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.