Monday, November 19, 2012

Trying to find my thankful...

I hate Cerebral Palsy.

I hate Cerebral Palsy.

And I hate that I hate it. I do. I feel guilt about the hate. I feel angst about the hate. I feel duplicitous about the hate because I love my boys and would not change who they are. But I hate watching them hurt. I hate watching them struggle to accomplish tasks that are so easy to most of us. I hate watching them want a role in their beloved theater and yet knowing -- knowing -- that it can not be their's because of the limitations of their bodies. Did I say I hate Cerebral Palsy?

And today, the enemy that is Cerebral Palsy dealt another blow to my dear son. The blow did not blindside us. We have been watching evidence of it for a few months. But we were so hopeful that x-rays would prove it less worrisome than we feared. We were hopeful.

I stood behind the protective glass while Benjamin had his x-rays this morning. Dad was beside him but wanted to "protect" me from the radiation. Being behind the glass meant seeing the x-ray as soon as it came up on the computer screen. It had not even completely loaded before I knew. I knew.

Last summer, Benjamin's spine x-rays showed a 20 degree curve of his spine. It was enough to worry us but not terrible for a kiddo with Cerebral Palsy. There have been changes in his ability to sit straight since then. Changes that his non-surgical-Mommy has even noticed. Changes that had his surgical-Daddy reeling as he contemplated spinal surgery even before today.

When the x-ray appeared, my dear boy's spine looked more like an S than anything I had ever seen. Immediately tears were pouring down my face. I swapped places with Dr. Dad so that he could see for himself. I just hugged onto Benjamin.

In one year, my boy's curvature has changed from 20 degrees to 75 degrees. A 55 degree change. A terrible terrible 55 degree change. A drastic, shocking change of degrees.

He needs surgery.

Spine surgery.

Cut-open-his-back-and-put-hardware-in-to-straighten-the-spine surgery.

I can't quit crying.

I am so mad at CP. So mad that the spastic muscles throughout Benjamin's body are fighting him and as he grows up presenting us with big problems that have to be addressed.

He has hand surgery on Dec. 14. It was enough to be worried about that. It was a hard decision he made and it was enough that it is looming on the horizon.

But this. This.

I can not quit crying.

We have a tentative date -- Benjamin's biggest concern was that he not miss the two theater shows coming up in 2013 as well as the big Disney Convention that takes places every two years. So we needed surgery between shows with plenty of time to recover before his much-anticipated D23. We are on for May 24.

I don't feel very ready to give thanks. Obviously. I want to wallow in my self-pity for a bit. Then wallow in some full out pity for my boy. And then possibly switch to wallowing about the effect this will have on our family, our summer plans and life in general.

I don't feel ready for the giving of thanks.

I told Benjamin as much. And he did not criticize me. Or reprimand me. Or any of the things I would have done to him had he been wallowing.

Rather, he quietly asked if I would be joining them in their literature selection for this week of school -- I usually do.  I said of course. And he quietly stated how much he enjoyed today's opening chapters.

He knew the effect would be immediate. We are reading Corrie Ten Boom's The Hiding Place. A fabulous biography of a Dutch Concentration Camp prisoner. My wise boy knows I have read this book before. He knows my favorite part:

Corrie's sister Betsy insists that they give thanks in all things. Corrie is complaining about the fleas and lice in their bedding but sweet Betsy insists they pray a prayer of thanksgiving. Oh, Corrie prays a prayer of thanksgiving but she has to work at it.

It is only months later that the women learn the only reason they have been able to conduct Bible Studies in the camp for the other prisoners is because the guards are afraid of the lice and fleas and therefore never come into the sleeping quarters where Corrie and Betsy lead the Bible studies.

Betsy had been right in giving thanks.

My wise son. I have to give thanks. I have to be thankful. I have to remind my heart that Benjamin is the amazing, wise, funny and brilliant kid he is because of the Cerebral Palsy that is wreaking such havoc with him right now. I have to give thanks for that.

I am not ready to give thanks about this scoliosis. I would love to wrap up my post by telling you I am. But I am weepy and snotty-nosed from too much crying tonight. I am going to let myself grieve for a bit. It might be a few days before I find an adequate place to put the fear, the worry, the sad. But I will put it away. I will find my trust. My faith. My belief that God is good in the bad x-rays and the good. And I will find a way to give thanks.

Just not tonight.


Hoekzema said...

Crying with you, but sending you lots of prayers and hugs!

K said...

Thinking of you and Benjamin!! I hate CP too sometimes but you'll get through this! Hugs and prayers!

Tracey said...

Oh Carol! My heart breaks that y'all have to go through all of this! Give yourself time to 'grieve'. I'm that way too - need to wallow for a minute, then it's 'almost' out of my system. At least it will allow you to have the strength you always have for your precious children. The date of his surgery is my birthday, so hopefully I will remember to send prayers your way that day. Hope you feel God's presence. You and your sweet family are an inspiration to me! Will be praying for the perseverance and strength you will need in the days and months to come.

Love Tracey

Lisa said...

Oh Carol, I'm so sorry. I'm amazed and encouraged by sweet Benjamin's spirit. He is SO incredibly connected to our Holy Spirit. I could literally feel His Presence when I read what he quietly said to you about how he enjoyed the first chapters of the book. And you know what, I can literally fell His Presence all throughout your blog post. I think you have already started the process of giving thanks, even in your grief. You and your family are such an amazing picture of God's unconditional love. Thank you for sharing your real, honest, and true feelings tonight. We are praying for Benjamin and all of your family. We love you guys. -The Shepherds

Madison Anne said...

Carol, I think of you often as I read your thoughts on FB. I am not a good responder, but today I just had to tell you how special you are. I have another friend that constantly has a crisis within her life. I talked to here this morning and she always amazes me as she is constantly saying"God is so good to me". I hate just a bit of illness, I can't imagine what you and your children are going through. That was remarkable what your son Benjamin did with wanting to read The Hiding Place. I will pray more enestly for you all. Give my
love to your Mom.

Greetings! said...

Dear Friend Carol!
You know my heart is heavy with yours. It is so hard no matter what the cause or reason for us to see our children have to have these things. I do want to offer you a contact, a wonderful Christian friend, whose son has CP and had to have this surgery not too long ago. She could offer support few of us can and perhaps answer some 'mom' things to help in this part of the journey.....I love you! And Benjamin. Am praying continuously for God's presence to hold you tightly and give you a peace no man can understand.

AZ Chapman said...

Dear Ben

I hope the surgery goes well you will do fine I know try to stay positive sending good vibes your way