

Shust Family, you have a lot of comments and encouragement, maybe this will be lost among them. I have a son, six years old, named Charlie Collins. Charlie is my husband's middle name. Collins is my maiden name. We did not know he had Down Syndrome until he was two months old. I can remember at that moment thinking we had wasted a precious family name on a boy who would never become a father. Who would never do so many things we had hoped for. It was a dark moment. But these things often start with dark moments. It did not take us long to draw Charlie into our hearts exactly as he is, and to be glad he is who he is. I still have moments where I think to myself "hey! we have a kid with Down Syndrome... wild." Because as you said, these things are other peoples stories. When the doctor shared Charlie's diagnosis with us the only question I could think to ask was "what do we do now?" His answer, "Just do what you've been doing." Medical complications aside, what a child with Down Syndrome needs most is simply a loving family. It sounds like you have that. I have a blog about our family 'Charlie's Up To' charlies47.blogspot.com. Come on over sometime to find info on the nuts and bolts of a family graced by Down Syndrome. My prayers are with Aaron as he battles health issues in these early days, and for you and your wife as you take it all in. I pray that God will give you peace as the evidence that He is with you now.
Kim

Kay & Briton said...

Aaron,

I just want to say how much of a blessing it is to see the kind of impact you are making with the birth of your son, Michael. My wife and I are expecting our first child in July; your Godly influence and strength have cultivated a more resounding peace in those doubtful areas of my mind. I am praying for you and your family.

Sincerely,

Briton

Aaron Shust said...

Again, thank you all. I need to point out one thing. Someone said they were sure I was angry. The truth is: I wasn't and I'm not. :) By God's grace.

Kristen Rumphol said...

Congrats, Michael is so cute! As I read your post I started crying because I remember the day our angle was born and we found out that Brandon had Down Syndrome. It has been a long road but it as also been the best road. Our family has been truly blessed by God because Brandon had Down Syndrome.

Leah S. said...

Hi there! So, you found yourself a member of a club you really had no intention of joining. It wasn't really your idea of the best place to hang out. Guess what? You can't cancel your membership, because it's for life. Most of us raising kids with Down syndrome were handed that same member certificate and have gone through most, it not all, of the same emotions you have and have yet to experience. But I'm going to tell you right now, you've just found yourself in the most supportive club you could EVER hope to join. How lucky you are to get here without even looking for it. You will have good days and bad. You may be up when Sarah is down. And when you're down, Sarah maybe up. God does this so we can lift up the other and help them get through. There will be days, like now, when your head is spinning and others when you think, "Really, this is not so bad.) I'm mom to 3 kids with Down syndrome. Angela is 15, and the queen of our house. Like you, we had no idea she had DS until she was born at 34 weeks. As they told me of their suspicions she was loaded into a helicopter and flown two cities away. I can honestly say, I had no clue what was going on and couldn't even form full sentences during those days. Then we have Axel who is 11 and adopted from Serbia a year ago. Asher is 7 and just came home from Serbia 6 weeks ago. Our life is amazing right now. A couple years ago, in honor of Angela's birthday, I wrote a message for new parents, if you have the time to read it. http://tinyurl.com/89g3xfy

Brian & Jessie Bash said...

Although our daughter is not downs, she did have an ASD (and a VSD). She had open heart surgery at 4 months and now, 18 months, is as normal as can be. I remember praying, "Lord, not that (open heart surgery) road, please!" And then when it became obvious that he chose that road for her, he also provided precisely what we needed along the way. May he do the same for you.

Katie said...

Congratulations on your beautiful new addition! We do not have a baby with Downs, but we have several of our 10 children on the autism spectrum and one with type 1 diabetes. I know the feelings that come with the loss of a dream. But I also know the joy of watching God do amazing and wonderful things! In spite of our fears, in spite of the words of the world and in spite of ourselves. You are in our prayers. (Sorry if this goes through more than once - my computer is being glitchy)

nani said...

Congratulations on the birth of your beautiful son Michael! Thank you for sharing your journey in such an open and honest way. A year and a half ago I was there when my daughter began her own journey whn her son Beckett was diagnosised with DS. She would be the first to tell you what a special gift you've been given and that God is going to bless you and your family in ways that you can't even imagine! I will pray for Michael as he comes through his surgery, and he will. Michael will teach you everything else you will need to know! Keep us all posted. My love and prayers to you and family.

anniemm said...

there is a saying that God never gives us more than we can handle. Aaron, you and Sarah must be extremely special for God to entrust little Michael to you. He doesn't promise that our lives will be easy - but His strength will triumph where our weaknesses fail. God will watch over you and your beautiful family - He will never leave you or forsake you. You will all be in my prayers!

Laura said...

