.


I came home from my Spinning Guild meeting to sunshine.  We barely remember sunshine around here.  I took some pictures of the sun-glare just to prove I wasn't dreaming.



This photo made me think of a ship's wheel.  Voyages from front porches with spinning wheels?  I don't know, it's a stretch.  I really need more sunshine.

We are gearing up for another snow storm and gray week so I took another shot of my wheel overexposed in sunlight.



Isn't it odd looking? 

If you have a stressful life and a textile-addiction think about taking up spinning.  As you spin you can think about sheep dotted on a green hill bathed in springtime sunlight. 

If you spin a raw fleece you can even smell the above pictured sun-bathed sheep.... but that's not quite as fun.


.

.

One of the first things I learned after one of our children was diagnosed with a metabolic disorder is to read everything. 

Read everything about the disorder.

Read every doctor report.

Read every lab report.

Read every hospital visit summary.

Read the label on every I.V. bag placed on my child's pole.

It's amazing how much you can learn and at the same time scary to see how easily mistakes are almost made.

Yet, last August, when we switched pharamcies in order to have two medications compounded into one formula I neglected somewhere along the way to re-read the medication info.  We've been getting a 3 month supply of our son's medicine UPS-ed to our house every 3 months.  Makes sense.  After all, the doctor prescribes it in 3 month amounts and it saves us money on both the copay and the shipping.

Today I opened the new shipment.  It had new, more colorful labels that caught my attention.  I was waiting for pasta to come to a boil so I read the entire bottle.  My son's 3 month supply expires in 1 month. 

Argghhh. 

The pharmacist was lovely and appalled.  He's says it's the interaction of the two meds. that have changed the expiration date...

I'm re-reminding myself, it's my job as the parent to be my child's advocate, and safety expert.

Read, Read, Read!


.


.

.

.


My 19 year old son is leaving soon for an internship in Haiti.  He'll be doing construction and working at an orphanage for several months. 

I headed off to try to find some lightweight clothing suitable for the Caribbean rainy season.  Hmmmm, not much available around here this time of year, especially not at the cheaper stores.  I found myself at an outdoorsy shop buying permethrin and mosquito netting and some clothing.

Spf 50 shirts and pants that can be washed in a sink and trusted to drip dry overnight. Shirts and pants that are lightweight and vented, and promise not to hold odor.  Clothing that rolls up into the smallest of bags and come out unwrinkled.

In other words, clothing that is Not Cheap.

My son, who hates spending money, who- with the exception of Converse sneakers- could care less about fashion, and who prefers getting his clothing at GoodWill,  spent more on one outfit than he's ever spent on one outfit before.

The irony was not lost on us.  The blessing of being able to go to a store and buy clothing that will keep him healthy and comfortable was also not lost on us.

Hopefully, in Haiti, the blessing of being odorless will not be lost on the people he works alongside.



.

.

My husband got the film, Russian Arc.  It was filmed in the Hermitage Museum, St Petersburg.  It is touted as being filmed in one take- no cuts at all.  My 18 year old son and husband were skeptical, they had to watch for themselves.  Evidently their conversation was attended to much more closely by both our younger sons.

It was akin to a sporting event.  All males in the family, even the 3 year old, sat to watch this Russian language- subtitle only film, in order to find cuts.

Anytime the movie panned to a dark corner as the camera swept through the corridors of the Hermitage my 4 year old, completely caught up in the spirit of cynicism would yell, "I See A Cut!"

We are weird.





 

.


This morning my 4 1/2 year old son pulled on a pair of pants that fit 5 minutes ago.

They are two inches too short.

My heart aches with joy.

This isn't the normal sweet joy of a mom watching her sturdy toddler stretch into a skinny young child.  It's a victory dance of joyful thankfulness.

It's hard to explain. 
This child of mine, is a child I've watched slip into unconsciousness.  This child of mine, with FOD, is a child to whom any growth spurt is a dangerous time of possible metabolic decompensation.  The phrase "growing pains" takes on a whole new meaning with this child. 

However this child of mine is busy lasso'ing his brother with a yo-yo while pulling on above mentioned too-short jeans.This child of mine is alive.  Alive and growing.  Alive and growing well.

I have to admit today's joy is still tinged with a hint of sadness and even fear for his future medical unknowns. - but those are my growing pains, spiritual not physical.

To any parent dealing with a child's chronic illness, growing pains hurt.  But with faith, in my experience, the sadness is slowly tinged with joy and then the joy grows until it is joy tinged with sadness.

What happens next I don't know.  I'm not there yet.  But, "I can do all things through him who strengthens me."- Philippians 4:13  So I know I'll have more growing pains... and in the end,
that's a good thing.







.