Meet the McNeil Family

Meet the McNeil Family

Tuesday, March 31, 2009

Just As You Are


Yesterday I got a photo from Waverly's teacher.  She was so excited because Waverly, after much hand over hand prompting, rolled a truck back and forth on the floor for a few seconds.  Incredibly simple action, but this is HUGE for Wavey.  She doesn't play with any toys anymore, at least not appropriately.  Everything goes straight into her mouth.  I had to laugh last night, in the midst of tears.  I was thrilled to hear that Waverly learned this small skill and I wanted to celebrate.  Then I was quickly reminded that this is not something most moms of 5 year-olds get excited about.  But that is what makes our little family special.

There are moments when I say "I wish you could have known her when...".  I fill in the sentence with some behavior or something she used to say before the disease ravaged her little brain.  Of course I wish I could take the MPS away and watch her live a healthy life.  But I am beginning to fully realize the incredible beauty in who she is now.


14 comments:

Jan said...

What a wonderful thing to celebrate! I am a mom of a child w/ special needs and I know what it's like to celebrate these kinds of things. Thanks for sharing this post, it is very exciting!

pknelson said...

Thank you for this wonderful illustration. Do you realize that God is using you and your precious family to teach me (and others I am sure) something new and awesome almost every day?? Today - "realize the incredible beauty in who she is NOW." Thank you Shannon for sharing your triumphs and pain but most of all for sharing a peek into your special heart.

Jenkins said...

That is beautiful, midst the triumph and tears.
She is beautiful, beautiful as Waverly and who she is.

Jawn said...

YAY!!!! So proud of Waverly!!!!! Good job!!!!!

mrs boo radley said...

Beautiful. Now.

Anonymous said...

Thank you, Waverly's teacher, for marking that moment.

Joanne said...

Hi Shannon,

Your post brought tears to my eyes, and what a beautiful photograph you took to capture the moment! I am so excited for you about Waverly's newly learned skill. I can really relate to what you said about how tough those moments can be, happy and sad all at the same time. Thanks for sharing that beautiful moment!

Beth said...

Lovely.

Charity said...

Go Waverly, go!

momma's heart said...

And she has a very beautiful, wise Mommy! Lucky girl!

Misty said...

Wavey is beautiful and anything that she is able to accomplish should be celebrated! Congratulations to you all! Misty

Anonymous said...

just wanted to let you know that i saw 'a hundred for a home' brochures today at the union at TU, and the stack was almost gone! know that your Taylor family loves you and that i personally pray for you whenever i think of you

Kim said...

That is so awesome! Way to go Waverly!

Laura said...

I'm catching up on your blog, and this one rocked me. I'm crying.

I'm celebrating with you. And crying too.

Can't wait to see you all this summer when we're back in DC.