A mother's helplessness
I am mother. By that very definition, I should be able to fix all that ails my little ones. I've already learned that I can't fix what ails Gregory, not permanently. But in the past few days I'm realizing he's going through something right now that I can't even touch.
Trouble in school, horrible sleeping at night, regression to some behaviors that I haven't seen in months. His occupational therapist says it can happen when they have breakthroughs or if they make big progress in something. The brain has to rewire itself and they go through adjustment periods while getting used to their new "self". Gregory is pretty much potty trained now, and has had some big speech improvements. But his temper has flared again, and he's waking so much at night that it just can't be possible that he's rested during the day. His teacher is noticing some behaviors as well and he is having trouble with parts of his day at school.
I watch him lately when he tries to cope. He's chewing a lot, and is searching...always searching for the sensory input that can soothe him. GOD DAMMIT why can't I help my baby!?!? I want to take him in my arms and tell him that no matter what he does, it's ok, we love him and he'll be okay. I want to ease his tension when even he doesn't know what to do. I want to reach a hand to him and let him squeeze it until his frustrations subside. I want more than anything for him to be able to articulate to me what hurts, what's upsetting him, what's making his day so rough right now. I want to fix it for him.
There's nothing worse than feeling helpless when one of your babies needs something that you can't provide.
Trouble in school, horrible sleeping at night, regression to some behaviors that I haven't seen in months. His occupational therapist says it can happen when they have breakthroughs or if they make big progress in something. The brain has to rewire itself and they go through adjustment periods while getting used to their new "self". Gregory is pretty much potty trained now, and has had some big speech improvements. But his temper has flared again, and he's waking so much at night that it just can't be possible that he's rested during the day. His teacher is noticing some behaviors as well and he is having trouble with parts of his day at school.
I watch him lately when he tries to cope. He's chewing a lot, and is searching...always searching for the sensory input that can soothe him. GOD DAMMIT why can't I help my baby!?!? I want to take him in my arms and tell him that no matter what he does, it's ok, we love him and he'll be okay. I want to ease his tension when even he doesn't know what to do. I want to reach a hand to him and let him squeeze it until his frustrations subside. I want more than anything for him to be able to articulate to me what hurts, what's upsetting him, what's making his day so rough right now. I want to fix it for him.
There's nothing worse than feeling helpless when one of your babies needs something that you can't provide.
posted by Rebecca | 12:02 AM
2 Comments:
My thoughts are with you! I hope that his regression is something very short lived. Hang in there. ((HUGS))
I found this yesterday and on some level it applies to us all. Just know that your job isn't to "fix" him, your job is to show him the world and learn it through HIS eyes. Learn what he has to teach YOU.
Where Are the Parents?
By Sue Stuyvesant
Where are the parents? They are on the phone to doctors and hospitals and
fighting with insurance companies, wading through the red tape in order that
their child's medical needs can be properly addressed. They are buried under a
mountain of paperwork and medical bills, trying to make sense of a system that
seems designed to confuse and intimidate all but the very savvy.
Where are the parents? They are at home, diapering their 15-year-old son, or
trying to lift their 100 lb. daughter onto the toilet. They are spending an
hour at each meal to feed a child who cannot chew, or laboriously and carefully
feeding their child through a g-tube. They are administering medications,
changing catheters and switching oxygen tanks.
Where are the parents? They are sitting, bleary eyed and exhausted, in
hospital emergency rooms, waiting for tests results to come back and wondering:
is
this the time when my child doesn't pull through? The are sitting patiently,
in hospital rooms as their child recovers from yet another surgery to lengthen
hamstrings or straighten backs or repair a faulty internal organ. They are
waiting in long lines in county clinics because no insurance company will touch
their child.
Where are the parents? They are sleeping in shifts because their child won't
sleep more than 2 or 3 hours a night, and must constantly be watched, lest he
do himself, or another member of the family, harm. They are sitting at home
with their child because family and friends are either too intimidated or too
unwilling to help with childcare and the state agencies that are designed to
help are suffering cut backs of there own.
Where are the parents? They are trying to spend time with their non-disabled
children, as they try to make up for the extra time and effort that is
critical to keeping their disabled child alive. They are struggling to keep a
marriage together, because adversity does not always bring you closer. They are
working 2 and sometimes 3 jobs in order to keep up with the extra expenses. And
sometimes they are a single parent struggling to do it all by themselves.
Where are the parents? They are trying to survive in a society that pays lip
service to helping those in need, as long as it doesn't cost them anything.
They are trying to patch their broken dreams together so that they might have
some sort of normal life for their children and their families.
They are busy, trying to survive.
Kat
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