Guilt. I've had plenty of it over the
years, so let's talk about it.
SMA is genetic, caused by a recessive
gene. Both parents are carriers of this “bad” gene. When Colby
was diagnosed with SMA, I felt like it was my fault he had it because
I'm the one who passed the gene to him. Of course there were two of
us who passed the gene onto Colby, but I couldn't see it that way. I
don't know if other SMA parents have ever felt like this or not. For
me it was compounded by the fact that Colby's dad has other children
with other women. Perfectly healthy, non-SMA children. He's a carrier
of the SMA gene, too, but didn't know it until he had a child with
another SMA carrier (me.) Even as I type and reread this, it sounds
crazy. Of course it's not my fault Colby has SMA. I wouldn't wish
this disorder on anyone, especially not on my sweet boy. I wanted a
baby as much as anyone has ever wanted one. I waited until I was in
my 30's to get pregnant. My first pregnancy ended in a miscarriage.
That sucked. I was ecstatic when I became pregnant just a couple
months later. I read all the books and websites, took very care of
myself, and basked in the glow of having my first child. There was
nothing I did wrong to make Colby get SMA. However, it took me a
looooong time to figure that out. It was just shitty luck. Of all the
recessive traits to get from parents, Colby got SMA. Horribly shitty,
life-changing luck. Nobody's fault. It is what it is.
Then there's the guilt of not doing
enough for Colby. Again, as I type and reread that sentence, it's
ridiculous. Every single thing I do is for Colby. He is always my top
priority, no matter what, 24/7. I'll do whatever it takes to get him
the supplies he needs and give him a good quality of life. However, I
have a child that can't do one single thing for himself, so I feel I
always need to be doing something for him. I always feel this way.
ALWAYS. If he doesn't need fed, he needs suctioning. If he doesn't
need suctioning, he needs range of motion exercises. If he doesn't
need range of motion exercises, he needs to be changed. He needs to
learn, or work on eye gaze, or needs to be up in his wheelchair,
socializing with others. You get the picture. It's a never ending
balance of overloading Colby with all the above and letting him just
chill and be a kid. There are some days Colby is perfectly happy
being in bed, farting around on eye gaze and changing the channels on
TV. Then I have guilt of not being able to read the child's mind and
figure out what it is he wants to do. I feel guilty when I go to work
and leave him. I feel guilty when he gets sick, thinking I should
have seen it earlier or should have done different to make him
better. I feel guilty if I do take him somewhere and he acts bored or
doesn't like it. Of course if Colby would use his eye gaze to
communicate, I would have it much easier around here. But, he's not.
We all know that. So I'm left guessing and making decisions for him
most of the time. I shouldn't feel guilty for that, but for some
reason I do. It's an overwhelming reality that Colby is 100%
completely dependent on others for every aspect of his life. That's a
lot of pressure (and guilt) for those of us who care for him. Ain't
nobody got no time for that!
In summary: guilt, it's not fun at all.
It's exhausting, makes you second guess yourself and turns you into a
complete cra-cra. It's something I've had to work through over the
last few years, and I've made great strides in getting rid of those
nasty guilt trips. I hope if there are parents out there, especially
single moms, who think what they're doing isn't enough, just stop it.
If you're a decent person with any sense at all, chances are you're
doing all the can do for your child. And there is something to be
said for effort. Trying your best and putting your child first goes a
long way in my book. The next time you get down on yourself and feel
the guilt seeping in, remember what Elizabeth Taylor said, “Pour
yourself a drink. Put on some lipstick. Pull yourself together.”
It's what I do when that nagging guilt comes knocking. And if that
doesn't work, try eating buckets of ice cream, and don't feel guilty
for one minute that you need a little help getting through
parenthood. It's downright tricky sometimes!
No comments:
Post a Comment