The Time of Their Life

Let me start this blog my giving recognition to Barbara Mostella and  Jane Love for the outstanding work that they do with Camp Wired Together. This is one of the 19 illness related camps that we donate our camping facility to.

Recently I had the privilege to sit down with a family attending Camp Wired Together, a camp for families who have a child with a heart defibrillator.

As I commonly do, I ask the family what being able to attend camp meant to them.

Here is their story:

When our son was 11 years old, he was in the yard playing basketball like he does so many afternoons. I happend to glance out and saw that he was on the ground. My husband and I ran to him thinking that he had somehow fallen, hit his head and knocked himself unconscious. We realized he wasn’t breathing so we started CPR and continued until help arrived. Even after he was in the ER the doctors thought he had a concussion and were still looking for a head injury.

Many tests and what seemed like hours later, he was finally diagnosed, “cardiac arrest.”

Really? My son, a seemingly healthy 11 year old?  This can’t be possible.

More test revealed he had a heart defect and would need a defibrillator. After the defibrillator was implanted we thought things would be better and he could return to a normal life but he began to withdraw more and more, rarely leaving the house and seldom coming out of his room. Here was an otherwise healthy young man who, with a full life ahead of him, was afraid to live. He didn’t know what to expect. As parents we are suppose to be able to answer those question and address his fears but honestly we too were fearful of the unknown.

Then we were invited to attend out first Wired Together Camp at Children’s Harbor. What a breath of fresh air. Here at camp we were able to talk with families who had been or were going through the same thing we were. Our son saw other young people out playing, having a good time. Living! Doing the things that young people do!

We absorbed so much information that weekend, information from speakers and other families. We finally had a sense of peace. You can talk to a doctor until you are blue in the face. He/She can give you all the medial information known to man, but only those living the life can truly understand you and give you the answers you seek.

We left there with a whole new outlook on life and now 6 years/camps later we mentor other families that are traveling down the road we have already traveled. Children’s Harbor is such an amazing place, not only with the peace and tranquility it provides but also with the wealth of information camps such as this provide for families like as ours. Thank you for making this possible.

Later that afternoon, I watched their son with his posse of other young people as they explored the campus and had “the time of their life!”

"I Got It"

Recently I had the opportunity to spend a few minutes with Miss Barbara who has been lifeguarding for our camps for many years. We see each other almost daily during camp season but usually only have time for little more than a casual, “Hi, how are you today?” or “Good morning, good to see you.”

On this particular day we both had the chance to spend a little time together. I asked her how camp had been going and then I went a little deeper and ask her what it meant to be surrounded by so many special and unique children.

She spoke with great passion about how much she loved the children and what an honor it was to be able to be a part of their lives. She shared with me about one of the campers of the current camp and how hard he had worked to get to advance from a red to a yellow swim band. She had taken the time to call the camp director so that the boy could be recognized for his accomplishment among his peers and counselors. Praise; something so small that makes all of us feel so big!

Over the years she has witnessed the struggles that so many of the campers experience and she has an eye for what drives them to carry on. Moments that takes your breath away.

One such moment was at the pool last summer. She said that when the young camper arrived at the pool she could tell she had a prosthetic leg. The young lady walked over to the side of the pool, sat down, removed the leg and handed it off to someone.  “That was so moving but what actually took my breath away was when she reached up and removed her wig, exposing a bald head.”  She said, “I literally gasp in amazement of her courage.”

Did she look around to see who was watching? No. Did she even care? Not today. This is her special place on this earth and she could be herself. Scars, no scars, hair, no hair, it doesn’t matter. 

Miss Barbara said, “That was the day that I really, got it!” 

"Say Yes"

This week I have had the pleasure of hanging out with Camp Bridges teen camp; a camp for teenage children who have received an organ transplant. Each year is a differnt theme and the theme of this year’s camp is “Bridges TV”.  During the week they have acted out several TV game and reality shows. Sunday they did an “Extreme Makeover” of our playground. Last night the fun continued with an awesome night of “Bridges Got Talent”. 

It has been a lot of fun and games but Wednesday night was their chance to be serious. It was their candlelight ceremony, a chance for each person to light a candle and tell what they are thankful for. The list ranged from “my mother and family” and “Dr. B (Dr. Mark Benfield) for what he did for me” to “Children’s Harbor, for donating this camp for us to use.” Among the many tears there were also some giggles as the children pointed out the lighter side of some of the campers and volunteers. After a couple of hours of listening to them pour their hearts out, I realized the one blessing they all shared; “my donor.”

Every time I renew my licenses I am asked the question, “Would you like to be an organ donor?”   I always say yes just because I think it is the right thing to do, but I never really give much thought to what a difference that could make one day.  As I sat there I realized, wow, this is what it means (not that I am ready to be a donor any time soon). But if my life ended prematurely, I would have one more opportunity to make a difference in the lives of individuals such as these young people. Without the unselfish act of an organ donor most of these children would not be here. Some share a kidney from a family member but most are alive because of a donor that they never knew.

Give it some thought and if you are not already a donor, the next time you renew your license and you are asked that question,” Would you like to be an organ donor?”  Please say “yes.”

“And their Families”

Yesterday Light the Way Vent Kid’s Camp came to campus. Watching the young people in their wheelchairs with their family and support system (ventilator) in tow, you get a little idea of what challenges they face in life.  As you look past that child in the wheelchair you see other children, able bodied young people who oft times get overlooked or taken for granted. These are the siblings of a seriously ill child; even though fully capable of leading a normal life, they may never get the chance to know normal in the way you and I do.