We are almost exactly one year ahead of you on this journey. Our son was born on January 12, 2011, and has Ds. I can confidently say that this past year has been the happiest of my life. If you are interested in seeing what life will be like for you next January check out our blog: www.accanddsjourney.blogspot.com

fiveaugers said...

Congratulations on the birth of your angel! God chose him for you because He knew you needed him! I have a 5 year old daughter with DS and she is a blessing beyond words, not just to us but to everyone who knows her! I made a video for Sanctity of Life Sunday at our church and would like to share our story with you. Click this link or cut and paste, and you should be able to see it. BTW, tomorrow is Sanctity of Life Sunday 2012! God bless your family!
http://www.onetruemedia.com/shared?p=7dd44edee849fb8ab319dc&skin_id=1703&utm_source=otm&utm_medium=text_url

CM said...

Congratulations on your precious and wonderful gift of Michael Aaron! We, too, are parents of a baby with Down Syndrome - our baby girl, Bailey, is just over a year old. She has brought indescribable JOY to our lives! She has a special presence that engages people and makes them stop and talk to us every single time we are out and about. She has a smile that lights up a room and a beautiful, beautiful spirit. Although you didn't request it, you have just joined one of the most loving and encouraging communities you will ever encounter. We were shocked (quite honestly, dismayed) when we found out Bailey had Down syndrome (we didn't know anyone with Ds), but now we would not change a single piece of her for the world! She is lovely and perfect exactly the way she is. She had heart surgery to repair her AV Canal when she was 5 months old and came through it with flying colors. It's a time that strengthened our faith and learn to rely on our great God even more than before. God is with you and will encourage you and your family and be with little Michael through his heart repair! We too, are in the club of now planning to adopt another child with Down syndrome. Your life will be blessed with Michael more than you could have ever imagined, and I am excited for you and your family as you get him home and you all get to be together. Blessings to you and your family!

Loving the Mommy Life said...

I don't know the surprise and loss of dreams that you are feeling, but I do know the wonders of raising a "Chromosomally Enhanced" child. We adopted our Julianne when she was 2 1/2 years old from Dallas, TX. She was our 12th child and she still changed our world in a way that I can never fully explain. She is 5 now and we are in the process of bringing home 5 more "Chromosomally Enhanced" children that we found through Reece's Rainbow. I can't wait to have them here with us.

I am praying for you all and especially your tiny blessing as you go through the heart surgery. We will be having some medical issues when our 5 arrive home I am sure. Thankfully, God already knows the outcome and promises to equip us for whatever He has in store.

Once you get past the fear and medical issues, you are going to begin to understand the amazing blessing that God has just given to you! "Chromosomally Enhanced" children just have this special way of blessing you. They have a stubborn way about them that is certain to take them far. They have a perfect spot in between their eyes that is just for kisses. They stay small longer so that you can carry them and baby them. They learn and meet milestones slower, but oh the joy when they do. I can't wait to follow your journey and see the blessings that are in store.

Prayer and Joy for You
Amanda- Mom of 13 kids at home and 5 more on the way, 1/3 of which are Chromosomally Enhanced

BBEA said...

We as well have been blessed with a child who came specially wrapped. My daughter, Emma, will be 7yrs old on Jan 26th and she has Down Syndrome. I can't imagine our lives without her. She touches people's lives like no one else can. Our blog is not as updated as yours, but feel free to check out photos and videos of Emma. We praise God that she is doing so awesome. She is in a typical kindergarten class, gymnastics, and every day is doing better and better with her speech. We are so proud of her. As with any child there are joys and challenges. Praise God that He works all things out for good. www.4wrights.blogspot.com

The Solis Family said...

Congratulations Shust Family on the birth of your beautiful son! I know that you have entered into a brand new world with Michael but I can't think of a better family for him!
My family will be praying for your family.

I know that your second son Nicky has a rare disease called Eosinophilic Esophagitis. I am familiar with this disease. My two year old son has a rare disease called Mastocytosis and some other Mastocytosis patients also have Eosinophilic Esophagitis.

I just wanted you to know that Rare Disease day is coming up to raise awareness for all those people like our kids who suffer from rare diseases. I can't think of a better person to raise awareness than you! You should think about it! It's on the 29th of this month. Children like ours need all the awareness and help they can get.

Enjoy your family and again congrats!

Rachelp said...

Your Perimeter Church family is praying for all of you. Thank you for giving us the charge to pray for you all. ..especially your sweet baby.

Having my own child with medical needs, I can tell you God's word... knowing His character will fuel your faith and give your faith feet..when you feel on your knees.

Rachel
www.inhonoroftheking.blogspot.com

Elisama Rodrigues said...

Own, so sweet. He is so handsome.
God bless him, you and your family.
May he be a bless in God's hands.

Elisama Rodrigues said...

Own, so sweet. He is so handsome.
God bless him, you and your family.
May he be a bless in God's hands.

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