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 15 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 high percentage of my life revolves around my child and what we can or can’t do because of his limitations.
I often see you and your beautiful typical functioning children out and about in the world, and I’m envious.
Yes, I said that out loud.
And 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.
I see you and your kids flitting about: school events, soccer games, and gymnastics, 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 over stimulated.
I see you traveling around the world, having the time of your life; an option that will never in a million years be possible with my child with all of the flights, sounds, and stimulation. Or camping with your crew – the simplistic joys of nature, hotdogs and smores – an opportunity we will not have because my child would scream all night in the confining quarters – ensuring that no one would sleep and no one would have fun. We do employ occasional caregivers in order to experience these events with our other children but that adds $1000 to the family vacation budget. It’s expensive 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, for sure, 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 15 year old who often needs his normal in order to feel safe.
I see you traveling out of state over the holidays, to visit friends and family – not our reality because no one wants to sacrifice their holiday to watch my son, and we won’t take him because that would be a deep level of purgatory for all involved.
I see you dropping your kids off at camp – something I desperately desire for my son but has so far been a distant dream 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 skating. We would love to include my son in fun activities like this, and we could with adaptive equipment, but stuff like that costs lots of money, and 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. Crowds and smells and lack of diaper changing stations for grown people and heat (which causes his skin to break out) and stares (which honestly, I’m over) and outbursts and my aching back from carrying my child his whole life prohibit many of these outings.
I see you at the museum and the library – two environments that would not appreciate my child’s loud outbursts or licks – yes, licks, that’s how he gets to know many people.
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 15 years.
I see you pouring over college applications, visiting campus’s, and getting teary eyed over the prospect of your child leaving, and 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 angst and outbursts as he goes through puberty.
Every day I choose this holy, hard as hell, 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 with me – even if I seem fine.
Because there are many days when my child is inconsolable and screams because he can’t understand, and I’ve changed numerous diapers and have 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, and I stare a little bit enviously at your life online, your seemingly simple life with normal children, and I see all you are able to do and it hurts a little bit knowing we’ll never be that family and I beg of you-
Please see me too.
A Special Needs Mama
If you feel compelled to help caregivers of special needs children, please consider The Lucas Project - a non profit that provides respite days for special needs caregivers. Thank you.
Just keep livin!