Flashback Sunday

It’s my birthday.

Happy birthday to me!

Well, to be more accurate, it is the 12th anniversary of my 29th birthday. 😉

I’m going to post a few “flashback” pictures.

Because I can.

This is me in 8th grade. I loved that dress!
This in my senior photo. Class of 1989.

 

 
My first true loves. My 65 Mustang and my Pocket Dog. 1990
Me. Age 41.

Wandering Feet

This summer seems endless.

In a Groundhog Day movie kind of way.

Each day is melding into the next. Each day seems to be a repeat of the one before. I’m losing track of what happened, when.

I’m feeling very unsettled and anxious. Plenty of reasons why. There always is.

This summer I am also feeling a bad case of “Wandering Feet”.

It’s time to move. I want to move. Perhaps I even need to move.

Move what you ask? Home.

We are a military family. Military families move. But my desire to move is much more than military.

In my adult life (since age 18) I have moved 18 times.

’89 brown duplex overlooking the town

’90 tiny blue/white house

’91 tiny white house by the railroad tracks

’91 lonely house on the beach

’92 tiny white house

’93 rented a room out on the old highway

’93 second floor apartment

’94 blue house by the railroad tracks

’96 house down the dirt road

’98 rented room in town

’99 little yellow house

’00 tiny A-frame

’01 third floor apartment

’01 house in scary part of town

’02 brick one story

’03 the house I loved the best

’05 duplex we renovated

’07 here

But “here” is not home. Yes, I have been in this one house for 5 years – the longest ever. But it is not home. It is military housing.

Don’t misunderstand, by military housing standards, this is a beautiful house. But it is not mine.

I want a home. I’m ready for a home. I want to plant my wandering feet.

I’m anxious. I’m on edge.

I want to move again.

Home.

Wherever that may be.

Blah

I’m suffering from writers-block.

Or would it be bloggers-block.

Perhaps it’s narcissisticpersonwhothinksthatpeopleactuallyreadtheselfabsorbedcrapIwrite-block.

Whatever.

So today I will share one of my favorite quotes.

Don’t judge each day by the harvest you reap but by the seeds that you plant.  ~Robert Louis Stevenson

And a picture of a bunny with a pancake on its head. Because every day needs more pancakes and bunnies.

What is your favorite quote?

That explains it

Dudes.

No freaken wonder I am so tired.

This is a snippet of Faith’s electronic sleep log. And this is only the times I remembered to hit the “wake” and “sleep” buttons.

This has been going on for years.

And this is the hard copy that we will be keeping for two weeks. It goes to the Sleep Disorder Program. The shaded area is when she was asleep. The non-shaded is when she (we) was awake.

Mom is tired.

More vocabulary words

We had a fun visit at Neurology planned for September. It’s been on the calendar for about a month now.

Yesterday the phone rings.

“Yo, can you make it in tomorrow? At the crack of dawn?”

Ummm…wake up at 5:45am, take a ferry, fight Seattle traffic during rush hour on a weekday?

“Sure!”

Glutton for punishment – reporting for duty!

Today’s Neuro clinic visit broken down: Dr is concerned that Faith’s FMF genetic mutation may not be an isolated issue. Jimmy and I need to undergo DNA testing to see if we are carriers of the “normal” FMF mutation. Even though Faith has the mutation on both sides of her DNA, the Dr is concerned that it is actually part of a larger DNA deletion. Like we took a snapshot of a window that showed a crack in the glass, not realizing that just outside of the picture is shattered glass. He also brought lots of new big words to the table. Like myasthenia gravis.

Oh, and he wants to do a (lack of)sleep study. Can you hear me laughing?

We are running a bunch of bloodwork looking at autoimmune thingies and value-ma-bobs.

(Note – those are not the official medical terms)

This isn’t good news, it isn’t bad news, it’s an ehhhhh. If we hit something with the autoimmune testing or with the myasthenia gravis, then there are some treatments to explore but not guarantees obviously. If we find a larger genetic deletion it will most likely just be a new word to learn and add when talking. 😛

Dr. R is awesome! He is requesting her records from all 4 major medical centers we have been stationed at with her and he is going to put together one long dictation of her history based on records and tests. Then he’s going to send it to us to add in “parental notes” so we have it when we move.

That will be so helpful!

And here is a picture of Faith and her dolly, both sporting bandages.

All together now……awwwwwwww!

Still not the same

When I was growing up, the 4th of July was the holiday. We had BBQ’s, friends, family, pools, drinking adults, unsupervised kids, the lake, and fireworks. Oh the fireworks! The bigger, louder, brighter the better! We lived near a Native American Reservation. Do you know what that meant? Not only did we have fireworks, but we had illegal fireworks and lots of them. None of that “Safe and Sane” crap for our Fourth. We had the kind of fireworks that could blow your hand off. If by some chance we ran out of fireworks, we made our own out of gunpowder and aluminum foil. What? You mean you didn’t? I couldn’t wait to recreate these fun times with my own family.

(Hmmm, now that I’m looking back on this, maybe all that wasn’t such a great idea)

Fast forward 30 years and I am now a mommy to a special needs child. She does not like any bright lights or loud noises. Crowds and “different” foods are triggers of a meltdown. She doesn’t even like being outside for very long. The last time we celebrated the 4th of July was right after she was born, before her aversion to all the above became so apparent.

Our current celebration consists of BBQing at home and sending the older children to various places where they have a chance of seeing fireworks. We try to put Faith to bed early before the loudest BOOM‘s start so she does not get overwhelmed. Then hubby and I sit on our porch and hope for glimpses of other families fireworks.

How have your holiday celebrations changed from what you remember as a child? Any holiday at all. What do you do differently?

The down and dirty

Ok y’all, in this post I am talking about diapers.

I’m also going to complain.

For reals.

When your baby is…well…a baby, you expect to change diapers. It goes with the territory of having a baby. And while it is not anyone favorite thing about having a baby, it is part of the deal. Cute babe, poopy diapers.

It doesn’t matter if you use disposable or cloth, there is still poop to be cleaned off a tiny hiney.

Disposables cost about $60 a month. I’m figuring that on $0.24 a diaper and 8 changes a day. (Amazon – Huggies Size 4 – 140ct Giant pack)

Maybe more, maybe less depending on sales or coupons.

But it ends.

Eventually the baby moves out of diapers and on to scrapped knees and training wheels.

But for some of us, it doesn’t end.

Nine years later there are still diapers to be changed. Bigger diapers. On a much bigger kid.

And just trust me on this one, a 9-year-old poopy diaper is nothing like an infant poopy diaper. Nothing.

I won’t go into “that” side of the issue.

Consider this side of it: $$$$

Once a child hits a certain size, baby diapers/PullUps just don’t work any longer. For us, that was around 60 pounds. Cloth was no longer a viable option at this size either. We were forced to move into “night-time pullups” like GoodNites.

Guess what? We are still at about 8 changes a day.

Suddenly our diaper cost have skyrocketed to $271.20 a MONTH! (Amazon – $1.13 each -Goodnites size L/XL – 21 ct pkg)

Special needs families have so many extra expenses. From special diets due to allergies, to adaptive equipment, to co-pays and therapies.

Having to pay out almost $300 a month on diapers for a child with a medical disability just feels like adding insult to injury.

(I know there are some insurances that DO cover this expense – ours does not.)