shortly after delivery (don't mind the blood and gore)
Traumatized from having my baby girl whisked out of the delivery room... I don't remember much. Although, I do remember a nurse wheeling me into the NICU to see my daughter. As I peeked over her isolette and saw her swollen little eyes... I knew in my heart that she had Down syndrome.
shortly after being stabilized in the nicuAt the time, I didn't voice my concerns to anyone... not even my husband. I think I thought that if I didn't talk about it... then perhaps it wasn't a reality. Eventually the doctors voiced their concerns... and they were the same as mine. We truly didn't know what having a child with Down syndrome meant for our family.
Looking back... I'm kind of sad that I was never educated. I really didn't know a thing about Down syndrome... or disabilities, in general. I didn't know anybody that had Down syndrome and I had nothing to look forward to. Our doctors were not the most supportive and the brochures that we were given regarding our daughter's diagnosis were less than promising. I felt more than alone.
This is why we educate and advocate however and whenever we can. We live our life... Down syndrome or not. We put ourselves out there and try to show the world that Down syndrome ain't so bad. Down syndrome is not a death sentence... hell, it isn't even debilitating. It is true love. It is sheer joy. It is acceptance of differences and embracing the same.
We have always said that if just one person is touched by our girls... then our job is done. But our prayer is that we go beyond that... I think we already have and we will continue to do so.
Six years ago this week, I sat in a booth at Chuck E Cheese with tears streaming down my face. We were there trying to have some semblance of a celebration for Mason's second birthday... the same day that we were to bring our daughter home from the hospital... seven days after her birth.
As I sat there, I couldn't help but watch the children run, laugh and play... all the while trying to hold back my tears... which was nearly impossible. I wondered how Payton would fit in to a scene like Chuck E Cheese. Would she even be interested in something like that? And if so, would the other children play with her... or would they stare and shy away from her? My heart broke all over again that day.
We often say... if only we knew then what we know now. Payton is just one of the kids. She plays, runs, climbs. She enjoys the same activities that all children do... and she does them just the same. She has play dates with her friends. She gets invited to birthday parties... and she has some pretty amazing parties of her own. She plays tball, she is in girl scouts and she is even on a cheerleading squad for a local basketball program.
While Payton might not have all the social norms down pat... she has fun and she loves what she does. We could care less how far she hits the ball, how many words to a cheer she knows or even how many moves she misses. She is happy to be with her peers... doing what girls do. We are so proud of her and her happy-go-lucky self.
Six years ago this week, we wondered what school would look like for our daughter. Would Payton be educated with her peers? What would her learning look like? Would she have friends? Would the other kids make fun of her?
I have to say... we are so blessed with our team at school. Payton is included in a regular kindergarten classroom 100% of the time, with some push-in support. She is doing amazingly well... and a big part of that is her peer support. Yes, she has friends. No, they don't make fun of her. They are proud of her and they help her along however they can.
The other day I walked into her classroom, and one little girl ran up to me, "Payton passed her test today!" She was so proud of her... as was I. The kids understand that Payton needs more support than they do... they understand that it takes her a little longer to learn the things they do. It is good... we are in a great place and it makes my heart happy. One of my DS momma friends once joked that her daughter is like the mayor of the school... ohmygosh, so true. When you walk down the hall with Payton, every.single.kid... "Hi Payton B, Hi Payton B, Hi Payton B." Love.
payton and some of her classmates
Here is where I will say that inclusion is hard work. I had to push a bit to make this happen, but we are so lucky to have a team that was willing to try... and willing to be educated about how to make this work for Payton. And I think she is showing them over and over again that she can do this. Inclusion can be successful, you just have to know how to make it work. You need to support your teacher and be present in the classroom. You need to network with the other parents and help them to understand Down syndrome, so they can relay that to their children. And so far... it is working.
Man, I love that chick so much... she has changed my life forever. I was bawling the other day just thinking of how far she has come and how thankful I am for the blessings in our life. I'm not sure how many years I have cut off my life worrying about both of my girls... many of those worries unnecessary in hindsight, but when you don't know what you don't know... you worry.
Six years later, I hope we have shown in some way that life is good having Down syndrome in it.