Category Archives: friends

A moment to say WOW

I know that Boo is so incredibly lucky. Yes, she struggles. However she struggles so much less than other children. And here is why:






Boo you see has the best, ultimate best, village. Not everyone of her village is shown in this photo. The people above dedicated Sunday to walk with Boo in the NSTAR Walk for Children’s Hospital. We formed our Brigade 5 years ago to show how much our family was indebted to the Saviors who saved Boo’s life and our sanity.

Five years later, CHB continues to care for the best hugger in the world. However we do not owe Boo’s advances to just CHB. She owes her growth to the friends, family, therapists and teachers who interact with her on a daily basis.

I read so many blogs where I am saddened that they do not have a village. So many moms feel isolated, alone and afraid. Too many parents of children with special needs become loners. Their lives are centered around their child, leaving them little choice.

Maintaining a village is not easy for a lot of us. We are pretty out there with Boo and have been since her birth. I know the present is the easy period. As she gets older life may become harder. I think that is why our family is so grateful for our village. 

Boo’s teachers, aides and therapists have become extended family. Our friends have become watchful guardians when they see Boo in school or at a party. Everyone we know have invested themselves into our beloved child.  Recently I was at the Supermarket and a teenager came up and said hi to Boo. I had no idea who she was, but her friendliness touched me.

So I am taking a moment (or two) of your day to express my gratitude to Boo’s village. Those who walked 7-miles on Sunday and those who cheer her on every minute of the day. Those who read my blog and cheer us on. Those who I work and live along side. The countless people who reach out and hold our hands through this unsuspected life.

Thank you to all of you who share our heartache and joy.

From the bottom of my soul, thank you.

 

Comfort

Today’s 5-minute Friday challenge is “Comfort”. Ready, set, go….

Comfort is having a day that I break, just a bit, and a friend from half-way across the world responds.

Comfort is being so frustrated by the doctors who recommend a therapy for Boo that is not available due to her lack of a diagnosis, and a friend from 8 hours away not only responds immediately to my URGH e-mail but then spends her day finding a way to make it happen.

Comfort is knowing that I am not alone in my struggles.

Comfort is being able to see the light of Boo’s smile as she charms a gangster, who might not have been a ganster.

Comfort is seeing my Boo race to the school bus to see Allie home.

Comfort is my husband knowing I had a bad day, so he disappeared for a while.

Comfort is being afraid and having someone hold my hand.

Comfort is knowing that when it becomes too much to handle, I am allowed to wallow in the land of self-pity if only for a moment.

Comfort is having more awesome days than bad.

Comfort is having my child home with me safe and happy, never knowing that mommy is overwhelmed.

Comfort is having friends get pissed off on my behalf at the unfairness of it all.

Comfort is having those same friends see the beauty that is Boo.

Comfort comes from awareness that all parents feel overwhelmed and want to hide, preferably with alcohol and chocolate.


END.

Today, like most Fridays I really think that Lisa-Jo picks a word that is totally appropriate for my state of mind. I don’t quite know how she does it, but I am happy that her prompts help me work through whatever crap I am going through at the precise moment of time.


Five Minute Friday