Appreciating, allowing and accepting the differences of motherhood when children have special needs.
Life isn't about waiting for the storm to pass. It's about learning to dance in the rain...by Vivian Greene.
Monday, January 14, 2013
The Lows and the Highs
When you are raising a child with a disability, there are so many reminders out there of the life you thought you would have, but do not have. There is one word for this - it's HARD.
Matthew and I were taking a walk down our street, and we saw some of our neighbors, 2 young girls playing jumprope independently. With no parents watching. Two sisters, in their own driveway. While I have to watch every single move Matthew makes. He will probably never jump rope, but that, to me, is not the sad part. The sad part and the hard part is knowing that he will not gain that type of independence and neither will I. He has to be watched constantly. Walking away from the neighbor's house, I am welling up, trying to hold it in. My neighbor gets to fold laundry, read a magazine or just "be" while her girls play. I am jealous (no, not of folding laundry) but of the freedom and independence those girls and their mom have, and because I have to fold my laundry and wait to feel like "me" until after Matthew is asleep.
I was picking up Matthew from Unified Sports after school. What a beautiful program filled with typically developing peers and kids with special needs coming together in the gym to play sports. When I arrive at school he is happy, tired, and I know he feels good about being a part of this program. It's all good. Then as we are walking to our car, a very kind and polite 5th grader who is a role model in the program says good bye to Matthew. Matthew replies appropriately and his mom says something to me like, "Peter was partnered with Matthew today", with a big smile. I smile back, say thank you, etc. But all I can think as I buckle Matthew in his seat and take a deep breath to fight back the tears is - that was supposed to be me - the mom of the kid who helps others. The mom of the polite scholar athlete. But that is not me.
Even though my life as a mom is SO not what I ever imagined, there are many moments each day when I know I was meant to be Matthew's mom, and so proud that I am.
If I were to write a letter to Matthew, it would go something like this:
There was time not so long ago that I worried constantly you wouldn’t be able to speak. Now, you talk too much – and strangers are even beginning to understand what you are saying! I am so proud of you for working so hard all these years in speech therapy – but most of all, I am proud of you for the joy you spread to others. My heart swells in happiness when I see the smiles you put on strangers’ faces several times a day.
"What’s your name?"
"Where are you going after this?"
"What time will you be home?"
"When is your garbage day?"
These are the questions I hear you ask the woman who works at the grocery store cash register or at the library check out desk each time we go to these places. You surprise people with your deep smile, and inquisitive nature. Thank you, Matthew, for allowing me to witness the surprising joy you give to others – and the happiness you put in my heart.