Monday, March 24, 2008

I hope everyone had a fantastic Easter. Payton managed to make it thru possibly 5 minutes of the Easter service (they dimmed the lights and it got her a bit nervous, then someone started playing a flute and that was the end of that!). Bob took her home and Koen and I stayed - which I really enjoyed. It'd been a while since I'd been able to attend for the entire service.

This Easter I found myself really missing my grandparents. They've been gone for about seven years now and I know if they walked thru the door today it'd be like they were never gone.....we'd pick up right where we left off. I think so much of it is how I wish they were here to see my children. My grandma loved kids and I could just picture her having a ball with all the kids around. And-I picture her just going crazy over Payton.....loving her, supporting her. And-I know she would cry right with me when I'd had a tough day dealing with the different emotions we go thru raising a child with a disability. Wow, I miss them. But, I know I will see them again some day.

This past weekend the listserve was quite busy with how to actually describe WS. Some were upset because a gentleman stated it meant something was "wrong" with his child. I'm sure I've even said that before because if there wasn't anything 'wrong' with Payton why are we going to the doctor so much? Why are we having so many therapies, etc? I realize it just hurt some feelings but I wanted to post what a father said about his daughter. His words are so true. There are so many times when I blog that I'm hoping parents do not think I love Payton any less because of her having WS. It's just not the case at all - I just wish for more for her. Here is what he typed - he explained it so well.....much better than I ever could, so I thought I would post it.

We're not talking about our children's disposition, or character, or spirit, or love of life, or gentleness, or empathy, or humanity. There should also be no debate here that in these areas they are far greater humans than the rest of us who do not have Williams.
Would I give anything to stop Erin from having surgeries and lifelong medical problems, to not know an endless parade of doctors on a first name basis, to not have her be on Concerta every day of her life without her behavior being out of control, to not subject her to endless testing and retesting that is so difficult for her, to not spend tens of thousands of dollars on attorneys and countless months/years fighting school systems to get basic education, to not need to have national conventions to learn how to deal with the system in order to allow her to live a somewhat normal life, to not have to worry and plan for the fact she may never live independently, to remove the probability that she may never get married have a family or children, to not have to worry about (and plan for) who will take care of her when we're gone and the burden we may have to place on our other children, to not watch her struggle with so much in her life that is not a struggle for anyone else, to have her able to run and catch a ball, to not watch as she despairs and withdraws because no one wants to play with her or be her friend.
Would I give anything for that? You're damn right I would - in a heartbeat.
If you're reading this thinking this means we would love Erin more if she didn't have WS then you're completely missing the point. We couldn't love Erin any more than we do - she is one of the three joys in our lives (the other two being her brothers).
But this isn't about us, or you, or the world. It's about our children and their lives. It's about Erin and Erin's life. And would Erin's life be better without WS - It absolutely would. And I would challenge anyone who would suggest otherwise as being selfish and not having Erin's best interests at heart.

I'm so thankful we live in a time where all of us can communicate together - vent about the bad times and CELEBRATE in the good times! It's nice when others can put things into words that you feel, but can't explain.


Every minute counts.... said...

I have had the pleasure of meeting this Dad in person and I can say he is a true inspiritation to me.He has a way with words, I can say that much.

I am glad that you got to sit through the entire service at church. Sometimes I think it would be good for me to go without any distractions, maybe I would get to enjoy it instead of worrying about if Abi is okay.
I love that song too. Thanks for sharing it. I haven't heard it in a long time.


Every minute counts.... said...

How could I forget to write that I LOVE the pictures!!!! the Black and white one is BEAUTIFUL!!!!


Angela M. Littlejohn said...

Those are the sweetest pictures! I especially love the one in black and white. Did Bob take it? He's really good at capturing so much in a picture and the lighting is awesome too! I think Koen looks a little like Tanner when he was that age!

Penny said...

Beautiful pictures!

nabbymn said...

Greetings, I cam to your page through Watching Payton's videos makes me cry. Only because I miss my niece, she's 3 and has WS. They live in NC. I wanted to send you a personal email and didn't see it on your site so I apologize for posting this here. I'm looking to do a fundraiser this year for my sister/WS. Do they have anything of the such right now that you know of?

Thanks for sharing Payton's videos! We love her!!


Julie said...

I think he summed up what we all feel. Just for the record I have never gotten the impression that you love Payton less. On the contrary when you comment about her anxieties it is with little concern for yourselves. I can almost hear the sorrow in your words and my heart aches for you.

Michelle said...

Payton's dress is is she!

Thanks for sharing what that dad wrote; I can relate to a lot of what he said.

It seems every so often on a Ds message board the hypothetical question always comes up "If you could take away your child's Ds would you?" and most of the parents respond that of course they wouldn't because that is what makes their child who they are and they wouldn't change a thing about them!

I always feel like I'm in a small miniority because I don't really feel that way, then I feel GUILTY for not feeling that way - like people might think I love Kayla less or something because I would change that fact about her. Which isn't true of course - I absolutely love Kayla w/all my heart, but it doesn't mean I want or wish for her to have a dx, for all the known struggles she'll have to deal with etc...just like this dad was saying. Anyway, I'm rambling now, just wanted to say thanks for sharing!

Michelle said...

I loved what he wrote as well! He communicated what is in my heart perfectly. We were going to try to bring Ari to Easter Mass but lost our nerve...we thought maybe we should bring her on a "regular" Sunday first. Good for Payton for making it through 5 minutes and good for you for getting to stay and enjoy it.
BTW...I love love love the pictures they are both sooo beautiful!

Amy said...

At least Payton made it through 5 minutes, I didn't even make it out the door. Gorgeous pic of Payton, my favorite so far! Would I rewind my life to before the DX, give away all the blessings that have been bestowed along with the WS, the enlightenment, the friendships, the courage, the compassion, the journey? Would I give away the pain, the suffering of my child, the grief, the struggles, the doctors, the crying (hers and mine)? What would I give up for a healthy child? I'll tell you if it ever becomes possible.

Laura said...

Beautiful pictures!!!

He definately has a way with words, and said it much better than I ever could.

Heather said...

I made the comment to my hubby one time like, If it was possible medically to fix Caleb's genetics, would he want to? And he told me that we can't change him so why wonder if we would. I don't love him less either. I just have more things to worry about with him, which sometimes makes me feel like I am less grateful about the WS than I should be. If he didn't have WS, would he still cuddle with me? Would he break out in song and dance in the middle of a conversation? Would he smile as much? Would he care as much about other people? There are things to be grateful for.

The pictures are beautiful. You have two baby dolls.

Kerry said...

The pics are beautiful~

How funny, I was going to post the listserve response as well because it is so true. I think we are on the same page :)