Wednesday, January 18, 2012

Michael Aaron Update 3

Such a strange, beautiful but delicate place I find myself right now. I'm utterly overwhelmed and blessed by the encouragement and advice flowing in, and for those of you who mention that their comments may never reach my eyes, be assured, they all do, before I click the word publish. At that point they become public in order to bless others.

I know that Michael's story has become relatively more public than other birth stories, and I find that to be slightly disquieting. He is special, to be sure, but no more special than every other child that I've read about in your comments, any other child on the planet. We're deeply moved beyond words that radio stations are sharing our story and are asking you to pray. Yet I feel inclined to say that I don't believe that because of that attention, our Omnipotent God is necessarily more likely to act. That could mean prayers of people with a greater number of Twitter followers or Facebook likes would be more likely to experience answered prayer. I absolutely believe in the power of prayer, and I believe the mystery of the purpose of prayer may go deeper than we tend to give it credit. But, for those who disagree with that thinking, let me state that I am not asking you for prayer. I will tell you our story. It's up to you whether you pray, not pray...or unsubscribe. :)

We know from Scripture that the prayers of just one man can move the heart of God (Abraham interceding for Lot or Elijah praying it would rain) and I know that when I draw near to God, through prayer, He draws near to me. When I surrender to His will, my will becomes secondary. Prayer is beneficial to me in far more ways than just receiving affirmative answers.

So. Here's our story for the day:

Starting at 3am, my two oldest boys (5 and 3) walked down the hallway and crawled into bed with their daddy. We have always encouraged our children to sleep in their own beds. Exceptions are utterly marvelous. ;) In the morning, I got the boys ready for school, Classical Conversations, where Daniel, my 5 year old, gave his weekly presentation, this one on his family. Daniel took his place in front of the class.
"My name is Daniel, I have a brand new brother. His name is Michael Aaron Shust. He is 5 years old (he meant days) and weighs 5 pounds. He has Down Syndrome which means he will smile a lot, laugh a lot, share his toys very easily and give lots of hugs. It also means his heart is very sick and will need surgery to fix it. He is my brother and I love him and I can't wait for him to come home."

Then he passed around the picture of himself holding Michael, the one I posted yesterday, and asked if there were any questions. I was so proud!

Michael's Bilirubin is down. :) His cultures are good, but his weight is still low and he didn't eat very well today. But tonight at 8pm he ate his entire bottle, no need for the the feeding tube...that he completely yanked out for the 3rd time. Ouch. He's a feisty kid for having low tone. ;)

Sarah is still rocking the NICU. I asked her today how she was doing emotionally in the hospital non-stop. "Oh I'm fine," she dismissed. She was wired to handle this. Thank you, Jesus. I was not. Get this: a nurse cried in Michael's room this evening because of Sarah's "spirit". She said she couldn't imagine what Sarah was going through but she was handling it so well. Sarah said it was a totally open door to share the love and sovereignty of Jesus with her: "Worth more than a little extra sleep," she said. As I type, the nurse had just walked back in to hear more!

My friend Laura Story asks:
What IF the blessings come through raindrops?
What IF the healing comes through tears?
What IF a thousand sleepless nights are what it takes to know Your near?
What IF trials of this life are Your mercies in disguise?

You still wanna be blessed? :)

76 comments:

Aaron Shust said...

And a big thanks to Julie for watching the boys this afternoon and Amy for dinner. Both of you. Wonderful.

Keiunna Thompson said...

Beautiful blog brother and I could not agree with you more. I will still lift up Michael as well as the rest of your family in prayer. God bless you and keep you. "Be strong in the Lord and in the power of His might." Your strength is in God. Always. =) God bless you

Blessing Box Cottage® said...

and Amen to all that...God is in control...be blessed all of you..for you are a true blessing to many....Cj

Emma McGarity said...

Aaron, Thanks for continuing to share your story with us. Many of us also have children with special needs, and I truly believe God uses us all to encourage each other. I love Daniel's description of his brother.

Keep those baby pictures coming. Michael is beautiful!

Karen Mayes said...

My family is praying for you. My oldest son doesn't have Down Syndrome but he does have Fragile X Syndrome and we have been humbled to witness God's glory revealed through our "stormy season". Thank you for sharing your story - may it bring many to the throne of Christ.

Soli Deo Gloria!

{http://www.akmayes.com}

Jennifer said...

