Life after loss

It's been a long time since my last post and so much has happened. I can't even begin to fill in the blanks. I'm still healing and I suspect I will be healing for the rest of my life. I don't know that you ever get over losing someone you grew inside your own body. One thing I know for sure is even with the incredibly unbearable pain, I would do it all over again if it meant I got to hug my sweet boy and tell him I love him just one more time. But moving forward, I now know what a "normal" life is like because I finally have one. It was hard won and I never take it for granted. Sadly, after spending the majority of my life consumed with caring for ill children, I now find it difficult to make friends. When my peers were spending their weekends going to parties and hanging out with friends, I was spending mine cleaning up baby puke and trying to figure out how to be somebody's wife. My so-called best friend wanted nothing to do with me once she found out I was pregnant my senior year in high school. Losing that friendship was so hard and I tried to pretend it wasn't but it kind of broke me. I missed having girlfriends to talk to but it would be years before I allowed anyone behind my self-imposed walls. Nearly 30 years and numerous failed friendships later, there was one person who grabbed a sledgehammer and helped me break down those walls. That person was Carrie. She wasn't afraid of speaking the truth and she was exactly what I needed. I finally found a friend who knew how to be a friend and thankfully, my screwed up dysfunctional life didn't scare her away. She loved me and my family and when I got too serious, she showed me how to say screw this! Then we went shopping. She was the best friend I ever had......until the day she died. Cut to today. I still don't allow many people into my world for fear of getting hurt and all of our friends are couple friends, meaning they are actually only friends with me because of my outgoing and very friendly hubby. I have tried to make girlfriends after losing Carrie but, so far, I don't seem to be able to find any that actually follow through with plans to get together. My life now is built around spending time with the man I love and traveling when we can. This last year we got side tracked a bit when we became caregivers again for our daughter while she got her much-needed bone marrow transplant. But she is doing well now and our life is back on track. I don't take it for granted for one single moment. I know how fragile life is and how it can all be gone in the blink of an eye. I recently had a small personal crisis when I allowed an insecure boss to make me second guess myself. I cried and sulked for a few days until I finally came to my wits and said, "screw this"! Carrie would be laughing her butt off at me. I have a few years to go before I am ready to retire but that incident helped me realize that I can't wait. There is a whole big world and a lot of beaches out there just waiting for the hubby and me to explore.

The Journey to Normal Continues

Once, a long time ago, I began a journey that started with a detour. I peed on a stick and bought a ticket to Normal but somewhere along the way there was an accident of monumental proportions and I was guided off the beaten path to an unpaved, uncharted road. I never found Normal but what I did find was much more exciting and adventurous. This new path taught me a new language, Motudis, created exclusively for Sweetpea or as my sweet hubby called him, Morudis from Potudis. We never found out where Potudis is actually located but if you give it a chance you will see that it is a very magical place with many other Potudites who live care-free and freely share their innocence and love. A place where the spoken word is over-rated and smiles speak volumes. A place where sloppy kisses and giggles are abundant. I received no guidebook so I had to find my own way around. In the beginning, I was my own worst enemy. Road blocks would stop me dead in my tracks until I finally discovered that, in Potudis, you just move the road block and forge a new path. There are no rules so you make them up as you go along. If something doesn't work, it isn't the end, it's a new beginning. Three steps forward and five steps back is a dance that is repeated so often that, set to music, looks a lot like the hustle. Drugs are encouraged and prescribed like candy and therapy means something very different than lying on a couch bearing your soul. Again, I must remind you, there are no rules in Potudis. It took awhile but I eventually stopped looking for Normal and made myself at home in Potudis. For more than 20 years, it became my world, it consumed me...until the day I was suddenly plucked from the comfort of this strange, wonderful place and dropped head-first into Normal. And just like that, I began a new journey. Four years later, I still find Normal as not so normal and long for the familiar sights and sounds of Potudis. I long for the 2 AM play dates and all night movie marathons while monitoring feeds and measuring meds. But I am nothing if not adaptable and so I am once again moving forward and following the rules. It is a process. One that is not accomplished without great sacrifice and effort. And so my journey continues........

