Thursday, February 26, 2015

"Do you ever wonder why (your baby was born so soon)?"

Father and son
Copyright held by the author. Do not reproduce without permission.
Last week Steve and I met a retired pastor. In the course of our conversation, he learned about our son’s ridiculously early birth and subsequent struggles.

“When you think about your son, do you ever wonder, WHY?” he asked.

“For every 'why,' there are twenty-three 'thank you's,” Steve responded.


My answer would have been, “Yes. I often wrestle with the ‘why.’ Why is he alive? Why can he see and hear and speak?  Why can he walk and talk and play and make jokes? Nearly every day I wonder why.”

I'm grateful my life partner is so much more eloquent (and concise!) than I.

To celebrate Steve’s twenty-three “thank-you”s (I never did hear what they were), here are twenty-three of my own.

1. Thank you for life through the night
2. For the opening of eyes and the ability to see
3. For plastic tubes and life-saving bleeps
4. For doctors and nurses
5. For breast milk
6. For the ability to hold one’s child
7. For the sound of a squeak of a cry
8. For kidneys that work
9. For intestines that digest
10. For therapists that understand and care
11. For laughing and smiles
12. For two staples and a scalpel used to heal a broken heart
13. For family and friends that stay away when sick
14. For family and friends that cleaned and cared and cooked when they were well
15. For PICC and central lines so that pokes are no longer needed
16. For brains and bodies that can get stronger – even if it takes hours of therapy
17. For the groaned prayers and lit candles of friends around the world
18. For the good sense to catch oneself when one falls – thanks for the vestibular system
19. For walking, and the tools that makes it possible
20. For talking, even if mumbled words
21. For peace beyond understanding when things are uncertain, and the comfort provided by sympathetic friends
22. For perseverance
23. For a chance

What are your "why"s and your "thank you"s?

Friday, February 20, 2015

This weather has got to go

Let's be honest.

I've not seen the sun for more than moments in two months. My doc was so alarmed by my vitamin D deficiency that she called a prescription dose of it in to the pharmacy. I've gone to events just for the purpose of getting out of the house. I spend hours trying to get the online system from J's hospital to work so that I can read his test results as he struggles with morning lethargy and vomiting.

The system still doesn't work. I even called their support services. Turns out that when I click on labs, it tries to send me all the labs at once. With a kid like him, that's enough to cause any computer to time-out.

I told a doctor friend about the new tests JAM was getting. He immediately understood what the endocrinologists are testing for, so he gave me a new term and enough information for me to start on an online search of medical journals for answers again. I know I shouldn't. I know I should just wait. But information seeking is cathartic for me. It tells me what I know and what I don't yet understand. And I still don't understand JAM. Again we wait in the hard limbo of wanting answers and not wanting THESE answers.

I worry and I cry and I am ready for the cold winter to be over.

I am still glad he's in isolation.

But being a parent of a medically complex child is difficult. JAM is a delight. The cares and worries that surround him are worth it.

We're used to all the other stuff now. now. We don't bat an eyelash when we have to take out an emesis bag after he's stuck with a needle. We aren't afraid of gavaging in public. Getting blood draws is still hard, but we've toughened for the most part. Two times ago, J actually just sat and watched as they drew the blood. A squeak at the needle poke was his only protest. Last time they missed on the first try, so they had to draw blood again, and he wasn't so happy.  As they searched for a second vein, he wailed "AGAAAIN!?" and proceeded with crying and "mommy! ba-ba! [bad, bad]"

It is hard, but it is worth it. We are waiting for answers again, and my soul's as cloudy as our sunless sky.


for the sun to come out again.
Storms always come
but they blow away with the wind.
for the sun is coming again...