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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.

We're 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.
One with no physical issues...
No limitations...
No surprises.
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.
So, yes...

Shad is returning to the job and the people he loves.
The kids are going back to their friends and school they adore...

We are returning to our house and a town we can call home...
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.

32 salty messages:

Lorraine April 30, 2009 at 3:25 PM  

I have special needs children too. I remember agonizing when my daughter was just a year old over whether or not to amputate her foot. Once we did it there was no turning back. We also agonized over a move farther from her specialists. Here is the thing to remember, God loves your precious little girl even more than than you do and even though you can't see it now, He has a plan for her. When he makes the plans, they turn out better than we can imagine. He is still in charge. I will be praying for you guys as you deal with this stuff.

Bethany April 30, 2009 at 3:52 PM  

Oh, Tami, I'm so sorry that you have to go through so much agony. It will work out, but not just because you all will work hard. It will work out because you are loving parents, who have loving parents, and specifically, a VERY loving, and all-knowing parent. You are not failures. It's just that your plans didn't fit with His. I know how hard it is to step off into the abyss without knowing how you'll be caught. But you will, and you all will be successful in Kansas. Just send those kids to Mizzou and they'll really take off!

jessy April 30, 2009 at 4:08 PM  

Aww, honey, I know this is hard. We had to move Cara away from Texas Children's--THE nation's leader for her disease (maybe the world's)--just a month after her diagnosis. Her new doctors are doing a good job, but it is not the same. I probably would not have noticed anything amiss, had I not gone to TCH first. But once you've had the best....
I agree with the first commentor. You have to walk in the light you have.

Diana April 30, 2009 at 4:11 PM  

I know this has been an agonizing decision for you. I'm sorry it's still so hard for you to see the light on this one. There are no easy answers to it. Just know that you haven't failed. Like I've said before, sometimes you have to walk in the dark before you can see the light. Perhaps your purpose in Grab Your Lasso was to see what is possible for Maddie. Now that the decison has been made to move back to Kansas, just move forward and don't look back. You can't or you'll go crazy! My prayers are still with you :-).

p.s. I hope I didn't scare you or offend you. If I did, I'm sorry. I still think you're awesome :0)

mrsbroccoliguy April 30, 2009 at 4:33 PM  

Oh Tami,

I can only imagine how difficult this decision was for your family. After you made all the effort to move and worked so hard to make it home. I'm so sorry it didn't work out the way you hoped and expected. I have to think there was a purpose in it - perhaps part of that purpose was to show you the kind of help Maddie needs, so that you have a better sense of how to advocate for her back in the Emerald City? I know it's cold comfort, but you have learned and gained much from this year and that has to count for something.

Lynn April 30, 2009 at 5:08 PM  

This is my first time visiting your blog and what a first post to read. ;) I will keep you and your precious Maddie in my prayers that in your move you will get the support you all need.

Tami April 30, 2009 at 5:10 PM  

Sorry Lynn. Its kind of a hefty post for your first visit. ;>) I'm usually a little more light-hearted. I hope you'll visit again. ;)

Erin,  April 30, 2009 at 5:42 PM  

This must have been such a hard decision for you and Shad to make. I hope now that you've made the decision, things will start getting easier. As a couple others have posted, maybe having the knowledge of what Maddie has now (that is so fabulous) will help you obtain better services for her back in Kansas. I'm praying for you. And sending cyber-hugs. :)

Michelle April 30, 2009 at 6:27 PM  

i'm so sorry it's come to this for you guys. i know it sounds trite, but i'll be praying my heart out for all of you - especially "Maddie" and for you as her parents, that God will work miracles. that He will heal her little ears, that He will give you wisdom in how to get her the help she needs, and that the people you need to help her will be receptive, open, and both willing AND able to do what needs to be done to help her thrive.


srlsfamily.com April 30, 2009 at 6:57 PM  

Tami, I am sorry you are going through this. Make sure that you get a good copy of the IEP and other interventions that would have been done in Grab-your-lasso. If there aren't resources in the school system in Kansas, you might be able to get the school system to agree to pay $ for you to get services outside of the school system -if you can get them to agree that those are needed. I hope that you will get some peace over this decision in the coming months and years. Unfortunately we do what we need to do and have to deal with the consequences.

Semi-Slacker Mom April 30, 2009 at 7:36 PM  

When God closes a door, he always opens a window.

Waitingonmyua2 April 30, 2009 at 7:50 PM  

I am so sorry you're going through so much pain. Please remember the guilt is not from God. Try to lay that much at the cross. God's plans are not always clear, but I can guarantee you He's at work in all of this.

When you're able to talk, look me up and give me a call. I think I can help you with some Kansas Medicaid SRS services that are based on Maddie's income (not yours). I've been through it for Alex and am in the midst of it with Anna right now.

waitingonmyua1 at hotmail dot com

kitzkazventure April 30, 2009 at 8:11 PM  

I was trying to think of some great wisdom and encouragement to send and all that came to mind was the phrase at the end of "It's a wonderful Life"....No man is a failure who has friends. I think No parent is a failure who gives an orphan a home and TRUE love. I believe she will flourish simply because of that.....God has a plan (and IEP per se) for her and He CAN fulfill it. HUGS!

