Dealing with the fear of the unknown

[Guest guest]

You are in no way alone on this one. I think this disease causes a nonstop rollercoaster of emotions. We are dealing with it right now. A few months ago Dr. Cohen was so excited about how well Grace was doing, and thought she may never regress. About two weeks later, she started. Although we still have the possibility her current regression is due to a growth spurt, it still worries me to no degree. I see her gross motor skills declining and she will only be two in June. I am so afraid she will not be able to do the things she wants to do because she will be limited by this stupid disease. I guess I try to completely focus on the good things. Like today she learned another word "hi", not a huge step but for her it gives her about 3 words now that she can say. Also, finally, it is a word she can use when she is around other people. (Her other words are mommy, and hot). I guess no matter how small the step is, it is a step. Best wishes.

[Guest guest]

Hi all,

Just needing some help from those of you who have been dealing with

this awhile. I don't post much as I feel so new and overwhelmed so much

of the time still, even though it has been a year now. I went through

so many

feelings when Joe was diagnosed and then when he had such fabulous

results

from starting the cocktail, it seemed that we had everything under

control.

Then when I had my biopsy, I had some fear but thought that it would

all be ok,

like Joe. With the latest bad news from the endocrinologist, I feel

like I have

been run over by a semi . I am trying to let ppl know but the majority

seem

to think I am just over-reacting, or feeling sorry for myself. I

really hope I am

not but on many occassions have felt your fears and pain right along

side you.

I could really use some help on not letting my imagination get the

better of me.

And dealing with this fear. Thanks so much.

AnnMarie- Complex IV

Married to my best friend Rick, mom of (14), (11),

Cassandra(6)

and Joe(4) - complex IV, lactic

acidosis, CP, tethered chord syndrome,

dysautonomia, and a smile that never quits

:-)

[Guest guest]

Hi Ann Marie,

Hang in there. I can imagine how hard it is to know that you are both dealing with the same diagnosis. Remember what the UMDF literature says though about the course of the disorder being different in each family member..... I know that when I was diagnosed with an immune deficiency and my son Sam (now 7, but he was 3 at the time) was also diagnosed with the same one - I felt very sad and scared. And, I think I remember also feeling very "different" than the rest of the world and that made me feel alone. As I've gotten hooked up with the internet groups, I've found how I"m not so different after all. I know immune def. and mito are not the same disease (although maybe immune def and mito are connected) so I'm sure your experience is not exactly like mine. But each day past the dx, I got a little more comfortable with having the disorder and accepting of the limitations it has posed on my life. And, it's okay. It made me slow down for a while and enjoy things more b/c I couldn't go out and do a lot. Now, with tx, I'm more healthy and my 7 yr. old is too.But, of course, life threw mito/metabolic disorder (we'll see once we get the dx from Shoffner) at my younger son.

Anyhow, we are all here for you. Take it a day at a time as much as you can. And, it's okay to feel sorry for yourself and sad for a while. Grief comes with these things, too. But then, happiness will come again too.

Anne R

[Guest guest]

wow mysty u summed it up.

Everyday I wake up I wonder is it going to be a good day or bad and

when it seems to be good in the beginning I guarantee by the mid or

end it'll be hard on Caeden. The fear of the unknown is the worse. I

think everyone wishes for the crystal ball to tell us our kids are

all going to be fine. I always wish I knew what I was up against.

I've learned I am up against the unknown the inconsitancy of his

everyday life. I pray that they find help for us through research and

none of our children will have to suffer anymore.