Sunday, December 15, 2013

A Mother's Guilt

As we settled into a routine at home, therapists began calling to set up their initial
evaluations of Caleb. The occupational therapist was the first to arrive. After
introductions, she got right to work. She began her evaluation with a questionnaire
on the milestones that Caleb should have reached. The first few I was able to answer
“no” to without any problem, but by the time I had reached the bottom of the list,
unable to answer “yes” to even one thing, my heart had dropped. I proceeded to tell
her all of the progress he had made, but none of it was enough for her to be impressed.

Now one could say that the very reason she was in my house was because Caleb was
delayed, but as a first time mother I began to interpret the delays as somehow being
my fault. I showed her how I held him, laid him to play, sat him in his little seat.
Everything I showed her seemed to be wrong. She wanted Caleb lying on his tummy
more; she wanted him being put in an upright position more; she wanted him out
of his little seat that provided so much support. I understood the logic in what she
was saying, but had I done nothing right as a mother? I thought motherhood would
come naturally. I hadn’t expected there to be so many rules. When she left, I sat
on the kitchen floor with Caleb and cried. I began to feel another heavy weight of
responsibility. Now I knew, I didn't just need to care for Caleb, I needed to do it the
right way. I wished I didn’t know.

The therapist would be back in three days, so Caleb and I didn't have much time to get
to work and make some progress. I began by lying Caleb on his belly, but he didn't
like it and started to cry. The crying set off the vent alarms, causing him to breathe
against the vent and turn blue. I picked him up to comfort him, remembering to hold
him in a way that would force his neck muscles to work. He cried more. I tried to
stop using his little seat so much, but then where was I to put him?  I couldn't win. I began to feel an underlying guilt that no matter what I was doing, it was never quite right or quite good enough. This feeling continues to this day.

For any parent with a special needs child, so much of the child's development rests on
you. Oftentimes services don't get provided unless you advocate for your child. In
Caleb's case, it started with the therapy. Not only did we have exercises from the OT,
but soon Speech and Physical therapy became involved. Each therapist gave me a
list of exercises that were to be done several times a day. Snuggling Caleb, just to
enjoy time with him, became a thing of the past. Now every encounter was filled with
therapy recommendations and every spare minute was spent advocating for additional

Many of Caleb's needs have changed, but they still remain ever present. Caleb needs
structure in his days. He has a very hard time without a schedule. But although I
have tried, I cannot pull myself together enough to have a daily schedule. Caleb still
does not speak. How much of this is our fault? I don't know. We have tried over and
over again to implement methods to help him, but we can only carry it through for
a short period. He has recently begun using a new communication app on his iPad.
Once again we are trying to implement “talking” into our daily routines. But for how
long? A week or two until we don't see any progress and give up?

The difficulty is that with Caleb, and most special needs children, the progress is so
slow. What takes my other children ten tries to master, will take Caleb perhaps a
thousand. And there are no guarantees that he will ever be able to accomplish the
task. So oftentimes, after two or three hundred times, we become discouraged and
quit. But there is always the nagging feeling in the back of my mind that Caleb could
be doing more if we were more persistent.

I think all mothers live with a bit of the "never enough" guilt but perhaps this is
magnified with mothers of special needs children. I wish I had an antidote and could
provide it in this post, but I have not yet found one. I do know that if I could get
beyond this feeling, I would be able to enjoy my time with Caleb so much more.

I have recently begun learning about truly giving up control of the outcome of things
and resting in God's provision. Perhaps as I begin to allow myself to rest in His
sufficiency, I will learn that what I have to give is enough, even if the results I am
looking for never occur. And perhaps in the resting, I will come to a spot where
Caleb is also enough, just as he is, and I will begin to let go of all of the expectations
that hold me bondage in this grip of guilt.

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