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Natalie Jean... 
...ALWAYS remembered...ALWAYS loved...FOREVER missed!!
Welcome to Natalie's webpage which has been created to keep people up to date about her ongoing struggles with Mitochondrial Myopathy. As a result of Mito, Natalie has a cental line for all of her meds & is TPN dependent for her nutritional needs. She has a G-tube & a separate J-tube to constant gravity. Her biggest issues at the moment are GI related, chronic intestinal pseudo obstruction (CIP), immune deficiency, liver disease & hypoglycemia, as well as many other medical issues. Natalie is currently on the list for organ transplant. She has been listed for a multivisceral (liver, pancreas, stomach & small bowel) transplant in Pittsburgh since 1/2005.
**Please sign the guestbook, so we'll know you were here!! Thanks!!
Natalie Jean Eacrett
December 30th, 1998 - May 6th, 2006
There are far too many, just like Natalie, who have lost their battle with Mito as well...click on "Our Precious MItoangels" to view a montage of just some of those children, and hopefully raise awareness of the dire need to keep fighting this insidious disease in EVERY way we possibly can, and make a difference for other children and their families!
Our Precious Mitoangels
Journal
Wednesday, May 6, 2009 9:09 AM CDT I want to begin by taking a minute to thank those of you who attended the 2nd Annual "Natalie's Night of Hope" before I get into this day & all that brings with it!! The night went well, and everyone seemed to have “FUN,” which I know Natalie would have loved!! ;) I also want to thank the people who made donations, some of whom were able to attend and some whom were not...either way, all of you helped to make this night a success & I sincerely appreciate it!! Finally & most importantly, I want to thank those few people without whom this "FUN"raiser would not have happened...they are the people who were there from the beginning right through to the end!! They put in a great deal of time, money, and energy to make this night as special as possible to honor Natalie's memory & to honor her life as well as to honor her wish that we continue her fight against Mito to help other kids battling this insidious disease! You know who you are, so I won’t embarrass you by naming you on Natalie’s website, but I want to thank each one of you from the bottom of my heart for making the 2nd Annual Natalie’s Night of Hope a night Natalie would have been proud of!! I could NOT have done it without you & I sincerely appreciate each one of you as well as EVERYthing you each did to make this night all it could be!! Collectively, you have all helped to make a difference… your generosity and support are greatly appreciated…thank you!!
Today is such a difficult day…remembering Natalie is easy, second nature, but remembering this day 3 years ago is an almost indescribable pain & hurt…
Natalie was like a miracle that came into my life at 6:59 PM on December 30th, 1998 and I had her physical presence for 7 years, 4 months, and 6 days until she earned her wings at 6:32 AM on May 6th, 2006. Seven years is FAR too short a time to live…NO doubt, but Natalie lived EVERY moment of that time fully!! She loved deeply and she had A LOT of “FUN,” in spite of her constant medical issues, and her continual battle against Mito and its ever-progressive nature.
This morning I have been sitting here reliving her last week of life again, questioning, wondering, etc…my heart is shattered beyond repair, as am I!! The reality that it has been three years since I’ve heard her voice or her laughter; seen her smile or her expressive eyes, touched her or cared for her many needs sets in with a renewed & unending vengeance. It is a pain that NEVER goes away…a hurt that is ALWAYS palpable!! UGH…let me try to switch my focus & talk about Natalie, who she was & what she meant to those around her, which is FAR more important to me than rambling on about my pain!!
Natalie had a radiant smile from the time she was an infant. She was a beautiful child…inside & out!! Her expressions always conveyed a message & her feelings as well as often telling an entire story. I miss seeing her expressive features…hers eyes, her smile!! Natalie had this incredible way of gripping you, taking hold of your heart and holding it tight (as she still grips & holds mine today). She truly impacted the lives of so many people in her short life…her family, her friends, her caregivers, hospital staff, and even many she never met. She was an amazing child who was incredibly resilient with an undying spirit!! With all of those traits she lived her life, not as a chronically ill child, but as a child who loved to play, talk, sing, dance, be with people, and simple have “FUN!” Some days, she only had enough energy to muster a few moments of “FUN,” but she made the most she could of those few moments just the same! Natalie was truly a happy child. She may not have been able to do everything she had dreamed of doing, but she sure managed to do as many things as she possibly could in the time she had—LOL!! Natalie spent a great deal of time with the people she loved as well…she colored and painted, she played, she went to school, she made friends, she painted her nails and did her hair (important stuff at the age of 7), she loved yellow, she baked and gardened, she went to hockey games and baseball games, she was in her uncle’s wedding then in her own mind married her dreamy Dr. shortly thereafter, and so much more. She packed A LOT into 7 years, and even though 7 years was FAR too short a time to live...she lived each one of those years fully, openly, honestly, lovingly, and happily! Natalie truly loved life and the people in her life passionately & she made sure we all knew it! She taught us many lessons, especially me!! She helped us to live in the moment and reminded us to enjoy the moment we were in. She had A LOT to give, and give she did! I know as I, for one, am a better person because of the impact Natalie had on my life!! I miss her terribly & I often find myself wondering what Natalie would be doing today at age ten…what she would like…what her passions would be, etc…
Because Natalie was a chronically ill child with many medical needs, I was her caregiver, but she was also mine…I guess you could say we were codependent in a sense. She depended on me to live, and I depended on her to know who I was and what my role in life was. Without her, I am still struggling with those very things. Having a child who requires full time care becomes who you are...losing that child raises a lot of questions about that, even after three years. On some levels I know who I am…I am Zachary & Allison’s mother, a daughter, a friend, a granddaughter, a sister, a teacher, etc…but the void Natalie’s everyday presence has left in my life is one that has not & probably never can be filled!! That void is like having a hole of colossal proportions in my heart...in my life, and is often a very difficult, lonely, & scary place to be, and a place that is riddled with questions, yet very few answers.
Though I’m not caring for Natalie’s physical needs any more, she is still a huge part of my every day life…my every waking thought!! And, in a way her own way, Natalie’s still taking care of me each and every day through the many lessons she taught me, the love she so freely gave me, and the many memories of the times we spent together. I hang on to all of that, and to Natalie, and I ALWAYS will. She is my daughter…a part of me, just as much as Zachary and Allison are my children & a part of me and that will NEVER change!! She’s not here, yet she is ever-present at the same time. Through her love for me & everyone else in her life and the undying spirit she possessed in life, Natalie continues to guide and inspire me EVERY day. She is always in my thoughts & in my heart! And though I miss her unbelievably & missing her hurts beyond measure, I am grateful for every second of time I had her in my life!!
Thank you for continuing to check on us, caring about us, and for remembering my precious little girl!
Read Journal History
Hospital Information: Patient Room: H*O*M*E* Massachusetts General Hospital for Children
55 Fruit Street
Boston, MA 02114
617-726-2000
Links: http://samanthaslifeandtimes.com/inmydaughterseyes.html In My Daughter's Eyes
http://www.mda.org Muscular Dystrophy Association
http://www.umdf.org United Mitochondrial Disease Foundation
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