Friday, January 23, 2009

 But wow, I'm not going to want to do it

My dear sweet 6 year old, 

This year is going to be packed busy for you. The mommy part of me cringes at some of the things that I am purposefully pursuing for you. The practical side of me knows you are ready and that I must challenge you. Not to do so would be doing you a disservice.

Little one, how did you get so grown so fast?? I am so proud of you.

We will be busy attending meetings and getting recommendations for planning kindergarten. Last year we wanted you to go, but had some questions. After coming up against some oppositions from school administrators we further examined our questions and decided not to push for it. No such question this year. You will be going to kindergarten. Your readiness nearly bursts forth in your questions, your abilities, and there is just a look in your eye... Buddy, sometimes I just want so much to let you do what you want. To take the easy way. But I know that way all too well. I have that game down and it has not served me well. The left side of your body works fabulously, and so you use it always. The neglect of your right side is always easiest. But it is not best. I am often amazed at the things you accomplish one sided. You will use your teeth, arm, and feet before you use your last-resort right hand. It often seems to not even occur to you that it is there to be used and to help you. And so this summer we are finally getting you into a specialized pediatric rehabilitation program that will take away your ability to do just that; avoid the difficult.

By restraining what you can do you will be forced to a level of frustration that I wouldn't wish on some one I didn't love with every fiber of my being - certainly not some one I do. So, so much. And yet my love for you is growing to a level of seeing the amazing good it will do you to push through the difficult and raise the bar of ability for you. We tried to get you into the C.H.A.M.P (Comprehensive Hand And Arm Movement Program) a couple of years ago and through some confusion in their office things never moved forward. I believe K, that you were not ready. And now you have achieved so much more. We are now actively pursuing this and are in contact with the team who run this program. Our aim is to begin the intense therapy this summer. For three weeks your "good arm" will be in a cast. I can't even imagine what this will be like for you. Some therapists have described the difficulty of using your right hand and arm as if we were to try to use our toes for activities that require very coordinated skills only fingers and hands can do. You have to use so much concentration to do as much as lift your arms and grasp an object with your right hand.

I will drive you to the rehab center, an hour away, 3 days a week for 3 weeks where we will join a few other kids with similar physical challenges. We will spend a few hours there doing different activities and seeing several therapists. At home I will need to keep a detailed journal and do several planned activities here as well. The cast on your left arm will be removable and we will be given the option to do so, but it has been recommended to just keep it on. If we are going to do this, it will probably be best to do it all the way. The moments will come where everything in me will just want to make it all go away for you. I will want to rip the cast off and stop doing the tough stuff. I will need your daddy to help me to stay strong and do what is best for you - not easiest. Through it all I hope you will see that what we do is out of a love that is so deep, so hopeful.

We see a new readiness that is just thrilling for us. In the next few months we will be getting some new evaluations for you. The Standardized testing that we have done in the past has been a joke. There is nothing about you that is standard my dear. :) Finding a pediatric specialist who is eager to do some psychological /cognitive testing that is designed for visually impaired kids with CP was such an answer to prayer! We will also have an evaluation of your size/eating/nutrition. We will get the results to your EEG, and see your neurologist. Its going to be so busy, and it won't all be comfortable for you - or me. But isn't that part of the big things you and mommy are learning together K? Comfortable may be nice and easy. Such a happy place. :) But it doesn't help us grow much does it? I'm so glad to be learning along side you mister K.


Sara@I.Sass said...

Oh goodness girl. I will be praying hard for ya'll. I can't imagine the courage it took to make this decision. You keep remembering: we know that suffering produces perseverance, perseverance, character,and character, hope. And hope does not dissapoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.Romans 5:3-5
When troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfet and complete... James 1:2-4(NLT)
It's going to be hard, as you said. But we are here for you. Listening, encouraging, loving and praying for you!

Lois said...

Wendy, such a thoughtful blog. You, Dave and K are so connected and learning together what God wants for each of you. You amaze me with your talents and thoughts. Love to each of you and the other two guys in your life. Love, Aunt Lois

Mel said...

Wendy as a mom of 2 special needs children your blog has me in tears because challenging our kids is heartbreaking but necessary for them to be the best that they can be. Many days and nights I have cried and wanted to say you know what the frustration and aggravation I see on their faces is not worth it.

But the truth is it is worth it, my boys have both grown and changed and are now on a much different path in life than if we had not done and continue to do the hard stuff.

Know i am praying.

Kellie said...

Dear friend,

Look at what this miracle boy has already done! He has amazed you over and over, and I believe he will do it again. This will be one giant test on you all, as you will feel torn in so many directions along the way. I will be here, awaiting any news along the way, and praying for all of you in this new challenge. Your K is such a blessing to us all.

dani said...

wendi, your little family never ceases to amaze me!!! what a special, faithful union you all have formed. my heart is warmed with every visit:)
much love,

Melissa said...

Great post for K! He has an amazing mommy! And the song was a wonderful choice playing in the background! I will pray for all of you...

Cindy said...

Something in my heart is leaping for joy for you just now.

This is a new challenge but also a fantastic accomplishment.

I feel proud like a parent and excited like a child.

It is possible that I am reliving my own moments with my own child so many years ago.

Whatever it is I am Praying for you all.

Heather of the EO said...

Wow. You are an amazing mother. You have a perspective that is so encouraging and inspiring. Keep it up, lady. You rock.

Arlona Mc said...

For our "Special K" grandson, I was amazed 6 years ago that every time the nurses swaddled you in NICU you managed to get your left arm out. I would watch you in action. It was this determination in you that kept you alive along with all of the miracles of God. People were praying for you all over the world as the family and friends asked people to pray for you and your momma and daddy. Now it is time to support all of you again and this time we will include J and Noe in our prayers too. I know that you can do it and I will help you. Momma can call me any time when you are giving her a hard time and I will be there for both of you. I love all of you so much. Love, Grandma Mc.

Jackie @ Our Moments Our Memories said...

I cannot being to imagine how tough this will be for both you and sweet K. I will be praying that a HUGE amount of progress will be made. He is the most amazing little boy, and I know he has such determination in his heart. I only wish I lived closer - I truly would ride along with you on that hour long drive, or bring you dinner on the days that you have to leave, or stay with your other little guys for you. I know you're going to need a lot of support and prayer - we'll be here for you!

BaronessBlack said...

There's a great quote 'There's no short cuts to anywhere worth going!'
We'll all be thinking of and praying for you!
By the way - you're tagged!

Debbie said...

My heart goes out to you while reading this post. I can't imagine how hard it will be for you to not take that cast off and alleviate his frustration. As a mom, we just want to fix everything. I admire you for having the strength to take this step for your child. I will anxious to hear how the journey progresses.

MoziEsmé said...

So well said - your circumstances are maybe more extreme than most, but you've described well the dilemma all moms go through with their kids...