Giving Thanks

I have been negligent in my writing as of late. Somehow, finding the right words has been difficult for me. I usually just speak from my heart and the words seem to flow, but my heart has been congested with so many conflicting emotions lately that it has been impossible for me to decipher them into any legible description.

I receive daily emails from a grief support group which explains many of the strange emotions I have been feeling. Happiness is an emotion that I have always struggled to achieve anyway, so the absence of it would seem natural. However, I have actually had some fleeting moments of happiness which confuses me and leaves me feeling guilty. I do not want anyone to think that I am not still grieving the loss of my most precious little man but remaining in the depths of dispair is not in my nature either. Buddy and I have always used humor to alieviate the unplesantness in our world.

I am happy that B-man does not have to endure the twice daily breathing treatments and chest physiotherapy treatments or "beatments" as I called them. I hated doing them as much as, I am sure, he hated receiving them. He is no longer trapped in a body which does not allow him to communicate or move freely. He, also, no longer needs the twenty or so medications each day or the formula supplement that left him bloated and uncomfortable. Most of all, I have the assurance that I will, one day, see him again and this comforts me immeasurably.

Life is going on and I am living it. I have new job that keeps me busy and allows me to interact with children (some with special needs) and reassure and teach parents. Even with years of experience, it comes with a steep learning curve and my doctor is not a friendly person. Personality aside, he is brilliant in his field and I have much to learn from him. I am dedicated and resiliant so I fully expect to do well in this position. My family is a constant source of both support and frustration, as I suspect most families can be. However, I love each of them and cherish each moment I can spend with them. Yes, life is going on.

Where Did That Come From?

It came out of nowhere. A sudden fit of rage overtook me quickly and violently. The recipient? An electric cat litter box! I had crunched litter under my bare feet for the last time and I was going to punish the sinister machine that spewed the tiny little balls of clay all over my laundry room floor. Never mind that it is an inanimate object, incapable of feeling my wrath. It must be punished. I removed the foot-plate and slammed it against the body of this evil litter spitting machine. Nothing. Not even a groan. I slammed it again. Still nothing. I grabbed the broom and began to sweep the floor vigorusly, sending little pebbles of cat litter flying in all directions. Great, now I've just made more work for myself. Suddenly, I am crying. Oh, now I get it. This is grief. Well, the anger stage of it anyway.

I still can't figure out why I'm angry or where it came from. I don't think I am mad at God and I know I'm not mad at my precious little B-man. I think maybe that I'm just angry at the whole situation. I mean, I worked for twenty four years to get to the point that I was at in life when suddenly, it was all gone. Poof! No more B-man. Life as I knew it had just been turned upside down and shaken, letting all of it's contents fall helpessly to the ground, the most important piece was removed and then my life was just thrown aside. How could I ever fix this? It's like putting a puzzle together, only to find out that you are missing the last piece. Without it, the puzzle just isn't complete. That's my life right now, incomplete.

So how did a cat litter box come under fire? Good question. I don't have that answer. In fact, I don't have the answer to a lot of questions right now. I realize I may never have answers. But thankfully, my outburst was short-lived and the litter box forgiving. Later that day, I heard it happily scooping kitty poo just like nothing ever happened. Was that the last time my grief would show up as anger? I don't know but I cannot and will not live in fear of my emotions. If it happens, so be it. I will better understand the reasoning.

Storms Within

Grieving is a unique emotion. It has no clear cut path. It ambles around, meandering in and out of sight. Today is one of those days it has chosen to show itself. Although I have tried to contain it, it will not be contained. Even when the sun is shining, there is a darkness surrounding me that keeps me feeling trapped like a prisoner. I want to escape this gloomy existence and feel the light warm my face again. To be free is to accept the unacceptable. I have chosen the darkness over acceptance. Why is it so hard to let go?

Moo baby is grieveing in her own three year old way as well. She has chosen to take Bryan with her where ever she goes. He eats with her, plays with her, goes to potty with her and even gets into trouble with her. Sissy overheard her yelling at him and Moo baby's reason was because she was mad at him for leaving her. Yes, she is grieving like the rest of us.

I am job searching at the moment. I need a new nursing career, something that does not leave me isolated in the home with a disabled child. I need to be surrounded by people. I need friends. However, even in the midst of a crowd, I am alone. The job I seek is just out of reach. Interviews come and go but so far, I have received no offers. The friends I need are out of reach as well. I feel as if my darkness is following me. Visible to the naked eye.

How then, do I continue on in this obliterating pain? As my one confidant has instructed me, one minute at a time.

Crying, Laughing, Cruising and Healing

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.

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~

Summer Woots and Woes

Summer is here, at least in Texas. It's HOT! We planned a little getaway to Oklahoma with our baby Moo to see and feed some animals at Arbuckle Wilderness. It was great and we all had a blast. She especially enjoyed getting to ride in the front seat like a big girl while we were driving through the park. We also took her swimming and fishing. She caught her first fish (with a little help from Papa of course!). She is such an easy child to take places. She is well mannered and well behaved...most of the time.

