Thursday, April 30, 2009
For some reason I'm having a really hard time writing this post. I've been working on it for the last two days and I haven't gotten much farther than this sentence. I don't know if its nerves, confusion...or just the inability to put into words what my heart is experiencing. (sigh) I'm going to go ahead and give it a try anyway...but don't blame me if it makes your head hurt. Or your heart. When we brought Maddie home from Ukraine 14 months ago, we did so knowing absolutely nothing about raising a child with a hearing disability. In December 2007, we left the U.S. bound for Ukraine with the hope and expectation of bringing home a healthy child. We are returning to our house and a town we can call home...
We're permanently altering our youngest daughter's life.
I just hope we don't live to regret it.
One with no physical issues...
So when (after three LONG weeks) we finally found our little girl, fell in love at first sight and made her our daughter a month later, despite her lack of ears and limited hearing, it was with a great deal of naivete. We innocently figured we'd get her some hearing aids, maybe reconstruct her ears...and whaaalaa...six months later she'd be speaking like a native.
We were wrong.
Despite the incredible amount of progress Maddie has made in the last year, the truth is she is very nearly deaf. Even with her hearing aids she has limitations to what she can hear. She is learning more and more English every day, but she still has a long road in front of her...one with incredibly high hurdles to overcome.
She has to learn to listen to individual speech sounds...just like an infant.
She has to learn how to make those speech sounds...but again she's woefully behind.
She has a whole new language to learn...something she's working hard on, but is only now starting to make real progress on. Her sentences still sound an awful lot like a two year old.
And she has a lot of concepts to pick up on. Learning above and below...up and down...in and out. All of these things are new, and when you're trying to learn a language AND concepts at the same time it can get awfully confusing.
Before moving to Grab-Your-Lasso Shad and I were novices in this special needs parenting stuff. The only special services we had dealt with were limited to simple speech issues - ones we knew were completely correctable. So being the naive new parents we were, we waited to have Maddie developmentally tested. At first because of all of the upheaval in her life - we wanted to wait for things to settle a bit.
And then came the move.
When the dust finally settled we found ourselves in Grab-Your-Lasso with what can only be described as the best possible situation for our little girl. Its as if God placed us at this time, in this place, so Maddie could get the help she so desperately needed...and so rightly deserved.
Of course we didn't realize it at first. We drug our feet in putting her into school, wanting to work on our bonding...not wanting to give up that precious time. And it worked. Maddie slowly started losing her PI 'left-overs' and started accepting us as her parents.
And eventually we started to get the picture this school district - even this state - were miles ahead of their neighbors in reaching out to hard-of-hearing children and their families. They understood the struggles we were going through and they were willing to learn all about the post-institutionalized issues Maddie had...and they were happy to work with us.
So in January we made the decision to put her into school full time.
It was the best decision we could have made.
She has blossomed in her preschool - she's made friends, learned all kinds of academic things and her speech has improved dramatically.
It is amazing how life-changing the decision to move to Grab-Your-Lasso turned out to be for our Maddie. Which is surprising since when we moved to Grab-Your-Lasso eight months ago, Shad and I had big dreams...and it had nothing to do with Maddie's education. We figured all school districts were pretty much the same.
We were moving here to help our parents. Both sets have had serious medical issues in the recent years and we felt (as the oldest children) that we needed to take on that responsibility and joy.
And there were other, more selfish reasons for coming back.
We wanted to take advantage of the scenery. We are minutes away from the mountains. We can be sitting in our family room one minute and up on a mountain top next to a stream fishing a few minutes later. And each morning on the drive to school, the kids and I can see the majestic mountains God created and wonder at their beauty.
We wanted our children to grow up knowing...truly knowing, their grandparents...spending holidays, birthdays and anniversaries with them. Having someone besides mom and dad cheering them on in baseball or listening to their Bible verse for AWANA, knowing they're spending quality time with Papas and Grandmas during this formative time in their lives - watching the witness their Grandparents lives exhibit and learning about God through their stories.
