Thinking back (long and sappy)

[Guest guest]

I just put Jonathon to bed, he turned 9 today. I started thinking

back about how much our lives have changed since that day. My

daughter Madison had just turned 2 and she was very healthy, we

never visited the doctor's office. Then Jon came, I can remember

spending that first night listening to him breathe loudly due to

what we now know was a blockage in his nose (2 surgeries later and

trips to New York and Cleveland that is now fixed). I told Jon

tonight, I will never forget when he was 6 days old and they told me

something was wrong with him, I cry even at the thought of it. We

spent everyday for almost 15 months weighing, drawing blood,

visiting doctors, cleaning up throw up, or getting blood pressures.

They even had Jon's name on one of the doors at the pediatricians

office designating his room to be measured in. He was pretty

healthy but we were always checking to see why he wouldn't grow....

Jon was diagnosed with RSS by Dr H when he was 15 months old. He

had been misdiagnosed with CAH so it was a process to get him off

some meds and then start treating him for the RSS. I remember

always trying to get him to eat. We would walk the streets of New

York with a baby spoon and a jar of Beef and Potato Dinner! I would

give him a bite at every corner. I'm suprised I didn't just have a

spoon surgically attached to my hand! It was a great day when he

didn't throw up the food that I preciously worked all day to get in

him. I remember the responsibility of feeding him seeming

enormous.

Now fast forward... Jon has been on growth hormone for 5 years. He

is in fourth grade and too smart for his own good and mine. He is

average size as long as you don't lift up his baggy shirt to see his

ribs! His favorite thing for his birthday was picking out the menu

for all three meals of the day. I still nag him a little to make

sure he eats but almost all of the time it's not an issue. He is a

very good piano player and especially loves to play Rag. He loves

NYC, the restaurants, the musicals, the hotels, the lights, and yes

even Dr H. He has a great sense of humor and an amazing quick wit!

I remember at Jon's dedication at church I wrote in his letter that

I now understood that my view of the perfect child was not God's

view. I wanted a child who was perfectly healthy like everyone else

had, but God had other plans. I now can sit back and say Praise God

for his perfect plans..... the people we have met and now call

friends from Magic, the lessons we have learned about compassion and

grace, the opportunities to help others, the times of relying on God

to understand the impossible, the ability to see our children in

their perfection. Life with Jon has been emotionally draining in

everyway, great despair and great joy.

We are all truly lucky that we get to experience life with our RSS

kids in the full spectrum of feelings. CS says that without

experiencing Suffering we have no concept of Joy. So here is to my

son and all of yours for teaching all of us how to weep in sorrow

and leap for Joy.

In honor of Jon's ninth birthday and his many RSS friends.....

Pattie