My child is not perfect. Her body
does not allow her to do all the things she wants to do. She was born with
something called Arthrogryposis Multiplex Congenita. In layman's terms, it means
she was born with contracted joints. What is a contracted joint you ask? It is
a joint that is fixed or frozen and does not move. Most of her joints are
affected.
She is unable to do most things for
herself. She cannot dress or undress, use the bathroom without help, bathe
herself, and sometimes due to the difficult surgeries she cannot feed herself. She
uses a wheelchair. I often wonder how she tolerates the painful treatments, the
rude stares and nasty comments. People talk to her as if she cannot understand.
She understands just fine. It's her muscles that don't work, not her brain. I
would be a mess if I had to live like she does. How would I handle the
struggles she faces?
And yet, she wakes with a smile
every day. She tells me how she is going to help me with housework as soon as
she learns to walk. She tells her "brudders" to wait for her if they
are going to play. She goes to school, learns, writes, and generally makes do
with what she has been given. She does well in school and has lots of friends
there. She never met a stranger, and makes friends everywhere she goes. She has
a bubbly personality that seems to draw people in.
As a parent, you look forward to all
the things you can teach your children as they grow up. You don't think: What if
I can't teach them? What if I never know the joy of seeing my child walk? Will
it be ok? What if my child never learns to say those special words every Mama
loves to hear? I love you…Will I
manage? Will I learn to love her as she is?
Would you? If you do, you might find
that even though parenting isn't as you pictured it, the person doing the
learning isn't your child, it's YOU!
Our little ray of sunshine can't
walk with her legs, but she takes us down many roads we may not have chosen to
go on our own. She is the one doing the teaching. She leads us. Some of the
many things we have learned is how to smile through adversity, to be kind to
others no matter their treatment of you, to be brave when you would rather fall
apart. I know I couldn't live like she does with her disabilities. I don't have
the wisdom. I don't have the brave face. I don't have the never wavering smile.
She is not my first child, but she is the first child to teach me so many hard
lessons I never thought I needed to learn. Raising my imperfect child has
taught me more than my college degree. It has taught me more than 40 years of
life could teach me. The next time you are faced with a scary challenge, think
about my imperfect girl. She never gives up. Ever. If she fails, she tries
again, she tries harder, until she reaches her goals. In spite of all the
adversity thrown her way, she just keeps on trucking. It's too bad we all can't
be as imperfect as she is. Imagine what we could do if we were.
Tammy is a mother of ten children. All of them have various special needs. You can follow her blog HERE.
Tammy is a mother of ten children. All of them have various special needs. You can follow her blog HERE.
This is so beautiful and true. Thank you for sharing your story.
ReplyDeleteThank you, Tammy, for sharing this piece of your story. It helps me remember some of the many reasons I have to be grateful. I take so many things for granted. May God continue to bless and keep you and yours.
ReplyDeletethanks ladies. she is such a gem! I can't wait to see all the things she will get up to in her life. I know whatever she decides to do she WILL do.
ReplyDeleteYou are such an inspiration and a perfect example of what it is to lay down your life.
ReplyDeleteBlessings and strength to your inner man!