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 impossible 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.

We still don’t have everything figured out

Life was hard for a while, but we knew we didn’t want to stay that way. We had a friend sew some straps into a backpack so we could carry equipment and cords. We found a few people that were willing to learn what he needed and how to care for him (that already had at least CNA training) and we went on a 2-hour date! We got a stroller, and eventually a wheelchair, for him so we could go places. We had great people that showed us how to navigate the special needs and government systems. We have gotten to know a few other families that are dealing with some of the same issues that we are. Life is not perfect and we still don’t have everything figured out. As he gets bigger we are forced to find new ways to do things. I still think about how life would be different if he was like every other kid, but I don’t get so depressed now. I don’t compare him to other kids because I know he is special in his own way and love him more because of it. I hope you can get to a place where you are happy. It doesn’t take a special person to raise a special needs kid. It just takes a bit of “thinking outside the box” and determination.

Here are some resources for you to start with:

VARIETY is a charity that helps connect families together by offering free (or low cost) activities for families to do. http://www.usvariety.org

SHARED ABILITIES A community where you can connect with other people with the same diagnosis and can get tips on all sorts of issues. http://www.sharedabilities.com

GLOBAL GENES If you have a rare disease this site may help you connect with others that have the same thing. http://globalgenes.org

FEEDING TUBE AWARENESS FOUNDATION Feeding tubes are pretty common for special needs people and if you are faced with getting one, they may be able to offer support or advice. http://www.feedingtubeawareness.com

DISABILITY BENEFITS-SOCIAL SECURITY This is the direct link to apply for disability within your state. http://www.ssa.gov/disability

Tracy Felix Tracy blogs about her life and challenges as a mom to a son with special needs. Her blog has provided a forum for parents to get support, share ideas, and learn. You can connect with her www.facebook.com/xlinked1

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• 8 Ways to be a Great Advocate For Your Family Member With Special Needs
• How to Get Free From Unrealistic Expectations of Motherhood
• I Do Not like Being a Special Needs Parent and That’s OK
• Being United, Pampering, and Taking Care of Ourselves
• The Special Mother
• An Ode to the Exceptional Mom

This post originally appeared on our May/June 2015 Magazine