Wednesday, May 21, 2008

1 year with Rett Syndrome

It was one year ago today that we got the call confirming Brooklyn's diagnosis. There are days that it seems like only yesterday and then days that it feels like that call was a lifetime ago. I have to admit I am a bit emotional today but we have officially made it through the first year. Actually, we have done more than "made it," we have come so far!
This year Brooklyn: completed her early intervention program and started preschool, she was given a stander and works hard in it daily to build her strength, she continues to push herself to walk, her seizures are under control, and she is communicating with us through her yes/no cards and switches better each day. Yes, we made it through our first year and are truly living!
One of the greatest parts of this past year is the amount of love and support we have felt from family and friends (and heck even perfect strangers!) People have been so very generous. The heartfelt prayers from so many have also touched my life, I know that during the darkness of my lowest, most painful days I had friends and family praying for me. It was that encouragement that gave me the strength that I needed. It has also been amazing to connect with so many other Rett moms online ~ you ladies give me such strength (plus lots of laughs!) Thank you for loving Brooklyn and also allowing me to love your little angels.
Brooklyn continues to bless my life and the lives of everyone she meets. She has taught me to focus on what is truly important in life. Her patience and the genuine love and happiness that her little life shows the world is nothing short of amazing.
Thank you to all of you for following our story through this blog. To end this post I have put together a montage of pictures of Brooklyn over the past three years. The music you will hear is a song written for Brooklyn by Steve Smith (his wife Shannon and I were roommates in college) Steve and Shannon are dear friends of ours and Steve was so touched by Brooklyn that he wanted to write this song for her. The words are perfect, as if they were coming straight from my heart and soul. (Thank you Steve, you are so unbelievably talented!) I also have posted the words to the song below the video so that you can read them word for word. They are truly amazing!


Verse 1:
Silent love, she quiets my soul.
All my questions have taken their toll.
There is no price I wouldn't pay,
I'm thankful she has so much to say.

Chorus:
She has so much to say
Like "I love you" and "How was your day?"
"Turn on the TV, I'm missing my show."
"Do you think my hair looks cute with a bow?"
Her eyes tell stories her lips never will
With a frown, with a glance she speaks to me still

Verse 2: Her thoughts on display for anyone who'll see
I've been blinded by the notion that it affects only me
These challenges we face won't matter someday
An eternity with you with so much to say.

Bridge: Those eyes convey all that I need to know
A yearning to tell me more than she's able to show.

11 comments:

shannon said...

I cried agtain...I guess I will each time I hear it;) Thank you for sharing your journey with all of your faithful blog readers. I'm sure I speak for everyone when I say that we've loved the laughter it has brought us and we're grateful we can share in the tearful times as well. We love your little Brookie and we love you! We will continue to pray and laugh and cry with you.

Sam and Finn said...

What a beautiful song for our beautiful Brooklyn! It brought me to tears. You mean the world to all of us! We miss you -The Leckrones

Rebecca said...

It is kind of hard to believe it's been a year! You are such a strong mommy. I can say that, but I also know that sometimes our words online seem a lot stronger than we are. Our first anniversary of diagnosis was hard, but as the second one came along, I prepared for the emotions, and then forgot about it on the actual day! I think it continues to get a little easier! See you the day after tomorrow!!!

georgiamom said...

What a pretty song! Thank you for sharing your blog with us and helping me through this first year too!

Anonymous said...

Thank you for sharing today with us.

I resinate with everything you have to say. I remember the day we finally gave God ultimate control over Owen and asked Him to give Owen LIFE. LIFE with us, or LIFE with God - hard day, but oh how God has blessed us and Owen!

You and Charlie are doing a great job, how blessed you are to take care of such a sweet little girl. Keep LIVING!

Love,
Kelly, Kevin and Owen Carr

Elijah, Adrielle, & Ezra Rhodus said...

Okay, as the tears run down my cheeks, I can't tell you how much your little Brookie has touch my heart and my life. The song is awesome! She has opened my eyes to all that I take for granted each day. She may not say a word, but she does have so much to say. Her eyes do say it all. Everytime I see pictures, her eyes are what melts my heart. I have only met her in person once, but the pictures and this blog have really changed my life. She is a part of my daily life. We love you Kelly and Charlie and I know today is a very hard milestone to face as I'm sure ever year on this day will be. Please know that you will always have me to be there for you in spirit and in prayer. I do thank God for Brooklyn. She is perfect in every way. He sent her to you guys for a reason and just think of all the hearts and lives of people she has already touched...in only 3 years! I miss you guys and I want to say thank you once again for this sharing this blog, your story, and most imporatantly your daughter with us.

Anonymous said...

I can't begin to describe the emotions Brooklyn's Song prompted and must thank Steve and Shannon for that gift! However,I do want to pass along what a GREAT DAY we (Kel, Suz & I) had the opportunity to share with 'my buddy' Brooklyn yesterday ... going to the Zoo, followed by Lunch @Olive Garden ... and I remind myself daily, we could not do 'little things like that' that if we still lived in Ohio. LOVE, pappy

Cole+AverysGigi said...

There are no words to describe the emotions I have when I hear your special song and see the pictures. It was heart breaking to see from one picture to the next the onset of Retts. It is always the hands that tell the story. Bless you and Brooklyn and all your great friends. You have no idea the comfort you have brought to our family. Carrie, Avery and I are going to do everything in our power to get to Indiana to spend time with y'all. And Cole too. He is having an emotionally hard time right now, teary meltdowns etc and it is breaking my heart. But Avery seems to be reawakening a little so that helps heal my heart. See you this summer
Gigi

Alisa said...

I just got to watch this and you did a great job of putting this together. The song is beautiful, the lyrics and his voice. Brooklyn has obviously touched so many lives by reading all the comments on this post. Although we haven't met, I truly feel like she is Ava and Andersen's buddy! We love seeing her everyday online and she is a true inspiration to us as well. Thanks for sharing her story with everyone.
The Parker Family

Jessica said...

How beautiful and touching! Brooklyn is truly a gift...there is no other way to put it. *sniff* I just want to say that I feel so blessed to just be able to come here and read about Brooklyn and your family. Your family is truly an inspiration to anyone who knows you or who reads this blog. Thanks for letting us be a part of it all.

Kelly said...

What a beautiful song and slide show! Thank you for sharing your lives as a family through this blog. We enjoy reading, praying, and being a part of your journey.