I’m a mom with chronic illness and this is what it’s like to be me. Getting diagnosed with cervical dystonia in 2010 was the worst thing that could happen to me as a special needs mom. Cervical dystonia is a movement disorder that comes with relentless chronic pain as the muscles in my neck and shoulders are continuously spasming and shaking. Some days I look like I have Parkinson’s. It’s limiting and completely exhausting.
Truthfully, many days I’m struggling with Mommy Guilt. I have two children with special needs, one who definitely will never drive and the other is questionable at this point. I watch the moms around me who endlessly chauffeur their kids to enrichment activities, field trips and theme parks. Disney is an hour away and we’ve never gone as a family. We’re home a lot, which is fine with me but I feel bad about the kids missing out. One trip out results with my getting wiped out, sometimes for days. But I still get up and do it when I can..
I know my kids have missed out and it hurts me. I’m the mom who likes to experience everything and I was able to do it with my older kids who are now adults.
7 Things About Being a Mom With Chronic Illness
I’ve learned what’s most important
For me, to seek God’s will and direction every day of my life is foundational to everything else. I’ve struggled with depression and anxiety for years and have been sober since 1988. My recovery is contingent on my spiritual condition so…first things first.
Learning to Detach
As a special needs mom I have to go the distance in ways most moms don’t have to. I constantly have to think ahead and be ready for anything. This has come at a price. I began to think that the outcome of everything was dependent upon my efforts. The reality is that I’m a finite person with limited physical capabilities. I can’t do everything. This is where the 12 step motto “Let Go and Let God” comforts me. I have to remember that He’s in control and loves my kids more than I ever could. All He’s asking me to do is be a faithful servant to the best of my ability.
Practicing self care
I’ve struggled with disordered eating and various other destructive behaviors for most of my life. As a mom with chronic illness, I need to take care of what limited energy reserves I’ve got. After my spiritual disciplines, physical self care is most important. Daily movement in the form of yoga, wise eating choices and rest are essential to my functioning the rest of the day. I know that my kids are thankful for the healthy food choices in our home.
Meeting people I would never have met
In the old poem “Welcome To Holland” the author reminds us that in our journey as special needs parents we meet wonderful that we would never have met if our lives had not taken this turn. This is so true. I’ve met the most wonderful people from all walks of life in the special needs and chronic community over the years. I keep going because of them, even it’s only online.
I’ve learned to find joy in the little things. Even when I’m bed bound, I’m so grateful for a comfortable place to sleep when so many in this world don’t have that. Little things like coffee and a bowl of oatmeal soothes my soul.
I still advocate for my kids
Among four kids we have diagnoses of neurofibromatosis, Down Syndrome, congenital heart defects, learning disabilities and severe scoliosis. Trying to keep up with everything has been so trying and I feel like I fall short so many times. But I hope my kids will always remember that I had their back at all times. Like most other special needs moms, I go from zero to sixty in just about ten seconds when I see my kids might be treated unfairly.
I’m still me.
When I was a kid I wanted to be a journalist when I grew up. My college dreams were destroyed in a misspent youth. But through the advent of blogging, I’m starting to string words together again and find my outlet that way. I still love to cook and while I try to simplify as much as I can, I do enjoy it as a creative outlet. After 20 years of living in Florida I’m still an edgy, sarcastic kid from Queens at heart. For a while I tried to blend in here and stifled her. And then a few years back I had a bit of an ephiphany that it was perfectly okay to be myself. The only way to attract your tribe is by being authentic.
I’ve been reading Own Your Life: Living with Deep Intention, Bold Faith and Generous Love by Sally Clarkson and this passage really struck me:
In order to thrive and heal, you must accept any limitations by faith, trust in His faithfulness each step of the way, and wait for His grace so you can live a faithful story right in the place you find yourself.
Every day, no matter how I feel I have to show up for life as best I can and keep trusting in the One who has my back.
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