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Archive: ‘D-day’



5 years ago today…..

Tuesday, February 19th, 2013

 

“God gives the light loads to the weak horses and the heavy loads to the strong horses”
I said: “I don’t feel like a strong horse!”
He replied: “You aren’t–your daughter is.”

-Author unknown

 

Battle scarred and weary but never broken.  Batten Disease can not win.

D-day….the 4th anniversary

Sunday, February 19th, 2012

It could have been a day of sadness and bittersweet remembrance but instead, we decided to give Batten’s the proverbial finger. We went out and had FUN. Today we decided to celebrate what is.

And what is, is 4 years after her diagnosis, Tatyanna is still here, smiling. What is, is that I have 3 other awesome kids and an amazing husband who have embraced the less than stellar set of cards they have been dealt and keep going with their heads held high.

And really, that’s a whole lot to be thankful for.

I can’t say that my heart doesn’t hurt on a daily basis, I can’t say that there aren’t days where sadness overwhelms. But today it seemed especially fitting to give a crass salute to the beast that is slowly stealing someone that we love. Battens may live here but it will NOT define us.

 

49/365 "D-day minus one"

Saturday, February 19th, 2011
IMG_3543

“Pizza!” She shouted it gleefully as she bounced on the hotel bed, pigtails flying, bare legs a blur of motion. For a second I wondered if I should stop her but I didn’t have the heart. Not on this night.

“Pizza, it is!” I tried desperately to keep my voice as normal as possible. Anything to belie the icy fear that had taken root in my chest over the last several days and was now threatening to overcome.

Later that evening I tucked my girls into bed, their hair wet on the pillows, “read one more story times three “and kissed them goodnight. As darkness settled into the room, I lay next to their father, his arms tight around me, breathing a silent prayer that this day would never end. Deep down, I knew that tomorrow our lives were about to change forever….but mercifully I could not fathom how much.

D-day, the second anniversary

Saturday, February 20th, 2010

Two years ago today we received Tatyanna’s diagnosis of LINCL. In the time since, I have learned to become a researcher and advocate, I have become stronger than I ever thought possible. I have learned that it’s ok to live in the moment, to let go of what or who is not important and to celebrate the small things. I’ve seen that there is light and hope and beauty in the darkest places and that sometimes the miracle you pray for is not the miracle that you receive but that they are all around you …..you just have to look -sometimes really really hard. :)

As put, rather insightfully, by one of the other Batten parents, “our children aren’t dying from Batten Disease, they are living with it.” (thanks for the awesome quote Nikki!) I love this quote because it eloquently sums up how we as a family strive to live. I believe that if we focus on the negative then the disease wins and our losses will be far greater than the obvious. That isn’t to say that there aren’t bad days, that there aren’t times when the pain threatens to overwhelm and the very act of getting out of bed is a supreme effort of will. I’m human, after all, there are days when my strength falters and my spirit is tired. But, I have to remember, this isn’t about me….it’s about a little girl with more courage and heart than I have ever seen in another human. It’s about a little girl who once radiated enough energy that she almost seemed to sparkle. It’s about my sweet daughter who at the end of being poked and prodded for the millionth time still had it in her to smile and want to give out hugs to anyone around. Because of her, at this moment, I choose to aknowledge what is good. Even when things look their bleakest, there is still love and laughter and life.

February 19, 2008.

Tuesday, February 19th, 2008

There is really nothing that can prepare you to hear that your 4 year old daughter is never going to grow up. There will be no sleepovers with friends, no shopping for prom dresses or sharing motherly wisdom. There will be nothing but memories of a valiant little girl who fought so hard and lost so much.
Today Trent and I got the bad news we had been waiting for.  Today  Tatyanna  was diagnosed as having progressive myoclonic epilepsy also known as Batten’s syndrome or Batten Disease (late infantile onset). Our suspicions were confirmed once we arrived at the hospital to find that the neurologist had booked a conference room and was coming in on her day off. Things grew more ominous when we were informed that a nurse and social worker/support staff would also be present. While I really wished that I would have better news to share and that the ordeal of the past few weeks could be filed somewhere next to “cancer scare 2007” (yeah i know, I never did tell you about that one) I knew deep down that it wasn’t meant to be. I wish somehow that made things easier. At this point I’m numb. I could feel my psyche slide into survival mode as the information was divulged. While I’ve held my sobbing husband and felt my whole world come crashing down, I have yet to shed a single tear. I know that won’t come until later. When all the house is quiet and everyone is asleep. In some ways I hate that I’m like this. Things would be so much easier if I could just let my guard down and allow someone to console me when things get tough but at the same time there’s a well-trained part of me that’s not willing to let that control go.

Tatyanna my sweet girl you have endured far more than any child should ever have to with more courage than most adults. My heart is breaking and my soul aches. I truly wish that I could make this all go away.

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