Thursday, October 29, 2009

now we know...

Dear little Leah, 

This morning my fears were confirmed: you were officially diagnosed with Rett Syndrome. Simply speaking, Rett Syndrome is a severe genetic disorder that affects the way your little brain is developing. You developed normally (or what appears to be so) until about 18-20 months, but your progress has slowed – and reversed – since that time. 

Many other girls with RS have problems using their hands, speaking, walking, chewing and possibly even breathing. There is no cure (yet!) for Rett, but there are things we can do to help you feel better. 

You have great teachers at school. In fact, your teacher, Jan, is the one who mentioned Rett Syndrome in the first place. She did a lot of research before she decided to talk to us about it because she wanted to be certain before she made us worry. And, although it did make us worry (and still does), we are so grateful that she took the time to really try to figure out what was ailing you. Her aides Patty and Helen are equally as wonderful. You have an amazing speech therapist, Asha, to whom you have really taken a liking. She is willing to try all sorts of things to help you communicate and doesn’t get frustrated when something doesn’t work like she thought it might. Marian is your physical therapist and she also works very hard at trying to make you more comfortable and more successful in your movements. Right now you sometimes wear a weighted vest and we’re trying out a compression suit this week (which, by the way, you look very cute in). 

You make repetitive, purposeless movements with your hands, but we’re hoping if we can keep that under control a little bit, purposeful movements can be more common. You are pretty good at using your spoon, you know. 

You don’t sleep very much. That means your dad and I don’t sleep very much. Hopefully we’ll get that back in order sooner rather than later. We wouldn’t mind if you’d just keep it to yourself, but it seems like you’re in pain and you let us know! We think your tummy hurts, so we’ll try to get that feeling better soon too. Since we live in an apartment with people living below us, we have to get you quiet pretty quickly. We’ve spent many a night lately watching videos with you (Signing Time, Clifford, Abby Cadabby and Backyardigans are some of your favorites), going on drives with you, sleeping in the car with you and just trying to cuddle you. 

As of last week, you lost all of your words. I think I remember hearing you say “please” and “oh no” last Friday, but I haven’t heard anything other than grunting since. This makes mommy really sad, but I need to remind myself that just because you can’t speak, doesn’t mean you can’t communicate. We just have to figure something else out. 

I could go into lots more detail, but more than anything I just want you to know that you’re still my little Leah. I love you just as much today (okay, maybe even more!) as I did before. I’m going to try my best to be patient with you and understand how you learn and grow. Can you do the same for me? I’m new at this too. But I love you. Lots of people love you. Always remember that. 

Love, Mommy

42 comments:

Julia said...

we love you laytons.

Amy said...

You are in my prayers--I really admire you, and I think little Leah has the best parents. She's so lucky to have You.

Brandon Danielle and Laneah said...

maren...you are such a good momma. Leah is one lucky girl to have you that is for sure. We will have your family in our fasting and prayers.

Regan said...

We will keep you in our prayers. Leah is so lucky to have you and Ryan as parents. And she looks beautiful in her red dress!

whitney said...

i'm so glad you guys finally have some answers to your questions. i can't think of better parents for such a sweet, special little girl... you guys are in our prayers.

Shauna said...

You don't know me at all...I found your blog through another one that I can't even remember now. I've been lurking for a while, since your little Leah and my little Lucy are the same age, and she's such a cutie.

I can't imagine how your world must be rocked right now...to finally have a name for all your worries. You are definitely in my prayers. I admire you so much, and Leah is so lucky to have you.

Brad, Debbie, and K squared said...

I wish I could say that I knew what you were going through, but I can't. Hang in there. Leah really is such a beautiful little girl!

Jenny said...

What a darling picture. I just sent you a long email before I read this post. One thing I forgot because I was wrapped up in other things...was Sammy's neurologist just prescribed Trazadone for sleeping. She wasn't sleeping and I was getting to the point where I just couldn't function very well. It's actually an anti-depressant, apparently, that they prescribe for some kiddos to sleep, and our dr. said there have been no negative side effects in studies. I'm not one to medicate everything, but after 3 years of her not sleeping, I welcomed the idea with open arms. We found the right dose, and it's been incredible. She falls to sleep well and stays in a deeper sleep longer. So she's getting a good 10 hours of sleep! She still needs more of that to not be cranky, but it's far better than the 5-6 hours she was getting a day! Can you even imagine 10 hours of sleep right now? That may not be an option for Leah, but it may be worth asking about if you are interested.

LTC said...

I wish that I could leap through the computer and give you a big hug...you are an amazing Mommy...I can feel it through your letters to Leah. She is blessed beyond words to have you...and you, the same with her!

Launi said...

i'm glad that you guys at least have some answers finally! we will be praying for you and sweet leah as well!

Ryan said...

Oh little girl, I love you so - and always will...

Daddy

Julie Laughlin said...

it's good that you have some answers. and thank goodness for all of your great teachers and therapists! and for leah's great parents!

