“Something you may not know about parents of children with extraordinary needs is we carry a heavy load. Our bags and purses are full. We have to carry formula, syringes, medication, diapers, emergency protocols, datebooks, diapers and wipes, extra clothes, medical supplies, and more. I know, at any given time, I can fish around my backpack and find an extra g-tube button, water flush, and emergency seizure medication. I can also locate some hand sanitizer or skin cream if necessary.
Not only are our bags full, but our car is full too. We keep extra supplies along with our child’s wheels in the trunk of the car. We have toys, books, and other ‘just in case’ items strewn about our cars. I’ve learned my lesson and always keep a small amount of cash in the glove compartment in the event I forget my wallet, and have to resort to the embarrassment of paying for parking in all coins after an appointment.
We have to carry a lot. It’s never easy to leave the house. But what’s even harder is going to bed and unloading our shoulders.
First, we have to take off the worry. Did I make the right decision? Did I do enough today? Did I do too much? Did I spend enough time working on his strength or his fine motor or his communication? Did I spend enough time just being ‘mom‘ instead of a nurse or therapist? Am I honoring his wants and needs? Am I doing this right? The worries take a while to shake off.
Then there’s the fear. What if? What if he’s coming down with a cold? Should I have taken him to the busy fair or park or museum where the germs are everywhere? Will I regret the choices I made today? What if he never says a single word or walks? Or much worse, what if we lose him? The fears are really hard to unload.
Let’s not forget grief and sadness. Grief of seeing other children doing the things you wish your child was able to do. Grief of knowing your life is not what you imagined. The sadness of watching your child struggle daily to do a simple task or activity. Sadness knowing there are countless things your child will not do in life. Countless small milestones most parents take for granted. Somedays, sadness doesn’t like to come off, either.
There’s more, depending on the day. Jealousy, anger, frustration, and tremendous loneliness. Unloading the things we carry can be difficult. And sometimes we carry it around so long it just becomes part of who we are. There are extras we carry, too. These are the most important, the ones I try to load up on when I wake.
Every morning, I walk to our son’s room to pick up his 40-pound body and carry him downstairs, and with each step, I can feel it. As I make my way down the hall and down the stairs, I start carrying more than just him. He grins at me as though this is the best part of his day. He wavers and wiggles around, beyond happy to see me. Not only am I carrying the weight of his body, but I start to carry more.
I carry gratitude. I can feel it in my bones. I am beyond grateful for the perspective I have gained because of him. I am grateful he is mine. And every morning I am grateful he’s alive. I hold on tightly to joy. With him, finding joy is easy. I can catch a glimpse of his face and it brings a smile to mine. Every accomplishment is because he works. Tirelessly. Nothing comes easy for him, every little thing is cause for celebration. I love deeper than I ever thought possible.
I am forever proud of who he is and who he shaped me to be. Witnessing his sibling relationships and watching his ability to teach life lessons without a single word is amazing. He is amazing. I cling to hope. I’m not sure where I would be without it.
We carry a very heavy load. Yes, there’s a lot we’d like to unload as parents of children with special needs, and quite a bit of it is extremely hard to release. But there are plenty of beautiful extras we gladly carry.”
This story was submitted to Love What Matters by Melissa Schlemmer of Forest Lake, Minnesota. You can follow their journey on Facebook and Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more stories from Melissa here:
Give other moms strength and courage. SHARE this story on Facebook.