Coping with the Life You Never Imagined
As I look at my son I see a miracle. I see a little boy that has been defying all odds from the moment he was born. I see a boy that has fought so many battles in his life and has overcome most of them with a smile on his face and love in his heart. That little boy saved my life (literally- because of him we discovered my thyroid cancer and doctors were able to remove it). He has taught me more about living and fighting then I ever thought possible. But, it wasn’t always that way.
My husband and I knew that he was going to be disabled while I was still pregnant; we just didn’t know how bad it would be. We prepared as best as we could and got started on paperwork for him to start getting SSI (Medicaid) benefits as soon as possible. I quit my job to take care of him and we turned our house into a medical supply warehouse when he finally came home.
I (kind of) knew what I was in for
While I was pregnant, I knew other people that were pregnant, too. I knew that our life would be so much different than theirs; that ours would be filled with hospital stays and hardship and that we would be dealing with a system that we had no idea how to navigate. I knew that we might not ever be a happy family of three, because our son has had so many issues and that the doctors might not be able to fix them all. I (kind of) knew what we were in for and it made me sad. It made me angry. Why us? Why now?
We didn’t ask for this life. We didn’t know anything about this life. We were first time parents and now we had to deal with this very complex child on top of it! I know that there is a plan for our lives, but, I wanted to get “clued in” on what it was. I started to think about the life we would never have and I would get depressed. We would always have to deal with cords and tubes. Everyday things like going to the grocery store seemed like an imposable task. We could never just plop him into a cart and continue on. What about family gatherings? Our house wasn’t big enough and carting all the equipment took too much time and effort. What about going on a date? Who would care for him? Who would have the knowledge or feel comfortable enough to be left alone with him? There were so many questions and we didn’t have the answers to any of them. When we tried to come up with some it was exhausting and we came to the conclusion that it was better to just stay home. We didn’t go on dates. We didn’t go to weddings. We went shopping together, as a family, because neither of us felt comfortable enough to be alone with him. We missed out on a lot of things and ended up secluding ourselves from family and friends.
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