As the parent of a medically-complicated child, or a child with greater needs than most, we go through seasons where things are intense. As our capacity to handle unexpected and complicated situations increases, and as our adrenaline calms down and we adjust to life, or as our child’s medical needs decrease, we can find ourselves still in “fight or flight” mode. It can be difficult to recognize that the fury of the violent storm has calmed and we can look up from our intense focus.
At the beginning of this summer, my two-year old son with Down syndrome vomited countless times a day, and we were in survival mode. He was 100% tube-fed and it got to the point where it was very difficult to leave the house. In desperation, we turned to alternative medicine and Redmond’s life was saved. Again. The crisis passed and Redmond spent June, July, and August growing and developing in leaps and bounds. No longer miserably sick, he started walking, talking, and… EATING!
As I reflect back upon our summer, I want to encourage other parents that even when tough times come, dawn will break and the sunshine will burst upon the scene. When that day comes, lift up your face and soak it in. Here’s my story…
When my daughter started kindergarten last year, I was a wreck. I’d missed so much time with her because her medically-complicated brother required my attention. I wasn’t ready to launch her out into the world yet. This year, Redmond is almost 2 ½ and he’s healthy! We are rejoicing in God’s goodness.
In spite of everything, these two adore one another and have so much fun together.
So, the kids and I have spent the last three months making up for lost time. We’ve gone down the water slide at the community pool too many times to count. We visited the zoo, the science center, the wildlife park, the living history museum, splash pads, and movie theaters. We’ve gone fishing, shopping, camping, and had play dates. We’ve visited family in Tennessee and Virginia, swam at the lake with friends, built sand castles, roasted marshmallows and eaten s’mores, ridden four-wheelers, spent the day at a water park, and played with cousins. The kids participated in VBS twice, took gymnastics and Ninja classes, and did a week-long safety program. They played t-ball, ate too much ice cream, and spent lots of time with me – cuddling, reading, and chasing each other around the house. I’ve also been cooking with them, and they’ve helped me with landscaping and the garden.
I cooked! I made delicious things. Not Whole30…
Hot Springs in Virginia
I’m not writing all that to brag about what a great mom I am.
I feel awesome for doing it, but I did it because I was able to. In 2017 and 2018, I couldn’t. My attention was focused on keeping a medically-complicated baby alive and keeping my own head above water.
Even this summer, I didn’t plan to do all the fun things. I just chose to look the kids in the eyes each morning. The light that once shone so brightly there was starting to dim. To get that sparkle back, they needed my attention and focus.
Every day I thought I’d work, but most days I didn’t. Instead, I fed their souls. They didn’t need a fancy vacation or all those day trips to get the sparkle back, but they needed their mom to be able to play with them, show them that she can still do a back flip in the pool, and laugh together.
Redmond was born when they were just two and four years old, so they don’t remember much about me before him. Their first memories may be from the NICU, watching their mommy cry, seeing panic and fear as they’re screamed at not to touch the baby with their snot-covered hands.
Before this summer, they’d basically known me as a caregiver for their baby brother, trying to keep my head above water while learning and managing massive medical needs and unknown health concerns. Talk about heart-breaking…
One zoo trip included Grandparents, Cousins, and our Babysitter.
Today, as my oldest goes off to first grade and my son gets ready to start kindergarten, I feel a sense of satisfaction. I look forward to watching them grow and learn, helping them with their homework, and volunteering in their classrooms. I’m happy that they’ve gotten to know their mom without the stress and fear that’s overshadowed so much of their lives. I’m looking forward to being involved in their lives like I’ve always wanted to be. Thank God that His mercies are new every morning. Great is His faithfulness.
Running to the bus to catch up with her friends.
First Day of First Grade
If that’s you right now, if things have finally started to calm down and you look around and realize that you have time to take a shower, let me encourage you to have a spontaneous dance party in the kitchen with your kids. Play a game with them. Don’t jump up the minute your child with greater needs starts to cry, but finish what you’re doing and let the other kids know how much they matter too. Plant some flowers. Buy a good tent and go camping in the back yard. Read “Little House on the Prairie” to your kids while you snuggle before bed.
Mamas, let’s make sure we don’t forget our other kids as we care for the ones who need our attention more. There are seasons when we can’t do much but focus on the one with the greatest needs, but when the fury of the storm calms, even if all you can do is take a long nap because you haven’t slept in so long – pull those other kids in with you and hold them tight while you all get some rest. Then get up and wash your face, go for a walk, and let the fresh air restore your weary soul.
Thanks for reading all the way the the end. For more photos of our fun summer, check out my Instagram account – https://www.instagram.com/kimberly.wyse/ . Now, I’m going to take a nice, long bath with absolutely zero guilt. (Eh, at least not much guilt.)
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