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Aaron Shust Partners with OneVerse.org

Monday, January 16, 2012

Beautiful Aftershock

What an incredible past few days. Months of emotions were packed into hours. I wrote the last blog a little over 24 hours after our boy was born and we discovered that he probably had Down Syndrome. My emotions were true to where I was, where we were: raw. That was Saturday morning and now it's Monday night. 227 life-breathing comments on the blog later and a good many more on Twitter, Facebook and my website and Sarah and I are excited about this new adventure that God has plopped us in! :D The tears that we have cried have gone from shock and fear to utter awe at God's magnificent love evidenced through each and every one of you. It's like you conspired to make your stories all the same..."We found ourselves in the same situation, we were afraid, but that passes and your boy will be the biggest blessing you could never have lived without!" I swear half of you adopted more babies with DS after your first. And none of you corrected me for spelling Down Syndrome wrong each time I typed it! (I fixed it, don't check) which tells me that somehow, and I have a hunch how, Christ has rubbed off on you in a big way and you know how to show GRACE to people who are wrong and not as far along as you are. Bless you, Bless you, Bless you! Not for the grammatical oversight, for the general LOVE you showered us with. (See, one should never end a sentence with a preposition...Ms Byrne.)

Aaron and Sarah emotional update: We are good. By the grace of God we are good. Thank you for your prayers and stories and encouragements.

Michael update: Michael has been in the NICU since his birthday. He acquired a staph infection that led to sepsis (Medical people, please offer me the same grace my grammatical friends showed me) they couldn't pinpoint what it was until last night. But were giving him an antibiotic cocktail and eventually his white cell count began to lower and is still coming down: great news.
He was having a bit of trouble eating so they gave him a NG (Nasogastric: nose to stomach) feeding tube. (Nicky had an NG, NJ, GJ and currently has a G tube...they were comparing tubes tonight). His bilirubin is up, so he's under the blue lamp, and his temp is low, so he's in the tanning bed.

He is an absolute doll and I love him to death. Sarah is staying in the NICU around the clock, just like she did last year with Nicky. I picked up my 2 oldest boys last night and brought them home for some 'normalcy', but we'll make daily trips downtown until they come home. I sang and strummed them to sleep tonight. The all request set list was Rest In the Arms by Daddy. Little Nicky and Oh Mommy by Daddy, The Chain Gang by Sam Cooke and Give Me Your Eyes by good ole Brampo Neap.

If I had no Hope. If we had no trust in a Perfectly Loving God's Perfectly Loving Plan...I wonder how nuts I'd be right now. Our very lives rest in the palm of His hand. There is no need to fear.

111 comments:

Patti said...

So happy your little guy is doing good, and we will continue to pray for him. So glad too that our community rallied around you and that you were able to feel the grace of God... you have beautiful days ahead of you!! :)

Mayra said...

Thanks for the update! Been praying for your family!!

suchimpulse said...

What a beautiful baby, and a beautiful family you are! God's love is so evident in your hearts.

Keiunna Thompson said...

Wow. So glad to hear that you Michael as well as you guys are doing better. Praying for you all. May God's peace rest in your hearts throughout this, now and forevermore.

zookeeper12 said...

I've been praying for Michael and you and your whole family. Such an amazing witness to God's faithfulness. God bless you!

tinag705 said...

he is so beautiful. thank you for the update. Been praying for your family.

recipeforawildthyme.com said...

I've been praying for Michael and you and your whole family. Such an amazing witness to God's faithfulness. God bless you!

Jill said...

Congratulations on your beautiful baby boy!! Welcome to the world, Michael! We will be praying for all of you and for Michael's health.

As so many have said, you have been given a tremendous blessing. We too have adopted two boys from Ukraine with Down syndrome after having 5 bio "typical" children. They are true blessing to our family, as Michael will be to yours. God is GOOD and He will get all the Glory!

Sharon da Silva said...

So glad to hear the update on little Michael...who is absolutely adorable by the way :) We are praying for you and Sarah. Hang in there, it is in Gods hands and wiill work out just fine. God bless you both!

Unknown said...

Michael is and will be a blessing to you. We grieved for the son we thought we were going to have, but went on trusting in God to give us strength and grace for this journey. Praying for Michael and for your family!

Val said...

What a testimony to Gods love & grace you and your family are.Praying for His continued grace & blessings on you and the family

Val said...

What an inspiration and testimony you and your family are. Michael is a beautiful baby.Praying for Gods continued Grace and Blessings!

Holly Fedele said...

Continued prayers for sweetie pie Michael and Mom and Dad that y'all are taking care of yourselves. He is so cute and it sounds like he is doing great! A little fighter!

As a funny aside, when I look back at my son's caringbridge blog entries written immediately after his diagnosis, I feel embarrassed by the Down's Syndrome, Downs syndrome, Downs Syndrome, etc. Capital letter on Down? Yes?/no? Apostrophe S? I don't know. Capital letter on syndrome? Jeez why is this so hard?? I think I used them all just to cover my bases...LOL.

An interesting tid bit: The United States generally uses an apostrophe S only for conditions that the namer of the condition had him/herself. Dr. Down did not have Trisomy 21 so no apostrophe S. No S at all. The UK and other countries, however, prefer the apostrophe S or just a plain S because although Dr. Down didn't have the condition, he named it and it is his. To each his own. No worries about that. :)

Take care of yourselves while taking care of Michael. Eat well, rest often. (As often as you can.) Continue to cry when you need to.

Emma McGarity said...

What a beautiful baby boy! Welcome Michael!

So glad that the WBC's are coming down. We will continue to pray for God to take the infection away and keep him safe.

Thanks for keeping us up to date. Please let us know if there are specific needs that need prayer as well.

Patty Kline said...

What a beautiful new son you have, Aaron and Sarah! I know he will not only bless your family for being in it, but will bless others as well. When I was 18 (many years ago), and a Girl Scout, one summer I helped run a day camp for two weeks for a Girl Scout troop made up of mentally handicapped girls, where most of the girls had Down Syndrome. They were young teenagers, and were some of the most delightful, caring, loving and fun-loving kids I have ever met! Ever since then I've had a soft spot in my heart for children with Down Syndrome. I know things will not always be easy as you try to help Michael Aaron become all he can be, but I feel sure he will give as much or more than he receives. Oh! Something just flashed into my mind - Special Olympics champion athlete! We'll just have to wait and see what God does with that! Praying for his current health concerns and needs right now, though. One day at a time.