Hahaha - don't let that low tone fool you! My nephew, who has Down Syndrome, fights a diaper change like no child I've seen. Low tone yes, but not weak! And really, a good strong spirit isn't a bad thing. It's not so good that he uses it to pull out his tubes now, but it will serve him well in life.
Thank you for the reminders in Laura's song. You've blessed me once again.

stephanie said...

Well, I was fine until you quoted Laura's song!! Now I'm crying!! Not sad tears just tears, her song has gotten me through many days.

Your songs too,lol

You and Sarah were both wired for this, you both have your special spot in this. I think you may have found yours right here. Awareness is still so needed with our kids.

beLLa said...

You have a wonderful son, Aaron! God Bless! I will be praying for you and your Family.

Love and Prayers from the Philippines!

-Bella

April Vernon said...

I read some wonderful words yesterday (on the "Everything and Nothing from Essex" blog. It's about how the raw feelings that come early in this journey disappear, how the fear of the diagnosis is replace by so much more and the bad feelings that we feel guilty for feeling as parents fade away...She said she doesn't write about her daughters early days anymore because it seems so distant, then says "It's hard to pay attention to the angry waves a few miles out in the ocean when you are busy admiring the feel of the wet sand between your toes, the little laps of water catching the bottom of your feet, the beautiful shells begging to be picked up and treasured." Micheal will bring you more joy than you thought possible. We are so incredibly blessed to have someone with an extra chromosome in our lives. I have heard people say that the rest of us must be MISSING a chromosome!

nade said...

I know I'm just one of very many but I'm praying for you, your family and sweet Michael. I'm an L/D nurse and I know that God is using your faith already to touch others. Praying for the peace that passes all understanding as you begin this wonderful and scary journey.
Because of His grace...
Nadine Young

amy said...

aaron, the next time you see sarah, will you please give her a big hug from me? thanks.

Wynelle Kessler said...

Aaron, I JUST heard that song on the radio and I thought of your family!!! How awesome is our God! He connects us together even when we are not aware of it, and His Spirit moves through us all. We are each blessed, for different circumstances, through the same Holy Spirit!! Something funny I was remembering the other day (from our college days) is that you used to always do something different with your hair every few months or so. No, your situation is not unique in that no one else has ever gone through it, and Micheal Aaron is not the first Downs baby in the world. But, being in the public eye, you are a unique person in that you are able to show the world that EVERY baby is a gift of God. Blessings on you and your family!

Dan said...

Awesome news! We never understand God's will. Perhaps He is using this so that He can open hearts through your testimony, especially evidenced through the open door to the nurse. When we lost our son when he was four days old, it opened a lot of opportunities to witness and we know of at least one person who will be in the Kingdom because of it. It was worth that one soul. Would I choose to go through that again, no way, but God chooses the path for us and we just need to trust Him in everything He does. He has promised that He will not give us more than we can handle and if we think He was given us more, then we just need to lean on Him more and not try to do it on our own.

Kevin said...

Praying for strength, wisdom, and discernment. Aaron, you and your family have been a great encouragement to me & Cathy.

Blessings

Amy L said...

Congratulations on your new precious little boy. What a GIFT you have been given!

Amy Lucas
Mom to 5 boys,
4 with an extra special chromosome:)

JohnMGladhill said...

Aaron,
I don't know where to begin. I just heard the news on the radio this morning and my heart lept for joy. Long story, short is that we do know what you are going through. Last year my wife gave birth to a boy with DS and we went through the same fear and then joy as we got to know him. It took us a month to get him home and a lot of work after he was home, but what a joy. As he grew in character, the smiles were occuring all the time. What a blessing! We continued to trust in God more and more. There is no easy way to say it, but this past September Jesus couldn't bear to be away from Caleb any longer and took him home to be with him. We now say with confidence that whatever happens, God is always in control, and he loves us more than anything. Like many other bloggers, we are thinking about adopting a downs syndrome child and looking forward to the blessings that God has in store for us. I know you don't have much time, but here is a link to Caleb's blog that my wife kept while he was with us. http://calebsconnection.blogspot.com/ I know you have some wonderful days ahead. God is good, all the time.

Neely said...

Aaron, I love reading your updates. I love you knowing that you have friends out there that are thinking/praying for you, Sarah and the boys. "the peace that passes understanding is my song, and I sing, my hope is in your Lord all the day long."

Becky said...

That song you mention at the end of this post is one of my absolute favorites. It brings tears to my eyes every time I hear it. I am so proud of your five year old. Those siblings are going to amaze you on this journey too. My little one with DS has an older sister, who has been blessed by the gifts of having a younger sister with DS. I see it every day. I will continue to pray, for sure.

amy said...

