Buddy and I just returned from, what I think was, the best vacation we have ever taken. We didn't go anywhere new or do anything we hadn't already done before but this time we were finally able to relax. That is a very new concept for the both of us. In the past, we have always had worries to think about on our trips. If B-man did not go on the trip with us, we were worried about him. How is he doing? Is he eating enough? Does our family know what to do if he becomes ill or has a seizure? These were always nagging questions in the back of our minds. If B-man was on the vacation with us, we still had worries. What happens if he gets sick in this third world country? Are there stairs we have to tackle on this excursion? Can they get his wheelchair safely on the tender to the island? Will they be able to prepare his meals correctly? That isn't even mentioning the preparations it took just to get him ready for the vacation. There were hours of planning involved. "Just in case" prescriptions to be filled, long chats with the special needs planner for our trip and two full suitcases of just the necessities such as diapers, pads, creams, lotions, medications and special formulas. Then there was the required equipment; CPT vest, wheelchair, folding adult stroller, nebulizer and bath chair. It was quite an arduoous process for one week of "relaxation". Ha! That was the goal that somehow was never quite achieved.
Shortly after B-man left us, a well meaning friend suggested that Buddy and I go away for a week or so to reconnect. I couldn't even think that far in advance at the time and quickly shot back a resounding "Not yet!" at him. He said, "Well, think about it, I think it would be good for you both". Turns out, he was right. It was very good for us. I'm not sure I have ever been that relaxed in the past 24 years. I knew that vacations were supposed to be a time of rejuvenation and I never understood why so many people kept saying how relaxing their vacations had been when all I felt was stressed out on mine. I kept thinking, "What am I doing wrong that I can't seem to relax?" Turns out, I wasn't doing anything wrong, I was doing everything right but circumstances kept me from ever being able to fully let go and relax. However, having said that, I wouldn't take for any of the trips we took with our little B-man. He loved every one of them. He was able to experience far more than ever thought possible in his life and seeing him enjoy himself was worth every moment I had spent agonizing over the details and logistics.
Our trip began with tears...mine. We talked about B-man on the drive to the ships port and I shed many a tear during that three hours. I was missing my little man and wishing he were with us. We had planned earlier in the summer to take a late summer early fall cruise with him. I wanted to take him to Jamaica, our most favorite island of all time. I wanted him to see the stingrays in Grand Cayman and to ride the fast speed boat Twister to Passion Island. I had all of these things planned to share with him. It was a loss all over again. By the time we reached the port I had managed to dry my tears and willed myself to smile and have fun. We were even laughing about the expression on B-man's face when a monkey in Honduras took a big bite out of the arm rest on his wheelchair. It was hysterical. That same monkey soon found the many keychains dangling from B-man's backpack quite intriquing and later made off with the hand sanitizer that had been attached to the backpack as well.
Having taken advantage of an offer to upgrade to a suite, we were given VIP boarding privilage which allowed us to be among the first to board. Our suite was huge by ship standards and we were shocked at the amount of space we had. No more fighting over clothes racks or sink space. We each had our own closet and sink as well as a jetted tub and shower. We also had a king sized bed, separate sitting area, and a balcony that was twice the size of the one we had in the past. There was even a mirrored bar with a mini fridge and a sit down vanity with lighted mirror. We were impressed and felt a bit spoiled. It was wonderful and we both agreed, this is the way to cruise!
We had pre-booked our excursions so we didn't have to scramble to get the best ones before they sold out. Our excursions did not dissappoint and we laughed, drank, danced, snorkeled and partied on a catamaran in Jamaica. We held and even kissed stingrays in Grand Cayman and tore out across the ocean in a speed boat doing 360 degree turns at 45mph in Cozumel, getting sprayed by the ocean and drenched with each turn and all the while laughing like crazy. Spending time on the beach for me meant having a cold margarita in one hand and my camera in the other while snapping shots of palm trees gently blowing in the breeze against a backdrop of turquoise water. For Buddy it meant a margarita in one hand and a Cuban cigar in the other sitting back under a palapa and just chilling. It was a great feeling. Soon we both acknowledged that it was okay to feel happy again, even necessasary. I think we had to do that in order to make sure what we were feeling was valid. We knew that the trip was going to be good for us when we were both able to let go of so much pent up pain so early on. It was quite a breakthrough in our recovery. So this is what it is to relax? I never wanted to leave.
We made plans for another cruise before we left and even pre-booked to take advantage of the extra onboard credits we would receive. Now we are looking forward to the next time we can truly relax. Maybe we will forgo the excursions in favor of more beach time. Arriving home to reality doesn't seem so bad when you already have plans for more fun. I could get used to this thing called relaxation.
Monday, August 30, 2010
Sunday, August 15, 2010
We Knew This Day Would Come
Twenty four years ago, when B-man was born, we knew the day would come when we would have to say goodbye. Friday, July 9, 2010 was that day. Our precious little Bryan, aka. Rudy, Sweetpea, Mini-man, B-man, Morudis from Potudis and Stinkerbell, left his disabled little body behind and ran happily into the waiting arms of God. It was a shock to Buddy and I.
B-man had awoken seemingly fine that morning and eaten most of his breakfast. We were headed out to lunch then a movie because Buddy had taken the day off. At lunch he began to get sick to his stomach. He started sweating and gagging. We hurried to finished our own meals and decided to nix the movie and return home so B-man could lay down and hopefully feel better. I was attempting to give him some pepto bismol in his G-button when I felt of his tummy. It was not only distended but rock hard as well. Not a good sign. We immediately loaded him back in the van and rushed him to the children's hospital, where all of his specialists are on staff.
