Thursday, August 04, 2011

On Living with Mild CP

I knew the tears would come.

As soon as I said the words, "Do you want to know the truth?" I second-guessed my decision to lay the cards on the table. My oldest daughter was on her way out the door to soccer, and for the umpteenth time her younger sister was voicing frustration that she could not go as well.


"But WHY won't you ever let me?!" she demanded, her eyes sparking over the pages of her homework assignment. I answered her question with my question and she insisted that yes, she wanted to know. But when I told her the reason - that we did not feel that co-ed soccer on a cement court was safe for her, now or ever - she erupted into sobs.


No amount of assurance that we have her best interests in mind was comfort to her wounded spirit. Reminders of the special things she has been able to do while her siblings have not (such as
riding horses and weekly swim classes) did not help, either. All that mattered was that once again her physical limitations had set her apart in ways she hated and that disappointed her.
Many times while checking the "stats" on this blog, I find that visitors have stumbled upon a 2008 post entitled "Our Family & CP." In that post I shared a little about living with mild cerebral palsy and how it affects our daughter in small but significant ways. I have discovered over the years that there is much information available regarding CP in general, but little concerning mild cerebral palsy and its day-to-day realities.

It is not unusual for days and weeks to go by in which our daughter's diagnosis does not even cross our minds. She is a bright, funny, and caring little girl who is turning into a young lady before our very eyes. We expect of her what we expect of each member of our family. At the same time, situations do arise at times that remind us of her limitations and tug at our heartstrings as we seek to minize hurt feelings and disappointments. The soccer class conversation was one of these.

Another example would be our daughter's constant desire to cook and clean and help in the kitchen. These are wonderful things (seriously, what parent wouldn't be delighted to have children wanting to help with housework!) But there is this delicate balance of guiding her to those projects that are within her physical capabilities to do. CP affects her fine motor skills as well as overall strength in her hands, resulting in broken utensils and disappointed tears on more than one occasion. While allowing our children to try and fail is a natural and important part of parenting for any child, there is a special concern that she not feel defeated at being unable to do the simple things others can do.

I look at my daughter and realize that living with mild cerebral palsy has in some ways made her who she is. While there are days it frustrates and saddens her, I see and admire that despite her challenges she loves and trusts God and is allowing Him to mold her character for His glory and future purposes. The tenacity she has developed physically has spilled over to a strong sense of right and wrong, and she is unafraid to stand up for truth even when others do not. The compassion she exudes is a direct result of the hurts she herself has faced and does not wish for others. Her goals for the future always involve love and kindness and service, whether as a doctor, a therapist, or simply a mom (she says she wants to be all three!)

Yesterday as I was working on this post, I found something that was such an encouragement to my heart. It is a blog written by a young lady in college who is a special education major with aspirations for higher education and a career helping others. She also happens to have mild cerebral palsy. Erin describes the purpose of her blog in this way:
In this blog, it is my intention to give you a light-hearted (sometimes inevitably heavy-hearted) insight into the life of a college student who has a little bit of an extra challenge.

In addition to discussing topics that are relevant to disability, psychology, undergraduate training, pediatrics, and medicine, I hope to give you a sneak peek into the life of someone with a congenital and otherwise chronic illness is like.

It only took reading one of her posts for me to sit back with a mixture of hope, empathy, and a dawning realization that her experiences may one day be those of our own daughter. It is enlightening and encouraging to have this honest, open perspective of the future with its continuing challenges yet amazing opportunities. I can't wait to sit down with my daughter and talk through some of Erin's posts in the future because I know she will be so encouraged to realize that she is not the only to struggle with simple tasks like note taking, for example.

Only God knows the future, but I have always been confident that His plan for our daughter is a very special one. I am so thankful for the privilege to have a front-row seat and watch the miracles happen!

4 comments:

Kari said...

Thanks for sharing your heart.

Erin said...

Stephanie,

Thank you so much for reading my blog and sharing it with others. I'm so glad that I can be of encouragement to you and your daughter. May she forever be encouraged and delighted to pursue whatever her heart desires. If I can be of assistance, please let me know! Thanks again!

Brad and Carrie said...

Thanks so much for sharing.

Terri Fisher said...

Thanks for sharing the blog link...can't wait to check it out! Tell Isabel that Sophia sends hugs and kisses her way and can't wait to meet her special cousin who will understand her as no one else can!!!!