Your question at the end of this post reminded me of something our neighbor texted me while we were still in the hospital with our little Myra (2 mo old w DS and AV canal). Knowing the many challenges that we had faced in recent years she told me that her grandmother used to say that God challenges the people that he loves. Then she texted...."Are you feeling loved?!" Incidentally she is the same neighbor who texted me yesterday about how she had heard about the birth of your son on KLOVE and how inspiring your story was. Thanks again for sharing your heart with us....how awesome that your family is already ministering to others through this time with your little Michael! Praying he starts chowing like a little piggy and can come home soon! It took Myra a little while too but now she's eating like a champ! God bless!

lisa said...

Congratulations on the birth of your precious baby boy! I heard your story on the radio yesterday - like many who have posted, we were in a similar situation just about one year ago. (the time goes so fast!) Just as you are trying to recover from the trauma and excitement of birth, there are new fears, new things to take in. I understood when you used the word 'raw' in your post. Why is there so much fear associated with the unknown? Welcome to a new adventure. Michael is wonderfully made with a specific purpose in this world!! Our daughter is one now and has blessed our family tremendously in that time. Each day is a miracle. :) Praying for strength and stamina for you all as Michael is in the hospital, and for healing, protection and growth for him. Blessings to you! From a Proud Mommy

Ellen Stumbo said...

Oh boy, is Daniel in for a surprise! Share toys easy? Well, maybe...my little rascal will chase anyone down who dares take her toys. "Nooooo! Mine!" And she might not have many clear words, but you better believe we understand those!

On a different note, there are no sweeter tears than the ones I cried while dealing with Nichole's diagnosis. Those tears brought allowed me to see my brokeness and allow for God's healing. These are sweet moments. Oh they are hard, there are so many different feelings that come together all at once. But this is going to be so good!

Mandy said...

I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray

Holy, holy, holy
Is the Lord God Almighty

This is the song that comes to mind when I think of what your family is walking through. People are reading the book of your life, while you walk this path. I'm so thankful for the grace they are finding in your family's story.

kastek30 said...

Aaron and family, we were blessed to meet you in Appleton WI. Thank you for having such a real daily blog about the feelings that happen when our plans are changed by God.
We gave birth to Gwendolyn Faith in 2003 to find out that she would not live long. She was put on life support and I spent all day and night at the hospital with her, while my husband ran the day to day.
The doctors told us she would die with in minutes of being taken off life support. We took her off and she thrived and lived for 16 months. We were tried, we shed many tears but Gods love was most present during that time. We viewed our daughters life as though she was a child on loan to us by God. She came to us, blessed our family and many others while she was alive and now ling after her death.
I am glad to hear your little guy and family are doing well. When God blesses people with children that need extra love and attention our love and need for Him becomes greater.

Heather said...

He absolutely beautiful and precious! What a gift from God! I love reading your updates and how you openly share how you are feeling! Your faith in God is immeasurable and you are all (including little Michael) are reaching soo many people beginning right there with that nurse! God is so great!

Sarah said...

Soo sweet of his blog brother! :)

Having two brothers (both adopted) with Ds, I have really enjoyed reading your blog as of late. Michael is going to be and already is such a BLESSING to your family!!!

KerryMc said...

God grows beautiful things from raindrops. Your family is already starting to sprout!(Smile).
My family has been on a similar,but different journey (Autism)for the last 11 years. First it was why? Then it became, now what? Then show us the way...your way Father. And he has. Ups and downs for sure,but so much we have been taught,and given in his love! The raindrop falls in the puddle and ripples outward far beyond it's self!

Continued prayers for your family.

Cano Family said...

Congratulations on your new addition! My son will be 9mos on monday. He has down syndrome and is far from anything the doctors ever told me....he is amazing! Michael is so cute! can't wait to see more pictures. Welcome to the "family" :)Also if your wife is on FB have her check out this page http://www.facebook.com/groups/242723915751882/ its for Mom's with children who have Down Syndrome. God Bless!

Susan Allgood said...

An amazing couple with an amazing family. Able to minister and share the good news in times of trouble...more people should want to be like you and yours...including this people...thank you for your words of wisdom and let this all be to the Glory of God!!!

Joanna said...

