Thursday, February 2, 2012

Past the Due Date!

Jan 30th was Michael's Due Date.  How fun that we got him for an extra 2 1/2 weeks!  Michael is incredible.  Absolutely, stunningly beautiful.  He is peaceful, alert, strong, still draining his bottles dry (getting his daily required intake) and started sleeping through the night at 12 days old!  Sarah actually has to wake him for his morning bottle.  Dude likes to sleep.  

Michael's favorite Expression
We're still quasi-hibernating to do our best to stay healthy so that he doesn't catch anything from us.  Again, he'll have to have open heart surgery in the next couple months when his heart begins to fail he'll need to be healthy (Without the proper number of valves and walls, his blood is getting all mixed up, they'll do the procedure as late as possible so that his lungs grow to be as strong as possible.)  So anytime I leave the house, I shower when I come home.  Like Sunday after church.  I led worship in the morning and then at the church's annual report dinner/meeting I had the privilege of presenting my annual Worship report for the first time.  Anyhow, a lot of handshakes and hugs meant that I had to be ceremonially cleansed before I touched my little boy.  

Speaking of how incredible it is to be a part of a church body, our meals are taken care of from now until the end of March!  And seemingly every time one of Sarah's friends is at the grocery store, they call to see if we need anything.  My former pastor in Atlanta told us that church membership is like being a citizen of your country or a member of your family, it comes with responsibility and the right to be disciplined, but also comes with incredible benefits.  Right now we are reaping the benefit of community.  (I'm not saying that if we refused to be members, they'd refuse to take care of us but..."membership has its privileges" right?  My Dad has bailed me out of things before, picked me up when my bike had a flat, fixed my broken down car, loaned me money when I needed it...paid for college!  He doesn't do that for everyone, I assure you, he loves to care for me, because I'm family.  I also received discipline and instruction from him for years, because I'm family.  Same with church I think.  

Right now, we are receiving care and abundant blessing from our church family.  

Anyhow, that was an aside.  My back is feeling better.  Two adjustments two days in a row from awesome Doctor Large.  Let's see, my pelvis was out, my 3rd and 4th vertebrae were heading in two different directions and I had 2 ribs out of place.  And my knee's menisci had slid out of place...I was a mess.  When a doctor says, "Wow", you're a mess.  Time to get to know Dr Large a little better.   


CarrieMae said...

Such a blessing to hear everything is going so well!

Beverly said...

I heard about your blog on K-Love when Michael was born. To be honest I didn’t know who you were or your name until a few weeks ago. I must have heard your song “My Hope Is In You” on K-Love at some point. My 36 year old husband was diagnosed with cancer in December. One morning after days of shock was settling in I woke up and was getting our 5 year old son ready for school. Out of the blue I started humming your song. Then I started to sing (and I use that term loosely) “My hope is in you all the day long.” That is the only part I had remembered but how comforting it was!! I actually had to Google that line and I found a video on YouTube of you singing to hear the rest of the song. Just wanted you to know what a blessing that song has been to me! Praising the Lord that Michael is home and you are all under one roof again. Will continue to pray!

Ellen Stumbo said...

Did we all forget to tell you that sleeping through the night seems to be a blessing that often comes with the extra chromosome? I don't know if Nichole ever woke up on her own!

And, I hear you are a part of the CMA? So are we! The senior pastor we served with at our former church went to the same college you went to, Taccoa Falls? Small world!

Ashley said...

Yes - being part of a church body - or FAMILY - is beautiful! When we came home in November (after adopting our first child - a 3 year old with Down syndrome from Ukraine) - there were over 50 people to welcome us at the airport, and we also had a freezer full of food!

Praising God that things are going well with your sweet new baby!!

stephanie said...

So happy to hear everything is going so well!!
Sounds like your church community is a beautiful extended family!
Take care:)

Tara said...

Isn't that sleeping thing wonderful?! Ditto on the meals. When Eon was born, I almost felt a little guilty. Here was the best behaved baby on the planet and people were bringing us food for weeks. I felt like saying, "Where were you when I had his colicky older sister? THAT'S when I needed meals!" :)

Zoey's Mom, Heather said...

I was listening to The Message today and heard about the birth of your beautiful baby boy. I came home and through the magic of the internet found you here.

Wanted to stop by and leave you a comment filled with an abundance of prayers and love, overflowing from a family who has been where you are, and then some.

Our gift came to us nearly 5 years ago, sporting that extra chromosome, veiled in God's grace, and came, bearing,what we could not even have imagined then, our greatest blessings in this life.

Will continue to stop by and check in on your wonder boy and assure you. that Michael will guide you each and every step of this journey He will lead, you will follow, and that, coupled with steadfast faith,as you very well know, anything and everything is possible.

And my word verification, no lie is:"blesses"

Emilee Kaye said...

So happy that you are being "surrounded" by your church family! :) Remember that you are also surrounded by those who you haven't even met! Michael is nothing short of precious.

Gary Carroll said...

