Our journey to The WARM Place began in the summer of 1999. Our youngest son was born March 22, 1999 with a birth defect known as Spina Bifida. Within the first 2 weeks of Matthews’s life he had already undergone 2 major surgeries. Matthew was able to come home with us just short of being in the hospital for two weeks after his birth. It was after his monthly checkups that we felt everything was going very well. His long-term prognosis was very good, then things took a turn for the worse.
On June 06, 1999, Kim & I went out for dinner, and left Matthew with my sister. She called to inform us that something appeared to be wrong with Matthew. We rushed home not knowing what was going on. Once we arrived we realized we had to call 911 as Matthew couldn’t swallow and his breathing was extremely labored. He was taken to Cook Children’s Hospital in Fort Worth. Within days of being admitted he was diagnosed with Arnold Chiari, a malformation at the stem of the brain that inhibits your spinal fluid to drain properly. It also affects the ability to breathe.
Matthew would undergo several more surgeries in attempt to help him breathe on his own. Additional shunts and a trach were also put in to help drain the hydrocephalus fluid from his brain. The doctor’s gave us the option of a major surgery called a brain decompression in which we were told he had less than a 30% change for surviving. However, they said that without the surgery he probably would not survive. He underwent the brain decompression and came through the surgery. The doctors told us it would only be a matter of days before we would see improvements. Days turned into weeks and weeks into a couple of months. During that time Matthew had numerous blue spells where he would stop breathing. In order to help him rest, he was put on a ventilator. While on the ventilator, Matthew continued to have the blue spells. As this continued we had a meeting with the neurologist, pulmonologist, spina bifida specialist, the PICU doctor, and our minister.
It was during this meeting we were informed that Matthew had suffered severe brain damage during the blue spells and that the doctors felt that he would require the assistance of a ventilator for the rest of his life. They told us that he would never know who we were due to the brain damage. It was after this prognosis and a meeting with our pastor that we decided this would not be a quality life for our son. We did not want him to be bed-ridden and connected to a machine for the rest of his life. We met with his pulmonologist and decided that we would wean him from the ventilator, at which time he would be placed on oxygen only to see how he would do. To our surprise, this only took a few days.
The pulmonologist told us that she felt Matthew would pass within a few hours of being removed from the ventilator, but he was strong and lasted longer than expected. The first few days were pretty rough; it seemed that it had begun to take its toll on the 3rd day. My wife and I decided to spend the night with him. During the day we took turns holding him. He would look at one of us with his mouth open and turn his head looking at the other, again with mouth open. We would take turns kissing him which seemed to make him happy. This lasted for some time but we realized he was becoming very tired. My wife put him to bed and we spent the rest of the evening just holding his hands. He passed away just before midnight. The next morning while we were gathering his things, the pulmonology assistant told us about The WARM Place. She said it was a grief support program for children & their families. She gave us their number and told us to contact them.
A few weeks passed when my wife called and talked to Kathy Telger a counselor at The WARM Place, who scheduled our appointment. At the intake, Kathy talked to us and our son Ryan, who was six years old at the time. She explained how The WARM Place worked and gave us a tour. She described how The WARM Place came about and expressed their desire to help children & families with the grief process. In November of 1999, we began attending the Sibling Group at The WARM Place. We found very interesting how the children as well as the adults were divided into groups according to their ages. I vividly recall our first Monday night there. I found the group I was in to be very thought-provoking. As we left I told my wife we could come back a couple more times as I thought we were handling things pretty well. Little did I know we would continue attending until June of 2002. It was at that time when we closed at the original WARM Place house off Cooper St. in Fort Worth. Families close at The WARM Place when, together with the counselors, it is determined that your family is ready to move forward. Throughout our time at The WARM Place we made many new friends, several of which we have remained in close contact with throughout the past fifteen years. During our time at The WARM Place we learned so much about our own grief and even more about each other and the way we individually grieve the loss of our son Matthew. On the night we closed my wife and I were each given a pink wooden heart that had The WARM Place written on it to symbolize our time there. Our son was given a bag of seashells that represented the smooth days and rough days that would be ahead. I remember telling my facilitators at that time that I hoped to return once my son was grown. I wanted to be able to give back to those that would walk down the same road my family had been.
Our journey to The WARM Place has come full circle. I returned to The WARM Place in the fall of 2014 and completed the volunteer facilitator training. I am now a volunteer facilitator for the adults in the Grandparent loss group. The WARM Place has always held a special place in my family’s heart and always will.
Sometimes we don’t know the reason why tragedy happens, but it is amazing to see how we can take our pain and use it to heal someone else.
My family and I would like to express our sincerest gratitude to those that chose to be a part of something so special at a time when my family and I needed them most. A special thanks to Kathy Telger, Robin Scott, Bill & Janice Starz and of course Peggy Bohme.
-Greg Gentry, former WP family and current WP volunteer
