RicRac

When I think of my emotional life lately, I think of ric-rac. You know, the scallop-edged ribbon that crafty people use? It's just that within a week, or even a day, I consistently feel very good, then very bad, then very good, then very bad...

Sunday. 7:55 pm.  Keira rolled over. Un. Be. Lievable. Wow. I DID NOT expect that so soon. Happy as can be and so proud.

Monday. Talking desperately to my husband about being overwhelmed and needing help. All the time. It's been an ongoing theme in my psyche as evidenced by my frequent dreams in which I am disappointing my friends or vice versa. Keira is making me rethink my social life and in deeper ways than being open with my story.

Tuesday. Day one of Keira's reflux medicine. What in the world? First day in weeks that she's laid on the mat, alone, playing for 10 minutes at a time! She's looking around, engaging, and showing us all she's got. Jeff says,  "I guess babies don't like to feel like they have to throw up all the time."

Wednesday. Saw the physical therapist for some "woo woo" magical head massage therapy. Pulled my dad out of a meeting to help me trek all the way to Eagle. Is it worth it?

Today. NICU follow up clinic. K cried all the way there and all the way back. It was so fun to see our favorite doctors and a couple of our favorite nurses. They confirmed "global developmental delay" and placed her at a 2-3 month level. They prepped us for some possible symptoms to come, as are frequent in babies with neurological problems: seizures, muscle stiffness (requiring, get this: Botox), and sleeplessness. I think I think it was fun to go to this appointment. I also think I think that though the vocabulary we use in these settings has gotten to be familiar, it probably still wears on me emotionally more than I readily admit.

Today. Took Keira, finally, to get her bizillion dollar Synergist injection.

Today. Starting to plan Ronin's 5th birthday party. One of my favorite mom things to do. Starting to wonder if this was a bad idea, though.

Still today. I sweet friend gave me an article to read called, "God, Why Don't You Heal?" I feel that I should comment...

Peoples' reactions when they hear about our situation with Keira run the full spectrum from, "Why did this have to happen to you? It's so unfair" and "I am praying for Keira's full healing" to "What a blessing this is." "She is a special gift."

As you may have heard me say before, I haven't prayed for healing. In part, this is because I believe God may not choose to "heal" her (As in making her have an average IQ, making her walk and speak normally, making sure she sees and hears, and making her have social relationships that most would consider to be adaptive). He may not grant her all of those things and I need to be ready for that. I can't expect God to "heal" her and therefore not completely love and accept who she is right now.

Beyond that, I don't think that Keira is necessarily broken. I think that there is a purpose for her being created just how she is and I have already seen some amazing things in my life and in my community because she has been a part of it. If we embrace the opportunity, people like Keira help us to see beyond ourselves. They show us that what is "normal" so often is a socially constructed concept in the midst of our rich, entitled, American ways of thinking. No offense. People like Keira show us how little control we really have and that there is beauty in that. Perhaps asking for healing, rather than being a show of faith, is actually an affront to His creation.

I've never really felt (so far, at least) like God "did this to me" or even that he "chose me to be her mother" or that Keira is a gift  that only I am so lucky to receive. I never subscribed to the health and wealth gospel. The Prayer of Jaybez makes me want to vomit. No offense. I never believed that God promised our lives would be easy. Or that believing in Him gave us any sort of insurance against....well, anything. I guess that's why I realized very early what it took the author of the article a couple of years to figure out: There's nothing wrong with my daughter, really. But there is something wrong with me. I am broken. I needed to come to grips with my own limitations as well as my own strength.  Though I don't expect Keira to be healed, I think that her life itself brings healing...by allowing her family and others to participate in her life and in our family and seeing that there is joy in spite of the difficulty.

These beliefs do not in any way mean that life is easy or that I don't worry about Keira or that I don't feel sorry for myself. It doesn't mean that I'm not going to pursue every therapy I can get my hands on to make sure that she can be the best she can be. But in the end, I do trust that it's all going to be okay. And yes, reconciling all of that can seem contradictory and confusing. It's beyond my theological expertise to be able to articulate it any better than that. But, you know, you could always get Jeff talking about disability theology if you really wanted to duke it out...