A Life Worth Celebrating


When we were told to never expect our child to walk, talk, or take care of herself the pain was indescribable.  Sometimes, it still is.  I’ve spent many nights lying awake thinking, planning, and being fearful of the future.  As my baby gets bigger, my fears grow bigger too.  Right now, she is small.  I can still pick her up with one arm, she is still in an infant car seat that I can carry, and she is easy maneuver.  One day, she will not be so easy.  Will I be strong enough?  Will I be able?  I also have another child that is growing who needs me.  Sometimes all of me.  Can I carry both?

The times where I feel like my weight is the heaviest is when help comes through.  So far, it’s been unfailing and right on cue.  From day one of this experience people have been there with so much love and support that sometimes it renders me speechless.  Perfect strangers are putting Paige on prayer chains, Andrew’s colleagues and his mom’s teacher friends have pitched in to get us restaurant gift cards, family and friends have offered to babysit so Andrew and I can get out once in a while.  So, so many gifts have been sent to Paige and Will and entire congregations of Churches have prayed on behalf of our family.  Paige has even made prayer board for the monks at the Saint Vincent Archabbey and College!

Today, Paige reached, grabbed, and explored a stuffed elephant with her mouth.  This is actually a pretty big milestone in every babies life but this also example of something we were told to expect she might “never do”.  If you look underneath all of the garbage that the situation can be sometimes you can find some roses.  When we are told to not expect anything and something happens, it’s huge.  To people on the outside it might not be a big deal, but for us it is a victory and a celebration.  Her life is worth celebrating!

Like I’ve said in previous posts, when you get a bad diagnosis, you thing of everything.  Every single outcome from the good, to the bad, to the in-between.  She might not ever be able to walk or talk but just look at what she’s done in the short 8 months she’s been on this Earth!! And the even shorter month and a half since we’ve known of her condition!  She’s brought SO many people together!  She’s definitely brought out the best in us and brought our family closer.  She’s taught us to not take any little thing for granted and she’s caused so much goodness! And to think, she was able to do this without even saying a word…

We know that she could be here for a short time.  She can also be here for a long time.  We don’t really know.  But doesn’t that goes for everybody?  I think about this often and don’t know what it will mean for our future, but throughout all of this, I know that we’ll be okay.  People will step up, we’ll step up, and we’ll continue to hope.  Let the celebration continue!


Vision Therapy 
ImagePaige’s “Angel Wall”.  Some of the gifts sent from family, friends, and strangers.

ImageBest Valentines we could ask for!

Celebrating Valentine’s Day with some heart pizzas!

  A little boy asked his Church congregation to sign Valentines for Will and Paige.  A touching example of how great people can really be.  We read every single one together!Image


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