In yesterday’s post, guest blogger Amy Stout described her feelings of inadequacy as mom of a child with disabilities. Her energetic and curious daughter Kylie lives with autism, and Amy often worries about being the mother her child needs. Today, in the second part of the series, she tells how her priorities have changed Kylie entered her life.
Becoming the Mom a Child with Disabilities Needs, Part 2
It is late at night, once my girl is FINALLY asleep – at least for a few minutes, that I am able to lower my aching back to re-dress the naked Barbies, so the toy supervisor can promptly undress them and lay them out first thing the next morning. I hear things pop and creak as I bend over to put lids on markers and put them in their container. I fall to the floor to wipe up the day’s stash of glitter glue and attempt to bring some order to our pigsty.
What I Loved Way Back Then
I used to love decorating and planning the next remodel… now, I just beat myself up over how I look anything but a model, how I don’t ever “exercise” in a proper way, how I never eat a decent healthy meal, how I have lost zest and pep for the challenges (like tearing into my bathroom tile and wallpaper) that used to excite me as I planned.
What I Love Now
Is it okay that I enjoy laying on the floor to watch my girl color and sit by her on the couch to watch Barbie movies? Is it okay that my big planning project is how I can possibly pack the diaper bag and some favorite toys to get them in the car without her seeing? Is it weird that the biggest challenge in my daily life is how to navigate the living room without needing an ambulance so as not to disturb my girl’s creations? Do I need psychological attention because I take pictures of all the mischievous things she does?? We have way more Kodak moments than time outs in this house!! (Oh yes, our red letter edition Bible, penned by Kylie, WILL find its way into the family scrapbook.)
What I Will Love Tomorrow
Tomorrow, I WILL be a better mommy, my precious Kylie… once I figure out just what that is and what you need me to be! Hang in there with me precious! I love you!! I’m with you sweet baby!! I really want to be all that you need!
How Has Being the Mom of a Child with Disabilities Changed You?
I admire Amy for being transparent about her feelings. She was brave enough to put into words the feelings, fears, and experiences many of us are scared to mention. Which of them resonate with you? What would you add to the questions she asked in Part 1? And how have your priorities changed since your child became part of your life? What are your dreams for tomorrow?
Please leave a comment if you like. Maybe your transparency will help other parents realize they’re not alone. And remember, you can read more about life with Kylie at http://histreasuredprincess.blogspot.com/.
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My dear Amy! Oh how I can relate to much of what you have said! I don’t have a “special needs” child in the typical sense, but every child has unique needs because each child has a unique personality. But make no mistake you are the best mommy for your child! You’re the ONE God chose to be her mother! You are much more than okay! You are making her care a priority! God knows that those “perfect housekeepers” would be much too busy keeping their houses spotless to be the mommy she needs! Thank you so much, Amy, for sharing your heart so honestly & openly! This is an encouragement to many! God bless you & your family. Rest in Him & find strength in Him to carry on for His glory!
Wow! I wouldn’t even know where to begin! I have many of the same feelings times two. We have a quadruple challenge in our house. For, not only do we have twins who are autistic, they are also blind. The “experts” know what to do with a blind child and they know what to do with an autistic child but the combination is near to impossible. With the strength through God we have made it through the last almost six years of their eight years. I would add to Amy’s that it’s hard to lose the time you used to spend with friends. You can’t just get together and let the kids play while you chat. In our case, it seems like people think your kids are some kind of freak so they keep their distance. They see the disability and not the child who yearrns to be accepted and talked to like all the others, even though they can’t express it and maybe don’t even know the feelings are there. We truly do have different dreams like hoping one day the diapers won’t be needed. We dream of sitting down to eat and everyone is feeding him/herself the meal that has been prepared–not three separate ones. We dream that one day we might have a real conversation with our child or that we may finally become “mama” and Daddy” in a child’s words.