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Tuesday, January 24, 2012

Home!


It's pretty incredible being in the second full day home with 5 in the house!  Michael is doing great, on a wonderful schedule and up just one time in the night.  He's getting his rest and so is Mommy.  The boys are thrilled to have their Mommy and new little brother home and, quite frankly, so am I.  Forgive the lack of blogging the past two days.  The blog was very therapeutic for me during the past week and I will continue to blog about things in my life that move me, whether it pertains to Michael or any other members of my family, friends or Road experiences.  I don't feel led to start a "Down Syndrome Blog", although I'm sure I will reference some of the many resources you all brought to my attention.  Michael is now a part of our lives.  Down Syndrome is now a part of our lives but I don't think it will define us. 


We have an incredible support base through our church, very near and dear friends who help us through life, whether it's being there for Sarah when I'm on the road, helping us with Nicky and his health and allergy issues and I know they will continue to be there for us with Michael.  Pittsburgh seems to be a wonderful place to live when you have a child with DS and one of my dear friends in Christian Music is Jeremy Theissen, the drummer from Downhere, who I will be touring with again this Spring, has a 3 year old boy, Liam, with Down Syndrome.  We will have much to talk about.  

We're not worried.  We're not scared.  We have no reason to fear.  We have nothing but love and joy to experience through the lives of our three children.  


Thank you all for your generous offers of practical assistance to our family.  One day, and that day may never come, we may call in those favors! In the meanwhile, I pray you've found some encouragement from our recent journey, I know we couldn't have journeyed the way we did without our cyber-community loving us with the love of our Lord!

Thank you again so much!  

What's on our hearts: Michael's Complete AV Canal Septal Defect will require the heart surgery that so many of you know about.  If you don't know, sometime in the next few months, he'll have to have that surgery.  We won't know when until his heart fails.  We're praying for peace and wisdom. 

37 comments:

Sarah said...

Glad little man is home safe and sound! ♥

Erin said...

That is so wonderful you are now able to be home as a complete family@ We serve an amazing God@ thank you so much for your encouraging music. You have encouraged many people through your music, and now God is using some of those people to encourage you. Stay strong in the faith. "For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

TBrook said...

Always ALWAYS here for you, my friend. And always ALWAYS encouraged by how God uses you. Michael IS home. He's in YOUR home. Exactly where he is supposed to be. Love, Brook.

Jennifer said...

Congratulations!!!! So glad Michael is home with all of you. Please keep up the blog and how the heart issues are going. They wanted our son to be 4 months and 10 lbs, but he only made it to 10 weeks and 9 lbs. The surgery was great and he has no issues with his heart now (5 years). Praying for rest for all of you and to enjoy each moment. The little things will become big things now and that is so fun to watch. Still praying Psalm 139 for Michael's heart to be completely healed.

stephanie said...

Welcome home Michael!!!

missgator said...

What a sweet little boy! God bless all of you!

Rai and Shannon said...

Glad he is home, and you guys are back together as a family under one roof. And so happy to see how you have settled into your new normal. Will definitely be praying for Michael's heart surgery!! Thanks for keeping us updated!

TobyBo said...

:)

April Vernon said...

So glad you are all home together now!

the three wise menn said...

Hooray for home. Still praying for your family. We are in the waiting game for the same surgery for our little girly. She's ten weeks and still going strong. :)

andrea

HawkJrsMama said...

Aaron, I am so glad your sweet little guy is home and getting healthier everyday. I have wanted to write you but didnt know what to write. Our son was 5 weeks old when he passed away in July 2010, his name was Hawkins, Jr! We have had Monkeys & Lambs made for kids in the pediatric unit, with his name & our friends daughter's name who passed away 3 weeks after him. They each say "Hawk Jr & Lyla Ann, Angels Watching Over Me...." And we love to be able to give them to babies & Children who need a couple little angels to watch over them while they heal. If there is any way we could send Michael one, we would be honored. If you would like to see some of the kids who have received them, you can friend "Monkeys Lambs" on facebook, thats our site where we share their stories! I hope your son continues to grow healthier every day and just know that we are praying for him daily <3 Thanks!
Mary Bowman

Mandy said...