MeandCrg said...

Aaron: God won't give us more than we can handle. I pray Michael will get stronger everyday. What a blessing a new baby is. You have a huge heart and God will give you the strength you need. Melinda (Mertz) Simons

Kris Eberle said...

He is beautiful aaron...!!! Thank you for sharing him, and your heart. Much love and many blessings to all of you. <3

Rai and Shannon said...

So happy that you were blessed by all the comments! You have blessed so many with your music, and now with your sharing of this journey that you and Sarah (and your boys) are on. God has wonderful plans for you and your family, I'm sure of it. And little Michael Aaron was fearfully and wonderfully made! Hoping his health continues to improve, and that Sarah is recovering well!

snkdee said...

Psalm 139:14-18
I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well. My substance was not hid from thee, when I was made in secret, and curiously wrought in the lowest parts of the earth. Thine eyes did see my substance, yet being imperfect; and in thy book all my members were written, which in continuance were fashioned, when as yet there were none of them. How precious also are thy thoughts unto me, O God! how great is the sum of them! If I should count them, they are more in number than the sand: when I awake, I am still with thee.

Laura said...

We just love y'all!! Still praying! Michael is beautiful!!

Cathy Klump said...

So happy little Michael is doing better Aaron! We are praying for all of you! May God comfort you and wrap his loving arms around all of you as you take care of your angel Michael Aaron! God Bless, Kevin and Cathy Klump-WRAF 90.9 Radio

Jennifer said...

What a gorgeous little guy! We have a nephew with Down's Syndrome and I have a close friend who has a daughter with it. Going by their experiences, I can say you will be blessed mightily. Their roads have been hard in many ways, but the journeys have been beautiful. Prayers for you all as you settle into this new adventure!

ager said...

We heard your song on the radio the other day and my son suggested that we pray for you and your new baby. When I told my kids that he may have downs they all thought this was great - not because they don't appreciate the seriousness of his condition - but because we have a down syndrome boy in our homeschool co-op who is the apple of my kids' eye. He has taught my kids more about Gods unconditional love and joy than any lesson from mom. I pray that you'll continue to joyfully receive from God all that he has for you. I have a feeling Michael will be teaching you and Sarah a lot more about His grace. With all our love, The Gerwing Family
P.S. We're the crazy Steeler fans who showed up at your mall concert in Dallas with our Terrible Towel :)

michelle said...

Our third son, Myles, was born 1.5 years ago with Down syndrome. Came as a complete surprise to us. We experienced a good bit of emotion for about 48 hours.... Fear, shocked, unsure of what to expect, etc. BUT we too trust in a perfect, good, and loving Creator... Found so much comfort in Psalm 139. This was no mistake!!! Our love for all of our kids has grown deeper as a result of Myles... We have so much gratitude that the Lord would even allow us to care for a special child like him. Same to you--you will be blessed and have even more compassion having Nicky and Michael in your life. And your other son will be blessed too!! With much love, the Cooper family (Ohio)

Mandy said...

Thank you for the update and for continuing to walk in the fullness of God's grace during this trial. We'll continue to pray for Michael to be home where he belongs as soon as possible. Blessings!

Jane porter said...

Aaron and Sarah,
We rejoice with you both. Please know that you have a prayer warriors on your behalf at Sarasota Alliance Curch. Love to all

Jane porter said...

We at Sarasota Alliance are rejoicing with you and Sarah and are holding you up in prayer ! Hug Sarah and Michael for us.

Carissa said...

So glad you all are doing better! Lil' Michael is one tough baby! I have a NICU baby and let me tell you, they are STUBBORN! They start out fighting and they don't stop when they leave the NICU! haha!! He is so beautiful!

Tricia said...

Prayers are being lifted for you and your family.

Cherry said...

I am praying for you and your family. We, too, are living the NICU experience at this time - a scary, yet miraculous experience. My granddaughter was born 12 weeks early on 11/30/11. God has used the song "On Eagles Wings" by Michael Joncas to sustain us. With each prayer we and Emmalyn have received we have been lifted up on eagles wings and have watched in awe miracles we could never have dreamed happen. I believe God will also do that for your family. The lyrics are:

You who dwell in the shelter of the Lord who abide in His shadow for life say to the Lord "My refuge, my rock in whom I trust!"

Chorus: And He will raise you up on eagles' wings, bear you on the breath of dawn, make you to shine like the sun and hold you in the palm of His hand.

The snare of the fowler will never capture you and famine will bring you no fear under His wings your refuge His faithfulness your shield. (Chorus)

You need not fear the terror of the night nor the arrow that flies by day though thousands fall about you near you it shall not come. (Chorus)

For to His angels He's given a command to guard you in all of your ways upon their hands they will bear you up lest you dash your foot against a stone. (Chorus)

And He will raise you up on eagles' wings, bear you on the breath of dawn, make you to shine like the sun and hold you in the palm of His hand.

Aaron, blessings to you and your family. Always remember you are supported by the prayers of many who care!

barryandashley said...

So so happy he is doing well! My husband and I have been praying for him and your family. God is so good!

I was listening to one of your songs this morning thinking ahead to when my own son will be born in May. "My hope is in you Lord, all the day long. I won't be shaken by drought or storm!" Yes, Lord! I hear you!!

Beck Gambill said...

I had no doubt that God's grace would bring you to a place of rest and even joy in the midst of the storm. How wonderful to hear your testimony of love, abounding from every direction. Thanks for sharing your heart.

I'm happy for your family's gift. It's my hearts desire to adopt a child with Down syndrome. We will continue to pray as you adjust to all of the needs that come with the territory.

Nancy said...

