D Day

Diagnosis day.  This day, exactly 1 year ago, our lives shattered in a way I never could have expected.  I can visualize almost every moment from October 11th, 2018.  We are used to having atypical morning shenanigans occur (ex. extremely early morning wake ups...we're talking watching Frozen at 3 AM, poop explosions, and even 6 am bath times), however, this news was not something either of us could prepare for.

So what has happened in the last 365 days?  To be honest, I didn't think there would be much change, but boy was I wrong.  It's funny, everyone lives their own lives.  We all get into our routines and follow our accumulated habits, but with Bridget we seem to be adapting to change all the time without even realizing it. 

We spent the last year devoting our time to making Bridget's life as enjoyable as possible.  There were so many high points following D Day.  She had the time of her life venturing out on her Make-A-Wish trip to Disney.  We are still in shock that she didn't have a single "episode" while we were there.  This last year has also brought with it a vastly deeper love for our daughter. I know that I can speak for both of us when I say that we were at the lowest point imaginable prior to hearing of the syndrome.  We felt guilt that we weren't doing enough.  We had provided repetition, gestures, slow and clear speech, and also used modeling to assist in helping Bridget make simple choices like what snack or drink she could choose.  We were at the end of our ropes, throwing our hands up in the air and praying for any sort of guidance in how we could move forward and help Bridget to be successful in school...and also in life.  Hearing of her diagnosis and then doing hours upon hours of research changed our perspective.  It has literally changed HOW we love her. 

Of course, with those peaks, we have also trudged through low terrain.  I had a conversation with a family friend the other day and she mentioned how Bridget seemed to be doing so well.  We all live in a 'Facebook Facade".  We pick and choose what our family, friends, and acquaintances see and hear about.  You better believe me that the Barta's won't be heading out into the public eye during an episode.  On the bright side though, accommodations are being put into place to help with the new challenges that Bridget is facing.

Hopefully in the next month or two we will be receiving Bridget's snazzy new pink helmet which she will wear while being up and mobile.  There have been more falls than we can track, and this will help to protect her head.  Along with the helmet, we just recently got to trial a stroller/chair setup to help preserve Bridget's energy.  Her feet, ankles, and knees are starting to shift inward, and her muscle tone in her legs is starting to weaken, so this will be helpful when we attempt to go out and about.  Her school is so wonderful because they already have a little stroller that she uses to get from point A to point B while there. 

Michael has also put his coaching knowledge into action at home providing different stretches to relieve the pain associated with Bridget's stiff joints.  Eating (without choking), hearing and speech have always been a major issue, and those seem to have maintained a slow decline as well (I long to hear her say "love you" on the regular, but I will settle for her bright and cheery "Hiiiii!" anytime).  Next up, will be Bridget's neurology consult at Blank.  It was supposed to be today, but the poor girl caught a stomach bug so we spent the afternoon recouping at home. 

It almost takes my breath away to realize that a year has passed.  To some, that might not mean much, but to us, a year could mean a decade passing by in Sanfilippo-time.  Bear hug your kids, let them give you giant slobbery kiss that messes up your makeup, and savor every moment with your children...even the most challenging ones.

As always, thank you for the prayers, kind messages, and support.