I See You Mama, But Do You See Me?
Dear mama with normal children,
“Normal? What is normal?” you might be asking.
“Is that even politically correct?”
Honestly, I’m not sure because I’m tired.
And I don’t spend my free time on political jargon.
And I definitely don’t sleep well.
And most of my waking hours, I’m caring for someone else or finding resources that will hopefully make our life a little bit easier someday.
Someday…a day that feels more and more like a unicorn lately.
You see, I’m a special needs mama to a 16-year-old son.
And no, it’s not politically correct to call myself that because I am more than just special needs (or so they say).
But am I? Because a good 90% of my life revolves around my child and what we can or can’t do because of his limitations.
You see, I often see you and your beautiful normal-functioning children out and about in the world, and I’m envious.
Yes, I said that out loud.
I’m not supposed to say those words because I have my miracle baby, the child the experts said would never live. So there’s always guilt attached to my envy.
But I see you and your kids flitting about at school events, soccer games, and gymnastics.
You seem a little frazzled with such a packed schedule, a schedule that never once takes into consideration who will stay home to care for your child with special needs.
Or how you’ll entertain him if you’re brave and bring him along or where you’ll change his diaper or quiet the screams when he gets bored or overstimulated.
I see you traveling around the world having the time of your life, an option that would never in a million years be possible with my child…all of the flights, sounds, stimulation, too intense.
And I see you camping with your crew…enjoying the simplistic joys of nature and hot dogs and s’mores. It’s an experience we will not have as a family because my child would scream all night in the confining quarters, ensuring no one would sleep and no one would have fun.
Yes, we do employ occasional caregivers, which adds $1,000 to the family vacation budget.
It’s not cheap to not take a child.
I see you attending church and school outings as a family, socializing after the service while I run to relieve the volunteer watching my son who I know is “ALL DONE!”
I see you at your small group gatherings, meeting in homes for food and fellowship…homes that aren’t accessible for a big 16-year-old who often needs his normal in order to feel safe.
I see you traveling out of state to visit friends and family over the holidays, something that will never be our reality because no one wants to sacrifice holidays with their family to watch my son.
I see you dropping your kids off at camp. It’s something I desperately yearn for but can’t experience because of sleeping arrangements or diaper rules or a lack of independence on his part.
I see you making spur-of-the-moment decisions to do something fun like biking or hiking or rollerblading. We would love to include my son in fun activities like this, and we could with an adaptive bike, but we don’t have thousands of dollars to spend on one child’s bike purchase.
I see you at the festival and the mall and the amusement park. Again, stimulation, lack of diaper changing stations for grown people, heat (which causes his skin to break out), stares (which, honestly, I’m over), outbursts, and lack of coordination prohibit many of these outings.
I see you at the museum and the library…two places that would not appreciate my child’s loud outbursts.
I see you losing sleep over your child’s poor grades or bad choices or lack of friends as I lose sleep because my kid has rarely slept through the night in 16 years.
I see you pouring over college applications, visiting campuses, and getting teary-eyed over the prospect of your child leaving. I weep over the lack of future options and contemplate which state (or country) we should move to for the best shot at something, anything other than him watching Veggie Tales in my basement forever.
I know, I chose this.
I chose him.
I chose to continue the pregnancy when others told me not to.
I chose life having no idea how difficult that choice would one day be.
His non-stop needs. His growth. His angst and outbursts as he goes through puberty.
Every day, I choose this hard and holy work.
And it chose me.
My life is isolating and exhausting and sacred and has taught me mercy and compassion and grace.
Luke, my boy, has taught me more than anyone behind the pulpit ever has.
You, mama with normal children, please check in on me…even if I seem fine.
Because many days, my child is inconsolable and screams because he can’t understand.
I’ve changed numerous diapers. I’ve had had food thrown at me as I try to zone out on social media while he pulls my arms and hair, trying to get me to understand his desires.
I stare a little bit enviously at your life online, your seemingly simple life with normal children.
I see all you are able to do, and it hurts a little bit knowing we’ll never be that family.
I just want to ask: please, see me too.
Love,
A special needs mama
Written by Jess, Ronne
Jess Ronne is an author, speaker, podcast host, and caregiver advocate. She is founder and executive director of The Lucas Project—a non-profit dedicated to providing recognition, resources, and respite for special needs families. She and her husband Ryan live in Tennessee with their 8 children, including their son Lucas who has profound special needs. Her story of beauty from ashes has been shared on The Today Show, Daily Mail and Huffington Post and is detailed in her memoir Sunlight Burning at Midnight. To follow the ongoing saga she can be found at www.jessplusthemess.com or www.thelucasproject.org. You can also find her on FB, Instagram, Pinterest and Twitter. Her podcast can be found on Anchor FM.
Her second book, Blended with Grit and Grace is arriving June 15, 2021.
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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, subscribe for exclusive videos, and subscribe to our newsletter.
