Afraid but Not Alone

“He is love itself, grace embodied, holding the fullness of who we are – strong, weak, good, bad, wild, fearful, brave, silliy – in His hands.  He can be trusted with every part of it, the silly and the enormous.” – Shauna Niequist

Today is Eliza’s follow-up with the orthopedic surgeon…the day we will find out whether her hips have continued to regress and whether we will be faced with another surgery and another spica cast. As much as I try to let the future unfold as it will without imagining all the possible scenarios, I just can’t seem to do that today. I am already sick over the thought of anesthesia and its many complications for Eliza and heartbroken for the moment she would wake up to find herself trapped in what is essentially a full-body cast.  I’m thinking about how we’ll manage a wheelchair in our car and what this will mean for her gross motor skills, for her potty training, for her friendships, and for her independence.  She was a baby the last time we were faced with this.  She wasn’t walking or talking yet.  She wasn’t displaying obsessive compulsive behaviors that would be exaggerated by such a huge loss of control in her body.  And it was still crazy hard.  So I can’t imagine what this next round of surgeries and casts would be like, and yet it’s all I can imagine.

I feel heavy with fear and wound up in my worry.  I don’t want to get bad news.  I don’t feel capable of looking on the bright side if we do.  I moved through that journey already.  It was brutal and beautiful and full of lessons, but I don’t want to learn them again.  I don’t want to find beauty in the pain.  I don’t even know for sure what the doctor will say, but I already think it’s unfair. PWS is unfair.

I’m sorry if this feels more like a vent than an uplifting post, but it is my truth today.  I used to think that I needed to look only at the positive…that if I could just show how great Eliza was doing at this or that, the hard parts would fade into the background.  But the truth is, they never really faded.  And what’s more, they don’t diminish the good in the least.  They are both there.  Both valid.  So today, I’m going to allow myself this fear and this sadness, trusting that God is okay sitting with me here too…that He can hold the enormity of it in His hands, and that He can hold us there too.