Why does Grace get a wish

So someone asked the other day about Grace qualifying for make-a-wish. I figure if at least one person is asking then there are probably other people wondering. 

 If ur NOT wondering why she's getting a wish, then you certainly don't need to read this. Please feel free to go read my status update. I'm guessing its either stupidly funny or about a trip to Frazzleberry  Lemme be honest, this is depressing, and I couldn't come up with any way to make this funny.

First of all, we work very hard to stay positive about her health. I know that the only one who loves that little girl more than Wayne and I is my savior, Jesus Christ. We continue to pray for a cure for CF and trust God with our precious child.

 The research going on is nothing short of amazing. The cure is getting closer with every day and every donation. For a child for CF, she is doing wonderfully. Understand that statement is like saying someone is an amazing runner...for a guy with one leg. It doesn't mean everything is 'normal.'

This is neither meant to be a sob story or a pity party. It is, truly, an answer to the question of why does Grace get a wish. That said, here is where we stand today...

 She does not look sick. The truth is that the majority of our friends see her take pills when she eats. Other than that I get that she 'looks' very healthy...she is not.

 She spends a minimum of 40 min a day doing CPT nowadays, aka hooked up to a machine. When she was younger it was an hour and a half of manual CPT. She gets up 30 to 40 min early in the morning to start treatments. In the evenings, she stops playtime to do it again. She has spent over 2.000 hours of her life doing CPT. That's over 80 days of her life she's spent not being a 'normal' child...and remember she's only 6. This does not include time spent doing nebulizers that usually last longer than the time doing the CPT.

 She takes somewhere around 30 pills a day, 4 inhalers and two powders. That's when she's not sick.

 She had three hospital stays in the last 9 mos. And remember each time includes countless shots and IVs. Think about times you've been in the hospital. Now imagine what that would be like if you were a kindergartner who doesn't fully understand what's going on or why you feel so terrible.

 She has serious bowel problems. Some of her meds constipate her so we try to fight that with Miralax and fiber supplements. Those tend to make her have diarrhea. Some days she make go 4 times and others not at all. She's afraid to use the bathroom at school because she doesn't want the other kids to know she has diarrhea. She's afraid she won't be able to clean herself up. When she hasn't pooped in a day or so, she's scared to death she'll be getting another enema. And when she does need to poop she can have severe abdominal pain, go white in the face and think she has to throw up. 

 I know that people have no way to know the little ways the disease effects her. She's afraid to go anywhere someone might be smoking. She's learned to hold her breath outside of buildings just in case. I turn on the shower and let it run for several minutes before she gets in to try and wash out any psudemonias. For the same reason, she doesn't drink out of water coolers or water fountains. And for that same reason she only swims every other month when she's on Tobi, a nebulized antibiotic. There are countless little ways this disease gets in her way and changes her childhood.

 Now let's talk odds. 1 out of 4 CF patients doesn't make it to adulthood. Not only do I, and now you know this fact, at some point in the next few years Grace will know that too. She's beginning to understand this disease and some day soon a conversation is coming where she will inevitably ask 'will this kill me?' When we talk about heaven, it's not about streets of gold and mansions. It's about not having to do treatments and that there's no CF in heaven. Somedays she cries. She tells me she doesn't want to have Cystic Fibrosis anymore. She asks me why she has it, and Seth doesn't. I don't have any answers.

And then comes make a wish. The day they came out to talk to her I don't know who was more excited, me or her. She was so happy. She showed them her room and told them how much she loved Barbies and dolphins. Talked about Disneyworld and meeting Cinderella. And I just grinned from ear to ear.

Then they left, and she feel very happily asleep.

And I went into my bedroom, closed the door and sobbed. The honest truth is no one wants their child to qualify for make a wish. No one wants to admit that their child could lose their life to a disease. The truth is this disease is ugly beyond words. There is no cure for her.There is no remission. It's steady and progressive and getting worse for my princess everyday. 

We are grateful beyond words to make a wish for this amazing blessing, but make no mistake that I would give up my life for her NOT to qualify for this. 

And that is why Grace is getting a make a wish.