I feel as if I have been punched in the stomach. I can hardly breathe.
Most of our children with WS have health problems, ranging in severity from annoying to disabling. Their bodies are often stricken with ailments that afflict the elderly: Gastroesophageal reflux, hypertension, rectal prolapse, heart disease, skin disorders, joint problems, severe constipation, and hearing loss, just to name a few. Even Erik takes medication twice a day to keep the acid in his stomach from gurgling up his esophagus, which apparently has never worked the way it should and never will. His left leg swings inward when he walks, he must wear orthotics to walk correctly, and his muscles and joints are stiff. I can live with that.
Sometimes, though, medications and surgeries fail to automatically fix anything at all as we expect them to. There are moments when I find myself wanting to have a chat with whomever is in charge in the universe and then asking for his or her manager. There are experiences reported by the WS families I know that remind me that in the end I have no control over much of anything. Because of Erik's excellent health, I forget that sometimes. I administer his medicine, apply his skin cream, and soothe his anxiety, feeling as if there is nothing I can't fix or pay someone to fix that goes haywire in him. This morning I realize once again how extremely lucky I am to not be in a hospital room with my son due to a life-threatening illness. How imperative it is that I never take one moment with him for granted.
Last night we called the volunteer that assists Erik at church and expressed our desire to attend services this morning. I plan on sitting and tapping into the energy from the congregation around me. As much as I shrink from people, I am slowly realizing the value in drawing strength from them. As the music fills the room and conducts through every cell of my body like electricity, I am going to pray harder than I have ever prayed in my life.
In the meantime, as it seems as if the WS world is crashing down around many of us, I will light a candles to glow in the dimness of this wee hour of morning.
I will light one for Blake, who is lying in a hospital on a breathing tube fighting for his very life. His mother has been told he may have brain damage from this agonizing fight and that she may need to make some tough decisions soon.
I will light one for Ava Jewel, who is also in the middle of fighting for her life in a hospital bed under her amazing mother's watch.
I will light one for Abi, who has an upcoming surgery.
I will light one for Ava, who has just been released from the hospital and is recovering from a serious illness that threatened to shut down her organs and stole her appetite.
I will light one for beautiful Michaela, who has been discovered to have a tumor on her brain and other abnormalities on her recent MRI.
And I will light one for the rest of our children with WS who fight what comes with anxiety, autism, and the little bodies and brains that sometimes don't work exactly they way they should. For their parents and the rest of their families. For strength. For many more moments of continued happiness with these incredible children, knowing these moments are miracles and were never guaranteed to be ours for any length of time to begin with. I have never been so incredibly sad and so deeply thankful at the same time.
I'm seeing the big picture now for the very first time.