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My Precious Natalie...

...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!

View this video montage created at One True Media
Our Precious Mitoangels

Journal

Saturday, July 12, 2008 2:12 AM CDT

As a Mother, I have always believed my children will always need me in one way or another...sometimes their needs are big, sometimes very small, but it matters not at all because I AM HERE for them!! As a Mother, I do whatever I can to meet their needs, sometimes simply being there to reassure them or support them, sometimes being the voice of reason; other times playing the devil's advocate. Sometimes to guide them; other times to give them the space they need to figure things out on their own. Their needs are many and varied. Sometimes those needs are clearly defined, other times they are not as clear, but I AM HERE for them regardless and do whatever I can...no matter what their needs may be as needs are a constant, regardless of our age. In some ways this defines my role as Mother. This is not a complaint...quite the opposite actually. What Mother does not want to do all she can to help her children succeed, feel safe, be happy? As a Mother, I believe you do whatever you can to meet your children's needs, to help them achieve their goals, to minimize their pain, to maximize their happiness. Of course, this is simply my opinion and may or may not be true for others, which isn't a judgment or even a suggestion that those who feel differently love their children any less, simply that their role is defined differently than mine is. But for me, meeting my children's needs has always been a part of who I am as a Mother. And even though I do my best, like others, I don't have all the answers, and as a result I'm not always successful. This is where I tend to run into my biggest issues, Natalie’s death being paramount among those issues. I'm going on & on here & probably making little sense, but I guess with all the blah, blah, blah you’ve been reading, I'm trying to figure out is what to do with all these feelings now that Natalie is no longer here with me and I can no longer meet her every need or even be sure her needs are being met. What do I do with questions that leave me wondering and concerned about Natalie? Scared for her? Unfortunately, my desire to meet Natalie's needs, help her to feel safe, happy, protected did not end when her life here on earth ended, instead it increased and brought with it many questions, concerns, and fears. What if Natalie's scared? What if she's lonely? What if she needs me? I ask myself these questions, and many others and often wonder if I will ever stop doing so. Logically, I believe Natalie is safe, happy, healthy, etc...Emotionally, I battle the same question over and over...How can Natalie possibly be "better off" without her Mommy...how can any child? I'm sure this sounds a bit crazy, but crazy or not it seems to be where I'm at tonight. I keep thinking that Zachary and Allison need me in many ways in spite of their being teenagers, and I still need my Mom in many ways in spite of being an adult as well. So...how can Natalie not still need me? Then I start to think that I am here for Zachary and Allison and my Mom is here for me, but that I canNOT BE HERE for Natalie any more because she is no longer here with me!! :( That just feels so wrong, so sad, and even so scary sometimes. And apparently tonight is one of those nights that has encompassed all of these questions, thoughts, and feelings! :( I know I can keep Natalie's memory alive, live by the many lessons she taught me, be inspired by all the inspiration she provided for me and for others, and so much more, which I sincerely try to do. On the other hand, I canNOT BE HERE for her any more, and that is a constant, unrelenting ache, which I think is probably what I've been actually trying to get at throughout this update; albeit in a long-winded, roundabout sort of way. To be completely honest, I’m don't think I truly knew what I was trying to say until I FINALLY said it, which leads me to the questions…Is this normal? Will it stop? Do I even want it to...because if it did, what would that mean for me as a Mother? I ask these questions because I am a Mother, like most, who truly loves her children and will do anything for them, most especially believe in them, encourage them, support them, and love them unconditionally The reality is that is part of what defines who I am as a Mother and as a person. I may not be the kind of Mother to my children that others are to theirs, and maybe I'm not even as good a Mother as some, but that does not change the depth of my love for my children or my desire to meet their every need, to ensure their happiness, to encourage their successes, to diminish their pain, to BE THERE for them in every way I possibly can!! And Natalie’s death did NOT change any of those feelings for me either, but how do I accomplish those things now? What do I do with these feelings? How do I do answer these questions or accept that I will never truly have answers to so many of them such as: Who is meeting Natalie's every need now? Who is ensuring her happiness? Who is THERE for her? Can anyone truly be there for her in the way that I was? And FAR more frightening is...what if no one actually is? What if she really needs ME...her Mother? Those are scary questions, and not having definitive answers to them is even scarier still. It leaves me feeling incredibly sad and unsure on so many levels!! Sometimes, like tonight, I even wonder if I’m losing my mind when my grief takes me down this road as I honestly know how illogical and irrational it all sounds. Unfortunately that doesn’t stop the journey I tend to take when I am in this place. That being said, I know I am not actually losing my mind and I know I am not crazy! I am simply a Mother who misses her child beyond belief!! Most of the time I can travel this road without appearing to others as if I'm actually losing it, so if you are one of the few who still visit Natalie’s site and you are at a point where you are ready to have me committed, rest assured that I am ok…I’m simply thinking out loud probably because I'm missing my precious little girl beyond all comprehension. Or maybe being exhausted and unable to sleep is factoring in to all of this. Or maybe it’s simply because I have a lot on my mind as life is as crazy here as always!!

I guess the bottom line is that sometimes I simply need to put things into words even at the risk of sounding like a lunatic in order to be able to figure them out enough to put them to rest for a bit so I can rest myself. Regardless of the reasons, I apologize for sounding completely off the wall in this update, but also appreciate having a place to be able to sound completely off the wall as well! ;)

Grief, I’m told, is a process. However, what I’ve learned through that process is that there is no specific path for grief nor an end in sight or even a right way or wrong way to go through it as the grief process if apparently different for everyone. For me, it is an unending journey of pain and sadness, memories that bring happiness, scary times, irrational times, and so much more. Grief and loss have irrevocably changed who I am, yet are constant companions in every aspect of my daily life. In a way it’s like a weight that I carry but never put down, instead I climb out of bed with that weight every day, and put one foot in front of the other in hopes of doing the best I can to live in a way that reflects and honors Natalie's life and her memory and Zachary and Allison's lives as well!!

Thank you for continuing to check in on us and for bearing with my emotional ups and downs. Honestly, not all days are quite like this one, so NO worries. Some days are simply harder than others, and the past couple have been particularly hard ones!!

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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


 
 

E-mail Author: hope2222@hotmail.com

 
 

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