I just need a good cry.

[Guest guest]

Hi Everyone, and Happy New Year.

We have been home since Christmas Eve, and Abigail is doing well.

Still weaker than when she first became ill this round. It is

greatly noticeble, and painful to witness.

Abigail's last illness, told us quite a lot. Most of which we I

didn't want to know.

The nasally sound in her voice isn't going away, and now that I know

it is because of muscle weakness and mean that she isn't getting

enough air I am having nightmares about it.

Knowing that she has myoblobin in her urine even when her CK levels

are relativley low for her was yet another blow for me. Now I ponder

how much damage has been done, and how much more can she endure.

The reality of how ill she is...even we she looks well enough

clinicly is numbing. I have gone through periods of fear, anger, and

grief over this illness before. Right now though...I can not express

what I am feeling...as this is a new emotion for me.

I attend most of the appointments with her, usually alone. I stay

with her night after night in the hospital. There is no where else I

want to be, but I just want him to feel what I feel. I want him to

understand what it feels like to be there 24/7 and completely

helpless.

For the first time I nearly yelled at my husband over his lack of

understanding concerning the big picture. I demanded that he face

the reality of what is happening to Abigail, and then felt guilty

for it when I saw him cry. When I went over my fears and their basis

he acted as if he were hearing it all for the first time.

Right now, I am just hurt...and having a hard time understanding why

my daughter has this awful illness. I know I am not the only parent

who feels these things...yet tonight I feel very alone.

I am longing for another span of time when we can breath easily, and

almost forget that this illness exists. However, with each day that

passes it becomes more likely that those periods are over. I need a

good cry, I need to release all the emotions that are building up in

me...and then I will be ok again.

Thx for listening.

Myst