Dreamweaver

Sometimes the nights can be long and seemingly endless. When sleep does come it will often bring sweet little pleasures such as dreaming of my precious B-man. I love when this happens. Once, I could even smell his fuzzy head. Yes, I am aware that I did not actually smell him but my senses memory did. I believe we are allowed small visits like this to make the loss a little bit more bearable. Being his mother was my most important job and I was fired all too soon. Often, when I lie awake in bed at night surrounded by the darkness, I allow myself the luxury of a good cry. My bed is my safe zone. A place where I am able to allow all of those raw emotions to roam freely for a while before reigning them in again for the daytime. I think his memory comes to me more in the night because I spent so many sleepless nights caring for his many medical needs alone in the dark. He and I had a long history of hanging out together watching infomercials or Nick At Night reruns while the nebulizer hummed in the background or feedings drip, drip, dripped. I would not take anything for those lost zzz's. Now my nights are deafeningly quiet and all I'm left with is the sound of my own heartbeat. A constant reminder that it is not normal to outlive your child. Yet, here I am. I address this in my spin-off blog and explain how this is a new beginning for my husband and I. Each night I lie down, my prayers are for a small glimpse of what my life used to be. It really is true, you never know what you have until it's gone.....

Spring awakening

Spring arrived overnight. I see bluebonnets everywhere and cannot wait until I have some spare time to grab my camera and capture them through my lens. I think I may take my pups out to play in them as well.

We have been on 2 cruises in the last 2 months. You would think we were vacationed out but, no. We have several camping rips already scheduled and have booked another Smooth Jazz cruise for 2013. Thankfully, we both love to travel. It is an amazing escape from reality.

I changed jobs between cruise number one and cruise number two. It was a simple twist of fate that my manager came to me with an opportunity to change to another clinic in our same building. Having been very unhappy with my job for quite some time, I jumped at the chance. Turns out, it was a really good move. I have so much more autonomy with this clinic not to mention education opportunities. Plus, one of the clinics I travel to is 7 minutes from home. I am much happier now and have even gotten comments from friends that I seem happier. I don't think I realized just how unhappy I really was.

Next weekend I am accompanying my physician to an investigator meeting for a research project. It is an all expenses paid trip. I'm excited to be a part of it. I now feel appreciated and like what I do matters.

There are still many personal life woes going on with Sissy, but without the added stress of my job, I can now focus more clearly on what needs to be done.

I am ready for summer and spending time with our sweet Moo girl. It is hard to believe she will be 5 in a couple of months. Time has flown by so quickly. It feels like yesterday I was holding this precious little newborn and now she can actually reason with me on and intelligent level.

Today, life is good and I learned many years ago to grab all the good you can get for tomorrow it may be gone.

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.

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~

Finally On The Mend

B-man has a diagnosis! He had been experiencing severe feeding problems and appeared depressed for months now. I have suspected that he was depressed due to aging out of school but without verbal skills, he is unable to express his feelings. A few weeks ago I made an appointment with this gastrointerologist and had some tests done. They came back positive for H. Pylori, the bacteria that is most responsible for intestinal ulcers. Poor guy, the doctor suspects that he has been in pain, thus the shutting down of emotions to deal. The treatment is nearly as bad as the condition. A combination of four different medications given four times a day for ten days. That is a lot of drugs on top of his already impressive array of medications.

