5 Important Lessons My Daughter With Cantu Syndrome Has Taught Me
Here we are trying to teach our children about life, meanwhile there they are showing us what it’s all about.
1. Be strong and keep my faith.
In a sense I feel these two are one in the same. You see, to be strong I must have faith, and to have faith I must remain strong. Day after day I survive because the fire that burns inside of me in is stronger than the one that blazes around me.
Seeing the strength and determination that my little 27-pound, bright-eyed girl possesses is greater than any grief or heartache that could ever try to surround me.
2. Slow down.
Sometimes slowing down can be one of the most precious gifts we can give ourselves. Before Mackenzie was born it wasn’t uncommon for me to work a 60+ hour work week and then be too exhausted by the time I got home to read the kids a bedtime story or have fun making a mess. It never fazed me. In my eyes I was doing what was necessary to keep my little family afloat. It wasn’t long before I realized we are all living on borrowed time. You can spend it, but you can’t keep it, and once it’s gone you can’t get it back. Take time to enjoy the little things. Bask in the chaos you know as life. Before you know it you’ll be wondering where the time went.
3. You’re not alone.
Sometimes having a rare one will leave you on on that cusp of feeling isolated or that you’ve fallen off the beaten path. Receiving MacKenzie’s diagnosis was bittersweet. We finally had an answer, yet none of our doctors had ever heard of this thing called “Cantu syndrome.”
I had never felt so alone in my life. It was like I was standing on an island with nothing in sight but sharks just waiting to pull me under. I went through all of the normal emotions: sorrow, anger, relief, fear of the unknown. I landed on determination and ran with it. I was determined to learn everything there was possible to learn about her diagnosis and what I could do to make sure she had everything she needed, to make sure she had the best quality of life possible and all of the opportunities everyone else on this big green earth has. In my quest for answers I have found some of the most amazing, wonderful people and have made the best lifelong friends anyone could ever hope to have. We no longer carry that heavy feeling of impending doom. There is no more feeling like we’re going down alone.
As a parent the feeling of not being able to help your sick child is nothing short of unexplainable. In the 50+ times my girl has been hospitalized, in the hundreds of times she’s been poked, prodded and held down for test after test, she has persevered. So many times I have carried the burden of helplessness. I have often felt as if I was not enough for her. Then it hit me: I don’t have the time to be sad about the things I have no control over. If she can endure everything she does, so can I and then some. I have no choice but to keep fighting. I have to fight to make sure she knows she is worth fighting for. I have to fight to show the rest of the world she is worth fighting for.
Out of all of the things my daughter has taught me (and believe me I could go on for days and days), love has been the biggest. She has taught me how to love unconditionally, love without limits, without expectations but most of all how to love without fear — something I wasn’t sure was possible just two years ago. No matter what tomorrow brings I have been given the greatest gift imaginable. I have been given the chance to be the mother of someone so rare and spectacular. I get to raise a little girl whom I have no doubt will one day move mountains. There is no greater gift than to love and to be loved, and I’m lucky enough to have that day after day.
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