PIPO April 30, 2009 at 8:29 PM  

Through the struggle you WILL all prevail. Things may not be in the plan you have imagined but they will find their way. Change...no matter the type...brings the anxiety of uncertainty and, in time, this will settle as the path becomes clear.

Erin April 30, 2009 at 8:37 PM  

It is going to be hard, but remember you have Federal Law on your side. While they might now have everything Maddie needs or the $... if it is in her IEP that they create in Kansas and I would recommend you get an advocate to help you make sure that the things she has gotten now are in it... they have to do it. Don't feel guilty about it. Don't worry about it- you are a mommy, and your job is to take care of you little ones. I am a special education teacher, so if you need any advice feel free to e-mail me.

Tina in CT April 30, 2009 at 9:39 PM  

When you first posted that you had a lot on your plate, I just knew it was about moving and I'm not surprised that it's back to your house. I hope things will work out better than you think. Are there specialists within a decent drive that could help with Maddie?

Tami April 30, 2009 at 9:45 PM  

You've been reading this blog long enough I think you're starting to be able to read my mind! :)
I honestly don't know what specialists are in our area. We're about an hour outside of Kansas City so that may be an option...but I honestly don't know. When we left last August I was still overwhelmed with all of the newness of having a special needs child, the post-adoption depression and adjusting to a new job (different from when I left for Ukraine). I never took the time (because it was all I could do at the time to make it from day to day) to check it out. That's one of the first things on my lists for when we get back.
What we're able to do will also depend a great deal on the insurance. Our old insurance may have paid something (BCBS) but I have no idea on what the new insurance will cover. It should be interesting.
I have looked a bit at the organizations that are in Wyoming to see if they have any similar sister-groups in Kansas...no luck so far. Sigh.

Rachael April 30, 2009 at 10:08 PM  

I can only imagine what a heart-wrenching decision this was for you. It sounds like all things were pointing you back that way, so I'm sure God has a plan for it all to work out for Maddie too. I hope the move will not be too hard on all of you.

SLColman April 30, 2009 at 11:13 PM  

Hang in there... Things will work out how God has them planned. As long as what you are doing is within that plan then there is nothing at all to worry about! *HUGS*

MamaPoRuski May 1, 2009 at 12:35 AM  

I can't imagine what you are feeling, the hope and yet loss of a dream. Praying for you all!

Melissa May 1, 2009 at 7:28 AM  

I have such a respect for people who adopt other peoples children. I would adopt, but my husband would have no part of it. Many best wishes to your new bundle of joy.

Annie May 1, 2009 at 8:39 AM  

It is breaking my heart reading this. I can feel your agony through your writing. You so beautifully described both the blessings and challenges of both places. You poor thing.

There came a time for me, too, when I realized that I couldn't do what was best for my children - can there be any deeper agony than that? In my case it was KNOWING, deep down, that being an at-home mom, and homeschooling was the best thing I could do. But, there was no possibility. Despite the fact that my husband later lost his job, and we rely even now on mine, does not make it easier.

But perhaps that is part of maturing. Realizing that we can't always have what we want even when what we want is the most unselfish thing possible! It is confusing. Confusing. So confusing.

The verse that I hold tight is: All things work for the best for those who love God. I just have to trust that I don't see what God sees.

kate May 1, 2009 at 11:10 AM  


Big hugs to you first and foremost.

Maybe, hopefully just knowing what you know now will arm you for the fight that lies ahead. If you're meant to go back, then back you go. If you're meant to stay, something will happen. I take great comfort in knowing that I cannot, no matter how much I mess up, be outside of the plan God has for me. I will be where He wants me to be.

Maybe Glinda (or Galinda, as I'm a "Wicked" fan) is going to come floating into your lives back in that FLAT and tedious-to-my-CO-eyes state of yours. ;> Maybe Maddie can be a case study, someone's senior project, taken on by an eager college student...

{{{{Tami}}}}} (Big hugs to end, too.)

Lisa Mom of 2 Boys May 1, 2009 at 11:20 AM  

Thank you for sharing and being so candid. You were my top EC dropper for April and won free ad space on my blog! Check it out in the left hand side of my page.

carlota May 1, 2009 at 11:28 AM  

Bless your heart.

Happy Friday! Thanks for being the top droppers. Have a wonderful weekend ahead.

MamaFlo May 1, 2009 at 11:33 AM  

You will not live to regret this decision.
The most important aspect of your daughter's life is her family and regardless of where she lives with her family she will be happy. Her other needs will be fulfilled. somehow, some way. I can tell by reading the story or your life with her that her Mommy & Daddy love her immensely and love can overcome many obstacles.

One Creative Queen May 1, 2009 at 11:34 AM  

Sweetie, Every single day is full of "what ifs" - if we let them be like that. Then the "what ifs" take over our days, our weeks are spent wondering "what if" and "should haves" - not "what wills" and "we cans". These weeks will turn to months, and eventually we will find ourselves in a state of paralyzation - serving no one...not ourselves, not our children, and certainly not our God. He doesn't want us to live like that. (Which I have to constantly have to remind myself...or more like pound into my own head!)