On my niece's 10th birthday, my brother posted these thoughts.
"I remember hearing the doctor say "Are you familiar with Down Syndrome?", and how my heart and mind seemed to stop right then and there. I could not get past those words. What did they mean? It created so much uncertainty, fear and confusion which I didn't like. It was a brand new world for both you and us. But that was then!
Now, I know that God did not allow this, but that He orchestrated it from the beginning. He had then and still has a plan for your life. God does NOT make mistakes. He brought you into this world and into our lives to make a difference. You have taught me so much in just 10 short years. You have taught me patience, determination, compassion, laughter, and most importantly, love. You have taught me that I take things that I have for granted, that I shouldn't complain for how hard things might be for me to learn, that every life is valuable.
I will never forget the day that you were born. But I will not forget the many days since then that you have made an impact on me. You are special. While others may see that as a disability, I see it as a very special ability. You have a unique personality, like no one else before or after. I thank God for you each and every day. Happy birthday Emily."

I thought they may be a comfort to you as you begin this adventure of parenting your beautiful little one. You are not alone! I will be praying for you.

Gwen Smith said...

Awesomeness!! I way praying for you, Sarah, Michael, your family and the medical staff just this morning. This is such great news. SO blessed to hear how the LORD is leading you to deeper levels of His grace and goodness through this birth and new life adventure! :)

Continued prayers and warm blessings from NC,
Gwen

Coby@adoptionfoundationtn said...

I heard a piece of your story on the radio this a.m. and (now) I step out of my comfort zone to say these words to your family.You don't know this mother of four (each with their own special needs).This journey is not one my husband and I thought of or dreamed about, BUT it is NOT one I would trade---even on the hard days(did I just say that!? LOL.)One thing is true, I FEEL HIS PRESENCE in my life EVERY DAY.The life I would have planned for myself would have never have placed me in HIS ARMS, feeling HIM, seeing HIM use my family for HIS GLORY (literally) EVERY DAY. God is so good. The world will whisper that you should mourn, but my family is proof that HE KNOWS THE PLANS HE HAS FOR YOU...meant for GOOD AND NOT HARM. I am excited for your family, for you have been given THE gift of not taking the smallest things for granted. YOU WILL SEE the millions of "tiny miracles" it takes for each of us to grow to be both the wonderfully and beautifully person he created us to be.
Those who carry HIS light are closet to the fire. :) I sit smiling in excitement for your family. You have been given a front row ticket at watching HIM work, above and beyond what you could have imagined for yourselves. Get ready...because HE is about to part the waters! :)

GODSHEALING24 said...

God, tells us not to worry, but that doesn't mean we are not human, that we can't feel the pain and shock. If we didn't re-act to feelings and emotions we wouldn't be human. Yes, you have some long days ahead of you, but one thing I know for sure. You are a true man of God, and you and your family will come out on top, because of you and Sarah's unfailing faith in God the Almighty. You have given us so much through your music, and we will all continue to stand by you and your family with prayers. God bless you Aaron & Sarah

Laura Watts said...

It is so encouraging to watch you and your family reach out for the abundant blessing Christ is waiting to give you. The journey has just begun - and it will be an awesome one! Please know that my family - and especially our son and prayer warrior Jonathan, 24 with Down syndrome - is praying for you strength, wisdom and grace as your embrace this opportunity to learn more about the image of God.

Heather said...

Just heard your news on KLOVE. I will be praying for you, your wife, your new beautiful edition and his sibling. God is good, All the time. We have a daughter with DS and we went through the exact emotions you are going through right now. Things will work out and your entire worldview will be changed. Despite having a solid relationship with Christ I had a secular world view when it came to life, success, and dreams. The reality of my mourning period after the birth of our daughter was about my thoughts, hopes and dreams dying. This isn't such a bad thing. Too often, we hold up the ability to hold a job, graduate from high school and college and start a family as being our markers of success. The American dream. But Christ's dream for us is to put Him first and to love others more than we love ourselves. I promise you, that your little one will be able to do both of these things. In fact, he will teach you how to do both of these things better than you ever have before. While his body may not be "normal" like mine or yours, his soul is and last I checked that's all he will need. May God continue to bless you.

Beck Gambill said...

Aaron, I've been researching Down Syndrome and adoption recently because God has so laid the two on my heart. I wanted to share some of the blogs I've found to be the most encouraging. You may not be ready to read them right now but perhaps hearing the stories of others who have walked a similar path will be encouraging.

Ellen is an C&MA pastors wife they had a daughter with DS a few years ago and have since adopted a daughter with Cerebral Palsy. Her story and writing are beautiful.
http://elliestumbo.blogspot.com/2011/10/road-marker-321-by-ellen-stumbo.html
I've recently found this blog and it's full of hope and joy.
http://noahsdad.com/story/
This family had a little girl with Down Syndrome eighteen months ago and then adopted another girl with DS recently, it's a beautiful, powerful story.
http://theblessingofverity.com/
This community of people champion life and support individuals and family's touched by DS.
http://www.idscforlife.org/

Continue to pray for God's perfect peace and provision!

Gen said...

♥God's everlasting love and peace!♥

Carole said...

May our Lord continue to bless you, through His great mercies, with immesurably more than all you ask or imagine.

Ron said...

We are praying for all of you. We have four boys, 17,16,14 and 11. Our 16 and 11 have X-linked Lissencephaly. It is very hard to process and adjust to having a second child with special needs. Everyone's experience is different, but God remains the same. Hallelujah!! We have learned so much more from our boys than we could ever teach them. They are how God shows His unconditional love to a broken world. Blessings to you!

Kara Krikorian said...

Wonderful to read, Aaron.

Ellen Stumbo said...

Nichole was 2 weeks old when Andy said, "This might sound crazy, but I want Nichole to have Down syndrome." It is like you are thrown into a "club" that seemed so scary, then you go, "Wait a second, this is incredibly amazing! I can't believe we get to be a part of this!" And you will see God's heart in new and awe-filled ways.

cindy said...

What a beautiful and special gift your little Michael is! Prayers for you and your family on this different than anticipated journey.
"Down Came the Rain" - wow, your wife will be an inspiration to so many. Imagine how she can touch the lives of other parents who don't have your faith in God.
By the way, the daily verse, Philippians 2:14-16 - I have written on a notecard in my work bag (I work in a NICU).
Thank you for sharing your thoughts and feelings. You and your beautiful family will be an inspiration, touching many lives, as I'm sure you already have in the NICU - family and staff alike.