While we were gone, we began having some issues with the lift system on our van. It has always been quirky and we have learned some tricks along the way to deal. But suddenly it decided to just stop letting the lip down once it was lowered which made getting the wheelchair on and off a physical feat. We decided to put it in the shop once we got back to my mom's house.

They couldn't fix it right away and we were told it would be a few days before the part would arrive so we decided that B-man and I would stay at Mom's and I would drive Buddy back home in her car then return the same day.
That was great until halfway home, her car began acting up. We barely made it to our house before the brakes gave out. I ended up driving Buddy's truck back and he put her car in a local repair shop.

So, I decided that if I was stuck at Mom's, I might as well make the most of it. I called up a couple of old friends and arranged meetings. It was great to see them and catch up. Mom and I even took Moo to her first live play and her first movie. Without my lift van, getting B-man and his wheelchair in and out of the truck wrecked havoc on my already injured wrist and caused some spasms in my back as well. I finally called the company and asked for a lift van rental, which they provided at no charge because the part delivery for my van had been unexplainably delayed. I was so happy to have that rental!

Moo turned three that week and Sissy had planned a huge birthday party at Chuck E. Cheese for that Saturday evening. It turned out great and Moo had a blast playing games and opening presents. However, she was afraid of the character Chuck E. Cheese so we had to make sure she stayed far away from him! Overall, it was a great visit and I am thankful for the extra time spent with my mom.

We drove the three hours home after the party and I was very glad to get back into my own bed that night. B-man was too. He has a hospital bed here which allows him to be in a more upright position while sleeping to ease his reflux. At Mom's I have tried to raise the head of his bed but it just isn't the same. Overall, it was a good trip and one that, in retrospect, was probably given to me for a reason. I am sure that one day I will look back and say a little prayer of thanks to God for allowing my van lift to break.

A Promise Kept and Memories in the Making

Summer is quickly approaching and we are filling our weekends up with fun, family and friends. It kicks off this coming weekend with a trip to Houston and the Kemah Boardwalk. None of us have been and it looks like fun. We are hoping B-man will be able to go on some of the rides. We have to be in H-town anyway to drop off our travel trailer at a consignment center to sell...long story there. I will save that one for a future blog. The next weekend is the fulfillment of a promise made to my beautiful friend, Carrie, as she was dying. She called me over to ask two favors. The first was to make sure that her oldest daughter, who is a high school senior, had a really great graduation party. That one was easy, of course I would! The second one took some careful consideration. She asked that if anything should happen to her husband, would we be the guardians for their twin 13 year old daughters? Wow, she was trusting us to care for her girls? That was quite a compliment that they would entrust us with their children. It was also a huge responsibility. We had already survived one teenage girl, could we manage to make it through two of them? After some careful consideration, we decided that, yes, we could.

Next Saturday is Jade's graduation party and we are having it here at our house since they will be playing host in their own home to out of town guests. The next day, being Sunday, we will drive to our home town to pick up little Moo baby and take her on an adventure to Oklahoma where we will stay in a cabin, go fishing and drive through a safari type park where the animals come up to your car window and eat from a bucket. We are all excited about the weeks events. I am looking forward to seeing everything through her two and a half year old eyes. She is an extremely bright and verbal child who can recall experiences with great flourish. She also pays close attention to detail so she will often recall something that I completely missed. That week will wrap up on a Thursday and we will have Friday and Saturday to spend with my mom, Buddy's dad and our daughter. We will come back home on Sunday and have five days to regroup before trekking yet again to our hometown for Moo baby's third birthday party. She is excited about this as it will be held at her favorite place, Chuck.E.Cheese.

Yes, it will be a busy couple of weeks and if your recall from one of my earlier posts that travelling with B-man is no easy feat. It requires much planning. However, it is well worth the trouble to see him light up with the recognition that he is going to see his gammie. Let's not forget the cruise that is still in the planning stages, to be taken later in the summer or early fall. (Not to be confused with the other one being planned for our thirtieth anniversary) We have cruised with B-man before and found it to be a most enjoyable vacation. Since the wheelchair accessible staterooms are significantly larger than their standard counterparts, it is also a bonus to have him with us. Yes, he is definately a bonus and not just because of the room.

I love making memories. They are an important part of the human psyche. Losing Carrie has made me more acutely aware of just how important it is to make memories with the people you love. Long after the event is over the memories will remain. This summer will be hard for me because in the past, Carrie and I would while away the days lounging by the pool, going to lunch or perusing our local TJ Maxx. I miss her dearly and on the bad days, I rely on my memories with her for comfort. I am hoping that time spent with us will build memories for Moo baby so one day when we are no longer here she will remember us. This summer is the beginning of our memories in the making.

~Ginger~