I love my son but taking care of him is exhausting. I like to think that my friends whose children don't have special needs are also tired, and I'm sure they are, but not like this. It's not complete mental, physical and emotional exhaustion every single day. I feel like I am constantly running a marathon and the finish line is nowhere in sight. In reality, there is no finish line.
I don't like to complain about being Aaron's mom. I am so thankful that he is my son and that God decided he belonged in our family. He has changed our lives in unbelievable ways and I really don't want to change it. But it isn't easy.
There seems to be two different ways of thinking about Down Syndrome out there. Many parents look at it as a blessing and wouldn't change a single thing about their child even if they could. If there were somehow a "cure" (which is kind of ridiculous - you can't change someone's DNA), they wouldn't want it because it might alter their child's unique and wonderful qualities. I get that, I really do. I'm not sure I'm squarely on that side of the fence, but I can understand the thoughts behind it.
Then there are the parents that look at it as a terrible disease. The parents who will do anything and everything out there to try to minimize the effects that this extra gene has on our children. There are nutritional supplements, rigorous therapy schedules (as if our five hours a week aren't enough!) and dietary protocols that are aimed at improving the child's chances of living a more "normal" life. I know I'm not on this side of the fence, but I can see this perspective as well.
Honestly, I think I fall somewhere in the middle of these two views of Down Syndrome. Either that, or I still haven't quite figured out how I feel about it. I have a feeling I'm not the only one who is stuck somewhere between "I love DS" and "I love my child, but I hate the syndrome". I have always hated the stuck in the middle feeling. It's not a good place to be. But I suppose part of my journey is to learn to accept that. It doesn't have to be all or nothing. If a miracle drug is developed someday that will effectively eliminate all of the effects of Down Syndrome in my child, I will have to decide then if it is the right thing for him. I'm not holding my breath, but you never know what the future might hold.
For now, I'm just trying to get through each day. Running through the never-ending race that is my life. Doctor's appointments, therapy visits, trying desperately to figure out how to communicate with my son, studying every label of every food that might go into his mouth to make sure it isn't going to make him sick, running after him or trying to hold onto him every minute that we are outside of the house, beating myself up about not doing enough for him, trying to make sure I give Jacob everything he needs while constantly worrying about his brother, struggling just to make dinner for my family because I'm so tired and stressed out by the end of the day and wishing I had time to even think about doing something for myself. There is so much more that goes into every single day of my life, but that is just a sampling of the thoughts that I have on a daily basis. I want to update this blog more frequently. When I actually do get a few minutes to think clearly, I have to decide whether writing for my paying job, cleaning the house, attempting to relax or one of the dozens of other things I need to accomplish will be the priority that day. Unfortunately, this blog doesn't top the list very often. It's therapeutic for me to write here, but there are just so many other things that need to get done, that it doesn't happen very often. And it's really hard to form a complete thought when I have a three year old tugging on my arm and screaming at me to turn on Blue's Clues...