On this day two years ago we were still reeling from the tornado, staying with my husbands family trying to get a grasp on what we were supposed to do. Just thinking about it makes me feel a little bit nauseous. I remember the phone call. It was almost bedtime for the girls, I remember Nicholas answering and passing me the phone. I quietly retreated to my in-laws bedroom for privacy and he went out to the living room to entertain the girls. Dr.Renaud knew about the tornado though I don't remember how she knew. She played a sort of guessing game with me as to what I thought the results of Ellie's genetic test for Rett were, which I thought was strange at the time (actually I still think it was strange.) I tried to convince myself that they must be negative since she was being so lighthearted about it. I remember her apologizing just before she told me the result was positive, saying how she knew it couldn't come at a worse time. I'm not sure how but I held myself together. I asked questions, scheduled a visit for the next week to discuss the diagnosis and prognosis. As I hung up the phone I sunk into the corner of the bedroom and the flood of tears began. Nicholas was on the other side of the wall, his entire family just steps away, our girls...our Ellie playing just outside the bedroom. I felt so alone, so isolated and forgotten. The information I'd read spun in my head reminding me of the "phases" and the future prognosis. I was so literally crushed in spirit. April 2011 was definitely a time when we "fell into the ashes" as the song below says.
Since 2011, we've "made a new beginning." We launched ourselves into cleanup mode literally and emotionally. We have spent the last two years working with specialists, therapists, doctors, teachers and parents to ensure that we're doing everything we can to maintain Ellie's good health and to push her to achieve new milestones.
In the last year, Ellie's learned to read and spell words. She can successfully match words that she's practiced making to pictures showing us that she can read the word and understand it's meaning. She's made wonderful progress using her speech device (EchoPoint2) and routinely tells us how she's feeling. (We're beginning to remember the "spunk" Emma started to display around this age!) For example, telling her PT (as she entered the room) that she was "Done...Ready to go home... Frustrated." Gotta love that kind of hear-felt message!!
Ellie also learned to ride a bike this winter. It's a really awesome adapted tricycle! After half a dozen sessions practicing riding in the hospital hallway, she's doing really great and ready for spring to come so she can break it in on the bike-trail!
We continue to hope and pray that a cure is on the horizon. We live our lives to their fullest knowing that every day for each of us is nothing short of a gift. The last two years have changed us, have shown us things we otherwise wouldn't/couldn't have seen. I shake my head thinking about how crushed I felt then and how I can see now that it was a necessary part of our journey. God has used life to mold and shape our entire family. I really feel that without being so broken we wouldn't have agreed to take the journey he had ahead of us.
After the tornado and Ellie's diagnosis, as people came to our side to help, we vowed to turn their giving of time and resources into blessings for others. In 2011, we received a settlement from our insurance company on our house (the only part of our farm that was insured.) We opted to pay off our farm, fix our house over time, and turn that equity into rental properties that we could fix and rent reasonably to people who needed quality, affordable housing. Since 2011, we have purchased an apartment building and a couple houses (all that needed a LOT of work!) We've used these properties to support and minister to people who were still in the "ashes." I can't tell you the joy I find in seeing a family move from our apartments into a house (one that they can afford!!) Getting to be a part of their "new beginning" is truly a blessing for all of our family. It's fun to work when you can watch that work turn into a blessing for another family. I have found the greatest blessings in teaching skills to newcomers, as they work off their rent working on a house/apartment that another family will soon occupy. The relationships being built have grown so fast and so deeply that I can't begin to explain here. I simply want all of you to know that your help to our family, when we were in "the ashes," didn't stop with us... it's still moving forward. What a gift your love has given and that's the way it's supposed to be.
Kutless, "That's What Faith Can Do".
Here are the lyrics:
What Faith Can Do
Everybody falls sometimes
Gotta find the strength to rise
From the ashes
And make a new beginning
Anyone can feel the ache
You think it's more than you can take
But you're stronger
Stronger than you know
Don't you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
It doesn't matter what you've heard
Impossible is not a word
It's just a reason
For someone not to try
Everybody's scared to death
When they decide to take that step
Out on the water
It'll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
Overcome the odds
You don't have a chance
(That's what faith can do)
When the world says you can't
It'll tell you that you can
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
That's what faith can do
Even if you fall sometimes
You will have the strength to rise
Gotta find the strength to rise
From the ashes
And make a new beginning
Anyone can feel the ache
You think it's more than you can take
But you're stronger
Stronger than you know
Don't you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
It doesn't matter what you've heard
Impossible is not a word
It's just a reason
For someone not to try
Everybody's scared to death
When they decide to take that step
Out on the water
It'll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
Overcome the odds
You don't have a chance
(That's what faith can do)
When the world says you can't
It'll tell you that you can
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
That's what faith can do
Even if you fall sometimes
You will have the strength to rise
