Guest guest Posted January 20, 2003 Report Share Posted January 20, 2003 Oh, , my Cameron is not even near to what your precious Emma is struggling with but I feel just like you. I had an awful day yesterday, so depressed. Cameron would not tolerate any feeds at all. It was so sad. He finally kept 3.3 oz. down around three o'clock, hardly enough to keep a two year old going. I too hate the things our children and we ourselves have to go through. I wish to send you strength and peace and joy and hope, but I know all to often those things seem distant and foreign. Hug Emma, tell her how much you love her and enjoy her as much as possible, that is what I will do with Cameron too. It is so good to love on these precious little ones. I hope that brings you some comfort. I also hope you can get a small break. I do not get many and I have three other kids but I sure am learning to take them when I can get them. Even if it is just during Cameron's nap I try and re-energize. I hope you can take a small break and be good to yourself. Many prayers, good wishes and hugs to you, Riley -----Original Message-----From: RegardingEmma@... Sent: Sunday, January 19, 2003 7:26 PMTo: Mito Subject: HopelessAs strong as I try to be, emotionally, physically and spiritually, right now I feel hopeless. I want to take this disease and rip it to shreds. This disease does not deserve the right to inhabit the same space as my beuatiful little girl. My Emma is such a beautiful child, so happy, such a fighter. It seems tho, since we received the MRI results all i can do is think about what is "coming".. what is hiding around the corner for us... I dont know how to deal with all of this. I am tired of being strong, I am tired of being "very well put together". I want to scream, shout and curse this out of my daughter. I want to tell it that it DOES NOT have the right to take her away from me. It is not worthy enough to be associated with any part of her life. WHY MY EMMA? She has been thru so much already, 4 months on life support, transplant, all to be diagnosed with this wreched disease. I want to go back to being her mother. Back to holding her and not letting my mind wonder to "someday i wont be able to do this anymore"... seeing her smile and thinking "one day this beautiful smile might just disappear"Its just not fair, and I want to have something tangible to blame... and I dont.sorry this is so unorganized. I needed to talk and I dont know where else to go and know that I will be understood. If you think about it during your day, please say a prayer for me... Im struggling. Thanks. ~ ~mom to:Easton ~ 5 yrs. Healthy!Elijah ~ 2yrs. Moderate Speech DelayEmma Grace ~ 16 mo.Heart transplantHistiocytoid Cardiomyopathy Compex I MitoEmmas SitePlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2003 Report Share Posted January 20, 2003 If anyone can tell me how I can help Amie and Doyle I would be grateful for any help. Kathy you are doing so much more than most of our moms do...you and My mom correspond so you know our situation a little better...however, my mom frequently just doesn't call or come by bc it is too hard for her to deal with the reality of it all...this is hard on me...general, practical helpfulness is the best thing she could do for me...my mom is practically clinically depressed over the whole thing and that doesn't help anyone...I am trying to be merciful but the fact is...it only adds to my burden. There are a lot of grandmothers I know who are in major denial. This is why i think you are the perfect one to do the grandmothers group...my mom wont even consider it b/c the bottom line is, she doens't want to 'work' through it...bu t I think you have been given a mission...you are THE ONE to help these grandmothers through it while you walk it out with Audrey...hang in there, I bet Amy has only great things to say about how you have helped...we are all envious! deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2003 Report Share Posted January 20, 2003 Hi . Since I'm new to this group when I read your post I went to Emma's site. She is a bright beautiful little girl. Though my daughter struggles with different issues, feelings of physical and mental exhaustion, hopelessness, frustration and despair always seem to pop up, usually after a time of feeling really " good " about how things are going for the moment. During these times I do what you just did--ask for prayer, talk to those who have some idea what you are going through and I also try to re-focus on whats important--what I am here for, I look at my typical kids and at my little and know that I need to keep breathing and continue my journey. I'm sorry if this sounds " preachy " I don't mean it to, it has just seemed to work. A book that has really helped me recently is Holding on to Hope by Nancey Guthrie--about her journey with her daughter Hope, who has Zellwegers. I will keep you in my prayers and hope today is a better day. Randee mom to age 5 ?mito/genetic syndrome Jospeh age 10 and Kerri age 8 > As strong as I try to be, emotionally, physically and spiritually, right now > I feel hopeless. I want to take this disease and rip it to shreds. This > disease does not deserve the right to inhabit the same space as my beuatiful > little girl. > > My Emma is such a beautiful