Not Sel-Fish

I participated in a special needs fishing trip this weekend out of the Ocean City Yacht Club. I didn't know what to expect since it was my first time. I thought they would cram a bunch of kids like me on a party boat, drop anchor, and hope to catch a stingray. I couldn't have been more off-base. Mom, Dad, Big Sis and I were greeted at the doc by a 35 foot Triton center console sporting 750 horses worth of motor(s). It was beautiful, and so were its owners, Don and Sue Dolaway. Don and Sue could not have been more gracious hosts. There were countless other vessels like this, hosting kids like me and their families along with countless other volunteers giving their time, at their expense,  to make some kids smile. Dad asked Sue why they do this thinking they had a grandson or friend who was special needs, only to learn that they do it because it is fun. And fun they were. Don and Sue could easily enjoy this fun all to themselves, but chose to sacrifice a beautiful day for others. Not too many people with the gifts that life has bestowed them like Don and Sue are as giving. They may donate to charity, but rarely do you see people spending time and getting their hands dirty.....quite literally in this case. Too many people who have more than they will ever need take the time to give to someone else and that is sad. Let me correct that. They are sad. When I saw how much fun Don and Sue were having with me, I felt bad for all of those people who hoard their wealth and their time, and never take the time to enjoy the company of someone who might not have been as fortunate as them, whether it be someone like me who is limited by my brain or someone who may not be as fortunate economically. So, to all of you who can easily afford it, invest in an experience of volunteering or reaching out to others. It will return nothing financially but will provide immeasurable returns to your soul.

TBT Blog Post

To get in line with the trendy TBT crowd, I dug up the following letter written by my Mom. It was posted at my 2nd birthday party which at the time was a huge celebration for me making it to my 2nd birthday party. Everyone who read it got to take a light blue wrist band similar to the infamous Lance Armstrong "Livestrong" bands. Our bands said "Hope, Courage, Faith" and Dad has worn his every day since that day....almost 9 years later. I would like to say that even though I am not famous, I definitely have fared better than Lance. So I apologize in advance for another post highlighting the trials of my family, but when you read this you will know that you can push through whatever trials you are faced with and have a mushy TBT Facebook post to look forward to in your future. Oh, and Mom, thanks for letting me be ME...

          "Hope, Courage, Faith. Words my family lives by. In June of 2003, my family was presented with some facts, cold, hard facts, that our yet to be born son, Sammy, had several rare conditions which would ultimately leave him in a vegetative state. He would not speak. He would not walk. He would not move. He would not swallow. He would not see. He would need artificial means for respiration. He would need tubes in his nose or stomach for food. There was a possibility he would be stillborn. After many tears, we made the painful decision to let Sammy be Sammy. We would not hook him up to artificial means of life support in a cold intensive care unit, we would rather hold him in our arms every single minute of his short life.

            At 6:00 p.m. on July 12, I went into labor. I put Stephen and Sarah to bed and kissed them goodnight. Two angels asleep, with no knowledge of the road that lay before me. Half way to the hospital I discovered that I did not have Sarah’s angel necklace. For some reason I believed this necklace would give me and Sammy some sort of divine protection. We turned around and I delicately slipped the necklace off of Sarah and placed it around my neck. At the hospital, I was put to sleep and Steve was forced to face the birth of our child alone.  Sammy cried when he was born. He kicked, he screamed. He peed on Steve.  He was alive.

             I held   him close in my arms every single minute we were in the hospital. In the beginning he was gasping for breath. I felt every muscle in his little body tense as he tried to inhale. There were times when he would stop breathing. I would then shake him and say, Sammy, I know you can do it, take a breath for mommy. Sometimes I had to shake him to keep him alive. I sang to him to keep myself awake. I had to win this fight. I had to keep him alive.

            As a last resort we took him to the intensive care unit at CHOP. He was there for one night. They had no hope; they sent us home with hospice. They expected him to pass away over the weekend. But he didn’t, he thrived. One week passed and we celebrated his first week’s birthday. We held him. We sang to him. We played with him. We took him to an Eagles game. We took him down the shore. We took him to camp. We never lost hope. And despite the Doctors’ assertions that he could not swallow, we gave him a bottle.

            We quickly got rid of hospice. Instead of waiting for Sammy to die, we began to look to the future. We enlisted the help of early intervention and began services at three months. We decided to maximize Sammy’s potential. He rolled over at five months, started to crawl at ten months and walked at 20 months. He now says ball, baby and bye bye.

            Despite the overwhelming odds, we never lost hope. We never lost faith. Sammy has been our inspiration. He struggled to take his first breath. He struggled to take his first step. Today he struggles to say his first words. But he never gives up. He has overcome the odds and he has shown us all that miracles really do happen.

           

            My son Stephen has shown my family the true meaning of courage. As you all know, Stephen has been diagnosed with a rare blood disorder called Evans Syndrome. What you don’t know about, is the courage Stephen has exhibited since he was first diagnosed with this disease. He has had more IV’s, transfusions, and hospital visits than I care to remember. He had chemotherapy in the outpatient unit of CHOP for four weeks in a row. We were surrounded by children with no hair and masks around their little faces to protect them from the surrounding germs.

            Stephen faced each week with a positive spirit and a level of bravery we didn’t know he possessed. He, and we, did everything we could to make life as normal as possible in what sometimes felt like a very dizzying whirlwind. To be honest, we couldn’t have done it without him. He showed us fearlessness and resolve on the baseball field. Even though his team didn’t win every game, Coach Dad went home every night feeling like a winner. Every time we left a teacher conference, where his teacher could not tell us enough what a smart and mature boy he was, we were strengthened. He has never let us down through all of this, and we are proud.

            And lastly, while speaking about proud, we cannot forget one little angel. Sarah. Sarah has been the glue that keeps us together most of the time. Her sensitivity, kindness, sense of humor and quirkiness has made life more normal for us. She is truly an angel on earth and we are blessed with her.

            As parents, we have experienced a level of accomplishment with our children that most people only feel when their children are grown. We have also learned a lot about ourselves and our loved ones who never missed a beat. We are fortunate in misfortune. We are enjoying the “lemonade” every day…

            The Hope, Courage and Faith bands have a special meaning to our family. These attributes are represented in all of our children. We hope that you take a band and find inspiration in these words and the people around you as we do."