Crushing Under the Weight of Your Child's Suffering
The new year arrived and her whole world came crashing down. With complex kids it can be really challenging to detect what’s wrong sometimes. Add in the non-verbal component and it can feel like a really daunting task. Hour after hour our daughter’s body began to thrash. Hours turned into days and the calm pauses were getting to be so short. When I ran out of all ideas to try sometimes there was nothing left but to join her in the crying.
As a mom of a medically complex child you often feel the weight of the world in your shoulders. All of the advocating, coordinating and even caregiving can become non-stop. None of that tears out your heart though as having to watch the suffering.
I’ve learned a few things that help us cope in those intense seasons.
LEAN INTO YOUR TEAM. For us it was first adjusting our team by removing a provider that refused to listen and assign another to take over. Once we had the right team in place for our child we could lean into their wisdom, experience, and help. Adding palliative care to our team has also made all the difference. Having a close family member or friend that can help shoulder the load is really important as well. If someone offers to help, let them know what would be helpful. Having someone willing to drop by the store for a med or grocery run is an enormous help when you can’t leave the house. TAKE BREAK MOMENTS. It’s critical to step away to catch your breath even if that can only be for five minutes at a time. Find someone that can watch over your child and keep them safe and then go far enough away to get a break from the sound of it all. Surgeons go home at night after the end of a long day. You, dear parent, do not ever hardly step away. Find ways to get those refueling moments. Go get a bath, take a brisk walk, hide in a closet and cry … whatever it takes. The constant-ness of it all can be so very suffocating. EMBRACE THE JOY MOMENTS. Now and then our daughter would have moments that the misery subsided a bit long enough for her to find her smile again. I would snap a picture to record the moment. We might have a day mostly of misery, but grabbing onto that moment helped me remember she was still in there and gave me hope that one day things would be better. Notice the beautiful sunset. Allow yourself a moment to feel the gentle breeze on your face. Savor the smell and taste of a cup of freshly brewed coffee. Receive every bit of reprieve that these moments offer to us. Even in the darkest seasons, there is still beauty all around. Sometimes we just have to really look for it.
Several adjustments to our daughter’s daily cares and a hip surgery later, we began facing better days. I’ll never forget standing over her thrashing body in her bed, having seen the last of her quality of life drift away, and feeling so crushed and defeated. I’m her mom. I’m supposed to fix what ails her. Sometimes on this medically complex journey there just aren’t easy fixes. Some seasons will require me just to be there. Sitting with the suffering is one of the hardest things I’ve had to learn to do. Yet what a privilege. I wouldn’t want to be any other place than by her side. While there I've learned more about the One who promises to stay by our side. He is close to the broken-hearted and He has a purpose for where He's placed us.
PSALM 34:18 “The LORD is near to the brokenhearted, and saves the crushed in spirit.”