Introducing Evan!

Hi all,

I'm new here and just wanted to share my story with you, which is a bit different from most! I'll include some details that only seem important using 20/20 hindsight, but here you go!

Evan was scheduled for a repeat c-section last July 13th, 2010. During the evening of July 7th, I started to feel contractions and so I made plans to get to the hospital. At about midnight, as I was waiting for my mom to come stay with my then-3 year old daughter, my water broke in a huge way. She finally got to our house and we headed off to the hospital - interestingly enough, after my water broke, the contractions stopped! So, I get to the hospital, no longer in pain, but they discovered that the baby was breech and, since my water had broken, I had to remain on my back. But, since I was no longer in active labor, it wasn't considered an "emergency c-section" - I stayed laid up on my back for 13 long hours before my c-section finally happened at about 1:30 on July 8th. During my surgery, I was actually quite sick and had a massive panic attack which led the doctors to put me under general anesthesia immediately after Evan was born. I woke up and was able to see my beautiful boy about 2 hours later.

In the hospital, he was an angel. He slept so much - he was seriously 2 days old before I saw the color of his eyes! The pediatrician at the hospital said he was wonderful, but he had some extra skin around his neck ... "nothing to worry about", he said. We were discharged on day 4 - had it not been for my surgery, it would have been much sooner.

When we brought Evan home, he was just a perfect baby! I told everyone that Ella (our daughter) was a great baby, but I seriously didn't know they made them like Evan! He slept 6-8 hours a night from the time we brought him home, and he never cried unless he was hungry or tired ... and then it was just a whimper. If we anticipated his needs, it would seriously be days before we heard our baby cry!

He seemed to be developing ok ... his well-baby visits went off without a hitch. I should say that my older child was born with a cleft lip/palate, so I had no experience with "typical" babies ... but he seemed pretty typical to me! He had some silent reflux, so we got him on meds for that. And then, at 4 months old, his pediatrician said he had torticollis and referred us to physical therapy. At this time, he was showing some delays as far as reaching and grabbing, but that was attributed to the torticollis and him using his hands to stabilize himself. We did private PT for 2 months until my insurance changed. Because my daughter had been through the Early Intervention system, I referred Evan to EI thinking he may not even qualify. At 6 months old, EI said he was delayed across the board, which I thought was a joke. How can you be so delayed at 6 months?? But, I accepted services for him (PT, ST, and special ed) thinking that he'd outgrow them in a few months. In the meantime, EI scheduled an appointment for us with a developmental pediatrician. We had that appointment when Evan was 9 months old. This ped. actually knocked me off my feet when, for the first time ever, I heard that it was very probably that Evan had Down syndrome. WHAT?!?! We went for the bloodwork that day and, a week later, when Evan was exactly 9.5 months old, Evan was officially diagnosed.

Now, I feel like I'm a pretty level headed person. My daughters birth defects (she also had a heart defect which was *just* corrected via open heart surgery a month ago) didn't even phase me (although the surgeries, especially this last one, sure sucked!) But when I heard Evan's possible diagnosis, I lost it. I cried for about 4 days straight while waiting for the results. And then again once it was official. I feel like getting such a late diagnosis makes the experience "different" some how, but I can't put into words why. I feel so naive whenever I look at pictures from those first months - we had no idea! Which, I guess is one of the biggest things that leads me to want to advocate for children with Ds - he was so typical that we didn't know. Doctor's didn't know. Certainly not the nightmare that people think of when they hear "Down syndrome". Also, although we had 9 additional months after birth to dream big for Evan - I'm also glad that I didn't spent the first 4 days of his life grieving. I had 9 amazing months to love him and know what he's capable of *before* the diagnosis, so I'm happy about that.

So, however we got here, here we are. And, I'm happy to say that Evan is a happy, thriving, active 13 month old boy right now - just living day by day and so thankful for the gift that he is

Welcome to our Forum. I know of a few others that also had delayed diagnosis of their child having Down Syndrome. It doesn't happen very often. Did they tell you which type of Down Syndrome Evan has; is it Mosaic, Translocational, or just the typical old Down Syndrome? I have seven children of my own and two of the youngest three have typical Down Syndrome. Neither was diagnosised before birth and both had different heart defects.
Mary Beth

WOW! It is amazing to me that none of the other professionals even considered Ds.
But, you are right, it proves that our kiddos ARE "just kids" first!

What an interesting journey! Would love to see some cute pics of your kiddos when you get a chance. We love pics around here!