Renee said...

You don't know me, but I was asked to visit your site by a fellow Church member who follows us on FB. I have 6 kids, 5 of whom are medically/developmentally challenged. 4 are adopted and 2 are homegrown. One of our homegrown is among those with challenges. But, then again. . . we're all challenged aren't we. LOL I am both immensely happy for your new addition, but completely understand the grieving you are going through as well. You will continue to grieve for years to come, but not that your child is here, but the loss of what "could have been". I don't imagine for one single moment you will grieve the future nor the amazing adventure you are about to embark upon. I would love to offer you any help in any way I can. I am on FB under Renee Perkins-Curkendall, I have a blog at www.makingmessymiracles.blogspot.com and have a website at www.caringbridge.com/ny/my2angels. Hang in there, it's going to be a heck of a ride, but you WILL be a better family and better parents because of it. God does KNOW what he's doing.
Hugs,
Renee

The Spicer Family said...

I am so happy for you guys, and praying, praying, praying for your precious son's health! He was born 11years after we were introduced to our daughter Emma! At the time, a dear friend wrote a letter to us that I still treasure, saying that God had just reached down and given us a big ol' kiss on the forehead. She was so right! God, out of His all-encompassing love for our family, gave us the perfect daughter full of lessons and fun and spunk and a great dancer, to boot! You won't believe what Michael will do, who he will touch, how deeply you will love him and how intensely you will parent him.

We are, in fact, one of the many families who fell so deeply in love with our daughter that we have added two more daughters with Down syndrome to our family and the blessings have been multiplied for sure. We also have five typical kids who love their siblings to pieces and are the biggest motivators my girls have, developmentally speaking. Isn't God gracious like that?

I feel sure the coming weeks will be a fog as you face a scary surgery with your tiny son. Please know that scores and scores of parents (you were drafted into an army of parents, in case no one has yet mentioned it!) who will be praying on Michael's behalf, not to mention praying for you and your wife.

Thank you for sharing him with us, and for your honesty here. God bless!

Jill

shelley said...

Hi, I am a friend of Valerie Cushing's and have a beautiful daughter (age 2) with Down syndrome. She shared your link with me and I was touched. They ARE blessings... Abrielle is my youngest of 4 and amazing! She has brought SO much joy to our lives and touches the lives of everyone she meets God makes no mistakes! She has a you tube channel that may very well inspire you! <3 for your new little bundle. here is my daughter Abrielle's you tube page created to inspire and spread the word on DS. http://www.youtube.com/user/MyAmazingBrie When you have the time take a look so you know what you have been blessed with!

Wes said...

I can tell you as a dad with a 3.5 yr old Boy with DS that you have just been Welcomed to one of the largest families! I never had such support and love after finding out the suprising news, it continues today! Your son will teach you more than we could ever teach ourselves about love, peace and seeing the world through new eyes. You are stronger than I was then, Christ was not first place in my life as he is now. Congratulations on your special gift, his siblings are going to love him like you could never imagine... Enjoy him as a baby like you would your others, for he to will grow and do everything that your others do! God Bless you and your wife

christy said...

Congrats to your family. It will be such a roller coaster. But I must say, it is a ride that you won't regret. My son is 15 and he is the greatest joy ever.

I think this poem says it all. (A little long but worth the read)


by 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 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...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 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.

Tara said...

Thank you so much for the update! I knew you'd all be okay. :) I actually had a dream (way too much Nyquil) that I sat in the NICU and talked to your wife and helped her process. Crazy. But that's how much you are both on my heart. I'm so happy to hear things are moving in the right direction with the infection.

We do have an awesome community/club and I can't tell you how many times I have been blessed by it.

I want to put a plug in (again) for the Down syndrome board on babycenter.com. Many of us had SO many questions those first few days and weeks and there is a wealth of knowledge on that board for any questions you may have.

Blessings! Enjoy your gift! He's a baby, above all.

jofenton said...

Aaron and Sarah, you have been in my thoughts and prayers. I met you at the Relevant conference where I was part of the OneVerse team. I even got to watch your two boys for about 10 minutes while Sarah was praying with Jill Monaco. You two then shared from the stage, and my heart went out to you in a big way. You live the message of the gospel, how precious that Good News is to us and how it is our hope. (My Hope Is In You - love that song.)

I have a daughter who has autism. I can testify to exactly what you've heard now from so many others. She blesses like no one else I know. Last week she surprised me when I asked her, "Elsie, do you love Jesus?" And she replied, "I love Jesus." (I have never coached her on those words. In fact, she's never said "love" before.) It was fantastic.

I love your little boy for who he is. Thanks for being so honest and giving hope through your testimony.

Blessings,
Johanna Fenton
Social media coordinator for OneVerse

Deborah Nelson said...

I have a 13 year old boy, Adam, with DS. What amazes me most about him is what he teaches me about Christ's love. He is the oldest of my three children. He is the most sharing, he is the one who thinks of others before him, he is the one who forgives instantly upon request, he is the most excited for others accompishments, he is the one who joys in the moments others rush past, he is the one that shows the most appreciation for gifts, and on and on he teaches me how to be more like Jesus! I thank God I have Adam as an example in my life.

Marinda said...

Hey Aaron and Sarah

I am a massage therapist in GA. And done a course in infant massage. (I am a certified Infant massage teacher aswell.) I would love for you to visit Tina Allen's website. She is the found of the liddle kidz foundation and has done wonders all over the world with this program. There is a NICU program that will help your son a lot especially now that he has to get some surgery. There is also an Autism program that you will find a tremendous help. Please contact Tina she will go out off her way to help you out and make your life a lot easier.

Tina's email:tina@liddlekidz.com

http://www.liddlekidz.com/about-tina-allen.html

http://www.liddlekidz.com/massage-and-autism.html

My contact info marindacoetzee@hotmail.com
All the best,
Marinda

HappyGirl said...