Today, I had the chance to sit down and talk with the 14 year old sister of a 10 year old boy who has been on a ventilator since birth. I asked her what it was like living in a home with a brother whose illness demanded so much attention.  Here is what she said:

“It isn’t always easy but I feel honored. Really, I feel that God has chosen me to be the one that can make a difference, not only in my brother’s life, but also in the lives of other’s suffering from an illness.” She agreed that she had to grow up a lot quicker than most 14 year olds. She shook her head slowly and said, “Some days when I am at school, I watch the other girls and boys, so caught up in their own little world and I find myself feeling sorry for them, they really don’t get it. I love being with these children at camp. I love watching them grow up, knowing that I had a hand in it.”  I asked her if she ever felt embarrassed. She said, “When my brother had to be in the hospital for 3 months, I had to live out of a suitcase in different family members and friends homes. I was embarrassed that I had to be a burden to them.”  Then she said, “Have I ever been ashamed or embarrassed to be the sister of a brother on a ventilator, a brother who has never been able to walk or speak my name?” Without hesitation she said, “No! He’s my brother.”

I knew she wasn’t to be pitied, but admired, a strong willed young lady with the determination to help “Light the Way” for her brother and others like him.

It is a fact that we “Serve seriously ill children… but it is our mission to serve them … and their families.”

He's in My Corner

This past weekend was the first illness camp since the tornado hit campus on April 27^th; it was a family camp for children with cancer. 

As I look around at the damage that occurred from the storm in such a short amount of time and how long it is taking to put it back to normal, I realized…there are storms that hit the everyday lives of so many people. Some effects are not as visible to the outside world as the damage from the tornado. Some live within the bodies of God’s most precious creation, a child. The destruction from these storms is not as easy to bounce back from. It takes more than a team of volunteers and construction workers to “fix” it.

Saturday, as I was walking around campus I stopped to chat with a dad of a 10 year old that has been battling cancer since he was 5.  His cancer is manageable but not curable. This dad shared with me that many of the parents here had told him that when they get to a certain point in their child’s treatment, say September, they will have beaten cancer or if they make it 6 more months they will have beaten cancer.  This dad sadly said, “September… will never come for us.” With no known cure, the only hope is to add years to his young son’s life with continuous treatment.  I asked him the question I ask so many families. “What does it mean to you and your family to be able to have a place such as Children’s Harbor to come to?”  His exact words were, “we love it and look forward to it every year. This is an amazing place, and I feel God in every corner.”

So many times people express to me what a spiritual experience it is to be here on campus at Children’s Harbor.

Even the hospice nurses told me this when they would come to sit with my dad while he lived here on campus with me in his last days of life.

We all have storms in our lives. Some just seem to blow harder than others.

When we face the storms of life, I cannot think of anyone else I would rather have in my corner.

Thank you God for your many blessings as you continue to allow us to serve so many. 

"Holding the Mat"

A week ago I received a very shattering phone call. My brother called to tell me that our dad had cancer, stage 4 - lymphoma to be exact.  For the past week, we have watched him as he has struggled with the pain and uncertainly of the disease. As we struggle so do our friends.  They all want to do something but feel so helpless.

As I was getting ready to leave for the hospital, knowing I would be there for a while, one of the things I packed was the book “Holding Her Mat” the story of MK Fletcher.  MK was diagnosed with a large brain tumor when she was 14. As I was reading her story I realized as her family did, prayer and support was the best thing friends can offer at a time like this.

Like the paralytic, MK was carried to the feet of Jesus through the faith of family, friends, and her competent medical staff. But more than that, the book details the incredible faith and support the Lord brought her way through complete strangers.

I know as MK did, my friends are holding my dads mat. I see prayers being answered every day.

As I talk with families that come to both of our Children’s Harbor facilities and hear their stories, I realize they have people “Holding the Mat” for them too.

So when you have friends and loved ones going through struggles in their life, remember you are one of those “holding the mat” and they can feel it!

You can order MK’s book and read more about her incredible journey by going to her website http://holdinghermat.com/

"Making a Diffrence"

Today we will have a staff meeting, just like we do every 2nd and 4th Tuesday of the month. As I look around the table, I see witness to God’s calling in every staff member; people who put their lives on hold so many times to ensure that the families and campers here have the experience of a lifetime. To some people, a job is a job, but to others it is a calling. I have been told. “ If you love your work, you don’t have a job”. I am witness to what happens when God indeed calls you.

One particular story happened on the Adventure Course right after I came to work here. Larry and I had been asked to provide the teenage campers with some team building activities. As usual, once we finished the team building portion we allowed them a chance to step outside their comfort zone and try some of the high elements. “Challenge by choice,” as Larry, describes it.  On that particular day a young lady, whose body was weak from the treatment for her illness, so wanted to climb to the top of the catwalk like the other campers were doing. She attempted it several times but to no avail. She just didn’t have the strength.  Larry seeing how important it was to her, asks her to sit down and rest, he said,  “you will do this, I promise.”  She waited patiently, all the time watching camper after camper, celebrating and shouting with excitement as they made it to the top of the 20-foot high element. True to his word, Larry walked over to the young lady and said “Are you ready to do it?”  He then harnessed the young lady to him and he became her legs. He carefully climbed the rope ladder allowing this young lady the experience of a lifetime; I stood there and cried as I heard her shouting with excitement when she, indeed, made it to the top.