Aaron and Sarah,
My husband, John, placed his comment below regarding our precious son, Caleb. We completely know the world you are in right now as I went back and forth to the hospital Caleb was in his first month of life. I daily drove an hour each way to be with Caleb a little each day. He was two weeks old when he had has first heart surgery and one year old when he had his AV canal repaired. We never imagined we would be called to be parents to a child with DS, but a blessing to say the least. We felt honored to be given such a blessing. God had other plans for Caleb and we are trying to hold to that. We miss our beautiful blessing more then words could express. Just know we have been where you are and truly believe it only makes you stronger. Please know this family from VA will be praying for each and every one of you. Look forward to reading about each of the blessings to come!

Elraen said...

Your faith in this situation is such a beautiful testimony to the faithfulness of God. This may not look like what you planned, but it is such an incredible opportunity for God's glory to shine brighter. I'm praying for beautiful little Michael, and also that God continues to bless you and Sarah with peace and opportunities to mirror His grace.

Nancy said...

Good news regarding Michael's progress! Isn't it amazing how our kids so completely see through the disability to view the person. Maybe that's what Jesus meant when he said that we should be more like children! We are blessed here in the Pittsburgh area with great medical care and much support for families & kids with Down Syndrome. We have used those resources many times, parents supporting other parents. Our family continues to pray for your family. We are here if you need us.

Oninemi said...

Aaron, I have been following your blog via share's from some of our old classmates on FB. Today I was struck by how closely your thoughts parallel those in the devotional reading my 8 year old & I did last night. Tonight we will share your blog & pray for your family as we do for others. The devotional is "Jesus Calling: 365 Devotionals for Kids by Sarah Young" -- I'm only putting a short bit here: "I have planned out a perfect path for your life, and I am leading you along that path....There will be difficulties along the way, for sure. But I will use them to bless you with courage and strength. At times it might even seem that I am leading you away from the goal. Follow Me anyway. I have lovingly planned every inch of your journey. Hold My hand and walk with Me....when problems get in your way- hold even tighter to My hand. Together we will make it to the top!". We also read 2 Corinthians 4:16-17 (I like the ICB version) "We have small troubles for a while now, but they are helping us gain an eternal glory. That glory is much greater than the troubles. So we set our eyes not on what we see but on what we cannot see. What we see will last only a short time. But what we cannot see will last forever." Praying God will continue to use your family to bring glory to his name & to strengthen your faith.

Lynette@ A Hodge Podge Of Randomness said...

I love what Daniel said about his new brother! Children grasp the joy in the situation so much quicker than adults do.

Laura's song was a huge blessing to me- it was the special music at church the week I went back. It made me realize that my tears of sorrow would be replaced with tears of joy.

MaryRose said...

God bless you and your family Aaron. I have witnessed the unchanging and unfailing hand of God carry me through the toughest storms in life - and I am forever His simply because He loves me. I was once asked how I could remain faithful to God with all the trials I have been through and my answer was that I'd never thought of leaving God, because He certainly has never left me!

I am confident that no matter what, God will carry you through this - and as you have already seen, He is at work!

Sending you and yours much love, my brother in Christ!

KellyD said...

Aaron - you'd never remember me with all of the people you meet, but I had the opportunity to work the Compassion booth at a concert here in Mansfield, Ohio while you toured with DownHere and Laura Story. I had the pleasure of meeting you after the concert and I remember thinking that that particular concert was one of the most "real" I'd ever been to. All of you - your hearts - were on display for all to see, and God worked in mighty ways that night. I remember thinking it was such small concert comparatively speaking, but you had such a heart for those children we were trying to get sponsors for, and with just a couple of hundred people in attendance (many of them teens/kids), we had almost 30 new sponsors and how excited you were for that - which made all of us excited. Your love for children is obvious and God uses you and your family (and many of your friends) in mighty ways. There is no doubt in my mind that HE HAS A PLAN for your entire family...WE WILL CONTINUE to pray for all of you. THERE IS POWER in prayer!
Michael - what a blessing. I love how his big brother is already excited about him, and so positive and protective of him already. And Sarah - what a blessing she is to you, and may God continue to work in those nurses hearts because of the contact He has given you and Sarah with them! May God give you rest today...you and Sarah. And may HIS love SHINE through Michael's little life!

ChristianMalia said...

Aaron, I have just read this entry in your blog, and your amazing love for Christ, and your family, and your precious little Michael has brought tears to my eyes. I have yet to read any of the comments, but feld compelled to write a comment of my own.

I am a single woman, who has yet to find the man God set aside for me, and I have no children. That being said, your story and your faith in God, in yourself and your wife, and in your children, is a true joy to read about.

