Wednesday, March 30, 2011

Used to what?

Christian displaying his new sleepy eye

A new calm seems to have come over our house. I know that many parents told Chris and I when Christian was first diagnosed that things will get better, or maybe they said we would get ‘used to it’.  So I guess we have gotten used to it. Whatever IT is. Is it getting used to giving my son needles everyday? Is it getting used to cleaning the tubes coming out of his chest? I have gotten used to telling him to wash his hands everywhere we go and Christian has gotten used to me telling him not to touch anything or anybody.  Is it getting used to the disappointment in his face when he realizes its medicine time or is it getting used to the weekly trips to the hospital?  Sometimes life seems so normal then WHAMMOOOO you realize nothing is as it was and probably will never be again.   Tonight after we had dinner (thanks Margie) we decided to take Evelyn and Ryan for a swim – trying to lure them to sleep! So I spoke in Evelyn’s direction, “Do you want to go to the pool?” And Christian looked at me and said, “I want to go to the pool.” The saddest part about it was that he already knew the answer and was defeated before he even finished his sentence. I realized right then and there that there would be some things I will NEVER get used to.

I feel sad when I think that this is how he is going to spend his third year of life.  A time when I expected to be signing him up for preschool and watching him stretch out and become a little boy. Well preschool is certainly out of the picture but curiously he is still becoming the most amazing little boy. He loves his brother and sister to death and he has such courage and understanding.  Maybe these are some of the lessons that he was meant to learn this year. A different sort of preschool. We will call it prelife…..lessons that I pray he takes to adulthood. Lessons I hope he can use to better himself and the people he surrounds himself with. Lessons we are all still trying to figure out as adults.

So this calm in our house is real but I fear it is the calm before the storm as we look ahead to his cancer restaging CT scan. As we look forward to his daily radiation and the potential for a surgery.  I have accepted this new life, its different but its ours so I'll take it.
Crowell family at the "Top of the World"
Craziest 2 year old in the books

Today I am thankful for:
1.                 1. Chocolate cake
2.                 2.  Warm spring days
3.                  3 The fresh smell of my kids skin after being out for a walk

Ryan loved his first spring walk


  1. It's easy for well-meaning people to say the things they say b/c they don't know WHAT to say---b/c you just can't say much if you've never been there, yourself. That said, one thing I can do is pray b/c HE knows how you feel & He is the One who can bring true & lasting peace in the midst of the worst of storms.

  2. Hi Megan - our mutual friend Joan shared your blog link and I just want you to know that a lot of people have been praying for your family and your sweet little boy.