Before this blog was started I wrote about our journey on my personal website (I’ve since have closed that site down, and have focused my blogging efforts here.) If you’ve read Noah’s birth story you know we had no idea Noah was born with Down syndrome until several hours after his birth. As we were thinking about ways to tell our friends we decided the easiest thing to do was to write a blog post that we would email out / post on social media vs calling each of them. (We did call our closest friends and family, this is just how we let the “masses” know.)
Below I decided to post a copy of that blog post for anyone who may be interested.
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(Dec 16, 2010)
This little baby came with lots of fun surprises!
(Sorry for the spoiler, but if you’re anything like me, this much text can be overwhelming!)
Wow. There are no words that can describe the rush of emotions that Abbie and I have experienced in the last 24 hours.
We were told on Tuesday that Abbie would be induced at 7 am on Wednesday. We came into the hospital and waited for Noah (our son) to arrive. After almost 12 hours of labor, the doctor decided to perform a C-section on Abbie. (This was not an emergency C-section, and I was allowed to be in the delivery room; behind the curtain, of course). Shortly after, Noah David Smith, was born! We were so happy, excited, thrilled, and all of the rest. Around ten pm, last night, we were informed that Noah was born with Down syndrome. We didn’t see this one coming, and as you can imagine we had even more emotions. (Fear, disappointment, worry, but mixed with the same joy, and excitement that we already had).
Noah was able to spend the night in our room, and today we were told that Noah’s heart had an Atrial Sepal Defect (my wife is a Doctor, but for the non-medical people out there, like me, it means that Noah has a small hole in his heart, and that one of the connections is still open as well.) Our cardiologist told us that this wasn’t considered “major”, and that it could have been much more serious, and in fact may heal itself without surgery. (We are praying that is what happens!)
We are waiting for him to take his first “poop.” He hasn’t yet, we really need him to soon to confirm he doesn’t have any medical issues with that. So PLEASE be praying for that! Noah then passed his hearing screening at 100% in both ears! (Which is great because he has a dad who really enjoys talking!)
If you are anything like Abbie, and I you may be at a loss of what to say (we certainly are), or not sure how to respond to us. We are hurting, happy, and confused all at the same time; and are just as confused as you may be. We wanted to just say a few things that we hope would make things more comfortable for everyone.
I sometimes say these things as sort of”filler” because I’m not sure what else is appropriate to say. You don’t have to. I am giving you permission to have some fun with us! Let me give you three alternative phrases to give you some more creative ideas; 1.) Wow – I bet you guys didn’t see this one coming. 2.) Hey did you know Sarah Palin has a baby named Trig that has Down Syndrome? I wonder where she got the name Trig? 3.) Wow – your baby has fat cheeks! 4.) Merry Christmas!
Of course, you can say we are blessed, and he is special to. We just want you to know that you don’t have to watch your words, or feel like you are walking on eggshells around us. You aren’t.
Ok, that’s all we’ve got for now. If I think of more, I’ll add them later. We just wanted you all to know you don’t have to walk on eggshells around us, or Noah. We really are ok. We really trust God. We really are excited. We really are nervous. We really love Noah. And we really like Chick-Fli-a. Thanks for your friendship, and support as start on this new journey in our life!
Psalm 139: 13-18
-Rick, Abbie, and Noah
“For you created my inmost being; you knit me together in my mother’s womb. 14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. 15 My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. 16 Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. 17 How precious to me are your thoughts, O’ God! How vast is the sum of them! 18 Were I to count them, they would outnumber the grains of sand— when I awake, I am still with you.”
If you’re the parent of a child with Down syndrome, how did you share the news with your friends and family, and what was their response? Leave a comment below and tell me about it.
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My daughter and son-in-law weren't expecting a down syndrome diagnosis either. Their son is their 3rd child and they were so excited to get a boy (they have 2 girls too ). They went through the same emotions of sadness, shock, grief at the diagnosis. He had his heart surgery at 7 months old. He's now 2 and is accomplishing so many milestones. I love following your blog. Please keep posting! Many blessings to your family!
Hi Rick,
I just want to thank you for continuing sharing your blogs. I always look forward to reading them . My wife and I can relate as we too did not find out until after our son Raiden was born that he was born with trisomy 21. I was only 29 at the time and was quite scared with the situation experiencing many of the mixed feelings you mentioned. However after 8 months in the hospital and many surgeries later our beautiful boy Was finally able to come home. Raiden is truly a blessing in disguise and my wife and I feel truly blessed. ?