It's different for every one of us, isn't it? I often think that though I'm glad for the "late" (Brianna was 8 weeks) diagnosis of our daughter, I also feel like it let me dream big and even more so than maybe someone that found out at birth, I felt like I had to "give up" more dreams, if that makes sense. I had seen her, loved on her, dreamed of her wedding one day You know.... all those things that you don't necessarily think about REALLY, but that just come with being a new mom that you see yourself ten and twenty years down the road and think... wow. So more than the "new baby, what will she be like" things that I "gave up" (simply because it ended up being different than we thought... after she was dx'd and we ended up with open heart surgery at 5 months, etc...), we also had the "real life, here you are and isn't it amazing to dream" things.

My youngest bio baby is now 23 months, and I can't imagine even just a few months ago having been told that her future would look much different. Yes, it would all be ok. But I think you're right that the longer you don't know, the harder it is, or, just different, as you put it. Though, I wouldn't change it at all for us either

God Bless you on this journey!

Meredith,

Thank you so much for putting into words how I'm feeling! It warms my heart to be welcomed into this community and to meet others with late diagnosis - I feel a little less lonely You're right, in the I feel like I did have 9+ more months to dream big for him - I always envisioned my boy being a star athlete, captain of the football team and I continued to dream that after he was born. The diagnosis was kind of like getting the wind knocked out of my sails ... but then I recovered (mostly) and, you know what, I still dream big!

Also, thanks to someone in this forum, I discovered Rachel Coleman's blog yesterday. Something she said about her daughter, Leah, brought tears to my eyes:

"When we did hear her diagnosis “severe to profound hearing impairment” when she was 14 months old, we mourned. We cried. We felt silly. We couldn’t believe it. We thought there was a mistake. We hoped it would go away. We felt all of that and more at once! Finally we looked at Leah and she was still her happy beautiful self. And we recognized that for Leah nothing had changed. Nothing was wrong. It was just the way it had always been. She had always been deaf. She just smiled at us and she looked like she was wondering why we were so sad. So we made a choice. We chose Leah’s perspective. The perspective that nothing was wrong. It was just the way it had always been. "

That's *exactly* what we went through with Evan - the grief and denial. And then we looked at this little baby that we had been loving on for 9 months and thought - he's still the same little boy! Nothing has changed! When you look at it that way, it's pretty silly to be upset

Thanks again, everyone, for the welcome and for reading my story!

Mary - reading you story, I have to say, I fee like I'm telling mine all over again! From, my water breaking early, to taking Cole home thinking everything was fine, him sleeping 6-8 hours, never crying, then bammo, the diagnosis.

9 years later, I believe that everything happened exactly as it was supposed to happen. For some reason yet unknown to me, God didn't want us to know prenatally. God has a purpose for Cole, for me, and for our family, and we're exactly where we need to be. I wouldn't change a single thing about him. He is just simply amazing.

Mel,

I was going on and on to anyone who would listen about how lucky we were, how we didn't know they made babies like Evan, how blessed we were to have such a "perfect" baby!

Of course, now I know that we really *were* blessed ... but totally not in the way I originally meant.

It feels SO good to be understood!

Mary

MelWen wrote:

Mary - reading you story, I have to say, I fee like I'm telling mine all over again! From, my water breaking early, to taking Cole home thinking everything was fine, him sleeping 6-8 hours, never crying, then bammo, the diagnosis.

9 years later, I believe that everything happened exactly as it was supposed to happen. For some reason yet unknown to me, God didn't want us to know prenatally. God has a purpose for Cole, for me, and for our family, and we're exactly where we need to be. I wouldn't change a single thing about him. He is just simply amazing.

Welcome Mary!!! I'm Kris, mom to 8 beautiful kids. Our seventh, Erin, is 4.5 and has Ds. We found out at birth. I just love what Mel wrote here. It is SO true that each of has our own journey and circumstances. For you a late diagnosis was the hand you were dealt. I think it's amazing how you were able to experience the "typicalness" (I know, not a word) of your son for 9 months. It was the way it was suppose to be and to see how you have embraced that is beautiful! I love how each of us has a unique perspective I'm so glad you joined us!

I love your story...baby first, then the diagnosis. We found out at birth and BAM! There was this huge label on such a tiny person and I was so fearful until she started doing all the "typical" baby things. How nice to know the person first, not the ds.....welcome!!

Oh I love what Steph said!!!

Thanks for sharing your story Mary. I love hearing all of them, mostly because everyone has an "a-ha" moment and I love hearing how we all come to terms with our child having Ds. Welcome!

Thanks Brandy!

And Julie...you're right about that "ah-ha" moment....it's so wonderful and freeing and peaceful.