Welcome home, Michael!

Bryan Kouri said...

Hello Aaron,

Thank you for sharing your journey. It is one that my wife and I traveled when my son Brayden was born on Sept. 13, 2007. I can assure that for every difficult moment, there are literally a hundred moments of joy. I remember those days in the NICU and the exchanges when my wife and I traded taking care of Brayden and our other 3 kids. You may sometimes question your strength, but I can promise that your faith is much stronger than any obstacle you may face. Brayden had a similar heart issue and his surgery was at 4 months. He sailed through it as I am sure Michael will. What you will find is that Michael will be the light of any room he walks into. These children are God's gift to remind us of the joy that exists in this world. I have seen Brayden walk up to someone out of the blue and absolutely melt a hardened heart with the love he shows. He has an amazing knack of knowing who needs to feel God and delivers it with a smile and hug. Your family is blessed more than you know. Bryan

Unknown said...

Congratulations! I and so many others know what that feeling is to finally bring your child home from a longer that expected hospital stay. Love on him. He is going to LOVE on you big time someday! - Kris

Runningmama said...

Welcome Home Michael!

Becky said...

Down syndrome will never define your family and your son if you do not let it. I can speak to that because that is the truth almost five years after having my daughter with Down syndrome. It will simply just become another part of your life...your normal family life. I look forward to reading your blog for more than just Down syndrome. I love to see a strong faith and God's work at hand in your family and your life. Thanks for taking time to reach out in your blog with your words and example of walking with the Lord. I am so glad your baby is home. Enjoy those precious family moments.

Candace said...

So glad that MIchael is out of the NICU. I also have a son with Down Syndrome and while it was hard to take in at first I now feel so blessed. Cameron was born 13 weeks premature, has Downs and a liver disease, spent the first 14 months of his life in the hospital but he is now almost 2 and has changed our lives for the better. We love him so much and thank God everyday for giving us such a wonderful blessing. In fact, we would even like to adopt a child with Down Syndrome someday.

Loving the Mommy Life said...

Praying for you all as you prepare for that surgery. I'm so glad he is home and everyone is doing well. Down Syndrome has such a wonderful place in our hearts. I can't wait until the 5 "Chromosomally Enhanced" children that we are adopting are home safe and sound as well. What a relief that will be to have our whole family under one roof.

Down Syndrome won't "define" you. It will change you though. When he gets older and you look into his eyes and realize that if he'd been born in Eastern Europe then he would be doomed to a mental institution, then your world will change again. It is all good changes though!! God will move your hearts with a new understanding.

Prayers for you and your family!

kim said...

So glad to hear Michael is home! I just want to tell you to not let the "heart failure" thing worry you. It's not an immediate change. We had a nurse come to the house once a week to weigh my son and check on him. He was 8 months old before he had his surgery and never noticed any change in him for the worse. The only thing he did was breathe much faster since his little heart had to work harder. That was a big difference we saw after the surgery - normal breathing! God bless you all and we will keep you in our prayers!

Michelle Turner Garrison said...

Aaron, I am sure you are exactly right that DS won't define your family. As hard as this part of the road has been, your family continues to be marked by one definition: a family committed to Jesus and HIS plan no matter what. I am praying that God will miraculously heal Michael's heart so surgery isn't needed, but even if it is, I know you will have the greatest Physician watching over the other physicians who will do that surgery. I am excited to see all the ways that your family will continue to lead people to Jesus as your boys grow, and your ministry continues!! Enjoy these moments with your little ones...they will grow up too fast.

Jill said...

rock on, Michael.
change the world, little man.

Jenny said...

Congratulations on the new addition to your family! I love listening to your songs on the radio. They are truly inspiring.

Our little ones share the gift of an extra chromosome! My daughter Caydence was born in June of 2009. She was also born with Down Syndrome and a complete AV Septal Defect. She had open heart surgery at the American Family Children's Hospital in Madison, WI when she was 6 months old. It was a great success and they were even able to use her own tissue to close the holes. Although she is still tube fed. I know she will eat by mouth someday :)

I'm sure Michael's diagnosis was quite a shock, but I promise you... He will be the biggest blessing you have ever known!