14 years ago on February 8th, my wife and I were blessed with Nicholas who happens to have down syndrome. Nicholas was diagnosed with a 5 chamber heart with a artery feeding the 5th chamber but the fifth chamber not connected to the rest of the heart. Nicholas was flown to St. Louis Children's Hospital for emergency surgery. As my parents drove my wife and I from the hospital we were asked what we wanted. My wife responded she wanted Nicholas to be fine. Praise and glory be to God a few hours later we received news from Children's the Cardiac Pediatrician informed us she didn't know what the other hospital had seen but Nicholas' heart was fine except for a minor asd defect, which closed without surgery. Often I have been told the first hospital made a mistake but the Dr. was an experienced cardiac pediatrician at a respected heart specialty hospital. I truly believe God healed Nicholas' heart on the flight to St. Louis. Nicholas is a blessing and...a trial at times but I wouldn't have it any other way. Michael and your family are in my prayers.

melissamaren said...

My girl (who has DS) slept through the night that little, too! I only wish she would remember how great of a sleeper she was at that age NOW at 19 mo.!! :)

Rachel said...

Hi Aaron and Sarah, I heard that you third son was born on the radio, Congratulations!!!! He is so beautiful. We are the parents of a beautiful little guy with DS also. He just turned four years old and is so wonderful! I read your blog for the first time today and I laughed when you said that you miss spelled down syndrome b/c if you look back on my blog when Sam was first born I did the same thing. I thought it was downs syndrome, we were pretty clueless our selves when we started our journey but slowly we are learning what it means to have a little boy with DS. I read that you are friends with Laura Story Elvington through the industry. The Elvington's are good friends of ours from my high school and college days. Martin was one of my best guy friends in college and we all worked together on staff with a college ministry. Anyway, I have a blog(the title is actually one of laura's songs) that I have kept since the birth of our first daughter.
I write a good bit about DS and lot about Sam, it might be an encouragement to see a little into the future. I just wrote this post last month on his fourth birthday, though it would be good for you to read. Here is the link
You guys will be in my prayers, feel free to facebook me Rachel Bishop Baxter (I am on martin and laura's friend list.) Actually I will just friend your page, I wanted to pass on an article that can really help with feeding and future speech issues for Michael that you can implement now. We will have you guys in our prayers!! Congrats again on a handsome little boy, that will bring you great joy!!

naomi davis fisher said...

Aaron! It is Naomi Davis ( now fisher) from minneola alliance church in Clermont. Aka, the human copy machine. Lol. ( artist).i have also been blessed with a child with DS, he is now 7years old. if you ever come down this way, would love to meet your family and your newest addition. Anways, i know you have ALOT of people offering advice and encouragment. i too have come to gain knowledge in the medical world thanks to Will. And if you feel now the way i did when Will was born, it is always nice to know someone with an older child with DS. Please feel free to contact me, I would love to talk to your wife as well if she has any questions. And, congrats!!!! and hang on, your son will be teaching you more than you will be teaching him! :).
Btw, my email is on your personal facebook page.
I would end with saying "god bless". But he is currently doing that! ;).

one_plustwins said...

Simply beautiful!!! So glad he is doing well at home. Be blessed Shust family :)

Diane said...

The call came a little before 7:00pm. I had taken a group of teenagers to a week long youth camp the day before. Both my sons had gone, one to help the other as a counselor. Ron and I had been laughing about something when his cell phone rang. It was the District Bishop. Our older son was dead. He had drowned at camp. We drove 5 hours that night to get to the camp, all the while praying it wasn’t our son. I prayed all the way there.

After reaching camp, the awful truth came. It really was our son. I was broken. I joined a group praying and stayed the rest of the night with them, not finding any relief. The next day brought more trauma as the events that brought his death began to unfold. It was then that we discovered his death actually occurred because of the Youth Directors actions.

Our daughter who was 7 months pregnant, two nieces and two spouses arrived ahead of us. The girls were in shock so bad that they could hardly think straight let alone function normally. They got out of their van and started hollering for the Youth Director. Instead of helping them or trying to offer comfort, the Presbyter called the police and said that if they didn’t calm down he’d have them arrested. I was horrified at the Presbyter’s conduct. I later discussed it with the Bishop and told him that even I in my condition could tell they were in shock and needed help. He snidely stated “not everyone is like you”.

After that, life as I knew it was over. I nearly had a nervous breakdown. I would spend literally hours of every day crashing. I would go into the house, lay on the floor, scream into the rug and cry. I beat on the bed, the floor, myself and anything else I thought might give me relief. I prayed over and over again that it was a bad dream I was going to wake up from, but I never did.

Family and friends surrounded us, doing their best to try and help. But knowing how to console someone who has lost their child is difficult at best as it is a trauma that goes against nature. Parents aren’t supposed to bury their children. The children are supposed to say good-bye to their parents first. Then when the situation is further aggravated by those who are supposed to stand by you but don’t (church organization leaders), it nearly destroys you. With everything that took place, I became a very bitter person.

Then one night during another bout of insomnia, God got my attention. He moved on me and asked me to forgive. I told him how deeply hurt I was. He acknowledged my pain but asked me to forgive. I broke down and started crying hard. I made the promise to him that I would and from that point on I began working towards total forgiveness for those who had harmed us.

