Another form

I have another application form to fill for Emily.

It’s for the Sunshine Foundation. They grant dreams for Canadian kids.

To qualify, a child must be:
1. between the age of 3 and 18.
2. Challenged by a severe physical disability or life-threatening illness.
3. Resident of Canada
4. Cognitively and physically capable of expressing his or her own dream.

I contacted them at least a year ago to see if Emily qualified.

Emily expressed her dream which involves Justin Bieber but doesn’t involve one of his jam packed and extremely loud concert.

We passed the first step quickly enough. Now I need to fill the detailed form and get Emily’s doctor to sign-off on it.

I admit, I’ve been delaying this process for 3 reasons.

1. What if she doesn’t get it? She understands enough to know what we are doing. The foundation wanted her to express her dream. She did that so now she wants it.

2. What if she qualifies and Justin Bieber or whomever makes decision for him says no to her dream? She’s really specific and I know that he works with Make a Wish, not sure if the Sunshine foundation has any pull there…

3. I have to list Emily’s physical disabilities… This sucks so much. I do understand why but it takes all the happy/positive out of this adventure.

If I want her to qualify, I need to show that she is severely physically disabled.

I prefer to look at what she can do!

I NEED to look at what she can do!

The form is asking about her physical movement level of independence and need for assistance:
1. Use of hands/arms
2. Use of legs
3. Sight
3. Hearing

Interaction with others
1. Other children
2. Siblings
3. Adults

Emotional response to
1. Unfamiliar situations
2. Stimulating situations

For each of those questions, I answered partial or limited and attached a list of information.

My attachment is four pages long and make me want to cry.

I have been taking mental notes for months about her struggles and challenges in order to make her application as complete as possible.

I hate, yes hate, that I have to do this to help her maybe realize her dream. I hope and pray to whomever is listening that Emily never see this detailed application.

I would hate for her to see a list of “can’t” when we have been telling her for 15 years to focus on “can”.

I truly dislike forms and assessment. Even the positive ones turn-out to be hurtful.

One a side note, thank you to whomever is clicking on my top mommy blog icon. I’m now sitting in 31st overall on nearly 4,400 blogs on their site. That’s just truly amazing!

Thank you for reading me and liking my posts!


Believing is half the battle

October 1999 – Emily is just over 15 months old and we finally have a diagnosis…. She has something called the Cri du Chat syndrome. Back in 1999, there isn’t much of anything out there for us to find information… It is hard to believe that all this was before facebook!

I remember sitting in the genetic counsellor’s office and listening to what our life was going to be….. All the information coming straight from what seem to be a giant book of everything a doctor needs to know….. just between us, I really dislike that book!

….. your daughter will never walk, talk, recognize you, understand you or show emotions.  She will be fed by tube as she will not be able to eat enough to grow properly. Your child will be in her own world, in a wheelchair, fed by tube…. The “good luck” was not said but we felt it!

I remember telling the genetic counselor that Emily could recognize us, that she recognized voices and that when her dad or I entered a room, she was looking for us. Her head, the only part of her body she seemed to control, would be turning around looking for us. She didn’t do that for strangers….

The answer from the genetic counselor was harsh…. You want to believe she is recognizing you but in reality she isn’t… your daughter can’t do that.

It wasn’t my imagination!  She knew us!  She also knew her babysitter and she loved us, in her own way!

Over the days, weeks, months and years following her diagnosis, I held on tight to the fact that Emily could recognized us!  If she could do that, what else would she be able to do?

I didn’t care what was in that book, I was going to give my child the best life she could ever have and I was going to make sure that she kept recognizing us and that slowly other milestones would be cross off the list…

When you are faced with bad news, what keeps you going?