My bones…my bones are all out of joint

imageMy bones…hmm..from the outside of me, they can’t truly be seen, but they are my framework, my solid, that which keeps me together, and without them I would surely be a squiggly mass of flesh and muscle writhing about on the floor like a poor misshapen snake like creature.  One never really thinks about ones’ bones, unless you sprain or break one, or they contract some type of disease which makes them ache.  They are vitally important to us  and yet I think we really do take for granted that which is unseen, that which is within.

i was going through some charts and looking for a specific phone number of a geneticist that I had been working with, and came across my daughters’ photocopied X-rays in the file.  I remember so well the day I was presented with each X-ray.  Immediate tears sprang to my eyes, and as the specific doctors droned on about what I was heart just ached…and as I heard the doctor say..”because of her ‘kypho scoliosis’, and 70% curve to her spine, she will continually have diminished capacity to her one lung.”  Wow….great, I thought, now she is going to have more trouble breathing…when is it enough..for real..when can I stop watching my dear one be afflicted with more challenges, in her already challenged existence?  Her diagnosis has recently been changed from “lissencephaly” and “microcephalic,” to that of ” unilateral focal polymicrogyria and microcephalic.” (well say that 10x quickly and people will think you are in fact having a seizure of sorts…). What this means is that it is rare, and that there was abnormal development of the brain before birth…( no really?), and that there are too many folds in her beautiful petite brain, and that they are unusually small.. The only possible cause(other than viral, or genetic,) could be because of a lack of oxygen to the fetus(intrauterine ischemia,) which has affected mainlyy the frontal lobe.  Apparently having a fully functional frontal lobe is quite crucial in maintaining a normal, and functional existence…oh the wonders of the human brain….such a mystery, but so incredibly complex, simple at the same time, and absolutely amazing!

so her back is now severely curved causing her discomfort, and both of her hips are out of their sockets..Yes..people they have found a new home somewhere in her delicate flesh, away from their proper home in their own hip socket.  The cause of this primarily can be said to be because her brain does not function correctly, and she is “non weight bearing,” so the socket which should be curved to keep the “ball” of the hip in its proper place, on hers, is well flat as a pancake, so the ball has searched out a better nesting place.  Incredibly, the doctors speculate that this doesn’t hurt her, but what do they know?..just kidding..a heck of a lot more than me..that’s for sure!  I’m certain that she has discomfort from time to time, thankfully not to where she is in complete agony, but enough so that I grind up an “alieve” and send it through her g-tube each morning just in case.  I reposition her often, and basically gage, by the look on her face what feels good and what does not.. A grimace, or a “I smell kitty pee face,” as I’ve coined it, means that does not feel good, but a sigh, a gentle smile, and I look of love and thankfulness for getting it right, means that the position is good for her.

Not to overwhelm you, however her other more recent ailment is that her eyelashes on her left bottom lid want to  protrude into her eye…this, I believe happens, because she wants to lay on her left side, because of her back issues, and her cheek pushes her eyelashes more and more into her eye.  Some mornings I go in, and she has a lot of goop in her eye, and it seems very hard for her to open.  When I help clean her eye, and she tentatively does open it, it’s usually very red and bloodshot…ow..I think…her doctor says that her eye is fine, and just gave me some ointment to help with the discharge…thanx..for nothing!… I appear to be at the beginning of a rant, so I shall have to reel myself in from going full throttle.

i was pondering my own bones, as I looked at hers, and while the memory of a recent fibula break is on my radar, I was, once again just awestruck at how my girl has so many bone issues, and brain issues going on in her little body, but she does not give up, give in, or voice a complaint, ( the latter mainly because she doesn’t speak,) and since I’m left to guess 100% of the time how she feels, I don’t think she complains…she is grateful..thankful…I can see it on her sweet face every time I perform these things for her.  She will beam up at me, and I tell you that smile” could launch a thousand ships.”  She is just so happy that I walked in, that I am tending to her needs, that I am constantly searching for ways to make her comfortable, her life enjoyable.  When she was diagnosed with her condition at 6 months of age my complete world fell apart, disintegrated into the void.  When I became somewhat coherent, and did the obvious crazed search through the Internet, the sentence that still haunts me, is that spoken from her primary care physician.  I had asked if she would function as a 9 year old, and be able to do limited things?  The doctor responded with, ” no, she will always be an infant, she will be grossly mentally challenged, and she will live a normal life span…”  Truly..there are no words, no response a parent can utter when hearing such devasting news. So I crumbled to the floor, the phone I had been holding,  dangled lifeless from my outstretched  hand, and I wailed…you know, the kind of gutteral wail that comes from a place deep within..and something surely died in me that day…… I can recall it with such clarity 17 years later, and I desperately don’t want to.  Your mind feels as if it has imploded, and your world becomes a little duller that day, and I believe it will never become whole again.  Your heart, which is just a mighty muscle becomes squeezed, and somewhat hardened that day, and your sense of trust decreases.  I had dreamed of having a daughter…someone to balance out our growing family.  We had two boys who were completely healthy, rambunctious, able and whole.  They were wonderful…. My dream had turned into a nightmare, and I had no clue how we were going to proceed with family life from this point.  Somehow I know instinctively that we would be embarking on ” the incredible journey,” that life as we knew it..carefree and easy, would never be for us again..something dies in you…so many many hopes…it is mind boggling to even properly explain the huge sense of loss.  In some ways I believe I started into “survival mode,” and I truly believe that I am still in it…I’m still looking after an infant, even though she is 5 feet tall and 87 pounds.  I don’t sleep well, and I think it’s because, as a young parent we need to rest while still being on full alert.  For me..this has never gone away…when I think of Bianca, I do believe that “she is fearfully and wonderfully made,” but I can’t deny that this verse haunts me to the depth of my being.  It hurts…I want her brain to work, I want her to be able to sit, crawl, turn over, sit on the damn toilet, and yes..oh sweet Jesus…please talk to me…selfishly, more than anything I want to hear her voice, hear her her say “Mommy,” and ” I love you.”(I hope she does.,) but this is not to be…I need to just be…be satisfied in the breathtaking moments, the glimpse of her precious self that she shows me…so often I know she has glimpse of what lies beyond this life..I can see it in her the way she looks beyond me, smiles, and has such a knowing and completely present look.  I believe she is comforted, held, by something that she sees, and it brings her joy, and rest.  I am so thankful for this, and so blessed to see this alternate spiritual reality that she is apart of.  Perhaps her maker has allowed her a glimpse of Himself, his radiance, and she is fully known during that time.  These thoughts comfort me, and as my dear friend Tammy said, “when I enter her room, I feel as if I’m on holy ground.”  Agreed I say….because the parts that lie within us, our structure, our being are holy and they are a temple…Bianca you are a beautiful, wounded, broken and precious temple…Let your light shine.

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