My apologies in advance, if you want happy, sunshine beams out your behind, move on because this will NOT resemble that, at all. I feel odd complaining at all, particularly publicly and considering all we know whom have lost kiddos to Dravet. Yet, at this point, I shall vent, or risk imploding, and hope my raw struggle, rarely discussed publicly, may help another to not feel alone. I realized today, with some help, if I do not share the ugly DS trenches stuff, at least occasionally, Ill never reach another who may be suffering alone. This is the stuff another needs to read in order to relate. Hailey has been home from school due to seizures all week, again. I am her only companion and only seizure alert device, still. Due to the service dog debacle this past year and resultant absence of a SD to help us, I am THE one, always it - to say I am exhausted is a gross understatement. Enter self-pity: all the cant do, cant go, cant enjoy stuff is bubbling up after being isolated @ home all week to keep Hailey safe. We went out yesterday, briefly, to order a new transport chair in hopes of lowering the list of cants. Not exactly best of times for either of us and Hay Hay paid for it with 4 szrs later in the day. We were making the best of a crappy day. Tomorrow will be better... Each night, hopes of tomorrow will be better, tomorrow shell go to school, Ill be able to get groceries and clean up the house in the few hours shes gone. All the while, cell phone will be attached to my hip, just in case. This week, I have packed, repacked and repacked her lunch, backpack etc. for school. Each morning I have had to cancel school, plans, commitments due to still more seizures. Each night I tell myself, tomorrow will be better... I am exhausted, sad, scared, angry, isolated and over it! Seizure triggers, whether due to moon phases, hormones, heat or maybe the wind just blowing in the wrong direction, are triggering seizure paloozas to the point of absurdity. I have no method of predicting when or knowing why shes seizing, we live alone so my eyes and ears are IT day in and day out. Tomorrow will be better... Despite an already limited income, I advance pay $600/mo for CBD (her dad helps paying 200 of the 600 but often in arrears which leaves me financially shipwrecked for weeks each month). No offense to her dad, it is what it is. Suppose I should be glad for the help at all right? Add to this, I know so many families who still cannot even legally attempt CBD for their kiddos. I should be grateful, I know! But even with CBD its NOT working because Haileys dose is well below therapeutic range, its all I can afford. Maybe it would help if I could increase it, maybe. Tomorrow will be better... Please forgive my rant, I am exhausted, my manners are likely lacking. I want to hang out, chat on the phone or simply go do something. I want to do a lot of things, often I am able to do none. This is NOT a plea for pity, this is as it has always been. I simply dont talk about this part of our lives in public, sorry if Im shocking some. By sharing the depths of our best and worst, I pray I can reach another who may need help. Its easy to relate to my Yay Hay Hay posts, not so easy to relate to this. Tomorrow will be better... So if you ARE struggling, please know you are not alone. Whatever the problem, illness or challenge, others are going through it too. Believe me this sucks for me and is certainly not my comfortable zone but Id rather be a public puddle of tears than miss a chance to help if I can. Tomorrow will be better... Truth is, for me, tomorrow is an entire day away - today is crappy and thats OK! Im running on fumes, lacking my usual make the best of this crap attitude and tired of life with Dravet. Tomorrow will be better... Sorry for the party pooper post everyone. Im simply raw and over it today. I hope my emotional upheaval helps someone, somewhere giggle, crack a smile or just a knowing nod that you are not alone, ever. Whew, that really sucked! Tomorrow will be better...
Posted on: Wed, 10 Sep 2014 23:28:56 +0000
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