I’m a mom of one kid at a time. I have two, but I tend to parent them one at a time. It’s just the nature of our family and the rhythm of our schedule.
The way it works is I use respite time to spend with the big kid. Whether it’s the regular routine of getting him ready for school and going to and from school, or a special date just the two of us. On our dates we do normal kid things–the library, the park, the gym, sometimes we run the errands and sometimes we throw in something special like ice cream. Whenever we’re out, just the two of us, I wonder if people think I only have one kid. I cherish our special dates together. We both need them, but of course a piece of my heart is always still with Nathan.
My one-on-one time with Nathan, is typically when the big kid is at school but when the little boy needs to go to the doctor. I don’t tend do fun things with Nathan. For one, doctor and therapy appointments monopolize our time. Two, it’s not that fun to take him out because, hello medical equipment. And three, because people are starting to stare and I don’t quite know how to handle that gracefully.
We can’t leave the house with out several syringes.
So when we took Nathan to NY without the big kid it was a whole new experience. Sure the ultimate purpose was a doctor’s appointment, and we did indeed spend all day at the hospital on Monday. However, we mixed in some fun things (can I even say that!) and in the midst of the fun, (gasp!) I learned more about my littlest boy.
The most remarkable thing about having Nathan alone was the quiet. My husband and I quickly noticed how it felt like we were on a date at every restaurant because there was no constant chatter of a six-year old discussing Legos and Beanie Boos in the background. Of course little boy’s presence was still very much felt (and granted he has started to grab for things at the table) but generally he has a quiet, observant, content spirit than needs little more than lots of cuddling (and medical attention like feeding and medicating via a tube).
Hide and seek at restaurants. He covers his eyes with his arm and then throws his hand down waiting for you to laugh.
He’s also flexible at this stage. The cold, the rain, the mode of transportation doesn’t bother him. In fact, he gently giggled through take-offs and landings and bumpy taxi rides. The mittens and hats stayed on him, for the most part, and there was no whining and complaining that you would ordinarily expect from an almost three-year old.
He’s a better traveler than his motion sick momma that’s for sure!
The very biggest difference is the type of attention my children attract when we are out in public. My big kid has a great big personality that immediately draws people to interact with him. He’ll start a conversation in the form of a question with any stranger. And he’ll make people laugh, cause that’s what he does best. I have to stay on my toes managing the execution of his pretend play of defeating storm troopers in the middle of the grocery story. I’m constantly trying to reign in my oldest.
While I’m figuring the balance of when to reign in the oldest, I’m also mastering the art of advocating for my youngest. The type of attention Nathan is attracting in public is not the kind anyone wants. When we are outside of our normal public places like church and medical visits, I interpret people’s stares as people feeling sorry for him, for us, and feeling glad it’s not them whose life is affected by disability.
Reigning in the presence of one. Advocating for the presence of the other. I am the mom of two very different kids. Whether I’m parenting them separately or together, I’m learning how to fight for fun, and joy, in the midst of whatever our interaction is with the public. Friends have been asking me if we were able to have fun while we were in New York. Yes. That’s just what New York taught me. In spite of all the Nathan challenges I can still have fun being Nathan’s mom.
I just want to linger in these a little bit longer…
World’s best cuddle bug.
Best meal eaten right across the street from the Ronald McDonald House after a long day at the hospital. Notice the baby food mixed in with the fancy food.
Planes, taxis, and buses. We never took the subway, but I’m sure he would have done equally well.
Late morning breakfast in a diner. Not the world’s best coffee (cue Elf) but still.
Finally surrendered to sleep. Our flight out of Chicago was delayed over three hours due to mechanical problems. Nathan probably dealt better with it than his mom and dad.
One of my favorite photos. In the middle of a very long appointment, the doctor left the room and my husband sat down in his chair. He said, “I need to sit here for a minute. I feel more in control.” Obviously we weren’t.
The Lord upholds all who are falling and raises up all who are bowed down.” -Psalm 145:14
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!