Things went smoothly until the last four days of treatment when the antibiotic effects finally appeared. We were knee deep in poop for nearly a week! I don't mean to be graphic but he was also on Pepto Bismol and if you have ever taken it, you know the effect it has on stool color. This stuff was like cleaning up and OPEC misshap! Life with B-man is messy. We deal with it and laugh later. Okay, there have been several occasions when we dissolved into laughter while in the midst of cleanup but that was only to keep from crying. Once, when B-man had been in the hospital and on IV antibiotics for several days, poor Buddy happened to be on the receiving end of an explosion of epic proportion. When the eruption finally stopped there was poop on the wall, the ceiling, the floor, the chair nearby and when Buddy looked up at me...there, on his forehead, was a huge glop of poop! Yes, that was a hysterical moment that will never be forgotten.

I am happy to report that since completing his treatment, B-man is now voluntarily eating and finishes about 75% of all of his meals. He is also tolerating the supplemental formula better and has actually gained a couple of pounds. But the best thing is that he got his happiness back. He is, once again, the happy and smiling little man that I love so much. It is so good to see that precious smile! I have missed it. Yes, as those of you who know me can guess, I have beaten myself up over the fact that he was sick so long and I didn't figure out what was wrong. But I have decided that I can't know everything. (Although I feel like I should!)

Life in our household has, once again, been restored to a temporary state of wellness. For now, Life is good!

~Ginger~

Randomness Run Amok

Today is teeth cleaning day for B-man. He abhorrs having anyone even touch his mouth let alone brush or clean his teeth. I am sure it stems from all of the surgeries he had to repair his cleft lip and palate as an infant. They were painful surgeries with long recovery times followed by twice a day massages to the area to reduce scarring. Which, I must admit, worked. Many people cannot tell he ever had a cleft lip and it was a bad one at that. Of course, having a world renowned craniofacial surgeon helped, I am certain.I have to help hold him down during these cleanings and I hate being the bad guy where he is concerned. I work so hard to have fun with him but it always seems to come back to me being the one that has to do or help with all of the painful or uncomfortable treatments. Maybe that is why he seems happier when his dad is doing his care. Dad can be his safe person, the one that isn't holding him down or doing dressing changes or g-button changes or brushing his teeth each morning. That would be me, the mom.

In all honesty though, I prefer to be the one that does all of these things because, being a nurse, I tend to be the most thorough. The one that never questions, "Can't we skip it just for today?" No, we can't because if we do then we will begin skipping it more often and you know what that means. You eventually stop doing it altogether. No, I never ask that question, I just do it.

Now as I have said before, my hubby is an incredible man. He loves his family and is fiercely protective of them. So I don't want to make him seem like a slacker. Quite the opposite is true actually. He is a hard worker and gives 110% in everything he does. No, it isn't that he doesn't want to do the treatment, it is just that he hates to see his little boy suffer in any manner.

Living with B-man is a challenge in every sense of the word but it is also one of the biggest blessings I have ever been priviledged to receive. Buddy and I are coming up on yet another wedding anniversary and although it is doubtful that we will be able to properly celebrate it as a couple, I do not feel bad. We made a conscious decision when B-man was born to keep him with us as long as he is alive. We were once told to find a good institution and place him there before we became too attached...seriously? Too late, I be came attached the moment I found out I was pregnant! During the precarious two years that followed, spending hours upon hours alone with him in the hospital, only served to further strengthen that bond. So when the suggestion was made to "place him somewhere", I quickly shot back, "He is already placed in the only home he will ever know, ours". No, my hubby and I whole heartedly accept that we are no longer a couple but a trio. Mom, Dad and B-man. To borrow a phrase from a friend of my mother's, "The Three Musketurds"! HA!

Currently in the planning stages is a huge trip to celebrate next year's momentous anniversary. Knowing that we are unable to make that trip alone we have decided to include my mother. Yes, maybe there are a few ulterior motives at work here. Although, she cannot lift or perform B-man's care, she does retire earlier than myself or my husband so maybe, just maybe, we could sneak a couple of nights in at the disco or even a late night romantic dinner on our balcony. Okay, there is alot of ulterior motive but hey, we have to be creative!

