Livy's Hope Blog
We are especially lucky this week to be overlapping our intensive with one of Livy's best friends, Georgie Houvardes. These two have known each other for over 5 years. They have both been through so much in their short lives and both are miracle stories. We were so lucky to have met this wonderful family and shared these journeys together.
Livy and Georgie are both standing in the spider cages. To think that years ago we could never imagine them being able to do this seemingly simple task of standing.
Livy's arm strength has really improved especially on the right side. After her hemispherectomy, we had no idea if she even felt that right side or if she had any control of it at all. This therapy is answering those questions for us.
We are going to be posting some video tonight of Livy doing her dead lifts and some really amazing video of her "jumping" in the spider...getting to feel her feet stomp down for the first time in her life!
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Yesterday afternoon, Allison received an email with the picture seen here. The girls in the photo live down the street from us. The one to the right is Hailey’s classmate. Many of Hailey’s friends have met Olivia since we took her into Hailey’s school and discussed disabilities with them. We shared many topics including how Olivia is fed through a MIC-KEY button in her belly, the toys and equipment she uses during therapy and how Hailey helps her sister in many different ways. Needless to say, kids are just drawn to Olivia and every time Hailey has her friends over for a party or visits their homes, they always want to see and talk to Olivia.
When we looked at this picture, we were incredibly humbled, overcome with appreciation and joy. Hailey’s classmate Megan decided on her own, to sell lemonade in order to raise money for Olivia’s therapy. She called it, Lemonade for Livy. To see a child that young who is so understanding of a situation and cares enough about others to do something so wonderful is truly inspiring. We sometimes hear stories of how children act so selflessly and it is an honor to have witnessed it first hand. Gene Wilder in Willie Wonka said it perfectly, “So shines a good deed in a weary world.”...
Every morning when I go in to say good morning to my daughter Olivia, she greets me with the most beautiful smile. She can’t say good morning or hi daddy so I believe it is her way of saying I love you. That simple, glorious smile warms my soul and softens my heart. I don’t drink coffee which is a running joke in our family because I don’t really have a good reason not to. But Olivia’s smile acts like my morning caffeine. It wakes me up and gets me ready for the day.
Imagine if everyone smiled like Olivia…so innocent, so trusting, so pure. Whenever Olivia has been in the hospital, we always knew she would be okay when she started smiling again. Even after her major surgeries, it was her amazing smile that brought her back to us.
I think we all have good reasons to smile. But we are so concerned about the every day monotony we face that we forget how truly great life is. A smile says to others, I am bigger and stronger than my worries, I want to welcome you into my life even if for just a passing moment.
Seema Chowdhury describes the essence of a smile perfectly in her poem A Smile Is A Sign Of…
A smile is a sign of love
A smile is a sign of care
A smile tells how much to others
You are important and also dear
A smile is a sign of cheer
A smile is a sign of trust
A smile shows how you can
Be happy even in hard crust
A smile is a sign of joy
A smile is a sign of hope
A smile teaches you how you can
Remove the clouds of mope
For nothing but only a smile
Takes away your pain and trial
And pick your trouble's pile
And let you smile, smile and smile.
If we all smiled just a little more, imagine how friendly the world would be:)
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Her daily routine is generally as follows:
Heat and Massage on the table
Arm and Leg weight work on the table
Sit Ups and Back Lifts in the suit
Standing in the Spider
Dead Lifts with suit
On all fours over ball or in the spider (she HATES this - really the only time we really hear her complain)
I can't stress enough how important and positive this therapy is for our kids. Jon has been commenting lately how hard it is becoming to change and dress Livy. She used to just let her legs flop to the sides but now she is wiggling everywhere...becoming quite the mover and groover (as Hailey would say).
She is also sleeping much better through the night. Jon and I used to get up 1-3 times each night to adjust or change her but now she is sleeping longer. This makes for more rested, happier parents!
We are in the beginning process of organizing Livy's first fundraiser! It is very exciting and we are hoping for a great event. I will keep you all in the loop as to how things are going. But for now...it's back to work.
Since today was a holiday, I was able to take Olivia to her three hour intensive therapy session. My mom tagged along and it was great to have her there. It was her first time seeing Livy at one of these sessions. It’s hard to understand what these kids go through during this type of therapy until you see it for yourself. Imagine if you went to a gym for a three hour stretch and were allowed one water break for about five minutes. I am guessing no one would willingly do that since it sounds like complete torture. But the kids I see go through it for three hours a day, three weeks straight. Luckily, they get weekends off. Some cry, some yell out in pain and frustration, some fall asleep and are awakened only by a therapist putting on a new piece of equipment for the next exercise. But they keep going and fighting some just trying to sit up, some trying to walk, some trying to reach out for an object. Every one of these kids has amazing heart and a strength that comes from a place that I have only heard of and never visited. These kids fight with their condition every day in hopes that with hard work, they can overcome their disabilities. But these are some of the happiest kids you will ever see. They don’t know what it means to need the newest video game or a new outfit. They just want to be loved and accepted.
As I sit here, watching my daughter trying to complete the most basic of movements, I am reminded of how far she has come. Every child in a wheelchair or using a walker or with leg braces has a story; a story that was most likely years in the making and was fraught with heartache but also filled with tremendous victories. Each story often defines a family, closes many doors while opening even larger ones. Some families falter under the immense pressure of broken dreams. But others walk the rocky road, are able to rise above and make a real and lasting impact. I choose to make a difference, to be accepting of others, to not judge those I may not understand and to always be there for my family. What do you choose?...