I once read something that said children with Down Syndrome are special, and that because they need special care, God only gives them to special people. You and your wife are those special people. A child with Down Syndrome needs such special love, care, and attention, that not all parents in this world would know how to give. God entrusts these children to the loving and faithful parents that have been blessed enough to know the love of one of these special souls, and you, my friend, have been blessed with that honor.

Michael is special...in God's eyes, in your eyes, and in the eyes of everyone who loves him, whether it be the people surrounding him, or us, the people who love him from afar and know him from your blogs.

But you and your wife, and Michael's precious big brothers, are special too. That's why God chose to bring little Michael to the Shust family...he knew that within the walls of your home, Michael would find the special love and attention he needs.

Your story is a blessing and an inspiration to those of us blessed enough to read it.

I can only hope that someday, God blesses me with a child, and that I am able to love and cherish that child with the same Faith in God, my child and myself that I see in your writings.

God Bless you, Aaron. And your amazing little family.

Psalm 127:3 Behold, children are a heritage from the Lord, the fruit of the womb a reward.

teakaycee said...

God makes no mistakes... only miracles! <3
God Bless you...your family and your Miracle!
I pray for peace...comfort...and healing for your family!

Congratulations by the way!
Michael is beautiful!

Love~
Tammy

msusiecu said...

My brother in law Darrin has DS and will be 46 this year. He survived 2 operations on his heart without the use of blood (JWs) and he has been a blessing to all of our family. He delights me with sports and celebrity facts and is always loving and smiling. You too will be blessed.

JenniferB said...

Congratulations on the birth of another wonderful blessing by God. I am just reading for the first time. How appropriate is his name? Michael, God's warrior. You will learn that he will totally live up to his name. You see, my Michael is doing that too. We didn't know before his birth that he was going to be blessed with that one extra chromosome. His heart was fine. We didn't have to travel that path you are facing. My prayers for strength, courage and success go to you his family and all the doctors that are caring for him. In return can you pray for my warrior also? See, right now he is fighting for his life also. He was diagnosed with ALL (leukemia) last July 2010. He is currently 15, doing well and living up to that warrior name. God bless you all. If there is anything I can do please don't hesitate to ask. I leave you with one of my favorite verses in the Bible: John 9:3 "but this happened so that the work of God might be displayed in his life." Amen
Jennifer Bridenbaugh

Laura Sullivan said...

Definitely praying for you guys. My baby sister in law has DS and she's changed so much over the past several years.

Her third heart surgery was this summer in Boston with some huge complications, but nothing other than prayers and the grace of the Father brought her home. she's about to be 17 and to hear her tell it, she's going to marry Big Time Rush, get her license, graduate, get a car, and go to college, all next year.

But I've never in my life met someone who loves as full and genuine as she does. It's amazing. She definitely gives me motivation some days.

Enjoy your little guy with each new adventure he brings :-) -- God's called you, and He's equipped you!

Katie said...

Just saw your video posted by KLOVE on FB. Hopped over to your blog and read your story. Wow. I was immediately taken back to last year when we stepped into the NICU to meet our 3.1 lb baby girl (she was two weeks old at the time, had been born 2.6 lbs). We already have two special needs boys (both adopted older, so this was our first baby), but her little size did not stop us from accepting her into our family. I spent the last four of her six weeks in the NICU with her (though, admittedly, I spent time at the Ronald McDonald house, as well, trying to warm to the idea of parenting a baby - and such a little one at that). Looking back at those pictures from the NICU, I cannot even recognize my little toddler. I don't remember her being small, or having tubes. She was beautiful from the moment I laid eyes on her. And she is perfect.

There are days when I think I just can't do this anymore. But still I persevere, and somehow we make it.

Your little Michael is such a special angel - and all the more special because the story that God is writing in his life RIGHT NOW. You are so lucky to have him! He will be your delight. Can't wait to hear your stories of the laughter and smiles he adds to your home.

nkumom said...

Oh my goodness, Daniel is also a very special child. I sitting at my desk at work reading this and crying. What an amazing blessing you have beeen given to have children who welcome difference with an open heart. God is Great!

teal915 said...

Our daughter is 20 months old, and she has Down syndrome. We also did not know until after she was born. When they said she has Ds, I felt every dream I had fly out the window, and I was terrified. Now, almost 2 years later, I can say that I wouldn't change a thing. With God's grace, she has made me a better person. She is the light of our lives. I hope that your little one will continue to do well and get to come home soon. Here's my daughter's birth story (but not the whole story, because it gets WAY better)if you want to check it out: http://teal915.blogspot.com/p/if-youre-new-you-may-want-to-start-here.html

Jesi said...

