there are always
ups and downs with being a parent. a never-ending and wonderful roller coaster ride.
there is something i should have told the world before now, but was too afraid. i was wallowing in my own grief. my Alexander roller coaster has hit a nauseating loop-de-loop. We have known for some time that Alex had some form of muscular dystrophy. (for those of you that don't understand, that makes him one of Jerry's kids, look it up). until recently though, we didn't know what type. we were soo wishing for something mild, but that was not what we got. granted it could always be much worse than it is, it is still a hard pill to swallow. we found out in november that Alex has a form of mytochondrial myopathy called mitochondrial encephalomyopathy. basically it means that his little body can't make the energy it needs to grow and repair. to date we have seen several different types of specialist and had numerous tests run. He has a heart murmur with a leaky valve, micro siezures, weak muscles, and neuropothy in his legs.
all of this has been rough on us. we sit and wonder some days if we should plan for college or if we should put that money aside to pay for other expenses. Alex is so full of life and love. so much joy. but then roller coaster goes down in a dip and we are faced with the sorrow that no parent should be forced to faced. the possibility of losing a child too early. it is not a matter if Alex has full-blown siezures, but when will they come. it is not a matter of if Alex will ever be in a wheelchair, but when will the day come. we ponder how soon will the gods take his shining face away from us. how long do we truly have with him?
granted i have 3 other children that gods willing i will get to see grow-up, but i wanted to have that joy with all of my children. i wanted 4 proms, 4 graduations, 4 trials through Junior high, and 4 weddings, 4 sets of braces, and the list could just go on.
i remember growing up, and that other kids would pick on jerry's kids, and i never understood why. to this day i still do not. now my son is one of them, and it hurts me to the core when someone makes a comment about the disabled and being one of Jerry's kids. now my son does ride the short bus. i am failing to see the humor. many short-sighted and narrow-minded morons do not stop to see the pain that surrounds those children. the physical pain that they feel and the emotional pain that their families go through.
i want to give him everything now. i want to give him the world today. i want to take him to Disneyland. i want him to run and play and jump. i cherish every drawing he makes. i'm sick of crying, i'm sick of crying alone.
i keep getting asked by various professionls if i blame myself. no, i don't. there is no one to blame. it is simply fate. and that is ok.
signing off, will blog more later.....
there is something i should have told the world before now, but was too afraid. i was wallowing in my own grief. my Alexander roller coaster has hit a nauseating loop-de-loop. We have known for some time that Alex had some form of muscular dystrophy. (for those of you that don't understand, that makes him one of Jerry's kids, look it up). until recently though, we didn't know what type. we were soo wishing for something mild, but that was not what we got. granted it could always be much worse than it is, it is still a hard pill to swallow. we found out in november that Alex has a form of mytochondrial myopathy called mitochondrial encephalomyopathy. basically it means that his little body can't make the energy it needs to grow and repair. to date we have seen several different types of specialist and had numerous tests run. He has a heart murmur with a leaky valve, micro siezures, weak muscles, and neuropothy in his legs.
all of this has been rough on us. we sit and wonder some days if we should plan for college or if we should put that money aside to pay for other expenses. Alex is so full of life and love. so much joy. but then roller coaster goes down in a dip and we are faced with the sorrow that no parent should be forced to faced. the possibility of losing a child too early. it is not a matter if Alex has full-blown siezures, but when will they come. it is not a matter of if Alex will ever be in a wheelchair, but when will the day come. we ponder how soon will the gods take his shining face away from us. how long do we truly have with him?
granted i have 3 other children that gods willing i will get to see grow-up, but i wanted to have that joy with all of my children. i wanted 4 proms, 4 graduations, 4 trials through Junior high, and 4 weddings, 4 sets of braces, and the list could just go on.
i remember growing up, and that other kids would pick on jerry's kids, and i never understood why. to this day i still do not. now my son is one of them, and it hurts me to the core when someone makes a comment about the disabled and being one of Jerry's kids. now my son does ride the short bus. i am failing to see the humor. many short-sighted and narrow-minded morons do not stop to see the pain that surrounds those children. the physical pain that they feel and the emotional pain that their families go through.
i want to give him everything now. i want to give him the world today. i want to take him to Disneyland. i want him to run and play and jump. i cherish every drawing he makes. i'm sick of crying, i'm sick of crying alone.
i keep getting asked by various professionls if i blame myself. no, i don't. there is no one to blame. it is simply fate. and that is ok.
signing off, will blog more later.....
as i reread this, i was more than a little angry, but it is understandable. so many things in this original are the same, a few things have changed, and some predictions have come true... but we will continue to live, learn and grow.
I hate the roller coaster too.. I often find my self thinking when instead of if to many of those things, it is so hard.
ReplyDeleteI can't wait to meet Alex tomorrow!