I often find myself going thru the daily motions of getting
the kids up, out the door and to school, then communicating their needs with
teachers, therapists and coaches prior to picking them up, shuffling them to
activities and having dinner, then its showers, bath time, medicine, brushing
teeth and bed time prayers. This is the very same as most parents, we all have
busy routines and hectic responsibilities- it’s the smiles and laughter, the
memories made that push us forward. I know that my days may consist of a few
more conversations or a bit more planning, but that’s life. I don’t ever focus
on the added responsibility of caring for a special needs child- until I do.
I recently found myself so frustrated with my husband for asking
the most innocent of questions about Lindsey. I had to take a moment and self-diagnose,
“why was I so annoyed?” “Why did this question strike a nerve?” After sitting
in the quiet of the house once the kids were asleep I realized that being the
champion for Lindsey does indeed take a toll. I have to be the expert on her, I
keep all of her abilities, her challenges locked in my mind. I am not only the
keeper of her secrets but also the solutions. I know her medical history,
therapy history, academic abilities, social success’ and friendships. I am the one that studies new pursuits, new
medical interventions and has candid conversations with other parents in an
effort to better her world. I am grateful to be her champion, I am thrilled
that God trusted me with her development and I am rewarded with her love. But
that doesn’t mean that it’s not hard. I am going on pure faith most days that
the elements we have added are the best solutions, that the advice we have
sought is the wisest and that her trajectory is aimed for success.
While my husband is an amazing pillar of strength to me and gives
us his unconditional support in everything Lindsey- I realized that I was
annoyed that night because it was a question I simply couldn’t answer. I didn’t
keep all the solutions to why Lindsey does what she does or how to correct it.
I was annoyed because it was obvious that even after all this time and all the
progress there is still more to be done, and mostly because I don’t know where to find
all the answers. It’s tough when all you want is to help and you know in your
soul that you simply don’t have all the tools you want to have. We all want to
guide and protect our children, we want to steer them to leading exceptional
lives, but how do you do that when you don’t know why a child suddenly screams
or is crying hysterically for no obvious reason, how do you explain to others
how to handle a situation when you are blind to why it’s happening. Ultimately, these are
moments, they pass and fortunately they happen less and less but they still
make you question why as their mother you can’t “fix it”.
This post is an effort to give all parents especially special
needs parents’ permission to feel overwhelmed, it’s ok to be frustrated; it’s
ok to not yet know all the answers to your child. It is unrealistic to think
you will ever hold all of the keys, so appreciate the moment when you do have
the insight and enjoy the good moments. Those precious good moments when your
child looks at you and without words lets you know that you are a super hero to
them. The best part of being a special needs parent is learning to appreciate
the little moments, the sweet silent smile when they are victorious at a task
or the joy they have when they communicate a desire and you are the only one
who “hears” them. Savor each milestone and know that in large part it’s
happening because you are supporting them with all your love and ability.
