Today Little Red will be having an MRI that requires a general anesthetic. Her whole body and brain is being scanned, to help ascertain the severity of her scoliosis but also to potentially rule in or rule out Cerebral Palsy and if there are any other issues. It’s the first official rung on the ladder to help sort out her spine and with that comes a minute feeling of relief. The other side of the coin is complete and utter dread mixed with anxiety and an overall sense of sadness.
The MRI hasn’t been the first step on the investigative trail. Before it came various ultrasounds, X-Rays and other pediatric tests. Benefit versus risk has been weighed up so it is very much something that needs to happen because we’ve exhausted everything else.
The thing Hubby and I are both most nervous about is obviously the general. We’re fortunate to have an anesthetist in the family that we could call and ask questions, and he really did give us peace of mind. But still, I think that’s the real reason behind why I’ve had a knot in my stomach lately.
THE SPINAL BIT
Excited isn’t the right word to use. I can’t help feeling a certain level of consolation that from this thing we’d ideally like not to be happening comes the opportunity for medical treatment that will make a huge difference to our daughter.
However, that comfort is short-lived when I then flash forward to meeting the spinal specialist and the lengthy journey that is ahead of us. I can’t help but think that the MRI will seem like child’s play if spinal surgery is in the near future. Of course we’re jumping ahead a bit. You never know, Little Red could just be in a brace for a period of time but we know that due to her actual back bones being malformed surgery will be a must at some point.
THE RARE STUFF
We’ve been at the point for a while now where rare conditions have been suggested, investigated and ruled out. This is really frightening to me. The thought of dealing with something, anything, is scary, but more so when not a lot is known about it. Of course we’re still holding on to the simple hope that our baby bear will be able to live a rich, full and happy life. I mean, isn’t that all anyone wants for their child?
For the most part I’m 110% confident that she will be absolutely bloody fine, but then some days a horrible doubt niggles and the anxiety creeps in. Cognitively she seems perfectly okay. Then I read about a syndrome where behaviours don’t become apparent until early childhood and I can’t help but wonder. Mentally, doing that is not a great place to be in.
Hubby and I had been doing our own research but I’ve stopped doing it now. I found I would be looking at her for signs, seeing if any of her beautiful facial features matched some off the beaten track syndrome. I started down a path I didn’t feel comfortable, one where I needed to stop and just enjoy her again instead of analyzing every tiny thing she did.
WHAT’S THE PLAN, MAM?
Hubby has to do a kind of fox, chicken, grain round trip with everyone in order for us to get to the hospital in time and drop Little Man off at daycare. But, I hope for us to be home for early afternoon. After all, Little Red is not actually having a procedure done so after observations we should be good to go. I can’t imagine leaving her and I think waiting is going to be the hardest thing for me. I just want to hold her in my arms and to know she is okay. As I write this I feel quite queasy, so I’m also hopeful that my stomach settles and calm returns to my bones.
Most of all I wish for us to just have a simple hour or so in the garden later today, to help her on the slide and talk to her about our plants. I want to encourage, laugh and love with her. It’s all I’ve ever wanted.