and

[Guest guest]

, I can only imagine what you and your family have been going

through these past few months, and I wanted to share with you some of

what I have learned these past 4 incredibly tumultuous wonderful

years with our Audrey.

First, when you're a parent and the future of your child is SO

UNKNOWN, you only know the present. And so you tend to believe that

what is happening RIGHT NOW will continue. Believe me, this is NEVER

true. When you feel that you can't handle things, remember that they

will not stay the way they are. It's hard to believe this - and

sometimes things get a little worse before they get better, but try

to have faith in your little son. All of our wonderful babies are

strong, independent little individuals, even with the frailties they

have been born with. They are fighting to stay with us and to

thrive, and we have to acknowledge that they have the power in their

tiny bodies to decide to stay or not. One of the challenges of being

a parent of a child with disabilities is to recognize their strengths

and to validate them, since we try to compensate and help them so

intensely with their weaknesses.

I just wanted to let you know that I believe is very aware of

how much you love him, and he's fighting very hard to be here now and

that this is his fight, no matter how difficult that may be to accept.

You're doing everything right.

God bless you all and I'll continue to say prayers for you and your

sweet little boy.

Jill, Mom to Audrey (almost 4!) with PMG