With Jack not receiving chemo this week I am totally cherishing the freedom from stress. Its wonderful, its like a vacation! Today was his enzyme infusion and it was such a simple task compared to last week 4 days of chemo plus enzyme plus a handful of yukky drugs (steroids). Instead of manic mom this week I’m focusing on being a present mom , the greatest gift you can give a child. It’s fun to dance, sing, read books, build towers, do puzzles, and art with your children. So much fun!
I can feel alive once I eliminate all of the pokes, prods, throw-up pans, counter full of meds after meds after meds, collection of urine samples, labs to be ran, medical supplies consuming every area if my space, alarms and beeps to remind me to take out this drug, time to flush, time for push, time to remember something… Ah its gone this week, making room in my heart and schedule to play, to write a couple Christmas cards, make a phone call or two to friends, cook something new, read a book, chat with the neighbor, and so on. It feels good. And I remind myself that this chemo
stuff
will soon pass and good things await.
Till next week I remain alive which makes it easier to see and celebrate how far Jack has come. He continues to improve with his speech and language. He is tackling the stairs with one hand assist. And the big news…drum roll he has said
potty
four days in a row and then preformed. Exciting stuff!
Here's Jack! 
Jamie, you inspire me. Thank you. Be present. Deep breaths… Love you.
Your post is right on the mark. Our children are soooo special to us. People who have never been in this position can never REALLY know how difficult and self sacrificing having a child like Jack can be. You wouldn’t trade him for the world, as I would not Jarrett. I am glad you had a little vacation away from the hospital, as I am sure you needed it as well as Jack. God gave this special little man to you for a reason, and knew that you would take wonderful care of him, love him, never resent him, and would make him the center of your world. Continue to be strong my friend.
Reading your posts is inspiring and heart warming and heart wrenching all at the same time. Finally having a son and knowing the depth of love that brings, I have no clue where you find the courage to be so strong. I suppose it comes directly from that love. Little Jake just had his first fever last week and that alone worried so much I was sick about it. When he got his four month shots and cried, I was silently crying so hard I couldn’t speak to soothe him. What you all go through day in and day out is just too much, yet you do it with grace. I hope this new year brings you some peace. You are an amazing family and I am humbled by your story.