Before my son was born and throughout his short life, I would often search for inspiring stories of people with only one arm who conquered a sport or children with visual impairment who still made their dreams come true. I wanted my son to be the inspirational NICU story, who beat all the odds, and stands thriving today. But that’s not Joshua’s story. It’s not my friend Laura’s story who has two children with Batten’s disease, an always terminal illness. It’s not my friend Kristy’s story whose daughter Abby suffered a stroke in utero, and lives with brain damage, blindness and a myriad of health problems. It’s not my friend Heidi’s story whose baby Elliot died after five days in the NICU.
This is for you, mom’s and dad’s, of children who are warriors, who’ve had to suffer the unimaginable. The unsung heroes. The ones who are up all night dealing with emotional outbursts or a beeping oxygen monitor. The ones who tirelessly fight everyday for their children, enduring countless doctor’s appointments and surgeries and therapies, knowing that the end of this tunnel will just bring a funeral. An empty hole in their heart.
In your heartache, you may not be able to offer people the traditional happy ending, but in you I still see HOPE.
HOPE that despite the unthinkable, you haven’t given up. Hope that in Christ, our children will be healed and we will have a happy ending one day.
I still see LOVE. A love so deep, you will go through anything to give your child the best life they can live, no matter how much sacrifice and suffering it brings to you. People see your love as extraordinary, but this is your baby, your little boy, your little girl, your love at first sight, how could you not love?
I am still INSPIRED by you. It’s not the inspiring story that graces news headlines, but it’s inspiration that it’s possible to keep your faith in God NO MATTER WHAT. I’m inspired by your tenacity to get the best treatments for your child, and your courage in making decisions no parent should ever have to make. I’m inspired by your perseverance every single day as you watch your child lose abilities instead of gain them.
I only got a small taste of what some parents of children with special needs go through. The constant feeling of being on the edge of your seat. The endless doctor consultations and therapies and bleeping alarms. The feeling of not knowing if you can physically handle the news the doctor is about to tell you. The heartache of seeing your child suffer and being completely unable to help them. The worry that other children may make your child’s life harder by teasing and bullying. This is to you, my friends. Who have endured years of agonizing decisions, of just taking it a day at a time, and years of wishing your child didn’t have to endure this fate. YOU ARE AN INSPIRATION. In the words of my friend Kristy, “It’s going to be ok, even if it’s not ok.” Jesus gives us that hope, that in the end, we WILL have healing, our children WILL be whole and that the best TRULY is, yet to come.