7 years

2years

Brooklyn: Age Two

Seven years ago today I shared these words on my blog:
MONDAY, MAY 21, 2007
Diagnosis Day
We got “the call” tonight. Brooklyn’s blood tests were back and she has been officially diagnosed with Rett Syndrome. We have assumed this to be true for a few weeks now but it was still hard to hear them say those words.

Absolutely nothing changes for us. We will still wake up in the morning to hug and kiss our little girl and work with her therapists and sitter (who are all AMAZING for those of you who do not know them!) We will still thank God for everything; especially Brooklyn and the amazing love and tremendous blessings she shows us each day.

She has been given a “label” of Rett Syndrome and that is OK. We plan on joining forces with all the other moms and dads of “Rett girls” to get the word out about this horrible disease. We will help educate our friends and family about this syndrome and help them see that Brooklyn is amazing and that WE will actually be the ones to learn from HER.

Thank you to ALL of you for your love, support, and prayers….please don’t stop! We have a long road ahead of us. I told a friend the other day, “Life is turning out different than we had once planned. Not better. Not worse. Just different, but with the great friends and family we have and with God in complete control we will be just fine.”

While I do appreciate my attempt at the positive approach I took in the post….the truth is I was A MESS when I hung up the phone. I sit here today and read those words…wondering what I would go back and say to my 30 year old self that evening as she hung up that phone and fell breathless to the floor in tears. To be honest, most of what I typed in that blog post seven years was true.

I have “joined forces with other Rett moms and dads.” But that is a HUGE understatement. These moms and dads have become my family – my lifeline. They “get me.” They are my “go to people” when Rett Syndrome is kicking my butt. They are my biggest source of encouragement, strength, and laughter…oh the laughter! (yes 30 year old crumbling self – you will laugh again!)  Rett Syndrome has brought AMAZING people into my life, no doubt about that. I thank God everyday that I clicked on the Girl Power 2 Cure website. The file folder full of Rett Syndrome paperwork that the genetics doctor gave us was more than a bit discouraging (pretty doom and gloom to be honest!) When I visited the GP2C site it gave me hope, it restored those feelings of belief that everything would be ok. It connected me to my new family, there are not words of thanks great enough for that!

(on a side note – I hope any of my nurse, doctor, genetics, medical related friends will take 5 minutes and read my blog on how to give a Rett Syndrome diagnosis HERE.

I absolutely feel like I jumped in with both feet with the “help educate our friends and family about this syndrome and help them see that Brooklyn is amazing and that WE will actually be the ones to learn from HER.” I did not jump right into this role of educating, it took some time. You have to remember that a diagnosis this huge throws you into the grief cycle. (Denial, Anger, Bargaining, Depression, Acceptance) I hung out in each of these stages for awhile – and still sometimes cycle through them on a regular basis – I think that is normal, healthy even! Hitting that acceptance stage was the point I attacked the awareness thing. I guess I figured that Rett is a part of our life now, it is a part of who Brooklyn is so everyone in our lives needed to know about it! Lets face it though – Brooklyn does most of the work on this one, we absolutely “will be the ones to learn from HER.” She CHANGES LIVES. She was two years and seven days old when we received the diagnosis – I can’t even begin to come up with a number representing the people who have been blessed and encouraged buy her amazing little life.

“Absolutely nothing changes for us.”  Today writing this blog – this is the one statement I would probably have left out (but give me some credit – I had JUST received “the call” – I did not WANT anything to change!) I think what I meant was I will not love Brooklyn any less, she will not be any less of a blessing to me, both of which are very true! NO diagnosis can change my love for her or how awesome she is. BUT…..the truth is EVERYTHING changes. I was thrown into a whole new world. I can’t pretend that my life did not change as I watched Brooklyn lose the ability to walk, stand, crawl, or put her arms around me for a hug. I can’t say I was ok as the last of her words slipped away from her lips. The truth is I cried myself to sleep the night before her feeding tube surgery and my heart skips a beat as I hold her during a seizure or nights spent in the ICU. Rett CHANGED my world and continues to change it all the time.

But, sitting here seven years later. I am in a good place. OK…DO NOT get me wrong. I hate Rett Syndrome, nothing will change that. However, there is so much hope now. Clinical trials are starting, new treatments are being studied everyday, a real hope for a cure in Brooklyn’s lifetime. Plus, Brooklyn (and so many of her Rett sisters) show specialists everyday how little they really know about Rett. Parents use to be told “take her home and make her comfortable- there is nothing you can do.” I can’t even imagine hearing those words as I see Brooklyn go to school with her typical peers, taking quizzes, and bringing home A’s! She is invited to play dates and birthday parties. She of course battles her body against Rett everyday but most days….she wins – she shows Rett Syndrome who is boss. She fights so hard….how I can I not?

I think I will wrap up this post with the EXACT words from seven years ago…..

Thank you to ALL of you for your love, support, and prayers….please don’t stop! We have a long road ahead of us. I told a friend the other day, “Life is turning out different than we had once planned. Not better. Not worse. Just different, but with the great friends and family we have and with God in complete control we will be just fine.”

 

 

One Response

  1. Andrea Zak May 21, 2014 at 7:28 am | | Reply

    Kelly, I cannot even begin to describe what am inspiration you are to myself and so many other Rett families and girls out there. Thank you for sharing your journey with all of us. One of the most comforting things for me is to know I am not alone ❤️

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