Once Upon A Time

When I was a little girl, I had a baby doll that I took everywhere. To me she was real. However, she never had a name. I don't remember why I never named her. Maybe I just couldn't think of a name that suited her. Anyway, my mom just called her the baby that I carried around too much and it stuck. To this day I still have baby that I carried around too much. She now resides in Bryan's room. Which, of course, is no longer Bryan's room, yet somehow, will always be Bryan's room. Funny how things and people get their name. I was named Ginger. Not Virginia, just Ginger. It's like my mom knew I would have red hair. My name, although often considered a nickname, suits me. I am a Ginger, right down to my spitfire attitude. Which I am currently working on after being berated for something I wrote in an earlier post. No, I will not point it out nor remove it. It is my feelings and although I have apologized to the offended party, it stays.

We are coming up on 11 months after saying goodbye to our sweet B-man and I am no closer to clearing out his room than I was in those first few days. I have done some re-arranging and storing of items which has allowed us to put a home gym and treadmill in there as well as Moo Baby's toys. You may ask how does it all fit? The answer to that is simple. He had a huge bedroom. It was designed as a mother-in-law suite and he got it all. It was perfect for him. The whole house itself was perfect for him. He was, in fact, the reason we bought such a large home. Now, with just the two of us, half of the house is seldom used. It is sad really. There used to be loud and fun-filled parties here that often ended out by the pool well after midnight. Now, we are thrilled to just have a neighbor drop by with a mishandled piece of mail. The house even has a name, "Seven Palms". So named for the seven little plam trees planted around the pool that first summer we lived here. Sadly, the last freeze took the life of six of those beautiful trees. If fact, the life feels drained from our once lively home as well. Missing are a good friend and a happy little man. Two very special people.

What will it take to breathe life back into this nearly comatose hacienda? Moo baby's laughter? For a short while maybe. I fear the draw of it has expired along with the reason for it's being. We have pondered more than once, selling it and moving to a smaller home. One that does not echo the sounds of the past like a haunting melody that awakens me from a restless sleep. But a new place would be bereft of the scuff marks left behind by a Rudy driven wheelchair run amok. It would not know the sounds of a really great belly laugh after the owner of that incredible laugh had knocked over chairs just to hear the noise. It would not have the telltale ramps and lifts that reveal the abilities of a previous occupant. No, I think I Seven Palms is exactly where we need to be....for now.

New Year, New Start

As the New Year, 2011, came into being, I allowed myself to let go of 2010, with all of it's pain and grief and embraced this year as a new beginning. That is not to say all of my grieving is over because I will miss my son until the day I am reunited with him in heaven and I continue to battle the tears at times. However, I am ready to let go of the past because it is over and there is nothing I can do to change it. Life goes on and so must I. Funny thing though, right as I sat down to write this post, I received a text from a very dear friend telling me that she had just given birth to a precious baby boy not quite 2 hours ago. I am thrilled for her and her journey with this new little life. I am also a bit envious because she is getting to start again after having already reared 2 handsome, well behaved young men. I have no doubt that this new little boy will be just as loved.

My child bearing years are over so having another baby isn't in my future. What is in my future is an incredible life with a man I have loved since I was sixteen years old. Hopefully, our own journey will continue for many more years to come. We have chosen a beautiful destination in which to celebrate our upcoming thirtieth wedding anniverary and where we will renew our vows. I am very excited. This is the wedding I have dreamed of for many years. It will take place on the beach at sunset, barefoot, with flowers in my hair. Sounds cheesy, I know, but we have been through a lot together in thirty years and we deserve this little bit of indulgence. The fact that he would want to marry me again is, to be quite honest, shocking. I can be quite a handful at times. I have a temper that only a true redhead can, I am opinionated, hard-headed and I fight for what I believe with all my might. But despite all that, my incredible hubby loves me. I am a blessed woman.

This time last year we were only planning a cruise for our anniversary because our dream beach wedding would not have been possible with a disabled child in a wheelchair. Our lives were much more compicated and so entangled in his that somewhere, along the way, we lost ourselves. We were never a normal couple by any stretch of the imagination. As I have mentioned before, just taking a trip to the supermarket was an orchestration of timing and planning. Today, our lives have, for the first time in twenty nine years, become our own, to do with as we want. It is not a welcome luxury, it is a loss that we are both struggling to embrace.

We both catch ourselves thinking how we are going to do certain things and then it hits us...we don't have to worry about that any more. For anyone reading this that has never raised a child with disabilities, you cannot understand how hard managing even the simplest of daily activities can be. How a normally fun thing like taking your child to the circus can turn into a fight with the box office just to get a seat that is accessible so your child can enjoy the show. Or how when you take your child to the zoo and HE turns into the attraction being stared at by others. But you also cannot know how much joy is received from the accomplishment of even the most simple things like when we would lay down in the floor and wind up toys for our twenty-four year old son just to see that big beautiful smile spread across his face.

So, yes, I will treat this new year as my, no, our new beginning. A chance to live life differently, more passionately, more simply and with eyes wide open.

The 12 Days Of Christmas

Christmas has always been my favorite time of year. Holiday parties, family get togethers, trimming the tree, going to look at the beautifully decorated houses, sipping hot cidar with friends and last but certainly not the least, the reason for the season: Celebrating the birth of Christ!

Then came 1985. B-man was born 12 days before Christmas and suddenly I understood, more clearly than ever, what the magic of Christmas was all about. For now that I had a son who might not live to see more Christmases, I began my journey through joy. I made memories, I marveled at his every accomplishment, I took pictures of simple daily life so that I could one day look back and say, "Bryan was here, he lived, he played, he laughed, he was loved." Now that I am facing my first Christmas without my beautiful little boy, I am finding myself drawn to those photos. I miss his silly, low belly laugh that caused me to disolve in giggles evey time I heard it. I miss his bright eyes and sweet smile. I miss cuddling with him at night before bedtime. I miss it all, even the bad times spent in the hospital wondering if he would, once again, defy medical reasoning and make a full recovery. As bad I as miss him I don't, however, wish him back. He is spending his first Christmas with the Reason Himself, Christ. That is cause for celebration.

So as B-man's 25th birthday looms ahead tomorrow, I will be happy for him and hold dear each and evey one of the 24 years I was given with him. I will remember the times he pulled my hair, the many spit wads I wore, the bedtime and morning cuddles, the smiles, the tears, the laughter, the fears, the illnesses, the bowling medals, the pride as I watched him ride Shandy for the first time, the way he grabbed my face to see his reflection in my sunglasses. I will remember the way he methodically pulled each toy out of his toybox looking for just the right one and when he found it, the way he held it to his mouth so he could feel the vibration of the music. I will remember the first time I saw him so tiny and ill and I will remember the last time I saw him, so small and still. And yet, I will be happy because he now lives with his Father and one day I will see him again.

Yes, Christmas is a time to celebrate all that is and was and ever will be...because of Christ.

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.