I started a blog while my daughter was still in the NICU it is http://caring4caydence.blogspot.com

I haven't written on it lately, but if you go back in the history, it chronicles our time spent in the NICU, open surgery, and g-tube surgery. Might give u a glimpse of what to expect :)

I found that reading other parents blogs were the most helpful to me when we learned of our daughters diagnosis. You can see what it's like raising a child with DS. (Really not that different) :)

Please let me know if you have any questions or if I can help in any way. The DS community is awesome!

<3 Jenny

Blessedbyfive said...

So glad to hear you are home with all the children. As a mother of five, one who happens to have an extra 21st, we too found it doesn't define him or us. He is simply baby Jed, who loves to hide things under the couch,and daily fills our life with joy unspeakable. All day by day and the heart surgery will all soon feel a small hurdle. We all pray for his strenght.

The Holt's said...

So glad to hear Michael is home! I love this post. I too have a blog going that I started to keep up with my boys since I am horrible at scrapbooking. Then I got pregnant with Isabelle and we learned she would have DS. Blogging became therapy for me while we were going through the pregnancy, birth and then her OHS for Complete AV Canal defect. Now, Isabelle is 8 months old and I have noticed that DS is only a small portion of what I speak about because that doesn't define who my daughter is or our family. DS have become a small part of us. We are still new in the journey and have difficult days but Isabelle is our gift and the little girl that God knew we needed.
Keeping your family in my prayers!

Shelia Jordan said...

Aaron and Sarah,
I think of you so often throughout my day. I have to agree with your blog...Michael is not special because he has DS, but rather, you and Sarah are special because you have been asked by a God that loves you, to care for his son with "special needs". To say many of us, we wonder why God allows this to happen to children...I believe, Michael, will do amazing things in his life, and answer some of those questions, because you and Sarah have pledged your LOVE to your God and were willing to take on any task he asked. I, personally, will be following your blog, to see what God will do. I encourage you to EXPECT great things. The world of medicine says "don't expect", but I encourage you to absolutely EXPECT. ds will not limit Michael, but will expose the "greatness of the God" you serve. Admittedly, I stopped having children because of the "fear of DS" of those over 30. I may have missed an opportunity for God to show Himself mighty. I will carry that regret. You and Sarah have been such a wonderful "bright light" in my life. I hope you know how much I respect and love you.

Holly Fedele said...

Welcome Home Michael! Joyous that your family is under one roof again!

Laura Watts said...

Welcome home Michael!
You are right - there are some amazing resources in Pittsburgh - I have worked with some of those agencies over the years. And please know you can contact our Center should you have questions or seek additional encouragement from a team that specializes in DS. Michael's generation has limitless potential!
I believe your attitude that DS should not define your lives is truly where God wants us to be. Michael will be one more way to reach others through Christ in the ministry you have already begun. I don't think we need yet another DS blog. What we need is families in the spotlight that allow Christ to shine through all their children in the uniquely entwining ways that He intended. And you have already begun. You are covered in prayer!

cmerchen said...

I am so happy for you and your family. We have, as many have, experienced our own struggles through bringing our 11 miracles to this earth. But we always know that God is in charge, that He loves us all and that THIS IS His plan! Yes, blessings come through raindrops. I LOVE that song. But it never hurts to have a few extra prayers going up for you to handle the raindrops and find in you the strength that only He completely knows you have. My thoughts and prayers continue to be with you. Your story, your openness in sharing it, only makes people like me more sensitive to the struggles of those right here all around me. It makes me a better person and helps me to be given His eyes (as Brandon expresses so beautifully) just a little more. Thank you for taking the time to include us on your journey. By the way, Michael is BEAUTIFUL!!!! Congratulations!

Sarahbueno said...

