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Welcome to Eden's web page. Eden was born on November 28, 2001 and was diagnosed with Krabbe Leukodystrophy on March 28, 2002. Eden lost her battle on October 31st, 2002. Every moment we had with her was so precious. Thank you little one for being in our lives. You are in our hearts forever and always. We miss you so much.

To find how she got Krabbe's and the symptoms, read the following:
GLOBOID CELL LEUKODYSTROPHY (a.k.a. Krabbe's Disease)
Globoid Cell Leukodystrophy is a degenerative disease of the white matter of the brain and spinal cord. Segmental degeneration of some peripheral nerves may also occur. It is the result of a genetic deficiency of an enzyme (Galactocerebroside B-Galactosidase) needed to break down certain fats in the spinal cord and brain, passed on by both parents gene's. Early signs can begin as early as 4 weeks with lack of coordination, weakness, colic fits, stiffening of body, reflux and loss of motor skills, tremors may be observed along with arching on the back. As the disease progresses further lack of coordination occurs, blindness and deafness may also occur. Usual onset takes place before 5 to 6 months of age. Average life expectancy is 13 months of age.

Journal

Friday, October 31, 2008 9:06 PM CDT

Well here we are again. Another year has passed except now we total up to 6 years. I say it every year but, how is that possible? How can 6 years have really passed since I held my sweet girl? Since I smelled her baby smell? Since I dressed her in her cute little girly clothes and fixed her hair in a ponytail? 6 YEARS..unbelievable...

In that 6 years, especially the first few following her death, we had a lot of bad times. It was rough moving past her illness, moving past the whole unbelieveable chance that something like that could strike our family and not once, but twice. Ron and I's relationship was really on unsteady ground. We moved into a new home to move away from everything that happened at that house. We changed jobs, WE changed personally and forever. I will never be the same person that I was before that stupid word came into my life. Krabbe. I hate that word. I hate, I hate it, I hate it and I wonder if in the future when I'm a grandmother if that word will come up again when it's time for Ronan, who as we know is a carrier, to have children. Stupid word, stupid disease robbed me of my daughter. She would be almost 7 years old now. I can't even picture myself with a 7 year old! But I know she would have been a mommy's girl and I miss what could have been. All the things we have missed together. All the lost moments. All the moments I have had with my mom, I wanted that with my daughter. My mom is my best friend and I wanted the same relationship with Eden that I have with my mom. But it's all gone. All the brother and sisterly times her and Ronan could have had. It sucks, but I can't change it. It is what it is.

I have noticed though as time goes on, people seem to care less. They forget more. They don't call anymore and let us know on this day that they were thinking of us. Some don't even mention her name, like she never existed. I think a lot of times people think that because we have Ronan now that things are "all better" with us. They will never be better, life will never be the same and Ronan will never replace my daughter. But he has brought so much joy into my life. All the moments I have lost with Eden, I really try to make special with Ronan. Whether it's his birthday and I wake him with a snuggle, or pumpkin picking, I've got the camera in his face all the time, he's learned to pose already at the ripe age of two. Or even tonight as we Trick or Treated around the neighborhood that we lived in, the same neighborhood that we spent our last few hours with Eden Trick or Treating in (but we didn't live here then) and I still have the camera stuck in his face, but I'm enjoying watching him ring the bell, say "Tit teets" and "Tan Too" to the people that dropped that amazing treat in his bag, I can see his eyes light up and it makes life all worth it. I know Eden sent him to us to help us move on and we have done just that. But at 10:19 pm as I sit here, just 31 minutes away from the time my baby girl took her last breath, my thoughts are with her and those moments that we last shared. I regret that night having a boat load of family and friends come over to say their goodbyes, with the exception of my grandparents and my parents. Those moments should have been with just us. I regret having Ron hold her as she took her last breath. It should have been me. I gave her life for 40 weeks and I should have been the one. I regret being rushed at the funeral home when people were telling us to let her go now and bring her out back to be creamated, those were my last moments, what was the hurry? There are so many regrets, but I will never ever regret my time I had with her and having her in our lives. It was difficult sometimes, it was stressful, but she changed me, forever. My hopes and dreams for her are all gone now and they will never return. But my hopes and dreams for Ronan are alive and well and I know she would want it that way.

So tonight, if you have read this and if you are awake at 10:50pm on Halloween night. Think of my baby girl, pray she is happy and well and tell her her mommy sends her many hugs and kisses from earth to the Heavens and that I will see her again. Until then....I love you forever baby girl and I miss you more than you will ever know...

Somebody once said to me, when somebody that is close to you has lived a long life and has passed away, you grieve for the memories and the moments that you had. When somebody dies at a young age, you grieve for the moments that you never had. That's what I grieve for. My moments, my daughter.

God Bless,
Tiff

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E-mail Author: shuggyshacky@yahoo.com

 
 

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