My Unexpected Journey: Lessons Learned From Raising a Child with a Disability
Becoming a mother has been one of my greatest life blessings, and, as the mother of a daughter with Ataxic Cerebral Palsy (CP), it’s also been an ongoing learning experience marked with love and patience. My unexpected journey with Lara, now 9 years-old, has taught me three of the most important lessons in life, including:
Learn acceptance (but keep faith).
In the time we’ve spent raising Lara, I have come to wish for two things: that I learn acceptance, and that she lives a happy life. When Lara was diagnosed with CP, we knew that her developmental limitations would keep her from having the same opportunities as her older brother, Dylan ,and her own peers.
We found the opportunity for Lara to receive a cord blood stem cell infusion from the umbilical cord stem cells we had banked at the time she was born. When we originally banked Lara’s cord blood with ViaCord through their Sibling Connection Program, the plan was to use it (if necessary) to treat Dylan’s Leukemia. As it turned out, Dylan’s treatment didn’t require the stem cells, and he has been in remission for several years now.
When the opportunity came for Lara to receive treatment with her own cord blood stem cells through a clinical trial for cerebral palsy, it seemed like a miracle. After two treatments, it was like a veil was lifted. Her attention span increased, she developed curiosity (we had to child-proof the house for the first time!), and she finally started to interact with our family and friends in ways she never had come close to doing before. Lara began to show an interest in computers and other things around the house. I got to dance and sing with her to Barney videos and hear her laugh when she was having fun. I always dreamed of this, but never in a million years did I think we would see Lara be able to interact this way.
These lessons have taught me that one of the best things you can do for your child is find acceptance and give them the best chance for a happy life. Acceptance doesn’t equal resignation. Embrace them just the way they are, but continue to be diligent about providing opportunities to expand that happiness. Live for the laugh!
Value the time shared with your child.
When I had Lara, I imagined she would grow up and we’d have a relationship just like I had with my mother. My mom and I always found common ground in the typical girly things like shopping and the sporadic trip to the nail salon; but with Lara, it was different. I’ve learned that with special needs children, sometimes what we consider to be typical gender traits don’t ring true. I’ve tried to force the girly girl into Lara by bedazzling her DynaVox (a device that helps her communicate) and eyeglasses, but she makes it clear that she is not interested.
I remember feeling sad that I wouldn’t get to share the type of relationship I had with my mother with my own daughter, but Lara and I have our own bond that’s just as strong. Lara picked up the “computer geek” trait from my husband and I, and she’s developed an incredible love and curiosity for the computer. One of our favorite things to do is to watch videos of Dora the Explorer and The Wiggles on YouTube. When my husband travels abroad for work, he and Lara glue themselves to each other via Skype and she gives our computer screen a beating with kisses and handprints. Watching her interact with her father and the rest of the world online is such a joy for me as a mother.
Find a support network, then be one for others.
If I’ve heard it once, I’ve heard it twice – parents are the greatest resources for other parents. But for parents of special needs children, the value is underscored. When our family moved from Central Florida to Tennessee, we didn’t know anyone and there weren’t any existing groups in our area for parents of children with different disabilities. So another mother and I formed one in our area called the A.S.K. Network. It turned out there was an incredible need for this type of group and it grew exponentially. Through our network, which included parents, grandparents and anyone else who cares for a special needs child, we have a wealth of knowledge, support and friendship. We share resources like hippotherapy with horses, which was incredibly uplifting and therapeutic for the kids – some even verbalizing for the first time out of excitement. We share a lot of enjoyable moments like these, as well as critical aspects of our lives. The empowerment and support that comes from this type of networking is enriching. If you haven’t already found a way to network with other parents, find a friend and start your own group. There’s nothing stopping you.
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