child, so happy, such a fighter. It seems tho, > since we received the MRI results all i can do is think about what is > " coming " .. what is hiding around the corner for us... I dont know how to deal > with all of this. > > I am tired of being strong, I am tired of being " very well put together " . I > want to scream, shout and curse this out of my daughter. I want to tell it > that it DOES NOT have the right to take her away from me. It is not worthy > enough to be associated with any part of her life. WHY MY EMMA? She has > been thru so much already, 4 months on life support, transplant, all to be > diagnosed with this wreched disease. > > I want to go back to being her mother. Back to holding her and not letting my > mind wonder to " someday i wont be able to do this anymore " ... seeing her > smile and thinking " one day this beautiful smile might just disappear " > > Its just not fair, and I want to have something tangible to blame... and I > dont. > > sorry this is so unorganized. I needed to talk and I dont know where else to > go and know that I will be understood. > > If you think about it during your day, please say a prayer for me... Im > struggling. > > Thanks. > > > ~ ~ > mom to: > Easton ~ 5 yrs. Healthy! > Elijah ~ 2yrs. Moderate Speech Delay > Emma Grace ~ 16 mo. > Heart transplant > Histiocytoid Cardiomyopathy > Compex I Mito > <A HREF= " www.gentlemothering.com/emma/ " >Emmas Site</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2003 Report Share Posted January 20, 2003 know that you are not alone feeling so blue! when we first got our daughter's dx of leighs, for the longest time i was very depressed and would cry at some point everyday. but..........as time goes by and we learn more info....i have gotten much stronger and positive. as you, i also have two other children who need me as much as my daughter. it isn't fair to our children that they have been given these terrible diseases. my prayers and thoughts are with you...you will get through this feeling and be back on top again! bethany mom to brennan 6, palmer & anna grace (leighs) 3 > As strong as I try to be, emotionally, physically and spiritually, right now > I feel hopeless. I want to take this disease and rip it to shreds. This > disease does not deserve the right to inhabit the same space as my beuatiful > little girl. > > My Emma is such a beautiful child, so happy, such a fighter. It seems tho, > since we received the MRI results all i can do is think about what is > " coming " .. what is hiding around the corner for us... I dont know how to deal > with all of this. > > I am tired of being strong, I am tired of being " very well put together " . I > want to scream, shout and curse this out of my daughter. I want to tell it > that it DOES NOT have the right to take her away from me. It is not worthy > enough to be associated with any part of her life. WHY MY EMMA? She has > been thru so much already, 4 months on life support, transplant, all to be > diagnosed with this wreched disease. > > I want to go back to being her mother. Back to holding her and not letting my > mind wonder to " someday i wont be able to do this anymore " ... seeing her > smile and thinking " one day this beautiful smile might just disappear " > > Its just not fair, and I want to have something tangible to blame... and I > dont. > > sorry this is so unorganized. I needed to talk and I dont know where else to > go and know that I will be understood. > > If you think about it during your day, please say a prayer for me... Im > struggling. > > Thanks. > > > ~ ~ > mom to: > Easton ~ 5 yrs. Healthy! > Elijah ~ 2yrs. Moderate Speech Delay > Emma Grace ~ 16 mo. > Heart transplant > Histiocytoid Cardiomyopathy > Compex I Mito > <A HREF= " www.gentlemothering.com/emma/ " >Emmas Site</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2003 Report Share Posted January 20, 2003 , My heart goes out to you and everyone else dealing with these sorts of problems. I have been feeling the same way lately. Why our Audrey? Watching my daughter and son-in-law deal with this is breaking my heart. I don't know how to help them deal with this horrible pain they are feeling. I don't know how to deal with my anger and my feelings. , I know it isn't much, but know that you are not in this alone, we are all here for each other. If you need to vent this is the place to do it, we can all understand your hurt better than anyone else. If anyone can tell me how I can help Amie and Doyle I would be grateful for any help. , you and Emma will have some special prayers sent up today. Know we are here for you. Thinking of you, Kathy, grandma to Audrey, 17mos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2003 Report Share Posted January 20, 2003 I totally understand how you feel. This past year had been so difficult. As we were new to the Mito world we went through the battery of tests and suggested conditions of what she could have. When she had her stroke it was such a shock even though we knew something was wrong because of her migraines being so bad. But then as the year progressed, she continued to have stroke-like episodes and more health problems. We were continually told to "wait to see what happens" because they only had aspirin to hopefully stop the episodes. Then we met Dr. Whiteman