There is always an upside.
I’m thankful for this because Nathan’s therapy is torture.
Actually it’s not therapy that’s torture, but the drive to the hospital that’s wearing me down. I’m exploring different options but right now we are committed to driving to the Dell Rehab Center twice a week, sometimes more if Nathan also has a doctor’s appointment. The biggest thing keeping us there is he’s making progress. So, I’m plowing ahead and expending lots of energy doing so.
Lately, I’m noticing that, as my energy is less, Mac’s is more. He needs to exert lots of it around bedtime because he’s spent so much time in the car commuting or sitting on an iPad in a therapy room patiently waiting on his brother. I need to run him, bike him, basically make everything a game in order to get as much pent-up energy out as possible.
I’m trying to get creative with whatever reserves I have leftover. It makes me feel guilty, like once again I’m copping out and not fully taking advantage of all the fun fall things I can do with my kids.
A few weeks ago I told them that we were going on an adventure to a kinda, sorta pumpkin patch. We packed up the double stroller and walked to the HEB by our house (both boys in their pjs). I let Mac intermittently ride in the stroller and run ahead of us on the way there. Once there, we pretended it was a pumpkin patch and picked out the perfect pumpkins for he and brother. His was big and brother’s was small, of course. We took lots of pictures in the super cute HEB hay wagon. He’s so on to me though because he said, “Is this really a pumpkin patch Mommy or is it a grocery store?” Busted. But oh well, cause we’re just not able to drive to a pumpkin patch this year.
We have a thing for the HEB by our house. A couple of weekends ago we biked there as a family to get some groceries and lunch. That’s what my dad calls, “Killing two birds with one stone.” Nathan got to ride in the bike trailer for the very first time and Mac peddled the whole way there and back. Well, almost the whole way back. There was a lot of uphill, and therefore a lot of me getting off my bike to push him. Poor Nathan had a hard time holding his head up the whole way and my husband had to carry him back home along with his own bike and the trailer. But, we did a family bike ride.
By far the biggest energy burner has ironically come as a result of my energy drainer. It’s all of the fun parks, trails, waterfalls, and restaurants near the hospital. Plus, there’s a nearby Starbucks for me and the new Thinkery museum for Mac. Depending on the timing of a visit I try to throw in something fun for big brother. On some days we just drop Nathan off and then head out on an adventure just the two of us. The Thinkery is an extra special treat for him. And the upside, if I go in the afternoons, it’s especially quiet and I can sit on a bench with Nathan and watch while he freely explores the various exhibits.
So like one of my girlfriends tells me, “there is always an upside.” This is coming from a friend who knows downsides. Her daughter was born with Down Syndrome days after Mac, and she was diagnosed with breast cancer months after Nathan was born. If she’s been able to find the upsides to the downsides then I’m sure I can too.
Truly I think the upsides come in the form of the blessings that God gives us day-by-day. It’s in the little things like meeting Daddy for dinner at Smashburger because he just finished up with his patients and we’d rather wait and eat with him then fight the rush hour traffic driving home. Or, watching Mac see a helicopter take off from the helipad at the hospital in complete awe that it can lift into the air. Even a walk to a nearby park and watching big kid pretend the playscape is a castle. And I wish you could see how Nathan cuddles up in my lap so patiently and quietly while Mac spends an hour or more playing with the pretend food or musical instruments at the Thinkery. Each of these is a unique gift even though it’s exhausting to drive to therapy.
So this fall we are grabbing hold of the upsides for dear life. Realizing that the downsides of therapy and doctor visits provides some pretty great memory making. As much as I dislike going down to therapy, I really am enjoying these special moments with my boys. It’s all so fleeting and pretty soon the big kid will be an even bigger kid. I’m pretty sure that it’s only cool to have your mom come to eat lunch with you at school on your birthday for a few years. And then I’ll be looking for new upsides to the downsides.
Yet you do not know what your life will be like tomorrow. You are just a vapor that appears for a little while and then vanishes away.” – James 4:14
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!