Aaron, I am deeply appreciative that you are sharing about Michael with us. I know I cannot comprehend the journey God is taking your family on with this beautiful baby - I don't have any children and have not walked through the medical challenges you have faced. But I see such a beautiful picture of God showering your family with His strength and love and mercy for every single day. All of the Shust family will be in my prayers.

Patti said...

I love what Daniel had to say. I wish everyone could see our kids through the eyes of a child, because he really did get it right.

Gary&Carrol said...

I absolutely believe in the power of prayer. For years my wife and I prayed that God would put Godly people in our children's lives. We have seen that happen on multiple fronts. But the last one was special. We found that our 3 year old granddaughter was the reason my daughter and the entire family had started going to church. God knew they were going to need the support of that church family and the power and strength that comes thru a relationship with Jesus when that same granddaughter was diagnosed with leukemia a couple of months later. I saw a daughter that would have been so angry this had happened to her child a few months earlier, display strength and a faith that only comes from our Heavenly Father as she watched and participated in the treatment of her little girl. She said I would not be able to do this without the assurance I get from God. She has learned that children are one of God,s greatests gifts we get and they really belong to Him and we only have them a little while so she decided to love Ibby for all she can for as long as she can and if God chooses to take Ibby home then she will be very sad, but joyful in the knowledge that she will see her again some day. Today, 2 and one half years later, Ibby is doing well and nearing the end of her treatments. My daughter and her husband are expecting their fourth child this August, just a few months before Ibby's treatments are completed. They feel that their has been much more good has come from this than bad. God has used this in so many ways to demonstrate His love and faithfulness. Your wife's strength reminds me of my daughter. God bless you and your family. I know you will be blessed beyond measure by this child.

Carol said...

Oh he is just precious! Congratulations and I'll be praying for lil Michael's health as well as for your family's continued peace, what a sweet family!

Tara said...

This post just makes me smile. :) AND, could he be any cuter?!? What a doll!

Love the big brother story. When Eon was born with Ds, a friend of ours said with a huge grin, "Your kids are going to know a love like no other!" He should know...his older brother has Ds, too.

I am so blessed to read the comments on your blog. Such sweet words. It especially makes me happy because, I can tell you, the only negative comments we've heard about Eon were from Christians. They meant well, but, oh the ignorance and pride. Maybe Michael will help change that, eh?

Nidia said...

I will pray..

Mandy said...

Hi Aaron and Sarah. I found out about your story through my friend, Sarah Hammitt. She just told me about it, and I have been crying as I read your story...and even the stories in the comments. Thank you so very, very much for letting the Lord use your sweet story in the lives of so many others.

In August, my baby was born with Down Syndrome, an AV Canal defect, and a coarctation (narrow aorta). When he was born, however, he suffered a bleed on his brain, and we were never able to take him home as a result. He lived for 67 days, and each one was an incredible blessing.

I hope you'll keep sharing your story. I can understand how overwhelming everything is right now, but I also know that You will see God's faithfulness in so many ways. He is so good...so very good.

Throughout our baby's life, I blogged every day. I am now so grateful for that record I have of our precious little gift's life. And, we were so humbled to see how the Lord could use Jude's story in the lives of others...just as the Lord has already used Michael's.

Thank you for sharing your story.

Kisa said...

We are praying for your family in this time of uncertainty and unrestfullness. We were so blessed October 25th with our precious baby girl Tenlee Grace. She was born with downs and has an av canal heart defect. She was in NICU for 14 days and came home on oxygen. She is such an overcomer and an amazingly peaceful baby. God has really shown us his love and greatness through her!!! We were so nervous that we weren't capable to handle such an uncertainty. God has clearly shown us that he's our strength and we can do all things through him:) We are so honored to be called to be her parents and I say congratulations to you guys. Someone once told me that god gives downs children to the families he truly wants to bless and we are living that out:) What an amazing father we have!!! We are still awaiting her heart repair, hopefully it will be in the next week or so. She has been thriving all the way and has shocked the doctors in many ways. So I pray this over your family, only God knows who your sweet Michael is and who his going to be. His life is going to and has already touched so many lives. Blessings to you all and we as a family are lifting you up in prayer!!!!

smeeko said...

I know when I am having a hard time, reading conforting words from others is very helpful.
We have 5 children, 4 of them very healthy and one in heaven, who left us before we could actually meet her.
God has given our family so much, and I wonder sometimes what I have to give back. Our daily efforts is all that we can offer sometimes.

