Now to say that this has been a trying year is an understatement, but I'm realizing this is all a matter of perspective. My 11 yr old, Tasia, was diagnosed with CM, Type 1 just months ago after my noticing her nystagmus which led from the optometrist to the neurologist, 2 MRI's and now the second neurosurgeon consultation in 3 days. She spent her 11th bday on a plane to her first consultation. My story is not unique, but this leaves me a window to share. Here on the Big Island of Hawaii, contending with medical issues leads to island hopping. As a single mother with little support, it's up to ME to man the reigns and be diligent not for just her, but my own medical issues. Mine are not the focus but what is is STAYING POSITIVE and STRONG at a time that can be very scary! Tasia is all I have and this road has been long and tiresome. We've lived in AZ for 9 of her 11 yrs so this move has located us to a situation that's like going BACK in time as the Big Island doesn't have the medical facilities as Oahu. Not cheap nor convenient, but possible. I've had to stop working for my own medical reasons and will face her surgery within the next month. I'm fearful, unaware of the caretaking involved at home. We will have to fly after 3 days of her surgery and am concerned of the flight itself (elevation an issue? Transporting onto a plane?). We've had to commute as it is for all consultations, which is a production in itself. Then will I know what to do? Her 6th grade will be lost? How am I to afford not working to care for her? Will I be able to handle all this emotionally? Financially? As a single mom with no additional help, inc her father, will I stay sane? YES! The fears are strong, but my determination is stronger.
BTW, her MRI shows there is hydromelia from C5-T7 and there is bulbomalacia. This explains her lack of coordination and nystagmus. As a very active mother, I often wondered why she was so uncoordinated and instead of letting it frustrate me, I accepted her for who she was. Her social skills may be affected due to her self consciousness of not fitting in. I am addressing her QUALITY OF LIFE....WILL THE SURGERY HELP HER? My parents of Vietnamese descent, naive to the woes of such a foreign disorder, as they ironically are, are dubious if surgery is necessary. Of course it's not NECESSARY, but I'm opting, at times questioning if this is best at her tender age of 11. They want me to wait until she's older, but I explain this is not something that'll be outgrown. As it is, this will be a milestone within the next month, and I'll be grateful to not fall to tearful pieces. Which I will when she's not looking.
So apparently my post is more of matters of the heart. And I ask for prayers. And it may be convenient or selfish that I've found faith as of late including my sobriety, but it's brought me focus, direction, HOPE AND POSITIVITY, which we know we can all use in a time of distress, suffering, negativity and worry.
But I write this with blessings counted that she's alive. And that the only mourning she faced today was the nail she lost this morning after it was crushed in a door sill over a month ago. Little does she know her suboccipital decompressive craniectomy, C1 laminectomy and duraplasty blah blah blah blah, ....aka brain surgery to her beautifully naive capability ( I was lucky she remembered how to say "cerebellum" upon her explanations to others said with such naivete. hahaha).
It's just past 1am and as a woman who's phobic of mice, I just heard one caught in my catch and release contraption that Tasia convinced me to buy. Again, it reiterates perspective because this baby mouse I've seen scuttering earlier has a demise that makes Tasia's surgery even more hopeful. The sun will rise and she's blessed to have mommy take her to an Hawaiian Festival with her friends, adding to another beautiful day as we take one at a time. Can't say this mouse will have the same. Love and ALoha, friends. Gina
Please don't assume I take light of any of your pain!! I'm so saddened by the posts I've read! But we're not alone. No answers given here, just a little more support, yah? Thank you for your time.....