Wednesday, May 14, 2014

Being the other one.

We love books in this house, so packages from Amazon are fairly common. Still, I was not expecting anything today so the package caused me to raise my eyebrows (Admittedly part of that was in jest...since my birthday is around the bend!). As my daughter opened it, she placed the book in front of me, "For my research paper!"she said.

My initial reaction was excitement. She has been working hard on her research paper on siblings of kids with special needs -- working in partnership with her Dad to see what research has been done and what areas need improvement/support/services. I am so very proud of her heart.

There was also a reaction of anticipation: I would love to read this book, too.

But there was also dread. The dread of one who had no such book 17 years ago and has scrambled, prayed and hoped that I have done alright by my "other one" (and now two "other ones"). The prevailing sense that I am always racing to be two or forty steps behind in this world of special needs parenting applies just as much to parenting my non-special needs children.


The triplets were tiny babies when we realized the triplet stroller was too cumbersome to fit in all doors. We used it for walking in the neighborhood:

But if we needed to go in anywhere, I would place Claire in a front carrier and the boys in a twin stroller and off we would go. When she outgrew that, she was walking. She would toddle along beside me going into the hospital for physical therapy as I pushed the stroller. She soon learned to stand on the front where her boys held onto her arms (they devised this, not me!) and she would giggle all over the hospital.

Boys in twin stroller, Claire in carrier and Daddy half-asleep (read: mid-med school!)

When Dad was with us, we carried an umbrella stroller for baby girl.

More than once, I was reprimanded by harsh women (who didn't know us at all) for not letting her ride in the stroller, for not giving her a turn.

But the twin stroller was only the beginning of not taking turns.

I remember climbing into bed many many nights wishing I could go wake little bitty Claire up and just hug her close. Days of hectic appointments, therapies and just the struggles to get triplets up, dressed, fed and out the door could leave me short-tempered and sharp-tongued. Sweet little girl who could dress herself and get herself buckled in and out of her car seat and into the house had to do so. She couldn't be carried. She couldn't be coddled. She had to be pushed. Because Mama's arms were full of boys who couldn't, crutches, walkers and all manner of equipment.

When she was in preschool, her teachers reprimanded her for helping her brothers so much. When she was in second grade a teacher told her she felt sorry for her for having to help so much. And when she was in middle school, a teacher's aide had the audacity to call her a "loser" because she spent more time making sure her brothers had all they needed in the cafeteria rather than sit with her own friends.

I am anxious to see if the book addresses these scenarios. I no doubt handled them poorly. 

I told the wonderful amazing preschool teachers that she was behaving in exactly the way life was modeled for her. She had spent all her days with me and her brothers -- she played with three baby dolls; she dressed three baby dolls; and in situations where Mommy was not available she did what Mommy did and helped her brothers. I would not tell her to do less.

I screamed and yelled (albeit in the privacy of our own home) about the education of an educator who would pity a little girl and tell her about it. Really? And then I sat all three of my beautiful beautiful seven-year-olds down and told them that we all have choices to make. All of us. Benjamin and Mason get to wake up every single day and decide how they will deal with their Cerebral Palsy. They can choose a spirit of defeat, they can be sad, mad and pout all day. OR they can choose to give the day to God and ask Him to use them -- and their Cerebral Palsy -- in whatever ways He deems fit. They can glorify Him with their gifts rather than belabor their deficits. 

And I looked at my precious daughter who was the recipient of her teacher's pity and told her she also got to make a choice every day. She could do as the teacher said, and feel sorry for herself. Teacher was right. Life in our house was not fair to Claire and probably never would be -- if fair means getting equal volumes of mom's time and energy. Or she could choose to thank God that she can help; that she doesn't have Cerebral Palsy; and that she gets to be in a really super-cool family (I think quite highly of my little family) where there is more than enough love to go around!! No one is short-changed on hugs or love in this house!

Teacher's aide was young, inexperienced and temporary. I did not waste energy on her. But I did spend lots of intentional time with my daughter assuring her that the attributes she possesses that make her want to help others -- her brothers, orphans on the other side of the globe, special needs adults -- do not in any stretch of the imagination make her a loser. Rather, quite the opposite. Claire is an instrument of God, a vessel to help those our society marginalizes. She is one of my favorite people in the world. 

So I don't know what the book is going to say. I am confident I will learn and feel chastised in the process. But the beauty is, we live by grace in this house. My children are the recipients of my grace and oh-so-gratefully I am the recipient of their's. We talk and share and sometimes yell and rant. They love me through my mis-placed emotions -- waiting on surgical dates, lab results and even College Board decisions for SAT accommodations can cause me significant stress -- and have accepted more than one apology from this repentant mother.

Having fun with my crew in the elevator...

Oh, I am so thankful for grace.

Carol - The Blessings Counter


katie petersen said...

Carol, you are an amazing mother! And yes, we all fall short, but anyone who knows your kids knows how beautifully you've raised them. You are a huge part of the reason Claire has that sweet, kind, giving spirit. The way you've handled CP and the related issues is why they are all bright lights in this dark world. They learned from one awesome mama! Since I am an "other" and have one, it's on my heart a lot, so I'm looking forward to your book review, as well as Claire's research! :)