Wednesday, May 07, 2014

Ryan House Speech

The words of my speech for the 2014 Ryan House Community Breakfast:


Good morning. It’s an honor to share with you our family’s Ryan House story.

My husband, Mark and I are the parents of four children. Our third child – our son Jack, was born with a rare form of muscular dystrophy. Because of his disease, Jack suffered from severe muscle weakness that caused him to need a tracheostomy and the assistance of a ventilator to help him breathe. Jack was unable to walk or talk, he was fed through a feeding tube and he was dependent on others in every aspect of his life. 

Our family has been a Ryan House family since the day it opened its doors. I first heard about Ryan House about five or six years before it opened from an article that was published in the Arizona Republic. At that time, Jack was six years old and based on my own experience as the parent of a child with complex medical needs and in knowing other parents of medically complex children, I understood firsthand the importance and tremendous need for respite.

Although he may not remember, I sent Jonathan Cottor an email after reading the Arizona Republic article and Jonathan called me and we talked on the phone about what he and Holly envisioned for Ryan House. I was so impressed with Jonathan and Holly and their vision and anxiously awaited the day that Ryan House would become a reality.

On March 27, 2010, our family was there when Ryan House opened its doors for its Open House. Two weeks later, we spent our first weekend at Ryan House. One of the things that really stood out to me that first weekend was that the staff repeatedly asked “What can we do for Jack?” and “What can we do for you?” It was unfamiliar to me to entrust my child’s care to someone else and have them actually ask ME what was important to me and my son.  Before Ryan House, the only time Jack was in the care of others outside of our home was when he was in the hospital – which is not a place where a parent’s voice is often heard.

The kindness and compassion of the Ryan House staff that weekend and every weekend thereafter was a blessing to this weary parent. Over the last three – almost four years, Jack spent many weekends at Ryan House. There were weekends when my husband and I and Jack’s younger brother, Eric would stay at the house.  Most times, though, just I would stay at Ryan House with Jack and enjoy the peacefulness of the family suite. I treasured the uninterrupted nights of sleep, while Jack was in the caring and competent hands of the Ryan House nurses. There were also weekends when we’d leave Jack at Ryan House and travel out of town with our other children.  Ryan House allowed us to spend quality time with our other kids, who often had to take a back seat to Jack’s intense medical needs.

The Ryan House staff came to know and love Jack over the years. Even though Jack couldn’t talk, he communicated with his eyes and his smile.  One of Jack’s favorite things to do was listen to music and, thanks to his dad’s influence, Jack loved to listen to the Beatles. When Jack stayed at Ryan House, the staff always had the Beatles playing on the iPad for him.  Even the music therapist, Danielle, would play Beatles songs for him on her harp. Jack loved it!

The Ryan House staff and volunteers embraced Jack and they embraced our family. Ryan House became a safe haven we could retreat to . . .  a place where we all felt loved and well cared for.

Last year, Jack’s health began to decline and, in September, we transitioned him to hospice care.

The first weekend in January of this year, we brought Jack to Ryan House with the intention of staying just a few days while we worked on getting a pain management plan in place. Unfortunately, things didn’t go as planned and, on Sunday, January 5, 2014, our sweet Jack passed away in the Sanctuary Room at Ryan House as I held him in my arms, with his dad, sisters, brother, grandfather, aunts, uncles, cousins, and friends surrounding him.

I believe with all my heart that Jack made the decision to make his final journey home that weekend while at Ryan House because he knew Ryan House was the best place for his family to be during his final days and after he left us. The care, compassion and patience that was extended to Jack, to me and to our entire family that weekend truly carried us through the most difficult and painful experience of our lives.

It seemed only right that the people who had brought so much rest and comfort to our family over the last three years, were there to comfort us as we said good-bye to our son. I will be forever grateful to Ryan House for all they did for Jack and for our family during Jack’s final days. 

After Jack died, I received a letter from one of the Ryan House volunteers, who was affectionately known as “Grandma Bev”. I’d like to share with you what she wrote:

“Jack was my first child to care for as a Ryan House volunteer.  I can’t explain it, but someway, somehow, our hearts, spirits and souls touched. His smile melted me and I was hypnotized by his beautiful eyes. I read many books to him and he would make ME so happy, when I was trying to make HIM happy.  One day, we went into the Sanctuary room and I turned on the player piano and asked him if he would dance with me. He gave me that endearing smile and we danced every dance we could! I thank God for giving you both such an amazing child to raise. I thank you both for loving and raising him so well and I thank Jack for teaching me so much about love and life.”

Families like mine need Ryan House volunteers like Grandma Bev - and all the volunteers who give of their time and their hearts to our children. Families like mine need Ryan House nurses like Melissa, April, Amanda, and Rachel, and CNAs like Kasha who possess the understanding and compassion that allows us to confidently surrender our child’s care to them.

Families like mine NEED Ryan House.

Over the last 15 years, our family has been touched by many wonderful organizations that help children with special health care needs, but no organization has supported or touched our family more than Ryan House.

So, in closing, I want to say “THANK YOU” to Jonathan and Holly Cottor for your vision, to the Ryan House staff for your care and compassion, and to all of you who make the gift of Ryan House possible because of your love, your time and your financial support. 


kathie said...

that was beautiful!

Christy said...

Geez, Ann. Where do I send my check?! That was beautiful! And I have tears from thinking about that time... I think of you and your family so much.

Love you!
Christy xoxo

Susan said...

A beautiful speech Ann!