Tuesday, July 6, 2010

Sometimes it just sneaks in

When your child is born you are full of hopes and dreams for that little 1 min old child. You make plans, and then some doctor takes all those dreams away. Or that is what is feels like anyway. I want to be that family that has is altogether and moves on with life. I try my best to be that. And 90% of the time I would say that I never even think about those two words that have changed my life forever. Most days we just live our lives.

Yes, some of our dreams for our children and our family have changed but 90% of the time we just live life and move on with our new dreams. The funny thing is, they aren't plan B dreams. They are just new dreams that I never knew, I always wanted. My life is happy, my child is happy... I am happy. But there is that 10% of the time, where those 2 words sneak in....Cerebral Palsy. In those short seconds of time, you are brought back to when the rug was pulled out from under your world. In those brief moments, you wonder " what would our life look like right now if..."

Well this weekend I had one of those 10% days. We had the BEST time at my parents campsite on the 4th of July. All of our family was there, the weather was perfect and it was so much fun. We grilled, swam and made s'mores. It was the perfect 4th of July festivities. Except for those 2 words that sometimes float over me and attack. I was having such a great time with my family, and those 2 ugly words came to my mind while I was watching my nephews fly down the hill on their razor scooters. They were laughing and having a great time and my mind jumped to the
"If James didn't have Cerebral Palsy he would be doing that right with them" It is just a moment, a blink, but in that blink my heart falls 10 stories to the pavement below. I find myself watching typically developing children and wondering what James would look like doing those activities. I see a glimpse of the "What if world" and I want to fall apart. That is not an option for me because it is only a blink. By the next breath I have to bring myself back and move on because James needs me. James needs me to dream BIG and be his advocate, and expect success from him.

Then I come back to the 90% of my life. And this Life is wonderful. I have a son that I love more that the air I breathe. He is so happy and fills my life with such joy. The dreams I have for him are SO BIG!! And I do expect GREAT things from this little guy. He has proven to many wrong over his little life, and even though I got his "evaluation" today that belongs in that 10% of my life. I am going to keep if right there and not let it creep into my 90%. I don't agree with many things on that form. I know my son will do great things in his life.

I am SO happy that God has allowed me the opportunity to raise James and be witness to miracles here on earth. So even though there is a 10% that sometimes follows me and tries to steal my joy........ I choose to live my life in the 90% today and be happy that I have a sweet beautiful son that is doing so well and is such a joy!


Melissa Kelly

As I read your post today, I'm crying. This is so true. Kensley was one of those kids who enjoyed life to the fullest and in an instant that was taken away from her and I guess I dwell on those thoughts way more than I should, but today you have put things back in to perspective for me. Thank You for that, you are an inspiration to us all. I'm so glad James is doing well.


You two precious mothers bring tears - and hope - to my heart. The scripture says in the 1st chapter of II Corinthians: "Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God." He showed me one time that my heartache was truly worth it, if by suffering through it and coming up smiling (at least some of the time!)it gave courage to someone who would have to walk that road of heartbreak behind me. He comforted me. When no man could. And then He allowed me to meet someone else who had suffered as I had suffered - and I saw they had endured and they had joy. And that gave me hope. And so on. . .and so on. What a perfect plan He has! My heart breaks for your grief - and rejoices in the comfort you receive and the consolation you give to your sisters in pain. Bless you both. May there be healing for your children, and peace and comfort in knowing the enormous gift of hope you give as you now comfort those around you "who are in any trouble. . ."

Sarita Boyette

I was looking at your blog and reading your joys and sorrows about your son's CP, and I wonderd if you have ever read the 2 Karen books, by Marie Killilea. They are old books written a long time ago. Marie's daughter, Karen, had CP and the stories are of the family's struggles to get the proper care for Karen, and even finding out what was affecting her. Marie & her family were strong advocates for Karen, like you are for James. The books are inspirational, and I have read them many times. God bless you as you go through this journey with your son.

Sweet Baby James

I hope that by blogging my thoughts may they be highs or lows that someone else will not feel alone in thier own struggles. Melissa I know you understand exactly where my heart is. Your rejoice in the gift of life but yet you cant help but grieve the lost of what you thought your life would look like.

Sherill, your words are such comfort Thank you!
Sarita- I havent read those books but I will be looking them up right now Thank you!


I am new to your blog, just wanted to ask a couple of questions. At what age did James start to sit and what age did he do the SDR surgery.
One of my twin sons has CP and at 16 months is unable to sit or stand unassisted.


Mary Ellen, I love to read your blog because I see into your heart in a way that our everyday conversations don't allow. You have a gift for expressing your thoughts and I am blessed to have you as my daughter. I not only ache for James but for you, my daughter, who has wanted a child of her own since she was 6 yrs. old. Watching you parent James fills me with joy but also sadness in that I can't "fix" this, I can't make you sleep, I can't help you carry James, I can't do those things you do everyday of your life often to the detriment of your own health. I too, have those moments of "What if" but if I allow myself to dwell there it steals my joy for "What is". And "WHat is" brings me great joy and pride. I pray for you every day of my life and love you with all my heart!

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