Re: Thinking back (long and sappy)

[Guest guest]

Hi Pattie,

I just read your message. Wow. That was very touching and brought

tears to my eyes. I am living the ealry part of Jon's life right now

with . You remember seeing us in NY, right? Our rollercoaster

started at the 20 week ultrasound, though. It was on Valentine's

day, 2002. I cried all day and night, and even still some now. I

know everyone keeps saying that it gets better, but that is hard to

understand right now, being in the midst of the hard times.

I am so glad that things are better for you guys right now. Jonathon

sure was a cute, sweet little boy when I met him. Do you wonder

where the nine years went? Pattie, Jon is so lucky to have you.

Your words are great and inspiring. You know what? You need to

print this out and save it for Jonathon. He will be touched by it.

I bet you already have saved it, right? )

Jodi R.

> 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

[Guest guest]

Pattie-

What a wonderful, moving message. Thank you for everything you

said. Jon is so blessed to have such a wonderful mother. Happy 9th

Birthday Jon!

Team Lapish

Jenyfer, Dan, Tully & Pippin (RSS-13mo)