and started getting some answers. She continued to get worse and very sick through November and December and we felt so helpless. Her relatives were panicked and we were so frustrated, not knowing what to do. The ER docs here in town didn't see her condition as life threatening, but we found out from Dr. Whiteman that she had a high potential of a cardiac arrest. It was a hard time. Thankfully, her meds now are helping her in many ways and we are praying for better to come. Currently I have the flu going through the house (again) and hoping she doesn't get it!!! Anyway, we all understand what you are going through and it is so hard to know the future is not in our control. I will pray for you and your daughter. Hope we are of some comfort to you. Darla: mom to Asenath Re: Hopeless Ifanyone can tell me how I can help Amie and Doyle I would be grateful forany help.Kathyyou are doing so much more than most of our moms do...you and My mom correspond so you know our situation a little better...however, my mom frequently just doesn't call or come by bc it is too hard for her to deal with the reality of it all...this is hard on me...general, practical helpfulness is the best thing she could do for me...my mom is practically clinically depressed over the whole thing and that doesn't help anyone...I am trying to be merciful but the fact is...it only adds to my burden. There are a lot of grandmothers I know who are in major denial. This is why i think you are the perfect one to do the grandmothers group...my mom wont even consider it b/c the bottom line is, she doens't want to 'work' through it...bu t I think you have been given a mission...you are THE ONE to help these grandmothers through it while you walk it out with Audrey...hang in there, I bet Amy has only great things to say about how you have helped...we are all envious!deb Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2003 Report Share Posted January 20, 2003 , To be able to acknowledge the feelings you are having is a tremendous step! You are absolutely right...this disease is TERRIBLE, and it invades every aspect of our lives. The anger is real and justified...feel what you are feeling and know that you are not off the mark nor should you apologize. We are all Mama Bears (or Papa bears) when it comes to wanting to protect our kids. And with mito, there is no way to fight the demon or get rid of the bad guy or do any of the other things that parents do to make their kids okay. WE can't protect them, because we ourselves don't know what's around the corner. It is very frustrating to have to fight an unseen/unknown/unfeeling foe. and what's worse is we never really know where mito will attack next. You are so very brave, and your precious baby girl sees that, and knows that for what it is. Even when you feel that you can't go on one more step, not one more day with this terrible ache in your soul just know that you are truly not alone. You WILL find the strength, for Emma's sake. Even if you have to get through the day moment by moment, you CAN do it. Keeping the panic at bay is never easy with mito. Like you said, you always think about what is coming next. I think we all tend to do that. But it tends to make the moments we do have even more precious. Cherish those smiles and hugs and even the things that drive you crazy. I know you are in intense pain right now. I am sending prayers for angels to surround you and hold you close today. With Admiration for your valiant effort, ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2003 Report Share Posted January 20, 2003 Deb, Thanks for the kind words. My husband is like many of the grandparents, he just doesn't want to talk about Audrey's illness. I tend to talk to many of my friends at work and that helps me some, I don't like to burden Amie with my worries as she has more than she should. Right now I am trying to keep busy and not think about what is going on in Cleveland right now. Audrey's appointment was first thing this morning and last night when I talked to Amie she said she wasn't going to tell us anything until they get home tomorrow night because she wants to tell her Dad and I together and not over the phone. Amie also said they felt like backing out of the appointment today but knew they shouldn't. My heart aches for them, I can't hardly talk about it right now without the tears flowing. Today is Audrey's sister, Melinda, birthday, she is a big six, and such a good big sister. Amie and Doyle ordered cupcakes for her special treat at school today so this afternoon I am going to go to school and hope no one asks about Audrey. First off, this is Melinda's day, and second off, I don' want to start crying. Tonight I am going to fix Melinda's favorite meal, spaghetti and meatballs. This awful disease is so hard on the other children as well. It is difficult to find the time for everyone. Again, I would like to say thanks for the kind words and if there are any grandparents that would like to contact me I would welcome them. God Bless each and everyone of you, you have such a cross to bare. I admire you all for your strength and courage. Please know, I pray for each and everyone of you and your babies. Love goes out to all of you, Kathy, grandma to Audrey, 17mos Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.