It’s like going back in time and then propelling yourself at warp speed to the present and the only way to stop is to slam into the wall of reality. When does this end? How can I get this gut wrenching gnawing feeling out of my mind and body and send its lifeless ashes down a drain never to be seen or heard from again?
The dichotomy of looking at this sweet, beautiful, innocent face and knowing that deep inside her genetic makeup is a rare gene that God decided she needed to have. The truth about what was really going on with her body was lurking in the dark, waiting to be revealed. It was there all along, and now it is here for all of us to live with, all of us to figure out what to do with it.
I feel like I have been hit in the heart with a 1000 lb mortar. She doesn’t know, she doesn’t have a clue what we just found out, but the rest of the world does. I want to live in her world because she puts her dolls to sleep every day, tucks them in, lines up their walkers, wheelchairs and straightens their AFO’s. All of her dolls have medical issues; all of them are getting better under her care. She is so proud of them, treats each of them as if they were a precious human life. They all have names, they all go to school, and they all have a life story. They are all happy.
I wish it could be that easy. I wish I didn’t have a million questions swirling around in my head every day. Every morning when I wake her up, I remind myself to put on a smile, let her know how much she is loved and kiss those warm sweet cheeks good morning while her best friend, her puppy kisses her on the lips. She wakes up with a smile on her face and greets the day with zest, wonderment and a love for life. I take her inside of a loving a warm school, she finds her favorite teacher and toddles up beside her as she parks her walker next to the table. I tell her to have a great day, kiss her on the mouth and tell her I love her. Then I drive home and deal with the hole in my heart and the endless, swirling emotions that are inside of me. Some days I can move through as I used to do, some days I cannot. Showering and make up are accomplishments on some days and forcing me to focus on my other responsibilities has become a full time job.
I’m learning to live with POLR3B leukodystrophy, just like I learned to live with her other disabilities. Although I think I finally learned to accept and live with them about a year ago. I don’t really notice the stares from strangers anymore, I go ballistic if able bodied people park in the handicap zones and I try and keep the rage and anger and sadness and uncertainty contained. Therapists call it “compartmentalizing”; that is locking certain feelings in a box and controlling when they come out. I’ve done it before; I guess I can do it again.
I don’t want to have any more Déjà vu moments. I don’t want to relive the feelings of waiting for outcomes and phone calls. I just want someone to tell me how to live with this and when this anger and fear and sadness will go away.
I know it will in time, or at least I hope it does. I asked for answers and now I have more questions. I’m not sure how to do this, this motherhood thing with this monster lurking in the closet. Will she regress? How much? To what degree? Or is all of the worrying for naught? If I don’t think about it, am I ignoring it, if I think about it, am I obsessing about it?
Everything else in live now seems so trivial, I have become temporarily apathetic to others lives and their problems. This has changed everything and I hate not knowing what to do with it. In 4.5 hours I will be standing in the hallway of school. She will come rolling off of the elevator with her bright pink coat on, her little sock hat and mittens. She will squeal with delight when she sees me and will give me a report on her day. We will leave together and she will have that same big, bright smile on her face and we will talk about her day as we go home. I guess if this monster living inside of her has a good side, it may be that she will stay in this perpetual state of happiness, lovingness and wanting to be with me.
I’ve made a pact with God to stop with the diagnoses, my emotional plate is full and my soul is drained. In the meantime, life will go on, time will not stop; que sera, sera, what will be, will be.
February 19, 2014