Now, those dreams have died.
The economic situation has made it impossible for us to stay here.
So...we're moving back to Kansas.
To say this has been a hard decision is putting it mildly. We have agonized over this decision like we have never done before.
We've spent weeks upon months hashing this out. Aruging, discussing, crying and begging - with each other and with God...but in the end we had no choice.
It feels like we're being pushed away.
I still haven't found a job.
The house in Kansas isn't selling.
Shad's job is getting more tenuous all the time...
And finacially things are getting more and more scary.
In Kansas, his job is still open.
We'll have health insurance. (PTL!)
He'll have more time off.
And financially we'll be in much better shape.
But emotionally we'll be a wreck.
So much has gone into this decision.
So much thought.
So much analysis.
So much prayer.
So many things that I'm not even sure I can explain.
A part of us feels like we've failed. Failed our parents, failed the kids, failed ourselves...
Failed our God.
We're going back to Kansas without having fulfilled the dreams we dreamed.
What is bringing us to our knees in this decision, though, is Maddie.
What are we doing?
What loving parents, in their right mind, would knowingly take their child away from what could be their best and brightest opportunity at leading a normal life?
Its killing us.
We know from experience the school district we will be moving back into won't be able to meet all of Maddie's needs...regardless of what is in her IEP. I can push and prod, nag and needle, berate and bug until my head explodes, but its not going to change the fact that this district has limited resources.
They can only do so much.
I have already been in touch with them and they're saying all the right things...and knowing these people as I do, I know their hearts are in the right place...but the truth is...
Its not Grab-Your-Lasso.
Its the Emerald City...and despite their best of intentions they're not going to be able to meet the incredibly high standards we're now used to.
Sure...we can keep working with Maddie on our own.
And we will.
And we'll keep nagging the district to get her the help she needs...and we'll make sure we do as much as we possibly can, but the truth is we'll always be haunted by what could have been.
If we would put that much energy into helping her, here in Grab-Your-Lasso, how much MORE progress could she have made? How much easier would it have been on her?
If I would have sent out another resume would it have made a difference??
If we would have stayed in the Emerald City a little longer would it have mattered?
If we could have cut our budget even tighter, lived in a two-bedroom apartment and sold all our belongings, could we have held out?
We may never know.
I've experienced mommy-guilt before. I've agonized over our decision to go ahead and send Alek to kindergarten instead of holding him back a year. We've regretted not pushing to get tubes put in Anya's ears two years before it was done. And we've second-guessed how we've handled Nick's strong-willed attitude.
At times its been some pretty weighty guilt.
But nothing like this.
This is life-altering stuff.
Sending Alek to school instead of holding him back hasn't negatively affected him.
Anya has bounced back from her speech issues brought on by her ear infections.
And Nick will be strong-willed no matter what I do. ;>)
But Maddie is different.
She has so many strikes against her already - and this is the kind of stuff that can alter the course of her life.
It will determine whether she enjoys school or not.
Whether she has a successful school career or not.
What she ends up doing with the REST. OF. HER. LIFE.
For those of you who are saying, 'Oh, you're over-exaggerating. She'll be fine. You'll work hard, and she'll make the most of it...'
You just don't get it - and I doubt you ever will.
Its tough stuff raising kids...and its even tougher raising a child with special needs when you have no idea what you're doing.
Shad is returning to the job and the people he loves.
The kids are going back to their friends and school they adore...
And we are all returning to our church family - the brothers and sisters who helped us in our search for Maddie, guided us in our quest to become stronger in our faith and love us unconditionally.
We're going home...we're moving back to the great state of Kansas.
But we're also permanently altering our youngest daughter's life.
I just hope we don't live to regret it.
When we brought Maddie home from Ukraine 14 months ago, we did so knowing absolutely nothing about raising a child with a hearing disability. In December 2007, we left the U.S. bound for Ukraine with the hope and expectation of bringing home a healthy child.
We are returning to our house and a town we can call home...