My goodness! I know you've had so many readers share their own stories, but I just wanted to add that we, too, welcomed a baby boy into this world 14 months ago today and were surprised to see (almost immediately) that he had Down Syndrome. We named him Luke, and he spent 21 days in the NICU following abdominal surgery after his birth. Although my husband went through a grieving stage, I was never sad or felt any grief about Luke's diagnosis. I let him know from the start that I was PROUD of him for who he is, and that feeling hasn't changed one bit! The Lord truly gave us the most perfect child ever. He is crawling, pulling up, tries to talk (he can say Mama, of course!), and naturally, he brings a smile to every person he encounters!!! May God bless you richly on this journey, and we'll be praying for his surgery, too!!!

Bryan, Elizabeth, Dex and Georgie said...

Hello! My friend Anna Wells sent me to your blog. We adopted a precious baby boy 6 months ago with Down syndrome. Your blog brought tears to my eyes, and I am so encpuraged to hear your account of being in awe of the blessing God has given you! I am so thrilled for you all! You are blessed to add little Michael to your family!

Anna has our contact info, if you or your wife would like to talk to my husband and I about our journey with our son, Dex. We are praying for your family!

Elizabeth and Bryan Noel

Jennifer said...

The tears I cry are for the memories I have of finding out our son, Jackson, has Down Syndrome. We did not know until he was born and we also found out he had a complete AV Canal Septum Defect of his heart. He had surgery at 10 weeks old. He is now almost 6. He is a joy. We would not have chosen this path, and I may not know this side of heaven why God put us on it, but I am so glad he did. I hope your heart is ready to explode with love. I am a better wife, mom and person because of Jackson in my life. I also have a daughter who is 8 and she was born at 29 weeks and spent almost 2 months in the NICU. She is beautiful and loves her brother more than anyone could ask her to. Thank you for reminding me how blessed I am. May God heal Michael's heart so surgery is not needed. That was our prayer for Jackson. It did not happen, but He saw us through that day. Praying Psalm 139 over Michael.

Lisa said...

Wow, what a beautiful little guy and an equally beautiful family :). CONGRATULATIONS! These early days after a Ds diagnosis are hard, confusing, bittersweet...but then also empowering, life-affirming, filled with love--as you are already experiencing. Our fifth child, our third daughter, was born with Down syndrome (a surprise, and a bit of a shock). I remember having a lot of thoughts, feelings and details to sort through when she was tiny. But we were all "breathing yes" before long at all. Life, love and faith are rich in texture and depth...as we have found to be also true in living life with Down syndrome. It was woven into our story long before Bridget arrived! As several other families have commented here already, we've also gone on to adopt another little girl with Ds. I've written extensively about both girls. The beginning of our story is here: http://bridgets-light.blogspot.com/2009/09/bridgets-light.html. Love and prayers for all of you!

Carmen said...

Hi. Thanks so much for sharing your RAW feelings and thoughts... and encouraging words. My husband and I have been walking through our daughters first 6 months of being diagnosed with autism. You said it so perfectly when you said, "If I had no Hope. If we had no trust in a Perfectly Loving God's Perfectly Loving Plan...I wonder how nuts I'd be right now. Our very lives rest in the palm of His hand. There is no need to fear." This fact is the only thing that holds me together at times. Thanks for reminder. Many prayers of grace and strength for you and your family!

Unknown said...

What a blessing you have been given!! My oldest son (Grayson Aaron) is 2 and has DS and is the most amazing little guy! I feel honored that God chose to bless me with such a great kid. He spent 2 months in the NICU, but is now in perfect health. "My hope is in you" has been playing through my head for the past few weeks, and I was amazed when I heard about your special little guy with an extra chromosome!! You are now a member of a fabulous club! God Bless!!!

CarrieMae said...

God Bless your family for your joys, your trials & all the simple acts of LIFE in between!

Susan said...

We too have a Michael with Ds. He is now five and truly amazes us! He is so capable, I am embarrassed to say that I had no idea what to expect upon receiving the news and have been so delighted in him. He is adored by all five of his siblings (4 older and one younger). He has taken longer to learn things(speaking, walking), but does indeed do all of these things and is a really good learner and runner. Set expectations high and provide support needed to help him accomplish. Take time to enjoy your sweet son and don't worry about the Ds, he really is just a baby, that yes, needs some extra medical attention right now. We will be praying for you and your family. Our son had heart surgery at three months of age. You are not walking alone. God bless.

Mandy said...

Congrats on your new son! Our 4th child was born with Ds and I have to say, after the shock of it all, that he is the best thing I never asked for! In fact, it led us to adopt a little boy from Ukraine with Ds 3 years later :)
May God keep you and your family close and fill you with strength, hope and love for all blessings that he bestows on your family :)

Dolli said...

What a beautiful boy! God Bless you and your family; He has found the perfect one to raise this amazing child. I will pray for your family and your son that God continues to shower His love and blessing on all of you.

Beth said...

Michael is beautiful! I'm so glad that he is doing better and the infection is being conquered.

You will all be in my prayers!

Denise said...

I'm a friend of Sarah's from MOPS, I wanted to say congratulations on the birth of Michael and that I will be praying for you guys! God Bless!

Jenny said...

I am a huge fan of you and your music. When i heard about your newest addition, i looked u up and read your blog. Congratulations Shust Family! I understand every emotion u went through, as my husband and I were there as well 6 years ago this April. However, as he has grown so have we! God has and continues to bless our entire family through our Samuel. To know him, is to know pure joy! You will know this joy too through your Michael. I have faith God has great things in store for Michael and your sweet family. As you know, "God doesn't make mistakes"! He is beautifully and wondefully made!Much love and blessings.
In Christ,
Jenny Evers
Alabama

Melissa Wren said...

