I don’t always know what I’m going to write. I’ve said that before. Today, I suppose I need to write a follow up to my prior post. So many reached out to make sure I’m OK. Yes, I’m OK. Someone said, “You must be in a lot of pain.” No. Not really. It’s more an awareness of reality. It feels a little confusing. I wouldn’t describe it as pain. My favorite came from a text I got where the person thanked me. She wrote, “You are an incredibly brave momma. You really have no idea the type of role model you are to share your soul in such a raw way.”
That’s why I did it. That’s exactly why I pushed through the difficulty of the confession because I think people need to read the rawness of what it’s like to have a child with severe disabilities. What it’s like to hope beyond hope and then to realize you’re not even asking for the things you really hope in the deepest part of your soul will happen. I want people to know the good and the difficult. And trust me, there are extremes of both!
So allow me “part 2” of that post. The why.
When I realized I wasn’t praying for Catherine, you have to understand what I meant by that. I actually pray with her every night – well, unless she’s asleep when I get home. Sometimes, I even go in and pray with her while she sleeps though. We thank God for five things. This has been my practice since she was born and I’m eternally grateful to the friend who suggested the idea. One day, the best she and I could come up with on our thankful list was that Catherine was warm and dry in her incubator in the NICU on a cold, snowy, gross day shortly after she was born. So, I still do that. And I pray for God’s blessings on her. And I pray for her general well-being. I had stopped praying for anything specific though. And that’s the part that hit me hard.
I want more than anything for her to be able to communicate in some way that others will understand. I want her relatives to have a relationship with her and that seems to require some form of communication. I wasn’t asking God for that because I was – no scratch that – I AM afraid that if it doesn’t happen, it will mean I don’t have enough faith. Somehow I think I’ve twisted things.
God says, “If you have faith as a mustard seed… nothing will be impossible.” If I pray for Catherine to communicate and she doesn’t, then I must not have that much faith. I think about the people who came to see Jesus from all over the holy land believing if they only touched his garments, they’d be healed of their afflictions. There are lots of accounts of healing blind people, dumb (unable to talk) people, people with seizures. Catherine has all of these things. If Jesus were walking around Maple Lawn, would I go touch him on the pant leg (I don’t think he’d be wearing robes!) with the belief he’d heal Catherine?
If I’m honest, I’m not sure I would. First, I wouldn’t think I was worthy. Why heal my daughter rather than someone else’s? Plus, there is a big part of me that thinks I’ve been given Catherine’s life to shepherd so others have a beacon of hope and inspiration – that kind of makes this part of what I’m going through that much tougher. Second, if I touched him and she wasn’t healed, would that say something about my faith? That it wasn’t enough. I’ve always believed God graced me with a good amount of faith. It’s a big reason I’m able to get through many of the challenges we face. If my faith got rocked by asking and not receiving, I really don’t think I could recover from that.
Sure, I know the answer to my prayer might be “No.” And maybe I’m not praying right. I’ve certainly not been fasting and that’s part of this story. I’m not sure if I fast that represents any difference in my faith though. So, I’ve not found a story where the faith was there and the answer was No. Not in the Gospels anyway. Maybe one of you knows a time when there was enough faith and the answer was no. I’d like to read that one.