What a beautiful introduction to Noah. I have been following your blog for quite a while so I don't know how I ever missed this. I am a nurse and worked with another young nurse who was surprised when her daughter was born with DS. Watching her over the years, I truly thought she was an angel when she filled us in with her little one's milestones and what a wonderful addition to her family.
That was until our granddaughter Ella Beth came into the world. Down Syndrome was not a surprise and I must admit I was very fearful about the challenges of having a child with special needs. Not sure why, when I know my son and daughter-in-law had already raised three healthy, happy children. Why would it be any different with Ella Beth? Of course, there are many more doctor visits with specialists and speech, physical and occupational therapies are the norm.
We are blessed to have this beautiful little girl now 3 years old. She is special indeed. She is behind a bit in some of the usual milestones but that does not stop her from getting to where she wants to go, letting her wants and needs known without speaking a word, and worming her way into each and everyone's hearts without even knowing her. She brightens our lives every day.......even though she lives 500 miles away......just by checking our her newest photo on Facebook where she is known as Sunshine. God makes no mistakes.
Much like yourself, Jonny's diagnosis of DS was an after birth "surprise". After our twin boys were born my wife had a feeling that something was "different" with Jonathan, and as there was some doubt, genetic testing was ordered.
On the day the doctor came over to use in the nursery to inform us matter of factly that Jonathan indeed had DS, my wife entered a short period of grief, whereas I was comforted knowing the truth and being able to move on with had to be done.
As for informing family and friends, we were not sure what to do, as my wife's parents were almost certain to take the news very negatively, and mine where an unknown. In the end we sat down with my wife's parents to explain to them what was Down Syndrome and what they could expect from their grandson, and we were relieved to see that they quickly calmed down after some initial shock. As for my father, the reaction was not what I expected, and one that was a bit shocking: Could we not have tested beforehand in order to "do something" (aka abort).
As for friends, they were all very supportive of us and our son, and they have remained so over the past 4 and half years.
my daughter also has down syndrome. it's the same beautiful sunrise just not on the horizon we as humans create for ourselves.
Our little guy Ethan was also a big surprise to us. It took a few days to get the confirmation, and it was definitely tough at first. We told our family and friends and then word sort of spread. Everyone has been so supportive. Seven months later and we are just settling in for the ride. Thank you so much for sharing Noah with us and showing parents like me what is possible for the (at least immediate) future for our babies.
Thank you that beautiful story. I have an adorable 2 year old with down syndrome and he is doing what he want to do. I was in shock after I found out the diagnosis during my pregnancy because I thought it was my fault. After talking to my husband and family and they assured me everything will okay, I start feeling better...sometimes a little encouragement is all we need. To this day, I must say he will be 3 next month and just about as smart as me. Again thank you and keep the faith your family will be okay
Wow, how I can relate to all your emotions you experienced. My son was premature (born at 36 weeks) and I knew something was different but wrote it down to the fact that he was prem. Two days after his birth the paediatrician suspected Down Syndrome and we had him tested. What a roller coaster ride of emotions washed over me at that moment! He is now 5 months old and we are (as I write this) in hospital where he is still recovering after having heart surgery to repair his VSD (ventricular septum defect). Today I can't imagine my live without his beautiful soul. God has shown me 'Hey, this is NOT as bad as you thought it would ever be, this is my gift to you'. God has truly blessed these children because they come into our lives and change our hearts for the better.
I love reading about your family and feel that you are so blessed. Keep up the good work. You are doing great.
I may not have had all those beautifully stated words at my sons birth. Like you we didnt know until he turned blue later but i knew frim the time i looked into his eyes our souls were bonded. Mark is the most precious gift God has given me. Unlike your Noah his dad left a qeek before his 1st birthday but he had 5 brothers and 4 sisters that have done a great job. Mark is 27 now and im still following behind him goind 'i didnt know you could do that" He's an enormous amount of unconditional love, filled with humor and joy and an ability to love his God and his angels, ( his grandmother,step dad and a few others) . I thank the Lord everyday for allowing him to stay with me.
Youre doing a great job.
Great to follow you
Much love from our family to yours
Barbara Smith, Mark, and Tori