Congratulations to your family!!! You have been so blessed with talents and such a gift to sing and touch peoples hearts with Gods love!!! You have just received your Biggest Blessing/Gift of all in your little Michael! I to have a daughter with a heart condition and down syndrome~ She is truly the Love of my life and my greatest Blessing. I truly hope you will be able to reach & touch people with this experience you are going through right now...
My heart has been very troubled since the birth of my daughter Haylee 3 years ago to realize the reality that 90% of all mothers who find out they have a baby with Down syndrome abort there unborn Angel because the baby is not perfect from there ignorrance of what perfect means...
I truly feel your baby boy Michael was born to you so you can help to bring awareness and give a voice to all those sweet angels with down syndrome who never had a chance. 90% is such a high percentage!!! Michael is truley an answer to mine and several other parents prayers to help bring awareness of the horrific statistics and to help bring them down~ I look so forward to hearing the songs you will write in the future to help bring awareness to the miraculous Love that your family will share because of Your greatest earthly gift Sweet Michael:) My heart and prayers are with you~ God is Good!!!

MargoH3 said...

Congrats on a beautiful baby boy. Down Syndrome children are truly a gift from GOD. We have a GREAT friend with Down Syndrome. He has taught us so much about how to serve GOD and to LOVE EVERYONE! He is truly a special person and our lives have been blessed by his outlook on life and Love for GOD. We will keep your family in our prayers. God has truly blessed you!

djbird73 said...

Praise to God that He has your little Michael in His loving hands...and your parental loving arms. It's no accident he has blessed you with each other.

The day we found out our son would be born with Down Syndrome 8 years ago, we spent the afternoon grieving and sharing the news with family and friends. That night, not having the strength to cook, we went to Subway. As we walked through the doors, we noticed 6 Special Needs adults having dinner...3 of them had DS (we call them our "Angels in the Subway"). On a day when we struggled to find hope, God revealed His peace through our "Angels".

May your life be blessed with your own special angel! Praying His healing for Michael and your family!

tmbethea said...

Congratulations on your beautiful baby boy! My husband and I were in your shoes a little over 2 years ago. Our baby girl, Allie, was born with Down Syndrome and an AV canal defect just like Michael. She was also early and spent 6 weeks in NICU because she was not eating well. She had surgery at 6 months old to repair the heart defect and did great! She is now a thriving, rambunctious, amazingly wonderful 2 year old! She is walking and talking and signing. She is truly a blessing to all she encounters! When we found out about the possibility that our baby girl would have Downs, a friend of my sent me a poem entitled, Welcome to Holland. It really put things in perspective for my husband and I. If you have a moment, google it. We will continue to pray for little Michael and your entire family! Again, congratulations on receiving one of the most wonderful gifts your family could ever receive!

thetaooftulips said...

Nice to meet you and congrats on your beautiful baby boy! Our magical one is coming up on 3 years, and I would say the biggest gift outside of Abigail herself is the community that came with her. I'll pray your little one continues to do well!

Sasha said...

a friend sent me a link to your blog via facebook ... welcome to parenting a child with down syndrome - you're right, you'll be amazed beyond your wildest dreams! I could write a novel - but I'll spare you - but as quick as I can I'll tell you about our Zoey! she spent 5 1/2 weeks in NICU (she was born with a heart defect and had a hard time stabilizing with that - but had to wait for surgery till she was bigger and stronger) and came home on multiple medications and with a g-tube! at three months she had her corrective heart surgery and that was a major turning point (though she'd already made progress with bottle feeding, etc.) ... she's nearly two now and she's walking!!! everyone who meets her falls instantly in love and she has three siblings who adore her!!! I'm so glad you have the hope of the Lord and know that on the tough days you just have to pray and get through it!!!

Maggie said...

I just saw Michael's birth announcement today. CONGRATULATIONS! It might sound crazy, but I get really excited when I hear about someone with Down syndrome. I smile through my tears when I learn of new travelling companions on the journey through Holland. I will be praying for your safe travels!

Cindy in GA said...

Michael is so precious! I will be praying for him and for all of you. The medical challenges will be hard, but the Lord will give you grace and strength to get through. Congratulations on your sweet little blessing!

Kris said...

Congratulations on your new son. He is going to be the biggest blessing and you will find God in his face. I know I do with my son who has down syndrome. Go to a website called Noahsdad.com. It will be so helpful.

The Magoos :) said...

Aaron, don't know if you will remember in the tour you had to Maine. I talked with you after you worshiped with us at Abundant Life Church in Bangor, Me. I was the one that showed you a picture of the moose when you said you had never seen one.

You have been such an encouragement to so many people including my family and I. Hope, Faith and Love has kept you strong through it all. We thank you for your awesome music that touches are souls.

Abba Daddy is so faithful. He will never give us more than what we can handle. He has Blessed your family with such a gift and vice versa. Your little guy is so blessed to have such loving parents, that loves the King of Kings with all there hearts. Parents that give thanks in all situations. A TRUE EXAMPLE OF ABBA DADDY'S LOVE!!!

May God pour his glory out over your family all of your days!!

My family and I will continue to pray for Abba Daddy's supernatural covering over your little guy as well as the rest of the family. Thank you Abba Father that your mercy and grace is new everyday!!

Sherry White said...

Congratulations on your precious new son. We have 3 little girls with Ds adopted from Ukraine, and they are the absolute JOY of our life! :) My husband also has a 26 y/o cousin with Ds, whose name also happens to be Michael. He is an AMAZING young man! He works 2 jobs and can rock a set of drums! You are in for a wonderful new chapter in your life.

Korey Hickling (Jack's mom) said...

I have just heard of your news and this blog, and I am honored to welcome your family to the wonderful world of Down syndrome. My husband and I welcomed into the world a beautiful, magnificent gift from God, our son Jack, on May 28, 2010. Within hours of his birth we found out that he has Down syndrome. Our initial reactions were much like yours but I want you to know how blessed we now feel to have our little Jack in our lives. I've learned more from our sweet boy during his 19 months on this earth than I've ever learned from anyone else, and I have no doubt that this is God's work. We have some emotionally tough days, but mostly I just praise God for our angel. Feel free to visit our blog, The "Jack" Pot, at www.johnrhickling@blogspot.com!

Most mportantly, CONGRATULATIONS on your beautiful miracle! He is a such a gift, and your family is abundantly blessed!

Natalie said...

