Who are the MOTHERS OF CHILDREN WITH DISABILITIES?
Happy Mother’s Day! My son Evan turns 25 this month and was in a car accident 10 years ago that left him paralyzed…a quadriplegic. There are so many struggles that we mothers go through when our children are hurting. Right now, I want to also focus on a great Koan and spiritual wisdom that says, “What is true, is also not true.”`here that have children with special needs. I actually sometimes feel left out because, more often, these special needs are developmental. My son was fully capable physically and otherwise before the accident at 15 years old. Even now, his mental and verbal capabilities are just fine. It’s the physical limitations that are a barrier: the reliance on nurses to show up, medicines to work and side effects, keeping infections and pressure sores at bay. And keeping his kidneys functioning properly.
Being a Mother to a Child with a Disability
I realize though that we mothers have more in common than we have differences. We speak the same language. Here is the universal language that we speak: disorder, spectrum, diagnosis, special needs, high functioning, emotional and mental challenges, anxiety and depression, coping skills, remediation, processing delays, therapy, ups & downs, special needs, IEP, Waiver, family leave, resources, meltdown. Oddly, because of these things we have in common, I celebrate our sisterhood and find comfort in the support. This Mother’s Day, my family will recognize the 10th anniversary of when our lives changed forever. Quite frankly, it also marks the point of my spiritual transformation. I want to send a special blessing to each of you and your children. Here is the other side of the truth…Our vocabulary also brings a unique energy and flow back into our mega-ability to thrive as a family. Inspiration, aspiring, helpful, supportive, intervention, amazing, victory, pride, sharing, growing, and knowing our children as special blessings.
My Journey
Immediately following Evan’s car accident, the entire family suffered from depression. Amazingly, he still led the light and has become the epicenter of trust and inspiration. In telling his story, he talks about how he couldn’t move or speak. His head was in traction to support his broken neck (C4/C5 injury); he was being fed through tubes and didn’t eat solid food for weeks. His lungs collapsed, and he had a tracheotomy, that we had to continually go into and suction out mucus from his lungs to keep him from drowning in his own phlegm. The list was endless. He lived in the children’s hospital for 3 months, and it was only after about the first month I started to feel some comfort that he might actually live. Eventually, the tubes came out one by one. He was able to learn to talk again. He learned to eat again. He learned to be social, and manage a motorized wheelchair. He still has not learned to walk again or use his hands, but we feel strongly, deep within that one day, it will happen. He counts it as a blessing that he even survived. As do I. Evan tells people that when you can’t eat, you appreciate eating all the more. When you can’t travel easily, you appreciate the visits from your family. When you can’t put on your own clothes, take your own showers or make your meals, you appreciate your nurses and caretakers all the more. Basically, he is an inspiration to everyone, but most of all, to me. Because of his disability, it highlighted my capabilities as a mother and my faithfulness as a woman of God. He showed me how to find the perfection in everything. That what is true is also untrue. He is disabled, but he is also much more than that. He is capable in the ways that truly matter in life. Evan’s life teaches us to live with inspiration, with love, without judgment, caring and appreciating your fellow man, and how to trust in our higher power.
Let's Celebrate!
So this week, ladies, as we are celebrated as mothers, I want you to party hard. It is because of the hard work, the lack of sleep, the buckets of tears, the unappreciation, the discrimination, the blame, and the shame that we experience from time to time, that makes the good times that much sweeter. That’s what I learned from Evan. The universe uses our children to teach us how to live life sweeter and more abundantly. And for that, I can flourish in the flow of life. It takes a lot to get me down now, but because of the miracle of his joy, I have learned not to stay down too long.Happy Mother’s Day to all the mothers out there. Especially the mothers of children with disabilities. You rock!Love & light,TK