DownSyndrome

One year later.

I’m sitting at my desk in disbelief that its been a whole year since I received that life changing phone call. 365 days, one full rotation around the sun and some how it feels like yesterday. I wanted to do a follow up to my blog post I wrote this time last year because… my oh my how things have changed! That girl who sat in bed with tears in her eyes, pounding away at keys on the computer trying to form words that reflected the darkness running through her. The pain of a child she thought she lost. I wish I could hug her. I wish I could go all Marty McFly in here and give that girl a peek into just how amazing her world would look one year from now. The smiles, the giggles, the sloppy wet sticky cheek kisses. Oh man. I wish I could tell her all about the joy and love and endless happiness she is going to feel. The blue eyes, the chunky cheeks, the pale skin, the uncanny resemblance she will have to you. You’ll forget, it wont come quickly & it wont come easily but this pain you feel… you’ll forget.

 

But that girl. The one who sat at the keyboard and felt emptiness… You couldn’t have told her much in those dark moments that were going to make her feel better. It took time, and patience, and knowledge and a husband and family who had endless amounts of support and love. After I posted my blog about our daughters Down Syndrome diagnosis I was met with the kindest words from not only family and friends, but strangers, people I haven’t talked to in years. Friends of friends who had heard about my story and wanted to reach out with words of support and encouragement. I received cards, hand written notes, emails, texts, endless phone calls & facebook posts. In my moment of weakness I had the love of a community to help pick me up when I needed it most.  But still it took time, for many weeks I would cry myself to sleep at night, hoping the next doctors appointment would be different. Someone would tell me something different, that someone made a mistake, this was all a mistake.

 

But that imaginary doctors visit never happened.

 

Over time as my belly grew, so did my heart. With every new kick and thump and flutter inside my stomach my love for this baby began to make its way back to the surface. The anxiousness turned into excitement, the panic turned into patience, and the fear turned into hope. With every doctors visit we began to have a better understanding of what our daughters life outside the womb would look like. And that life was beginning to look exactly how we hoped it would. The hole in her heart they had seen at 14 weeks had closed up, the swelling around her brain had decreased, the brightness in her bowels was reducing, the fluid in her kidneys had subsided. This was all music to our ears. Everything we were praying for was being answered. Not only was my little girls heart healing, but so was mine.

 

On April 12th, 2016 we welcomed our little babe into this world. At 19 inches long & 6 pounds of pure perfection, she was everything my husband and I had hoped for. Ten little toes, two little hands, the most amazing pair of blue eyes and her very own set of Pecora cheeks. I tell my husband all the time that when I lay down at night I try to replay the day I gave birth in my head so I never forget it. The good, the scary, the messy, all of it. I never want to forget any part of it. Because, the day I became a mom and experienced the deepest love imaginable is a day I cant even begin to put into words.

 

All the pain and angst I had once felt was long gone now holding my baby girl. I remember the first few days after having her just looking at her and crying and feeling so guilty that I had ever doubted the love I would have for her. This little girl had made me question everything I knew about life. She was everything I’d ever dreamed of. Once we were out of the hospital it was now time for all of our follow up appointments. I felt like I had Nemours on speed dial. We met with cardio, we met with renal doctors, ophthalmologists, GI specialists, ENT’s. You name it, it felt like we’d seen them. During these appointments I began to notice a reoccurring pattern when doctors would ask about Ella.

-Was she born prematurely? No. (insert surprised face from doctor here)

-She was full term? Yes.

-Was she in the NICU at all during her hospital stay? No.

-Did you have any complications during birth? No.

-Did you have any complications during pregnancy? No.

-Has she had any surgeries since birth? No. (insert surprised face again)

 

I began to understand just how special our little girl was and just how much she was going against the grain of what is considered “normal” or “typical” for a child with down syndrome. These things are not lost on me. The more I educate myself on down syndrome the more I understand the complications that come along with this genetic disorder. A geneticist told us after we delivered Ella that 80% of babies whom are born with down syndrome are still born. Of that remaining amount who do survive birth, 20% are born with heart defects that require surgery to correct.

 

What I’m getting at here is that, God answered our prayers. Every piece of them. He blessed my husband and I with a little girl who lights up our lives just by being in our presence. I didn’t know a year ago the amount of pain I was experiencing would subside the minute they put that little girl on my chest. Everyday I get to wake up to sweet smiles waiting to greet me as my eyes open. Everyday I get to experience baby giggles that cant help but put a smile on your face, even in the worst of moods. Everyday I get to see my husband and my daughter interact with each other with such love for one another that I sometimes think I cant compete.

 

Ella my love, you have been the greatest gift I have ever been given. Your diagnosis has taught me to stop and pause before I judge people, it has taught me to think twice before I speak, it has eliminated words from my vocabulary that I didn’t even know were offensive until I knew you. You have given a whole new meaning to my life that I didn’t know existed. You inspire me to help educate others. To educate myself. To change peoples views on what we see as different or normal. Your spirit is infectious and people cant help but stop and admire you. I hope you read these words one day and know how much I absolutely adore you. You are my best friend little darling and I cant wait to see you change the world. Because you’ve already changed ours so much.

 

Cheers to another trip around the sun.