Tuesday, October 29, 2013

Overcoming...Take that Rett!

I'm listening now to Mandisa's song "Overcomer" and it spurred me to come blog. An update is definitely long overdue. I find that we're already almost to November, fall really is beautiful in this part of the country. In spite of that sinking feeling that the snow and winds will soon be swirling outside, we have joy in the season we are in.

Ellie had a summer of change, of growing up, of putting things behind us, in the most joyous way possible. Not to say that change doesn't come hard, actually, really, really hard. We decided to learn how to use the toilet this summer. No small task for a girl who's body isn't 100% obedient to her commands. No small task for a daughter, equally as stubborn as her mother. Probably the most trying times we've had in our 7 years together, were had this summer. I can smile and laugh about it now, because we won and that made it all worth it.

Ellie has learned to use the toilet all the time, which is nothing short of a miracle. A blessing straight from God, really. We are overcomers! Whooo hooo! (Yes, I say that with a fisted arm-pump!)

Ellie also learned to ride her adapted tricycle, independantly. She rode 2 miles one night and followed that up by being the STAR of the 4th of July parade on her bike. I am so proud of the way she's overcome her body. So proud of the way that she's kicked Rett in the teeth and learned to do what she "shouldn't" be able to do. She's now showing her little sister what kindergarten is all about. Eva's flourishing in kindergarten, especially with such an experienced and competent guide. We requested that Ellie stay in kindergarten this year to work on her number sense and give her a little more time to develop her math skills before putting her into first grade. This means that Ellie (who's 7 now) and Eva (who is now 5) are both in kindergarten. It's been a great choice. We feel so so blessed by the women God has placed in this environment for both our girls. Emma is enjoying the freedom. flexibility, and one on one time of being home-schooled for 4th grade.

The girls are all having a great time announcing to anyone who will listen that they're soon going to have a baby in their house! We're due March 17 with baby number 4. :) They got to watch our little one on the ultrasound and take home little keepsake pictures. Ellie keeps reminding me of saying "mama mama" and pointing to my (growing) belly and then pointing to her feet. One of the pictures from the ultrasound clearly shows our little one's feet and toes as if pressed up against the screen. It's had an impression on her. I'm praying she's at doting once baby arrives, as she is now!! She's not known for her gentleness.

So much change in such a short time. All blessings and all things to be thankful and joyous about! I pray your fall is equally "full."

~Angie



Thursday, April 18, 2013

From the Ashes

Today's a special anniversary for our family, which means I should blog right?! I mean it's only been like 6 months!

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