Oct 18, 2011

The Making Of A Miracle - Part 6

Recap from last post:
* I looked like a crazy woman. got mad, blurted a declaration that my child was royalty. 
* Asked for what Lindsay deserved and received it.
* Lived normal life with LOADS of ups and downs in between.
* Had a card... stuffed it in the drawer. Out of sight, out of mind.
* My husband heard something strange and unusual from God and stuffed it into his calendar. Out of sight, out of mind.

The new funding that had now been granted to Lindsay allowed us to live our "normal" life with Sweet Pea. Appointments, therapy, drugs, special feedings every 4 hours, midnight diaper changes, drives in the car - to stop the yelling and keep her calm, booking respite workers so I could get groceries or go out with the family... you know, the normal kind of stuff.

Even though we had this financial provision designated for workers for Lindsay, I could only find one worker. She was a gem, and became one of the family, but one worker was not enough to meet all of Lindsay's needs.

We managed well until March Break. In BC, March Break meant 2 weeks of no school program or stimulus for Lindsay. Those were 2 REALLY long weeks. Most families are off skiing, or playing in the snow or visiting family.  I was trying to find a way to keep sane for 2 weeks while sitting with her as she watched endless hours of Barney. The days were long for her too. When they are long... she starts yelling. She's a smart little thing. If she's bored, she yells, and due to the volume of the yell, someone always comes running! Who needs a bell to ding for service when you have a scream like hers!

I've never been able to figure out how this child, who cannot talk or eat food can manage to have such a ear piercing scream... it's a mystery, and one that makes me laugh and requires a huge amount of grace.

One of those long days, I sat at my desk and my mind began to wander to the summer that would be upon us in only a few short months. Summers were always a challenge for me, Sweet Pea and our entire family. We did not have the luxury of being spontaneous, or having lazy summer days. The first consideration was always:

How can we manage Lindsay today? What will help her be happy and safe?(not restless and yelling).

In Ontario, I had the privilege of working with a government team to establish a day camp for severely delayed children who also had significant medical needs. This created a safe place of stimulus and interaction for many children and respite for the parents. It was a GOD SEND.

Kelowna had NO summer day program for any special needs children, let alone for the high needs that Lindsay had. I would have to come up with my own plan, and limit my respite hours due to the high cost of 1:1 care. Just the thought of it made me feel like I was slipping into a deep dark hole of despair. All of a sudden the past 16 years of care seemed to rumbled down on me like a huge avalanche. I was felt like it was getting harder to find air to breathe, to see the light of day, to survive.

I used to try to find ways to make the best of situations, arrange as best I could and be grateful as I went along.

Today I didn't feel grateful. I felt exhausted. I felt like I was smothering under a huge amount of weight.

I don't think I can do this much more!  I muttered to myself. I'd heard myself say this many a time. Except this time felt different. I felt like all the air had been released out a hot air balloon called my spirit or will.

Buck it up princess.. you can get through this.

And then a moment later:

How am I going to keep doing this? How am I going to get through this summer?

It felt overwhelming. (more than other years).
I needed some help. I felt like I needed a boat load of help.

There must be some help somewhere out there! Somewhere that I hadn't already looked into. 

So far the search had turned up empty.
I would just have to keep looking.

There must be some respite homes or something in this city that I could access and use this funding for day programs for Lindsay, if even for a day or two a week!
I don't even know of any respite or group homes...I don't know anyone here in the system, where on earth would I start? 

That's when I remembered the card that my dad gave me. I carefully opened each drawer, scouring for this little piece of paper.  

Where did I put it? Was it still here? Maybe I threw it out.

That day my drawers got an unexpected spring cleaning, and I found the hidden treasure.

Hmmm, well, maybe I can call this man in Abbotsford and he can recommend a lead.
No harm in asking. And I'm desperate.
Ingredient #5 for a miracle:
Ask and seek

Sometimes miracles hide.

More coming tomorrow.
(Stay with me! I promise it will be worth the wait!)

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