I know you have dreams of staying...but (and this is the part you have to swallow hard on), sometimes our dreams don't align with God's plans. Sucks, doesn't it?? I've been there so many times - and all I know to tell you is that what I *thought* I was giving up wasn't nearly as wonderful as what God actually *gave* me. And I say this as a mom who also has a child with an IEP - who was put on one in preschool, and we're now battling in the 10th grade. Altho our school district is honored by everyone and their goat, it hasn't been the best fit for my son - and I have to force myself daily, not to live in What If Land. It's hard.

It's so clear to anyone reading a single post on your blog that you and Shad love and care for Maddie with a love bigger than yourselves. If you make that love so clear to your readers, Maddie is bound to feel it as well. If you are forced to move from your current location, there is a reason. It may seem impossible - and it may feel wrong with every sense you have. But for some reason, you are being led back to Kansas. Who are you (and by that I mean any of us) to question His plan??

While reading your post, especially the part about the disctrict in Kansas lacking the resources to meet Maddie's (and probably other special student's) needs, a feeling came over me. I'm not one to have those funky feelings - or even to put much weight on them. But maybe...just maybe...you are being led to Kansas because you are the one to make the changes. You've seen what can be - and those with the knowledge and insight are supposed to lead others. Maybe you are the one who will institute the changes to make the school district in Kansas better. Could it be that God is making these changes because you are being called on to fulfill a purpose? A purpose even greater than serving your own children? That would be an awesome responsibility. The amount of love you have for your kids means you are the best advocate for them...but what about the kids who aren't lucky enough to have parents like you and Shad?

Just a thought. I know my comment has been jumbled (and long!) but something about this post touched me. I know it's a hard road - when I first found out I was pregnant with my oldest son (the one with the IEP, who is bound and determined to give me heart failure - but is also my greatest joy), someone gave me a congratulatory card. In it they had written, "Good luck on the toughest job you'll ever love". Boy - ain't that the truth?! I had no idea what I was in for. And I question the decisions I've made. But I force myself to remember that when I feel out of control, God is in control. When I'm worried and frazzled and can't see how things are possibly going to work, God catches me. I've never fallen yet - and neither will you. Your heart is being pulled in many different directions - and as much as this will sound like a platitude - your spirit is growing in ways you can't imagine right now. So trust in Him. Trust in yourself. Trust in Shad. And know that with God behind you, everything will turn out as it should. Even if it seems horribly wrong and impossible.

My thoughts and prayers are with you guys...and if you need to talk, please email me. And know it will be ok. You will be ok. Keep the faith, trust in Him, and continue to be strong.


betchai May 1, 2009 at 6:06 PM  

am sorry to hear about all the hurdles you have been going through, i hope for the best for you and your family and slowly things will get better especially for your little one, Maddie.

Carlee May 1, 2009 at 6:47 PM  

Coming from a parent who moved her kids 4 times in 22 months, I hear you. We too left family--two sets, two times--left an incredible school district (and are sorely disappointed here, hence charter school next year), and completely disrupted our kids' lives, 4 times. It sucks, and we are still paying a price. They talk about moving all the time--as if we can just pack up and try a new house--and ask which of their stuff they are going to have to get rid of this time.

We are not in the same position as you are with Maddie, though, and my heart breaks for you. I agree with other comments, especially that the Lord may be using you to educate others. But that's not an incredible consolation when it's your daughter who needs help, now.

Forgive yourself, though. Don't beat yourself up. Maddie has something that no amount of therapy, hearing, or education can make up for. She has parents who love her so much they would agonize over a decision that seems to be not the best for her. I think it is a valuable lesson for our kids to learn that sometimes the needs of the whole (in this case the family) have to take precedent over the needs of one part (sweet Maddie). While you may feel that this will set her back or at least not allow her to move forward as quickly as she could in the area of hearing, communicating, and catching up, in the long run it just might give her a head start in the selfless department. And that's not a bad thing.

Glad you shared. The body of Christ is a powerful thing, and prayers move mountains. Or sunflower fields.

Anonymous,  May 2, 2009 at 10:28 AM  

I read your post about having to move back to Kansas...I just wanted you to know you and your family are in my prayers as you make this difficult decision. God has a way of working miracles even when we don't understand at the time. There have been many times in my life when I've been faced with adversity and have had to make decisions that were so very difficult. Every time, something wonderful has come out of it. You are all in my prayers.

Mountain Woman/Sara

Tammy May 5, 2009 at 1:48 AM  

First time on your site. I'm a missionary in Ukraine & friend of many who have adopted from here. Remember that God had a plan when he joined Maddie in your family. He knew about the move- and the move back. What was (is) He thinking?? Of you. Of her. Of your family. Of all of you walking with Him in the journey. Be encouraged that He is walking before you and with you. Be courageous. Trust daily.
God bless you!

Troy and Rachel May 5, 2009 at 1:45 PM  

Oh Tami, I am so sorry I am so late leaving a comment. I will be praying for your move back to turn into more than you can see right now.

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