When I pray the "Our Father", I often stop to reflect about the words: "Your will be done". They are easy words to accept when things go well, but they are surely tough to say when things SEEM hard.
I do believe God knows best though and has a plan for all of us.
Blessings from our family to yours as you travel your journey of discovery.
Enrico
www.geokid.org

one_plustwins said...

Love this :) You're witnessing the act of "family" that is often experienced when we are tied together by that 47th chromosome.

Political Jules said...

Aaron, I do not pray for things to be magically healed or for blessings to be bestowed on one with more praying ability. I learned this after being a child disappointed that my prayers were not answered.

I have learned to pray in a way that is more powerfully effective. God's praises come from everything. Not just the good things... The good, the bad and the really ugly things we think has no hand of God.

I have learned my prayers do NOT ask for God to make it all better. I pray for the strength to keep my eyes on Him no matter the circumstance or outcome. I pray for the strength and faith to handle whatever life hands me. I pray that my eyes never turn from Him who sustains me.

So I hope you do not feel our prayers are simply ones that will mystically make things different than they are. It's far from that. We pray that should the most horrible thing happen that God gives your family the strength to handle it all.

BoalsburgBillyBlog said...

Congratulations on the birth of your beautiful boy Michael Aaron. I pray that he continue to be a rich blessing to you and your family as my son Gabe Michael has been to me and my family. Gabe, who happens to have Down Syndrome, is now 11 years old and thriving. Thank you for your music, it has been an inspiration to me.

Amy L said...

I have tears of joy in my eyes right now. Congratulations on your precious addition! I know what a shocking journey it is. We, too, have a child with Down. We had no idea. Even in hindsight, there are no prenatal markers whatsoever. God gave us a special gift and she is the perfect addition to our family. She's been a light for Jesus all 4 of her years. I pray every day that she always will be. So proud of your boys. So proud of your transparency. So proud of your wife. God's blessings and peace on all of you!

Natalie said...

I have no words but God is great!

Jay Wright said...

This is so sweet! Thanks for continuing to update us on little Michael. Continuing to pray for you and the whole family everyday and whenever you come to mind. :)

God bless,
Jay

Teri said...

Aaron and Sarah - congratulations on the birth of your precious little Michael. I also have a son with Down syndrome and he is truly a blessing and a gift from God. In the beginning, there are so many emotions that you will feel. Just keep trusting in what God has planned. You will meet many people because of Michael that you would have never met and he will touch the lives of countless people in ways that no other child could. It is difficult at times, but worth it a million times over. Don't let that low tone fool you! My Joshua is so strong - we think he is part octopus (I swear he has 8 arms) and part alligator (he can spin loose from any grip). He is my little angel!

ds.mama said...

Welcome beautiful Michael Aaron! God bless you, your parents, and your whole lucky family.

Judi said...

Praying for your family and little Michael and knowing that God CAN answer. Our daughter, Megan, was born with Down Syndrome and had a VSD that the doctors assured us would need surgery to correct as it was too large to close on its own. Six months after that statement, they discovered what God could do. It had closed completely without any surgery in just six months time and the cardiologists had no explanation. Megan is now 24 years old and has been a joy to her family all her life. She loves God and I love hearing her sing praises to God. She "gets" worship!

And little Michael is absolutely adorable!

Carol said...

Michael is already blessing others through your testimony and God's grace.
Will keep him and your family in prayer.
Way to go, Sarah!

Carrie T. said...

Michael is so adorable! Thank you for sharing your journey and your beautiful family with us--you are blessed indeed!

Carrie

The Holt's said...

This song got me through my pregnancy with Isabelle after we found out she would have DS. I still love to hear it to this day. Your son is handsome!! Isabelle spent time in the NICU and also had OHS to repair a complete AV Canal defect when she was 4 months old. She is now 7 months and doing awesome! Isabelle's older brothers love her and tell everyone they see that she has Down Syndrome. They love her just the way God created her so they think everyone else should too. God is good and prayers work. I will be praying for Michael as well as your entire family.

Emilee Kaye said...

Oh, the testimony you have and will continue to have through this. :) God can only transfrom a test into a testimony!

''The Lord will fight for you; you need only to be still.'' ~Exodus 14:14

Dawn-dotk said...

