Sunday, July 26, 2009

An inspiration

A week or so a go our friend Gavin's mom emailed me and said she found something she had to get for Jax. It came yesterday and I agree, it is soo Jax.

I can't believe how many people my little munchkin has touched. That everyone feels the same way I do, he is an inspiration.
Today me and my sisters and mom went and saw My Sisters keeper. Stop reading now if you don't want to hear about it. Although I promise not to give away the ending, I've gotten in trouble for telling too much about a movie in my posts.
I read the book a couple of years ago, so I knew what it was about, but I never knew what an impact the movie would have on my emotions. Its about a young girl who has luekemia, and her younger sister is an invitro baby genetically matched so she can donate bone marrow and other things. The young sister is now expected to give her sick sister a kidney that she needs, but she's tired of being the donor, so she sue's her family for medical emancipation.
Although leukemia is one thing we haven't had to deal with, of course many of our friends have. And even a cousin of mine. It is one thing I'm terrified for Jax to get. It is common in DS kids, and so far he's had every complication you can think of, so I just wait for this to happen. And I know his little body would never survive it. But it also hit home in other ways. The mom will not give up, will not let the daughter go. It reminded me of me. When I met with the palliative care team last month, thats one thing someone brought up. Is taking care of Jax become more like a job to me, something that I have to do, and won't let go of it. Its clear the daughter is ready to go, but mom won't let it happen. I have already been feeling like that lately about Jax. If Boston says they can do surgery but its incredibly risky (if they ever call) am I just doing the surgery for me? Am I putting him through too much. The difference is he can't tell me how he feels, unlike the girl.
Trust me, its an incredible movie, and I highly recommend it. But prepare yourself, expecially if your the mom to a medically needy child. I cried with the rest of the theater, but I was holding back sobs.

26 comments:

ABandCsMom said...

Me on the other hand, can never watch this movie. Even having lived through cancer with Carly and marching along 26 terribly hard and sick months of treatments. Nearly losing Carly 3 different times because of chemo/cancer. I can't EVER imagine seeing this movie. Cancer just shook me too the core. I've heard it's a fantastic movie though. Although, I was advised by a few who have seen it. Not to see it.

Yes, your little guy is such an inspiration. I LOVE that shirt! Keep on keepin' on Jaxson.

Mommy to those Special Ks said...

LOVE the shirt!!!!! Didn't read about the movie because I SO want to see it still. It's my most favorite book EVER!!!

Lily said...

Love the shirt!

Cammie Heflin said...

That is a perfect shirt for Jax! I love it! I read the book and I plan on seeing the movie but I think I'll do it at home!

Kim Rees said...

I absolutely love Jax's shirt! It's so appropriate and he looks so darn cute in it!

Adam, Jaci, Grant and Grace said...

That shirt is perfect for Jax! I really want to see the movie but probably won't until it is out on video. As far as you go, I think you just keep doing what you are doing and trust your instincts. you will know when enough is enough. You love Jax and so you want to do everything possible for him. You are an amazing mother. YOU were chosen to be his mother and therefore will make the correct decisions regarding his care. I think we need to get you a shirt to match Jax. thanks for being and inspiration to me and to so many others. :-)

Phoenix's Mom said...

Great shirt!!! We love you Jaxson!!!

Alison said...

That is a great shirt. As the mum of a child needing a kidney transplant I'm not sure if I'll see the movie, but I can relate to the dilemma of 'how much treatment is too much'. Sometimes I wonder this with Ashlea - is it too much to put her through a transplant? But if I don't the alternative is unbearable. I am praying that it will be obvious what the right decision is - I'll pray the same for you guys.

Maureen said...

Hey Lacey, I was in SLC airport for a 5 and a 1/2 hour layover yesterday. It was really nice to see your mountians. Too bad we couldn't connect, it was soo last minute. :) Good luck.

Ria said...

Love the shirt!
I might have to wait until the movie is available on dvd...and have a whole box of kleenex by me.

Emily said...

Jaxson IS my inspiration! I love that boy! You are also my inspiration Lacey! I am on the fence about seeing the movie. I am a big cry baby as it is.

Heather said...
This comment has been removed by the author.
Heather said...

No can do the movie!Way too close.Honestly,even before Zoey's diagnosis I wouldn't have seen it.I find there are just way too many real,true life,too close to home lives that are going through battles to see one played out in the theater.Nothing against you my friend,because you know I love you.As for Jax.He is an inspiration.He is the ultimate inspiration.I understand how you are feeling and I I want so badly for you to be able to take just one moment at a time.I know that is difficult.Trust me I know.But if we try to put our trust in the knowledge that each day will take care of itself. in whatever way that will be,we will navigate through the storm.Always.

Kristin said...

GREAT shirt!

CFMama said...

Love Jax's Tshirt. He IS an inspiration indeed! ...And I am going to have to request that book from the library.

Dawn said...

Love his shirt Stole his pix.

Loren Stow said...

AWESOME t-shirt!!

stephanie said...

Love the shirt , it's so true, but I think Jax's mom should have a matching one.
And Lacey, Jax is your little boy, You're going to do whatever you can to keep him with you. If there is any thing left in this world that could help him in any way, you'll be there. I think you are the best mother in the world for Jax.

The VW's said...

Jax is definitely the definition of Inspiration! That boy has inspired me and touched me so much and I haven't even met this little man! (But, I plan on it one day!) What a perfect shirt and how thoughtful of her to send it to him!

I was thinking that movie would be a good one, but I'm afraid to watch it because I'm sure it would evoke serious sobs from me!

Praying you hear from Boston soon! And, I'll be praying that your decision will come easily, if they are willing to do the surgery! Did you ever hear anything from the Michigan hospital? This waiting is killing me! I can only imagine how hard it must be for you and your family!

Love, Hugs and Prayers!!!

Conrad, Megan and Our Precious Keaton said...

They must of had young little Jax in mind when they designed this t-shirt! We love him lots - even from across the world! God bless, Megs and Keaton

Kim said...

He is an absolute inspiration....as is your family! The shirt is perfect!

Melissa said...

What an awesome person to have sent such a sweet shirt! PERFECT for it's so true! Jax is an inspirtation & so are you Lacey!

I've been wanting to see that Movie...wish we lived closer, I'd go with you;)

So, I read on FB that you haven't heard from Boston. It's making me want to take a ride there & shake them...JERKS! Can your Pedi call or somethin..SHEESH!!

Hang in there...Hope Jax is doing ok today:)
{{HUGS}}

Angi said...

Cutest darn thing I have ever seen (Jaxson and the shirt!!!!) I know you won't be given anything you can't handle, just keep moving forward, like you don't have a choice:) All of your kids need you...Cause you are amazing!

Anderson Family said...

I agree - Lacey you need a shirt that matches. I love it - so cute!!

I can't wait to see that movie - I read the book and loved it - but I can imagine it will be a one box kleenex movie for me.

And I truly believe there will come a time when you will just know when Jax has had enough. We will pray it won't be for a very very long time - because he still needs to be here to inspire all of us to do a little better!!

Loves to Jaxson!
Kristi

Trina and Jophie said...

Awww what a cute shirt.....Almost as cute as the little guy wearin' it ;)

Hugs,
Trina and Jophie

Michelle said...

how perfect is that tshirt?! Love it!