Morgan said...

maren~ i knew things weren't great, but i had no idea things were that bad. i am so happy that you guys now have some answers and something to work with. i cannot think of better people to be leah's parents. it takes truly special people to raise children with special needs. i really, really believe that!!! heavenly father must trust you beyond measure. we love you guys and you are all in our thoughts and prayers.

carolee said...

We love you guys!!

PS That portrait of Leah is amazing. Pretty, pretty girl!

Laura said...

What a beautiful picture at the top of this post! So much light and life in her eyes. She must have two fabulous and wonderfully patient parents. Hang in there - God has a plan somewhere in all this craziness. Tell Ryan hello for me - we grew up together.

Dyan said...

Maren, I hope this provides some peace in your life. That probably sounds weird, but now you will know what is wrong and hopefully all of her great therapists will be able to help her even more. She is so cute and special. We really love her even if she and Nora don't get along ;)

P.S. If you send Santa your letter you might get a bag of coal for Christmas. Hopefully 2010 will be a better year!

Karen Hauley said...

I can't even express the love I feel for all of you. You are part of me and will be forever. You will be blessed beyond measure for taking care of sweet little leah - I only wish I could be closer. I love you - all of you.

Mary said...

Oh maren, I'm so sorry! We love you guys!

Aubrey and Dale said...

Maren,
What a beautiful letter to your sweet precious Leah. Thank you for sharing.

nicole said...

Sending you lots of love and prayers! Hope to see you all dressed up tomorrow :)

Emily said...

Maren,
After reading your post, my heart goes out to you. I went and read everything I could about Retts Syndrome to understand it better what Leah is going through.

I just want to tell you that I do believe the Lord helps us in all the situations of life we find ourselves in. What a blessing to know what it is so you are not wondering anymore and can help her in new ways.

I have faith the Lord will be here soon and will end the suffering of children and heal them. I have always put you on my list on people to be admired and now even more so, because the lord entrusted you with one of his elect!

I will pray for Leah, you and Ryan.

Always with love, Emily Thomas (10 X Media Intern, I am never sure you remember me)

Joy said...

Maren, I am a puddle! What a beautiful letter. I am heartbroken by the 2nd to last paragraph, that she isn't speaking anymore. I will be praying for your family.

Heather said...

Just like yout title--now you know. You guys are great parents and Leah is one cute and very Lucky girl. I know you will do your best and you will put everything into doing the best you guys can!

Amy W said...

Leah is lucky to have a mom with such strength and faith. I imagine that as you journey through this you will find strength you didn't know you had. Sending love and prayers your way!

Jewele said...

Oh Maren! What to say! I had a good cry reading your sweet letter. Wow. To finally understand what you sensed all along. Hang in there friend! Special kids go to special mommies and you definitely rank #1 on that list! What a sweet little girl and awesome parents! We love you and will be praying for you!

Claire said...

Maren,
You are an amazing mom. You are in my prayers. Hang in there.

maryirene said...

my thoughts are with you little leah, and with your parents. we will be praying for you. we love you.

Justin King said...

Maren

The letter you wrote to Leah really touched me. You will be in our prayers

Liz said...

Hugs to all of you...may this diagnosis bring you answers, peace, and a good night's sleep.

laska said...

What a beautiful and heart touching (and wrenching) post. I am glad that you guys have some answers. Leah is a beautiful girl, and I know that you are a very special person to have such a sweet spirit in your life. My thoughts and prayers are with you.

Baldersons said...

Such a lovely letter to sweet little Leah. You are such a great example to so many people...Leah is so lucky to have you as her mum!

Nathan and Whitney said...

Leah couldn't be blessed with better or stronger parents. You are in my prayers!

Benson and Jaimi said...

I think you and Ryan are amazing and we just love sweet little Leah. Emerson is always so happy when she comes to play.

Amber Volle said...

What a powerful post Maren. Leah and the two of you are in our thoughts and prayers.

Crystal said...

my heart really goes out to you! it's going to be really hard. remember all the people who love you and have you in their prayers!

megan said...

Mar, I love you guys and you are in my prayers. You are such a great example to me and everyone else. And I'm sure Leah has no doubt how much you love her.

Amanda said...

Laytons, I don't think I can say anything more/different/better than what everyone else has said. I admire you SO much and although I've never met Leah I can see that she is a beautiful! and amazing! little girl and I can feel how much you love her. You are a special family and although you have many hard times ahead we're all cheering for you and for good things to come your way!

Amy said...

We're thinking about you! I'm so glad you have a diagnosis, even though I know it's painful.

Rob and Marseille said...

My friend's daughter was just diagnosed with Rhetts too! Reading both symptoms before diagnosed I thought they had something in common, though her daughter can't do more than sit up. Here's the blog they created about her and her struggles with Rhetts:
http://beccatheblog.blogspot.com/

Jessica Mosteller said...

maren you are such a wonderful mom. It is hard to imagine what you are going through right now but we will keep you in our prayers.

Jen said...

Hang in there! Cute photo!

JAZKK Low said...

Hi Maren! What a cute picture of Little Leah. I am so sorry. You are an amazing couple and like everybody has said, Leah is lucky...and so are you. She is a sweetie. We will keep you all in our thoughts and prayers. Hang in there. We love you.
Amelia and Co.