The Quest for Balance in the Midst of Chronic Chaos
Isolation. Special needs parenting is isolating for me. I know it’s my deal.
I choose to give my daughter all I have. But I am also just doing what I know to do.
I am admittedly exhausted. Burnt out even.
People always ask, ‘How is Lexie doing?’ Sometimes, I really just wish they would ask how I am doing.
With all of her multiple diagnoses and challenges in many ways she is doing better then her Mama.
What do I do everyday?
I cook because providing nutritious, delicious food is one of the FEW ways I can REALLY make a difference in her life.
I administer medications and supplements. Add one and subtract another.
Poop. Oh my God poop. No poop. Day after day despite what I give. Then…a poop explosion. Week after week. Year after year.
Chronic Sleep deprivation. Constant loud, verbal stiming. It’s not pretty.
I can easily become quite a bitch without too much effort. My brain is always in a fog.
And you see, after sixteen years of seizures, hospital stays, and one crisis after another, my brain is always in a fog. It’s always one more phone call to a doctor, insurance company, therapist or the school district.
Always one more call.
Then she’s home from school.
I am forever trying to figure out what this very smart, nonverbal child needs. And it is a big fricken puzzle.
I am a detective on 24/7 duty living like the very next thing I find is going be the next best thing to solve the latest puzzle.
I am a nurse and a medical specialist following every lead on the web I can find.
I am an Occupational Therapist, a Physical Therapist, a Speech Therapist, a nutritionist, and an alternative medicine specialist.
I am forever busy. You see there is no time for lunch with the girls or Pilates. Or even connecting with another adult who can relate.
There are no play dates. And this is certainly not Disneyland.
My girl is so sensory sensitive, that every day is the exact same.School, followed by a nap, followed by her almond milk and gluten free cookie. followed by the same story books we have read since she was a toddler.
She loves her books and I love that she does.
I would not change story time for anything in the world.
Written by Mariah Cuddy, mom to Lexie
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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.
I am the mother of a very devoted, very special ABA therapist named Lillie. She received a psychology degree/minor in sign language and later earned a Masters in ABA. She now lives in Dallas and is a specialist working with children like Cooper. She loves seeing the small but HUGE achievements her precious children make every day. She also sees how the parents struggle, how much they love their children, and sees them achieve and grow as much as their babies. .
I found your videos by accident, was drawn in by your enthusiasm, positivity, message, and your undying hope. You are one of the strongest women… and you are doing so much good.
I was a teacher for years before staying home with my own children… necessary because their father traveled with his job and worked long hours. I know the feeling of the cage… even though it is a cage of love and there is a reason for it… it can be lonely, exhausting, and seemingly unappreciated most days. The love you have for your children will get you through. Try to remember to keep your marriage always in the forefront as much as you do the children. You two need each other. And know that there is an older Mama in SC who doesn’t really know you personally, but has put you on her prayer board and will lift you up daily.
I see the other side of the fence as the mother of a devoted, loving therapist and neighbor to a beautiful autistic little boy. Thank you for being so open and letting the world see what it looks like on your side. You are so open and so graciously honest it makes my teeth hurt. The grass may not always appear greener where you step, and others may not always see them. You are showing seeds in your field for a strong path for your little one’s life that will produce not just boring grass but flowers that are rare, unique, and beautiful. You are helping Cooper blossom!
Be strong… but accept help, accept your imperfect humanity (it is NOT weakness), accept hugs and prayers. You give so much to others… but always refill your own carafe lest it run dry… nourishing no one!
I have suffered some heartaches and loss in my life. God always got me through. In one very dark moment when I cried out in the darkness HE gave me a beautiful mantra. “Ellen, put one foot in front of the other, repeat!” Simple but there were days I didn’t want to get out of bed and those words made my feet hit that cold floor and get through a day, and another, and another…. I am still stepping today.
Keep stepping sweet girl! You are so beautiful… inside and out! Adopted Mama hugs from SC.
Psalm 121 and 91. ❤️
(While I typed this I heard Joe Cocker-I am old ?- singing ?”You are so beautiful”… I hope you can hear it too)