Until next time,
~Ginger~

Learning To Delegate

That is a term we often use in nursing, to delegate, but I seldom use it in my home life. I prefer to do things myself. That way, I know they are done correctly. Cocky? Probably, but true. Recently, with the wrist injury I suddenly experienced, I have had to use the term at home now as well.

Admittedly, my wonderful hubby, who can care for B-man with as much expertise as myself, usually must face my judgemental glares and disapproving sharp tongued quip of, "That's not how I do it". This time however, I am holding back on the criticism and allowing him to do it his way. Beggers can't be choosers, right? So what if B-man still has some straggly little beard hairs left on his chin because dad isn't as meticulous about shaving as I am. I try to ignore them. The diaper cream tube is squished in the middle? Still not a peep from me. B-man's fingernails have gone without a good cleaning and trim for several weeks now but because I cannot physically do it with my wrist, I keep mum. I began noticing little ants scurrying around near the medication bottles the other day and on closer inspection, I realized that the bottles had not been wiped down. Those little ants were probably on a drug crazed sugar high as a result. Okay, yes, that really bugged me (pardon the pun) but I am still keeping quiet. Buddy is a sweetheart of a man and an incredible father and grandfather. The fact that he helps out is wonderful and I am blessed to have his help.

No, delegating is not always easy. I hired a maid the other day. I had one when we lived in our hometown and she was magnificent. But since we have lived in our current city, I have chosen to not hire one. Quite frankly, I was afraid that she would not clean my house to my expectations and I would have to not only pay her but then re-clean it myself. I did a little investigating prior to the hiring and I think it was well worth the time. I have two different neighbors with maids. I asked them about their respective maid and then watched their driveways to see when they were getting their home cleaned. I then made a little impromtu visit to each of their homes shortly after the cleaning occurred. I looked closely at each of the home to decide which maid did the better job. One of them was by far the cleaner home so, that was the maid I chose. I am happy to say that she did not disappoint. I do feel a bit lazy as I lounge on the couch reading while she whizzes about dusting this and cleaning that. However, I keep reminding myself that I am doing it to give my wrist time to heal. At this rate is may never heal! Hmm, maybe delegating isn't such a bad thing after all!
~Ginger~

Emotional storms

It has been a rough few weeks for our family. B-man's weight continues to drop as he refuses to eat and even the g-button feeds are not helping. His skin has become paper thin an even the smallest scratch becomes a big infection. On top of all of this, I somehow managed to hurt my wrist so now I am in a brace that does not allow for me to do many of of daily chores. I am abl eto do B-man's care but with great difficulty and probably at a detriment to the healing process of my wrist. It it painful, yet I am chosing to not take any pain medications that would possibly interfere with B-man's safety of me caring for him while "under the influence" of a narcotic analgesic.

I am in a constant state of worry about him. We have always understood that his time on earth would be shortened. However, after 24 years with him, I am not ready to let go. So, I continue to fight for him, even when I can clearly see that he himself is no longer fighting, nor is his body in a position to allow him to fight. I am still not over greiving the loss of my best friend yet, I DO NOT want to lose my baby as well. I don't feel like I could survive it emotionally. I am teetering at best right now. Never in my life have I had such feelings of despair as now. I have always been able to withstand anything that life threw at me and smile anyway. Not right now.

I am aware that grief can cause these huge emotional storms as well as the fluctuating perimenopausal hormone levels. I am in hopes that soon, I can work my way through these evil joy stealers and find my happiness for good once again. I do not like feeling like this. It makes me feel weak. I continue to pray but I think God is on vacation with no cell service at the moment. So, for now, I just keep leaving messages that my power is out. Hopefully, He will return soon.
~Ginger~

Moody Blues

Normally, I am a glass half full kinda girl. I accept life at face value and try to use humor as much as possible. However, lately I have been grumpy, irritable and just downright moody. I cry for no apparent reason and snap at my poor sweet unsuspecting hubby. What is going on? I feel like I am Dr Jekyl and Mr Hyde! I highly suspect a combination of hormones and lingering grief are to blame. I have been offered a supplement for the hormone issue but do not choose to go that route. I don't like drugs. I have a small pharmacy as it is what with all of B-man's meds so I really do not favor adding anything else to the lot. As for the grief, well,I guess only time can heal a hurting heart.

