Let me preface my story with....on a daily basis Down syndrome is NOT the center of our world or in every thought. Yes, Hailey has DS and I'm with her every day but she doesn't wear a flashing neon sign or have a bubble above her head that says "DS". Life is what it is. Yes, she has therapy due to her diagnosis but even then my thoughts rarely go to "DS", it is just a part of our life that has been integrated to help Hailey with her weaknesses. Just like we know my oldest needs a little "decompression" time after school before he is a functioning member of the family....just like middle son needs to be in control (he thinks he is in control) of a few things each day for his sanity. It is the way they are.
Yesterday was our 10th anniversary. Why we chose to get married between Christmas and New Year's is beyond me :-) It is generally a low-key day and we don't do much. Between the two holidays, we are celebrated out, it is a busy time at his work and he referees high school basketball (it is a busy time for that also). Last night I decided to go with him to his game and we would grab a bite to eat afterwards. We chatted along the way to the game and teased how "romantic" the evening was. We get to the game and I have a seat in the bleachers. I watch as a group of teenage girls chat and walking across the floor followed by a handful of cheerleaders giggling. Along came the wave....the tears started to well in my eyes, my heart started beating faster and my breathing became shallow. The thoughts started racing through my mind like the cars in the Indy 500. Will she have friends? Will people just patronize her like she is a 5 yr old? With they truly get to know her or will they see her as a "burden"? Will she be an outcast? Who will watch out for her? Will they make fun of her? I couldn't make the thoughts and questions stop. Jason came and sat down with me for a few minutes before he had to change. I whispered out the words, "I worry about Hailey as a teenagers. What will her life be like?" He nodded and replied, "Me, too". After that he was headed to the locker room for his game and I was left to my thoughts again.
Maybe I should be worried more about her cognition and learning. How she will perform at school...how much assistance she will need...how hard we will have to fight for full-inclusion. Yes, I know that will always be a focus but let's be honest, there is more to life and living. The social aspect of school is one that cannot be overlooked. How will her peers accept her? How do I reassure myself that everything will be okay when I'm not there to hover and mediate? It breaks my heart to think how cruel children can be. We deal with that with the older two boys. How will Hailey deal and how will we cope? It frightens me. I was able to hold my composure and turn my attention to something else before I started to cry in front of a few hundred people that I didn't know.
I didn't realize it but when I changed seats at the beginning of my husband's game, I was directly across from the student section of the home team. In the front bleacher, by himself, was a teenage boy wit Down syndrome. At that moment, the tears came again. There he sat all alone. I didn't let the rational side of my brain have any participation in my thoughts...he could have chosen to sit by himself. I was just suddenly so sad about the situation. I watched him watch the game for a few minutes and my attention was drawn to something in the game. Then, my mind wandered back to the boy. This time he was sitting in the middle of the student section. It appeared he was sitting by himself again when someone said something to him and then gave him a big hug. For the next 10 minutes or so, I watched him engage with the other students. They were high fiving him, hugging him, ruffling his hair. I was sitting across the gym so I have no idea the conversation. They all appeared to be enjoying his company (and this is the thought I am sticking with...for my sanity). I suddenly felt better about my earlier fears. Yes, they are all still there....I will worry about them now and probably until the end of time. They won't go away but I feel better knowing that Hailey is growing up in a time of more acceptance and understanding. I'm hoping that we can continue to improve that as she grows! My husband gives me grief. He tells me that I need to focus on the now and what we have on our plate in the present and worry about the future as it comes. It is probably good advice but there are times I can't control where my thoughts go. I wish I had a crystal ball to let me see into the future and how life will be for Hailey but I can't find on and I don't think the magic 8 ball's are very accurate!
|Don't mess with the girl's Cheerios!|
|Fighting a cold but still playing with her new kitchen (sorry for the drool!)|
|Trying to decide how much noise she is going to make!|