Today for the first time, I saw your video “My Hope Is In You Lord”. I cried. It brought back so many memories that were hard, while at the same time reminding me of the forgiveness God had helped me achieve. I also felt God sending me a message in that song Aaron. No matter what bad I am forced to live with, as long as my Hope remains in God, He will carry me. Regardless of how bad the storm gets, or how often I might have felt abandoned during my worst moments, God has always been there. My hope in him in not misplaced. He is a rock during the worst times and he will continue to carry me until that day comes when I see him face to face. On that day, my spouse and my youngest son and I will be kneeling down right beside my oldest son who is waiting for us now, and worship God together. I literally can’t wait! God is everything to me and I appreciate him for being my hope all the day long.

Thank you for writing the song Aaron. I believe it is an anointed song that many will relate to as I have. God bless you and your family. I will be praying for your son.

Amber said...

I just stumbled upon your blog after my mom sent me a text saying, "Aaron Shust. Third boy. Down Syndrome. Check blog."
We have something in common... Our precious Benjamin has been blessed with an extra chromosome just like your Michael. We found out the day after he was born and, believe you me, I had choice words for God. I almost laugh about the way I reacted back then. Like God somehow was punishing me. I wish someone had told me what a blessing Down Syndrome is. Ben is 10 months old now and, seriously, the perfect child.
Congratulations on your little man and his "extra somethin!" You are BLESSED!

-Amber Webb

MrsMcGoo96 said...

Saw a video from this blog on Facebook and thought of you and your wonderful little family.
You are all in my prayers, especially your little blessing, Michael.

Amy Julia Becker said...

Michael is beautiful. Penny also slept through the night easily and early (but not that early--enjoy it!). She continues to be a great sleeper at age six! Many blessings on your entire family as you welcome this new life among you.

MrsMcGoo96 said...

Happy Birthday Michael! You are growing so big and you are such a beautiful baby boy. You are already such a blessing to your family.
I saw your Daddy in Dickinson, ND a few months ago. I love his music and the concert with him, Downhere and Jason Gray came during a difficult time in my life. Their music continues to help me through my dark days.
You are in my prayers. I volunteered with Special Olympics and Easter Seals when I was in school many years ago. I know you will continue to bless your family as you were chosen specially for the Shust family.

DeMaria LandTech said...

Aaron your music is a huge blessing to me. You have helped carry me through a really hard time in my life. A father of 3 girls, I will pray for you and your family. Thanks john

TheWVBucks said...

AAron, I ran across the most BEAUTIFUL blog about a woman and her DS daughter. Her take on life is EXTREMELY enlightening and truly is an example to everyone out there.... truly one of the sweetest things I've ever seen.

emaaberg said...

Praying for strength and wisdom for you and Sarah...pray that Michaels heart will be strong! thank you for your example of Godliness and faith. My family just lost a dear dear friend and just kept playing your song my hope is in you Lord.. God bless your wonderful little family! Eric Aaberg Beaverton OR

Sondra said...

Hey! This is my first time visiting your blog. Our daughter was born December 17 with Down syndrome. She too has an AV Canal defect. Her surgery is scheduled for March 19, 2012. Your story and your music inspires me. I have heard exactly what I needed in your songs. Congratulations on your beautiful baby boy! What a lovely family you have! I will be praying for you all. Thank you for what you do!

stephanie said...

How are you all doing??? It's been a while since your last update.

Just checking:)

Cindy said...

Hi Aaron. I am totally blessed by your music but not as blessed as you will be (and are) by your baby boy.
Our Jillian is 3 1/2 years old and was born with Down syndrome also. One of my favorite things is to watch for characteristics of her older brother and sister in her. Jillie learns just like her oldest brother, who was just inducted into the National Honor Society. I can see that, oh so familiar, thought process that I have known for almost 16 years now. It was so surprising, why I don't know, when I realized that first, Jillian is a Schulze, that extra 21st chromosome comes in some time later.
Have a ton of fun with Michael and the rest of your boys. Watch for the simularities.

Karol said...

I will be completely honest and say that I really do not know who you are or even your music. I listen to Christian music all the time but really do not take the time to know who sings what. I am a bit embarrassed to admit that.
I was recently referred here through a reader of my own blog, not because of your music but for the beautiful gift you have been given in your son.

Just over 5 years ago we received a call asking us to adopt a newborn girl, she was born with DS. This seemed a bit impossible at the time given that this would be our 6th child and our youngest, adopted from Haiti, was severely disabled. But God breathed peace into our hearts and we couldn't not adopt her. Jalayne Grace brought joy and peace and laughter to her already happy and busy home. She dazzled us with her every move until Labor Day, 2009 in one moment, one heart beat, Jesus gathered back home with him. Her death came in the form of devastating accident that left each of us broken and wounded. Today, every breath hurts from missing her, our beautiful daughter. We would give every earthly possession we own to have her back, to have DS back in our home. Savor every moment that you have with beautiful baby Michael. You are blessed beyond measure. God is good and God does good all the time.