I have often been asked what it is like being the mom to a child with a peroxisomal disorder. The first time I was ever asked this question, I simply responded with, “It’s no different from being a mom to a typical child.” But in reality, it is very different- it is wonderful, scary, adventurous, challenging, fun, and a journey full of blessings.
My daughter Anna Violet is one year old. She is deaf and blind with many health complications. She makes being her mom the most rewarding gift out there. Watching her overcome so many obstacles that life has chosen for her, is truly an amazing thing to watch. At 4 months old, she started physical therapy, she worked so hard and refused to give up. But she looked like a rag doll and I feared the worst. Today, she is stronger than I ever thought she’d be. She is sitting, rolling, kicking, bouncing and so much more.
With Anna Violet being deaf and blind, one of the hardest things that I had to come to terms with was: she will never know what I look like. It brings me such sadness; however, I am amazed that by just one touch, she knows I am her mommy. She knows the vibration of my voice, the way I cuddle her and when she melts into my arms, I know all is well. Sometimes, I just hold her a little tighter, speak a little softer and thank God for this precious angel he sent me.
Don't get me wrong, even with her challenges, she still acts very much like a regular toddler at times. I still get moments where I feel like I’m wrestling an alligator during diaper changes. Even though she has moments where she is like a normal toddler, our lives are anything but normal. Feeding Anna Violet every day is good example of this. She has a very strict feeding schedule since she is fed through a G-Tube. This is very different from heating up a bottle. We are mixing formula, measuring the correct amount, ensuring her pump is set up correctly, adjusting the feeding rate and amount, and then making sure the extension is hooked up correctly. But then, just like a normal toddler sometimes I have to tell her no several times as she pulls on her feeding tube and chase her across the living room floor because being still is just no fun at all. I think with every mother, with every challenge there is a reward, and with every obstacle there is a blessing. Overall, the love for our children is unconditional no matter what the future may hold.