To Share or Not To Share?
I've been thinking of writing this post for almost two years. I've debated how much I want to share - one because I like to keep my feelings close and two because I don't want my daughter to stumble upon this one day and misinterpret it and feel anything less than loved times infinity. So I'll start with this: Little A, you are the greatest gift I could have ever gotten, you light up my life in ways I could have never imagined, I love you more than I will ever be able to express and without you in my life, I would be heartbroken.
To the Hospital We Go
I remember the day she was born like it was yesterday. After many hours of what seemed to be a very dramatic labor (oxygen mask, ice packs, and other details I might share another day – or not!), she finally decided to come into this world. It was at that moment that we learned she was diagnosed with Down syndrome. The days that followed were the darkest of our lives.
I had this beautiful baby girl for whom I was dotingly caring for 24 hours a day and I felt love towards her (because how could you not? She was this adorable tiny baby!) but I felt she was not my daughter. She was not the little girl I had imagined for nine months, running around, climbing on everything, and making messes. She was not the little girl who would travel the world with me. I cried for all the bullies she would encounter. I cried for all the times she would feel pushed away by her peers and strangers alike. I cried for my husband and myself and grieved for the life that was no longer ours. I grieved for the daughter I thought I had lost.
My lowest point was when we had to leave her in the NICU to get more clothes. I was leaving her in the hospital; she wasn’t coming home with us like we had pictured. I remember sobbing as I got out of the car; this was not part of the plan. I remember breaking down again as I started to collect some of her PJs. I had bought those PJs for my little A, not for the precious baby who was waiting for me back at the hospital. I will never forget that feeling. It broke my heart and it’s one of the feelings I felt so ashamed of for the longest time. I have never shared this with anyone until now and I share it now on the off chance that there are any parents out there reading this who felt or feel a similar way. It’s ok. You are not a bad parent for feeling this way. It’s part of the process…
But why is it part of the process?! Outdated information and lack of awareness. That’s why.
I understand that the medical profession is obligated to share all the increased risks, like how children with Down syndrome have a 10% to 20% increased risk of developing leukemia which translates to an overall risk of 2% to 3%, which isn’t much higher than your ‘typical’ child. (That’s not to say it doesn’t happen - I know several moms in the online community whose kiddos are currently going through this and others who are thankfully now in remission. Much love to those families!) There can be medical complications that come along with Trisomy 21 and we know we will have to shuffle our schedules between play dates and therapies. But there is also the ‘human’ side of Down syndrome. The side that was lost between all the medical statistics. The most important side.
Little A's Coming Home!
When we were able to bring her home, I started doing my research. I connected with a parent who shared their blog with me and it made all the difference. I saw their little girl being a little girl! I also got in contact with our local GiGi’s Playhouse and joined their start-up team and I’ve met so many ‘Rockin’ Moms’ thanks to DSDN and other online groups. (Let it be known that I was petrified to be putting myself out there, but it’s worth it!).
More importantly, I became a mom. I soon realized that Little A was MY Little A all along; I just didn’t see it yet. Down syndrome does not define her - it’s just a part of her. It is my hope that every time there is a Down syndrome diagnosis, parents get both sides of the story. There are still days where Down syndrome is all I can think of, but I stop and remind myself to live one day at a time – I’d hate to waste today worrying about something that might never come (I think that might be a quote in one of those motivational posters). A few months ago I found Little A's PJ, the same one that made me break down. I found myself in tears again, tears of overwhelming joy and love for my baby girl who is now a full-grown toddler. I cherish that PJ so much that it’s in my growing to-do list to turn it into a Keepsake Bear.
As for all those things I grieved so deeply for…My daughter will be two in a few months and she currently loves climbing on our coffee table. She loves getting messy and making a mess, and she helps me clean it up afterwards. She took her first steps at 14 mths. and was independently walking at 18 mths. She signs more than 70 words and has traveled over seas three times and has flown to different cities/countries 20+ times (our work demands travel). She loves music, and Elmo is best thing in this world, after her mama of course! I share this to show you that every child is different and they all have their own timelines, and eventually they all get there (don't get hung up on not meeting milestones by a certain time!). There is still so much I don’t know and I’ll look to my peers to help guide me through those times, but along the way, I’ll know that Little A is exactly who she was meant to be and I am blessed to be her mom.