almost two weeks ago our pediatrician handed me the preliminary results from lucia’s muscle biopsy. the report read that lucia’s biopsy is “suggestive of mitochondrial dysfunction”. i burst into gushing, sloppy tears. you see, my heart has been tightrope-walking for the past 11 months. trying hard (understatement) to maintain itself on a line of composure and balance. it’s not been easy when every test, every waiting period and every result ringing in from a doctor’s office pushes and shoves my frail heart from the side to side – from hopelessness to pure bliss. its attempts to not step(or jump) off this line have often failed me miserably. sometimes my heart allows me sing and dance my way through the day – imagining that all is right with lucia – that she – in the end will be just fine. other times – it has forced me to kneel in my closet and sob. i hold my hand to my chest to help keep my lungs from failing…the very next breath seemingly impossible. and the questions come all at once. will she ever run? will she ever dance? will she get to fall in love? will it get harder than this? will she suffer? will i be strong enough for her? and then all i can do is look to heaven and give out a silent scream of “WHY?” but, in God’s mercy, the sun once again rises and once again God lifts my heart up to renew its commitment to stay on the line.
this limbo – this unknown – is a lonely place to be. something is not right with our little girl’s health but no one knows exactly what that is or just how mild or severe it will be. there are no support groups for the undiagnosed. there are no walks. no runs. people don’t wear any ribbons. and, in all truth, people don’t understand just how heavy the weight of this “nothingness” can be.
the weight of it, in fact, felt unbearable when i read and reread the results of the biopsy. i tried to convince myself that i was misreading; that in actuality they said “your little girl is in perfect health.” but as i squinted and desperately tried to see past the blurriness of my tears – the words didn’t change – they were hard. ugly. cold. they elbowed me off the line.
the doctor patted me on the back and reminded me that these results were just preliminary. that, really, they didn’t mean much without the other tests we were waiting on.
so why am i concerned? why can’t i just brush off those words as if the pages had been blank? well, because mitochondrial disease is serious. and by serious i mean it would be like saying the biopsy is “suggestive of an incurable cancer.” not something i can easily brush off – not about my daughter.
on a long phone call with our geneticist who recieved more results that day – she explained that lucia’s results are not indicative of “textbook” mitochondrial disease, but they do not rule out the possibility that she may have it. this could also be part of her chromosome deletion causing metabolic problems. or it could be both – symptoms from her deletion as well as mitochondrial disease. either way, the results show some metablic dysfunction. we have gotten to the point that is beyond our geneticist’s scope of knowledge and she is referring us to a specialist in austin to see if he can further clarify or do further testing to obtain a more clear diagnosis.
lucia has an MRI scheduled for nov. 1st. she will have to be put under general anesthesia for this so please once again keep her in your prayers. this MRI may help us get closer to a diagnosis.
regardless of what lucia has – God is still the ultimate healer. and i stand firmly on that truth. no matter how mild or not this may be – God can heal my daughter. i do see and feel His beautiful presence in our life every single day – whether i sing or cry. no matter what, He is doing a much needed demolition and renovation within my heart.
for now i leave you with this video. it is sad – i’ll tell you that upfront. but it’s the only way i know how to explain why this “suggestive” report weighs so heavily on my heart…