I just want you to know you and your family are in my prayers. In June, I gave birth to a beautiful baby boy who also came with surprises. Down syndrome and a large VSD (hole in heart). It has been quite a journey with out little Israel and I remember the first few weeks being really tough. He is now 7 months old and thriving after heart surgery. I have to say that your music was a great inspiration to me during those most difficult times. I heard the news today about your son and had to let you know your son is in the best of hands! God bless you and your family. You are all in my prayers.

Beverly said...

Aaron, congratulations on the birth of your son, Michael. He is truly fearfully and wonderfully made. I, too, am the mother of a son with Down Syndrome. He is now 26 years old. My husband calls Jeremy his "hero". He is truly amazing! I won't say the journey is easy, but it is certainly worth the blessings you will receive. Little Michael will bring so much joy to your life. Jeremy is employed full-time and totally self-supportive. He lives in his own apartment and has written a book about his life entitled "Where's Jeremy? A Life Journey of Living with Down Syndrome." He truly loves the Lord and is quite a prayer warrior. We will add Michael to our prayer list.

Sara Joy Martin said...

What a blessing sweet Michael already is to your family. I'm grateful to watch you and Sarah trust the Lord as he leads you by the hour. Praying for you, Sarah, and all 3 of your sweet and precious boys :)

Genette said...

Congratulations on your new son! Add more prayers from another parent of a son with Ds. Five years have passed since we were blessed with our sweet Timothy. He's our own slice of heaven! That shared, be easy with yourself & your grief. Submitting to God's plan can be a bumpy process. None of us pray for medical/life challenges for our children... or for ourselves as parents. God Bless You!

Emilee Kaye said...

Aaron and Sarah,
When I read your last post while on my couch with my family my heart broke. I wasn't in tears, but I wanted to be... I remember the first time I went on your {Aaron's} site and learned that his son had a disease {that I really can't spell! ;)}. I was
really touched hearing about his healing last year and was thrilled. I honestly felt guilty that I had forgotten {and hadn't prayed} about the disease. We/I will lift your sweet little boy up-- as well as the whole family. No-- I REALLY will! :) When you get the chance... please continue to update your extended family in Christ. :) You guys have beautiful feet. ''How beautiful are the feet of those who bring good news.'' ~Romans 10:15

Batang Manunulat said...

I've benn praying for your family :)

Cheryll said...

"Fearfully and Wonderfully Made", that's what he is :0)

LYNN MARIE said...

GOD BLESS YOU AND YOUR FAMILY! YOU & YOUR WIFE AMAZE ME WITH YOUR STRENGTH & COURAGE! I HAVE BEEN & WILL CONTINUE TO LIFT YOU ALL UP IN PRAY! GOD HAS HIS BIG WARM ARMS WRAPPED AROUND YOUR FAMILY! GOD BLESS!

Brenda said...

Overjoyed that your little guy is doing so much better... You are truly blessed, God gave you both the child that needed you and that you needed to have. Your love, dedication, and belief in God and his love have brought you to this beautiful life. May God continue to bless you all.

GoldenAngelsWorks said...

What a huge blessing you have been given.
I pray that this little angel can go home soon to be with his loving family...

One of my dear friends has a blog celebrating her family and wonderful Downs Syndrome daughters.... http://welovemeghanleigh.blogspot.com/

I have had the opportunity to meet the beautiful little girls and absolutely love them.

God Bless you and your family. Sending big hugs to that little angel!

Hailey @ Me and My Boys said...

Congrats on your baby boy! That's so exciting! Don't know if you've ever come across her blog or not (she's huge in the blogging community), but Kelle Hampton is actually doing a fundraiser for DS as I type this (www.kellehampton.com). Just thought you might be interested to see all of the success stories related to her and those who follow her.
Anyway, will pray for your family. And don't worry, God's got all of you in His hands. Everything will be fine. Enjoy that sweet baby boy of yours! :)

cyncynlu2 said...

Congratulations on your new son. I am sure he is and will be an absolute blessing. When my last child, my only daughter was born, we were told she had a "heart defect". She had an interrupted aortic arch, which basically meant her valve was messed up. She underwent open heart surgery at 7 days old. It is amazing what the doctors can do. At the end of that surgery they were singing Amazing Grace. Fast forward 15 yrs. Sarah got a staph infection in October and a week later she was having a second open heart surgery. Only this time she met Jesus at the end of the operation. It was and continues to be heart breaking. I also buried a baby boy twenty five years ago. I do have two adult men kids who are 24, and almost 22. It has been a very tough three months so far. I only hope it improves with time.
I love the name Sarah and wish you and her a wonderful life with your amazing children.
God bless,
Cyndi

Marti's World said...

My cousin was born with Down Syndrome. He wasn't expected to live beyond his first week on earth. He endured several heart surgeries during his first years of life (he called his scar his "zipper"). The doctors told my aunt to put him in a home and that he would never walk or talk. This was 40 years ago. She didn't listen to the experts. David blessed our family for more than 30 years before his passing nine years ago. We all miss him terribly and often recall the joy he spread to all of us during his time on earth. Your little Michael will bless you far beyond anything you can imagine. Enjoy the ride. It'll be bumpy at times, but that just adds to the satisfaction when things are smooth. God's blessings to you and your family.

LQQKING2JC said...

Praying for your little one and all your family. I taught special needs children (most were Down's Syndrome)in Sunday School for over 10 years. It was the biggest blessing I've had in all my years of ministry. You will never find anyone as pure in heart and as close as you can get to Our Father's heart as you will find in these children. You have many blessings to look forward to. Yes, there will be mountains to climb and obstacles to overcome, but God will see you through and you will reap far more than you could ever give. Always remember.. JESUS NEVER FAILS :)

Leslie Mickley said...

Prayers for you, your wife, and your new born. Prayers that the whole family can gain strength from God in the days ahead of you. Thank you for sharing your life with us, including the joys, and the heartaches.

Ethna Elizondo said...

Hi, its the first time I read your blog, and well just wanted to share with you about my brother.. He was also born with down syndrome.. But he has been the greatest blessing I've ever had.. Always full of love, joy and God! You can look up videos of him on youtube, "Jimmy Elizondo".
Ill be praying for your son, so he can be healed completly in whatever is bothering his body, for your family that God may Show hiS way and His will through all this.
Prepare for all the blessings that are coming your way!!

