Re: The way I feel...[long, vent]/Thanks

[Guest guest]

Hi guys,

Thanks for all your support. As all of you said, all of this is easier when you can share the burden. Today, I felt a little better. I'm trying so hard to take it all one day at a time and to tell myself that Asher's disease is not progressing right now; he's actually doing very well with the supplements and G-tube (almost has more energy than I can manage:) and I will try to hold these times with gratitude and grace (although I need to cry a bit too).

I called the UMDF today to ask a couple questions. One is that I would LOVE to get in touch with a family whose child or children were diagnosed with mito (when they were relatively young - although I know this is a fairly "newly" named disease) and have grown up (you know, like college age) and are doing relatively well. The woman I spoke to at UMDF is going to try to find someone (she does know of a few families like that) that is willing to speak to me. I just think that would give me more hope. Redefining hope is hard.

Thanks to every one of you,

Anne R

[Guest guest]

Anne~

I totally know how you are feeling right now. We have no definite diagnosis, but from the time our neuro. mentioned mito. disorders I have had days where I feel just the same. The first few days were really hard, but then I tried to come to grips with what was happening. It is hard. Somedays are much harder than others. Not even days, sometimes it is just certain moments. I does make it a little easier to know there are people here to talk to and ask questions who understand and have been through all this and have great advice and support to offer.

I, too, have times when all I can think about it Caden's future. What will he be able to do, and not do? I don't want him to miss out on all those little boy things like baseball and soccer or just walking or riding a bike. I don't want other children to tease him if he goes to school. I don't want people to stare at him because he is 8 months old and can't hold his head up yet. I want him to experience happiness and grow up to be a strong young man. And yes, I want him to have to try to find a girl to please mother and when he does, I want to see him marry her and maybe have a family. I have to face the reality that lots of those things may not happen. I have to redefine my hope for him. I have to learn to dream new dreams and that is harder some days than others.

I also wonder about the future for and I. Will we be able to give Caden brothers or sisters? I know we can or could, but I don't want to if we will have to face this again. Will we be able to handle all this? Will we make the right decisions for Caden?

I understand your need or want to talk to a family with kids that have grown-up with this disease. Someone like that would give us the hope we need that our boys will do the same.

I know how hard it is to take it one day at a time. We all have to try to savor each moment with our little ones. We have to try to live for the moment and make it the happiest moment they have ever experienced. Keep your head up and keep looking at all the great things Asher is doing. Cry when you need to, scream and get mad when you need to. Turn to your family and friends for help and support. I hope Asher is doing great day!

Vicki

Proud mom to Caden: 7.5 mo. possible mito.

Re: The way I feel...[long, vent]/Thanks

Hi guys,Thanks for all your support. As all of you said, all of this is easier when you can share the burden. Today, I felt a little better. I'm trying so hard to take it all one day at a time and to tell myself that Asher's disease is not progressing right now; he's actually doing very well with the supplements and G-tube (almost has more energy than I can manage:) and I will try to hold these times with gratitude and grace (although I need to cry a bit too).I called the UMDF today to ask a couple questions. One is that I would LOVE to get in touch with a family whose child or children were diagnosed with mito (when they were relatively young - although I know this is a fairly "newly" named disease) and have grown up (you know, like college age) and are doing relatively well. The woman I spoke to at UMDF is going to try to find someone (she does know of a few families like that) that is willing to speak to me. I just think that would give me more hope. Redefining hope is hard.Thanks to every one of you,Anne R Please contact mito-owner with any problems or questions.