Defining

When our son was born with multiple birth defects my husband and I made the very important decision that we would not give people details about our sons condition. We would talk about his VACTERL but not which letters he had. It would be need to know only, and very few people were told. We made this decision to protect his privacy, but also to insure that he would not be defined by his diagnosis. This happens all to often in our society today, children and adults alike become what they have and not who they are. That’s not what I wanted for my son. I want him to make his own path, create his own legacy. Shouldn’t we all be given that opportunity in life, to define ourselves? I refused to let VACTERL define him. So for the last 6 years we have kept his day to day issues to ourselves and we remind him almost daily that he can be whoever he wants to be.
A few months ago I was struck by some serious irony, for the last 6 years I have tried so hard to keep my son from being defined by his rare disease, that I had become defined by it. I was a rare disease mom. In that moment, I felt devastated. My days revolve around medication times and schedules that must be kept. I go into panic mode when someone from his school calls, my brain always goes to worse case scenario. My relationships have all changed as well. While I feel that it brought my husband and I closer together, it separated me from most others. I struggle to relate to people and feel people don’t understand me anymore.
Of course, I wouldn’t change any of this. I know that God has a purpose in it all but this realization left me troubled for months. You see, our society tells us that our children shouldn’t define us. As women, we should “want more”. I’m supposed to want to work outside the home, have lots of friends, go on girls weekends, etc. I have had several people ask me when I plan to return to the workforce. This caused me to take a serious look at myself for the last few months and you know what I found? My life can be hard, but I was happy until society told me I shouldn’t be. I found that my happiness comes from watching those closest to me, my husband and sons, experience happiness. I don’t just love to cook, I love cooking for them. I don’t just love to travel, I love to travel with them. Every sentence I started with “I love” ended with “with/for them”. There may be times I hide in my bathroom crying because I wish things were easier for my son, but then I cry happy tears when he does something we never dreamt he would be able to, those moments define me. When my oldest helps his little brother without being asked or stops to help a stranger, those moments define me.
I have discovered that God created me to be a caregiver. He created me to be a wife and a mother. He gives me the strength daily to be a mother to not only a teenager, but also to a first grader with a rare disease. It’s a toss up which one needs more strength and prayers lately. I didn’t chose this life, just like my son didn’t chose his, but it’s up to us on how we handle it. I have decided to no longer hide what defines me, and I will do this without compromising what defines my son. I will continue to fight for him to be able to define himself. This may be his journey, but God has made me his guide. I’m not the perfect wife and mother, nor are my husband and children perfect. But at the end of the day, at this stage of life, I am proud to be defined by them.