Debbie Clark said...

Congratulations on your new little baby. I pray that all goes well.

apeercy1984 said...

To the Shust Family,
As I was driving my daughter to the children's hospital in Indianapolis, we were listening to the K Love radio station and I heard them talking about prayers for the Shust family today. They were briefly talking about little Michael and the trials you all have gone through. My little girl, who is 3.5 years old now is proof that our God is an awesome God. After hearing a little bit on the radio I decided to get online to find your blog and my eyes filled with tears while reading because I was in your same shoes in 2008. While my daughter was hospitalized for feeding difficulties, at 2 months old, laying in her hospital bed, she was on oxygen and had an NG feeding tube down one nostril and an NJ feeding tube down the other side. While they tried both tubes out and tweaking her feedings to see what she would tolerate. After two weeks of tweaking everything, we decided to have a G tube put in along with a couple other surgeries. Due to other difficulties, about a month later she had a GJ tube placed which was in for nearly a year before going back to a G tube. All I can say is I know how you all must feel now and know that there are a lot of people praying for you and your family. Never give up in your faith in the Lord. God blessed your family with these children because he knew that you could handle it. Keep your heads up and God Bless you all!!!

Karen Cotton wyo writer/artist/musician said...

Aaron and Sarah
Congrats on your new bundle of joy.
I've been in the nicu at colorado childrens hospital since dec twenty first. My babygirl was born ten weeks early and I was a really healthy mom during the pregnancy. She is doing better everyday. We call her our little christmas miracle. If you and your wife need to talk to someone who is sharing a very similar experience and need some encouragement feel free to email me at cotton.karen@gmail.com. I've seen so many things at the nicu and the hospital and the ronald mcdonald house where my husband and I stay.
just know if your baby is at a nicu he's getting the best care ever. Just remember to also care about you and take care of each other. Its so easy to get run down. The chaplains at this hospital have helped meso much ...maybe your hospital has them too.
may god bless you both and your precious boy:)
From our family to yours
karen cotton
ps im typing this from my cellphone which is why there is nothing in caps:)

Heidi said...

Congratulations on your new little one! I will continue to pray for your entire family. God bless you all today!

Krista said...

Welcome to the family Michael! And welcome to the DS family Shust family...you have no idea the blessings in store. You have a tonne of prayer warriors who know what you are going through, lots of love.

Valerie Strohl said...

God Bless you all! You have been given the most precious gift, just like your other little ones. You will laugh, cry, pray and hope for them all. Welcome to our beautiful wonderful world. You are loved!

Fatcat said...

He is gorgeous! Enjoy him!

Mel-ann said...

I sit here with tears in my eyes writing this because we have recetly had a similar life experiance.

My son Samuel (and his twin sister) were born October 21, 2011 at 30 weeks. November 1, 2011 we recived the results of his chromosone test, which was positive for Trisomy 21. Sam spent 56 days in the NICU and came home December 16th.

The next few weeks will be very difficult, one thing we did that helped was to keep a big piece of poster board at the table and we'd write down all the daily blessings. This is helpful to get through the ups and downs of the NICU.

We will be praying Michael has more up days than down days while in the NICU and that you feel God's arms around you while you're mourning the loss of dreams you didn't even know you had and joy, peace, and courage to start dreaming again.

michelle said...

Congratulations! He is beautiful and will change your world. All of us who have children enhanced with an extra chromosome will tell you the same thing! Check out noahsdad.com if you haven't already. A great resource from a Christian (very proud) father. He is awesome. Again, congratulations.

carole mondeaux said...

We all are praying for baby Michael.He is God's gift to you and Sarah.God only gives special children to special parents.Stay strong in the Lord.

Kelly said...

A friend of mine just shared your blog with me. Congrats on your son! I am a DS mommy too. My little Boston came 10 weeks early (and weighed only 2 pounds)so we actually did not know right away that he had Down Syndrome....so not the typical "birth story" as far as Down Syndrome goes. He was about 7 weeks old when we received the genetic testing results (these were testing for rett syndrome which my 6 year old daughter has) I look forward to following your blog! My little one is at www.bostonclarkbutler.blogspot.com :) Hugs to you and your BEAUTIFUL family!

Jaime said...

My sister has Down Syndrome and she is one of the biggest blessings in my life. My family is praying for yours!

sweet momma luv u said...

Bless you and your precious family!! Congrats on your new son!!We will continue to pray for your family. As a parent of a child with Autism it is a road so different from what I dreamed of.....but God knew the joy that our precious daughter would bring. We have learned so much about his grace, patience and mercy from her. Your life will be full and blessed!!
Jody

RogersFamily said...

Hi guys, I dont have any experience with DS to help you out in that way but as family in Christ just wanted to let you know my family is praying for yours and that your son is absolutely beautiful! :)

Amy said...

Congratulations on your beautiful baby! Almost 2 years ago I gave birth to my beautiful, amazing daughter, Willow Rose. Shortly after her birth we were given the news that she has Down Syndrome. We were in a state of shock, denial, and grief. That night I stayed awake crying and praying, I never went to sleep. The next morning as the sun was rising I was reminded of the verse that says, though weeping may remain for the night. Joy comes in the morning. I clung to that and the Lord changed me from that moment on I was not the same. She has brought more joy to our family then we ever imagined. Our older daughters adore her and we are so thankful HE made her just the way she is. Your life will be filled with such richness because of him. Congrats!

L. Risor said...

I have a 32 years old son born with a physical birth defect, and my new husband has a grown son, who he calls "special"... others may feel sorry for us or him, for his mental disability, but in his own way he is brilliant, plus he is as perfect as any baby ever born(before your new Michael)... he judges noone, fears nothing, is offended by nothing, worries about nothing, is eager to wake each and every day, sees life as nothing but utter joy, is as purely innocent as is humanly possible, eagerly walks to church and work, has worked at goodwill for almost three decades... a more perfect baby was never born... well maybe besides your Michael! Enjoy him and all the pure innocent pleasure he will show you life is so naturally filled with!