By the time we got there, his lips were a dusky blue and he was having difficulty breathing. They were very proficient at getting him hooked up to monitors and oxygen. The resident Dr. was already pulling up his history and asking all the right questions. Whenit became apparent that he was not improving, we were asked about code status. I immediately said, "He is a full code!". Less than a minute of saying that, he stopped breathing. He was bagged and then intubated and connected to a ventilator. During this process his heart rate remained high and I never left his side although more than one attempt was made to lure me from the room. I refused to stop holding his hand. I knew I needed to call family and let them know what was happening so I brought Buddy in to take my place holding his hand. I was stern in my warning, "Don't let go!".
I was out of the room only long enought to call my Mom and tell her that he was on a vent when I heard a nurse say his heart rate is dropping. I hung up and entered the room only to see them doing chest compressions on my little Sweetpea. Suddenly, time seemed to stand still. I envisioned broken ribs, devastating brain damage and a B-man unable to enjoy life like he once had done. I felt strength come from a presence far superior to me. I knew immediately what had to be done.
I walked into the room and told them to stop. It wasn't a request, it was an order. I had no clue how I was doing this but I knew that it was the right thing to do. I looked at my unbelievably strong husband and saw tears streaming down his face as he silently nodded "yes" to me. I explained to them that I loved him too much to let him hurt any longer. The resident in charge said, "You're doing the right thing". I already knew that but it didn't make it any easier.
We were told to take as long as we needed. The social worker and chaplain came and got all of the required information for the funeral home. We spent the next three hours holding and loving our precious little man. It was the most difficult thing we have ever had to do. Telling our daughter and parents was the second hardest. Brandi was devastated. So were we.
We had his little body taken back to our hometown and held a life celebration. Somehow, Buddy managed to put together four photo dvds with music and I wrote most of his eulogy. It was read by the pastor from the church we attended when we had lived there. He even had everyone give a standing ovation and applause as a tribute for our amazing young man. It was truly wonderful.
It's been 5 weeks and the hurt continues. B-man is pain free now and that is the most important thing. We both know that we will see him again in heaven and that knowledge is all that is holding me together. We are attempting to find a balance in our lives...B-man was always that piece before. It is difficult starting over as a couple. We have never known that. We are beginning a new chapter in our lives. I remember when B-man was born, we used to ask each other, "When is life going to get back to normal?". One day we realized that this was our new normal. The same applies here...this is our new normal. Although it doesn't feel that way now, it will eventually.
God lent us our precious little B-man for 24 1/2 years longer than the doctors ever predicted. God is truly amazing!
~Ginger~
B-man had awoken seemingly fine that morning and eaten most of his breakfast. We were headed out to lunch then a movie because Buddy had taken the day off. At lunch he began to get sick to his stomach. He started sweating and gagging. We hurried to finished our own meals and decided to nix the movie and return home so B-man could lay down and hopefully feel better. I was attempting to give him some pepto bismol in his G-button when I felt of his tummy. It was not only distended but rock hard as well. Not a good sign. We immediately loaded him back in the van and rushed him to the children's hospital, where all of his specialists are on staff.
By the time we got there, his lips were a dusky blue and he was having difficulty breathing. They were very proficient at getting him hooked up to monitors and oxygen. The resident Dr. was already pulling up his history and asking all the right questions. Whenit became apparent that he was not improving, we were asked about code status. I immediately said, "He is a full code!". Less than a minute of saying that, he stopped breathing. He was bagged and then intubated and connected to a ventilator. During this process his heart rate remained high and I never left his side although more than one attempt was made to lure me from the room. I refused to stop holding his hand. I knew I needed to call family and let them know what was happening so I brought Buddy in to take my place holding his hand. I was stern in my warning, "Don't let go!".
I was out of the room only long enought to call my Mom and tell her that he was on a vent when I heard a nurse say his heart rate is dropping. I hung up and entered the room only to see them doing chest compressions on my little Sweetpea. Suddenly, time seemed to stand still. I envisioned broken ribs, devastating brain damage and a B-man unable to enjoy life like he once had done. I felt strength come from a presence far superior to me. I knew immediately what had to be done.
I walked into the room and told them to stop. It wasn't a request, it was an order. I had no clue how I was doing this but I knew that it was the right thing to do. I looked at my unbelievably strong husband and saw tears streaming down his face as he silently nodded "yes" to me. I explained to them that I loved him too much to let him hurt any longer. The resident in charge said, "You're doing the right thing". I already knew that but it didn't make it any easier.
We were told to take as long as we needed. The social worker and chaplain came and got all of the required information for the funeral home. We spent the next three hours holding and loving our precious little man. It was the most difficult thing we have ever had to do. Telling our daughter and parents was the second hardest. Brandi was devastated. So were we.
We had his little body taken back to our hometown and held a life celebration. Somehow, Buddy managed to put together four photo dvds with music and I wrote most of his eulogy. It was read by the pastor from the church we attended when we had lived there. He even had everyone give a standing ovation and applause as a tribute for our amazing young man. It was truly wonderful.
It's been 5 weeks and the hurt continues. B-man is pain free now and that is the most important thing. We both know that we will see him again in heaven and that knowledge is all that is holding me together. We are attempting to find a balance in our lives...B-man was always that piece before. It is difficult starting over as a couple. We have never known that. We are beginning a new chapter in our lives. I remember when B-man was born, we used to ask each other, "When is life going to get back to normal?". One day we realized that this was our new normal. The same applies here...this is our new normal. Although it doesn't feel that way now, it will eventually.
God lent us our precious little B-man for 24 1/2 years longer than the doctors ever predicted. God is truly amazing!
~Ginger~
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