Meet the McNeil Family

Meet the McNeil Family

Saturday, January 15, 2011

Isolation

One of the side effects of Sanfilippo is the feeling of isolation we sometimes have as a family.  Our kids aren't capable of doing age appropriate activities.  As other families evolve as their children age, we are perpetually in the baby and toddler stage.  We often say we feel like we are in the movie "Groundhog Day".  It is difficult to find sitters who are capable enough to care for and handle both Waverly & Oliver.  We spend a lot of time as a family watching favorite videos, reading favorite books and spending time outside.

The winters are rough.  Waverly's circulation is getting worse and it is very difficult keeping her warm.  Needless to say, we are counting down the days until spring arrives.  (And counting down the days until we head to Florida for Oliver's Make-a-Wish trip!!)

One thing the Pepsi Refresh Project has shown Matt and I is just how supported we truly are.  We are amazed daily by friends voting, sharing with the friends, commenting on the blog, and sending us messages.  We cannot believe the people who are joining forces with us.  Invested in winning this grant - and determined to play an active role in making that happen.  I keep seeing friends say "WE are in first place".  I love the use of the word "we" - it makes me feel like I am not standing alone.

8 comments:

Terry Fisher said...

Your never standing alone Shannon...

s.a. said...

I have shared the "How to Vote" page with everyone I can possibly think of.

I don't 'know' you, but have fallen in love with your amazing kids via your blog, and am definitely part of your 'we'. Go Team Sanfilippo!!!!

Anonymous said...

Like S.A. wrote above, I've shared with everyone I know on "how to vote" and linked them to your blog.

We've never met, but was led to your blog by a friend when you were still living in London. As I've watched the events of your lives unfold, I've grown to love your family. You are a very real and honest person about this journey and that takes courage.

Thank you for sharing your lives with all of us readers. There is so much love for Waverly and Oliver (and their parents too!) from so many of us readers that you'll never meet.

So glad Team Sanfilippo is in 1st place!!

Anonymous said...

I think of you and your family every day. nm

Anonymous said...

I found your blog through another friend..you are not alone even though it probably feels that way .. we pray for you daily .. my daughter and I both read about your life and talk about what you must go through all the time..you are in our prayer and we are voting every day!

Joanne Huff said...

I feel the same, Shannon. It feels so good to say "we". I know that I am going to be at a loss when this contest is over. It has brought such a sense of purpose and hope. But I also know the flip side of that is I will be SO very happy if we win! Love, Joanne

Christy Bowersox said...

As much as I possibly can, I will stand with you.

Much love.

Kristy and family said...

Shannon, have you looked into pediatric home health agencies instead of baby-sitting? You could have a nursing assistant or nurse (whatever meets your needs) care for the kiddos on an on-call basis.