Hi! I listen to K-Love radio and I love your song "My Hope Is In You." That is where I heard about your son Michael. I just wanted to encourage you and your family and I know God has such a special plan for Michael. My younger brother, Josh, has Down Syndrome and he has been such a joy in my life and I love him so much! I couldn't imagine my life without him and I wouldn't want him any other way. His love for others is so unconditional and the way he prays and worships the Lord amazes me. What society thinks and takes as a "defect" or something "wrong" and "isn't good enough" ...in God's eyes is something perfect and is truly a masterpiece that He has knit together so beautifully. God Bless you all!!!

Kim said...

Home is a wonderful place to dwell! Glad you have your family together again. I wouldn't tell you to start a ds blog, but I will tell you that you can say now that DS won't define you. Surprisingly it will! But in a positive way. You'll want it to. As Michael grows and you come to see the injustice in this world toward our kids, you'll become his biggest advocate for change, acceptance, and inclusion. Part of that is showing the world what a joy he is in your lives. We now, unlike in decades past, have this tool called social media that brings us together as a mighty force. I have downloaded hundreds of pictures of Aiden onto facebook for all the people I'm "friends" with to see. They sometimes get daily doses of Aiden and he has a huge fan club because of it. Where before, people who had children/babies with DS felt like they were all alone. Now, there are thousands of us with the same purpose. Because we had Aiden, God opened another door for us to adopt a little orphan girl in China who has DS.... so DS does somewhat define us.... and that's okay with me.

Melody Joy King said...

Yeah for being home! You and Sarah's perspective is refreshing and encouraging. Love seeing the little pictures of baby Michael. He is positively precious. I have no doubt that he will continue to bring a remarkable amount of joy and love into your family. Blessings to you and yours Brother! :0)

Randy and Susan Peterson said...

Congratulations on your new son! We have 7 children, 2 with Down Syndrome, one biological and one adopted....can only tell you that I wouldn't trade those girls for the world....(as I think you already feel for your son) .Both had av canal surgery - one at 9 weeks and one at 13 weeks....scariest thing I have ever been through in my life......but they both came through it like troopers....spending 5/6 days in the hospital and bouncing right back.....Praying for your little guy that he will do the same....

Samantha said...

I just found your blog and thing you love for the Lord is amazing!! Glad your family is home together as one. It must be such a blessing to see all of God's wonderful creations in your house. Praying for your family. Your story and your music are inspiring!!

The Jewells said...

Congratulations on the birth of Michael. He is BEAUTIFUL! As the mom of a now 22 year old daughter with Ds, I offer you a hearty welcome to this new journey. It is one I didn't want to take, but am so blessed to have been on it. Kristin has taught me more about God's unconditional love, grace and mercy than I could ever have learned without her. Some friends and I started a Christian school for kids with Ds in 2000. We welcome you to come visit us when you are in the area. You will be blessed! (Green Oaks School in Arlington, TX). Again, congratulations to you and your family.

alyssa speicher said...

Congrats on the birth of your little Michael! Be prepared to be blessed in ways you could not have imagined several months ago. Five months ago we were in your shoes. Our 6th child came early at 35 weeks. He was gonna be my "easy" child, I thought. Then came the news..he had DS. Really God??? But, in these several brief months with baby Joel...wow...God just keeps revealing so much to us. I feel honored that God trusted us with such a precious gift!
We, too, are blessed to be living in the Steel City area. The medical care that will be available to Michael is fabulous. We, too, are facing the heart surgery. Matter of fact, Joel's surgery is this coming Friday. But, like I told the surgeon my baby and the surgeon are in my Father's hand. There is no safer place to be. We will be praying for you and your family as you get to know your little guy. You WILL be blessed!

Anna said...

THANK YOU for your "raw" emotions expressed in previous posts! Those are the kind Jesus is interested in, and the kind that that are truly helpful to others!! Michael is a beautiful baby (my kids think so too!) with a wonderful name, and he has God's extra blessing on him already! Praise You, Lord!

Ilisa Ailts said...

So sweet. It is fun to follow your story - Michael's is much like our now 19 month old Calvin's. It is very nice to be past surgery.

I look back at the awe of God's act to keep Calvin healthy for the 4 months leading up to the surgery and the couple months during recovery. Amazing!