So much one might want to write reading this...especially if one is acquainted with suffering and pain. I recently wrote a post on my blog, well many actaully, that have to do with pain, remembering, ...called Muse. It's hard to toss around, turn things over in your heart, when faced with so many unknowns and the pains that come with such journey's. That Laura Story song...it's touched many, and what a perfect lyric to end the post with...you have a covering around you, Aaron. Know that you are in the shadow of His wing, no matter what happens...and in the midst of all you are, the experience of that knowing is what I will be praying for...as well as the healing. His presence embrace you, Dawn

KimberMimi said...

Thank you for sharing Daniel's big brother report; and your lives; and your faith. Blessings and praises in all circumstance -- Our Lord has wired you & your wife for times such as these... differently perhaps, but intentional in His design!

The Schlaghecks said...

My thoughts and prayers are with you! I am thankful you have peace & joy & can use your situation to be a witness for God. I have a 4 yr old with Hypoplastic Left Heart and is a former g-tuber. We are expecting our 2nd after much debate as to whether we could handle a 2nd special needs kid. Fight the good fight - God gave you these wonderful children because you were the perfect parents for them, & he will give you all of the strength you need! Hoping you can bring Michael home soon.

Lisa and Julie said...

I have been so blessed by reading your blog about the arrival of Michael. I have loved watching you, over these past 3 posts since Michael was born, digest and accept this gift you have been given. Your son said it all when he shared about his brother. So sweet.

When my sister and I were 10 and 11 years old, our brother was born with Ds. He had a more profound affect on my life than probably any other person. My sister and I have both gone on to adopt children with Ds! I can't wait to follow along with your story. Thank you so much for sharing. You and your family are being prayed for.

Holly Fedele said...

"He has Down Syndrome which means he will smile a lot, laugh a lot, share his toys very easily and give lots of hugs. It also means his heart is very sick and will need surgery to fix it."

Oh sweet Daniel, you have just described my own son perfectly. Well....maybe not the sharing of the toys....lol. But we are working on that and his heart is already fixed.

Lovely pictures!! I'm joyful to read that Michael is still climbing that ladder of recovery so quickly. The heart surgery will be easy peasy after this.

In His service, Vanessa said...

I am a pediatric RN and feel blessed to go to work and serve families facing a challenge. May you feel God's love through the care given by the health care providers who are part of Matthew's team. May God bless the team members with His wisdom, knowledge and understanding on how to intervene daily and provide care! And ultimately may your family be infiltrated by God's peace, the peace that passes all understanding! Vanessa

Ben Robinson said...

Aaron,

Thanks for sharing. You're son is so sweet! I am definitely praying for you and your family... Keep trusting in the Lord - He is our strength! Sounds like Michael is such a blessing to the WHOLE family!!! :) Take Care!

Ben Robinson

Bri said...

Congratulations on your little boy! I have a son also, Noah, that has Down syndrome. He is 10 months old and is our blessing. We live in Erie and did the Pittsburgh Dash for Downs this year and Noah is also in the Down syndrome Association of Pittsburgh 2012 calendar in June (little guy laying down without pants!). You will love Dr. Vellody at the clinic. Good luck with everything, if theres anything we can do let me know!

Kim V. said...

I've just been reading through your updates and am very moved by your spirit and am in awe of your wife. May God continue to bless you and your family with his grace and love.

bjast53 said...

My niece Lori from Dayton know a friend of yours~ Kim...anyway, I am the mother of a daughter age 16 with Down Syndrome. She spent 3 weeks in Riley Hospital for Children with a congenital heart defect and pulmonary hypertension. She came home on an NG (through the nose) feeding tube. She removed it herself on Valentine's Day 1995 and it never went back in. Don't listen to too many stories about limitations. Think more about the great expectations of a wonderful life for your new son and all of your family. I was one of the founding members of Down Syndrom Indiana... and my husband was one of the founding members of the first DADS (Dads Appreciating Down Syndrome) both in Indianapolis. DADS could be a great resource for you for encouragement and knowing what the abilities are (as opposed to the disabilities). Bless you...Look for D.A.D.S. Dads Appreciating Down Syndrome on facebook. My email is bjast53@yahoo.com

kristi said...

Thank you SO much Aaron for posting everything about the birth of your son. Today, because of God, one thing led to another and I heard about your blog and I came on her to visit it for the first time. I needed to read all of it. You see, my first daught was born in November, and she has a heart defect. It's been a roller coaster of fear, anxiety and worry, BUT I've given it all to God. My husband and I know that Karrington is going to be in his hands and he'll perform the miracles needed to heal her. I really appreciate your RAW emotion and I can relate 100% to everything. May God continue to bless your beautiful family, holding you all and giving you the biggest hug ever!God bless!