“For I am the Lord your God who takes hold of your right hand and says to you, Do not fear; I will help you.” – Isaiah 41:13
Just got back from Children’s where we were scheduled to meet with rehab and then orthodics for Eliza’s torticollis (twisted neck) and plagiocephaly (flat head). I had come to terms with getting a helmet after the last PWS clinic but was still dreading the effects I knew it would have on her strength and development. She only started holding her head up in December, and we’re still working so hard on tone and posture that I hated the thought of putting another obstacle in her way. But there we were…and to be honest, it was okay. I had come to peace with the decision and was ready to just get it done. But true to form, this visit brought new surprises and a host of new challenges.
I was sitting in the exam room waiting to get the green light to go when a room full of doctors and nurses came in. I was instantly transported to that first terrifying moment after Eliza was born…seeing the nurse practitioner walk towards the room and knowing without a shadow of a doubt that something was wrong. This time, they came with an X-ray that showed both of Eliza’s hips were displaced and one was completely out of the socket. She would need to go under general anesthesia to see if it could be re-set without a major surgery, and while it was not emergent, it was urgent. When could we come in?
The rest is a haze…the tissues being passed to me by an orthopedic resident one year ahead of Derrick in the same program, the nurse typing notes into the computer as we spoke, the talk of casts and splints and further surgeries. We had come for a helmet fitting but were leaving with fresh tears and new, bigger hurdles. I hate this for her! I hate that just as she’s started to kick and roll, we are putting her in casting from head to toe and asking her to keep trying. I’m tired of having to try so hard…I just want one thing to go easily, to be better than expected.
And I am so scared. I’m scared of her going under and scared of it not working. I’m scared that they won’t be able to get a good stick for her IV…scared that she will be in pain. I’m scared of the moment I have to say goodbye and leave her in the hands of a nurse who will wheel her tiny body down to an OR that I can’t follow her into.
But I can’t control any of that. I can’t change it either. All I can do is remind myself that she’s already in the most capable hands…the ones that created her…and hope and pray that it will all be okay, trusting that in so many big ways…the ones that really matter, it already is.