I miss my friend very much. There aren't any other girlfriends that I talk to on a regular basis. When we moved, I left them all behind and now that I am basically a stay at home mom, I really have no way to make other friends. I have attempted to start up a group of other mom's with adult children that have special needs but so far, I am the only one that seems to have any real interest in it. Both times I have set up nights out, most everyone backs out. The first one, only one person came and this last one, only two people showed up. I guess two is better than none though. Really, I am just lonely. I will get over it eventually...I hope. I have never felt this alone before. My friend was always there to hang out with, go shopping or just grab lunch. Now, it is just B-man and me going out to eat or shopping. I miss the girl talk, heck I just miss any talk. With B-man being non-verbal, I do all the talking. I have to admit though, he is the best secret keeper EVER!

The other problem is one of judgement. My friend's hubby is beginning to date again. It has only been barely 3 months, shouldn't he still be grieving as well? He takes his new "friend" to very nice restaurants, much nicer than anywhere he ever took his wife. That makes me hurt for my friend. I feel like she is being betrayed. I know, it isn't any of my business but I am still grieving her loss so badly and I cannot even imagine if it had been my spouse that at only 3 months out, I would be anywhere near ready to date again. It just gets to me, that's all. My hubby said even he is bothered by it all but they are friends and so he keeps quiet. I fear that he will soon invite her to one of our little get togethers. What will I do? How will I act? What will I say? Hopefully, I will have the answers to these questions before I actually need them!

As for my mood, I want to feel better. It seems that along with the bad mood comes aches and pains that I have never had before. I am ready for these to go away as well. I am sure that stress plays a major role somewhere in all of this because B-man has been having feeding problems and Sissy has been in the hospital.(Thankfully, she was released last night and is now feeling better.) My kids really do keep me on my toes. I am always saying that I simply do not have time to be ill myself because I am so busy caring for them. Speaking of which, I'd better go to bed...the feedings begin at 0500!

~Ginger~

The Trip Of A Lifetime

If you are the parent of a child with special needs then you most likely have heard the poem "Welcome to Holland". It uses the analogy of being on a flight to a particular destination then, upon arrival, finding out you landed in a foreign country where you know no one and don't speak the language. Well, being the parent of a child with special needs is exactly like that.

Twenty four years ago, I was traveling along in life, enjoying the ride, thinking it was quite a lovely trip. Then one day without warning, my itenerary changed without prior notification. My destination was no longer where I wanted to go. "I didn't sign up for this", I protested. I felt like my complaints fell on deaf ears. "HELLO? Are you hearing me? This is NOT where I am supposed to be!" Still nothing. Then, I asked the million dollar question..."Why?"

Most of the time I love Holland. My favorite thing is the smiles. They are big, warm and unconditional. But I don't always like Holland. I especially dislike the pain and illness. Often there is a lot of those two things here. However, now that I am here, I never want to leave. Oh, I still dream of that other destination I had in mind so many years ago but leaving Holland would mean that I would have to do so without my sweet little B-man. Holland is his home, he knows nothing else...yet. I realize that one day we both must leave Holland and go our separate ways. It is not something I like to think about but I know it is there. We have been in Holland far longer than anyone predicted and for that, I am ever grateful.

My question has never been answered. I have learned to be amused by sudden changes in plans instead of annoyed. I have met people that I would have never gotten the chance to meet. I have been directed in a career path that I would have never pursued without this experience. But most of all I have learned to stop asking "Why" and instead to say "Thank You".

Yes, it was a shock to wake up in such a foreign country but it has become a most incredible journey filled with more love that I ever thought possible.

~Ginger