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M. SAMANTHA WILLS FOUNDATION

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CONTRIBUTORS

EVERYONE HAS A STORY TO TELL

SHARE WITH VULNERABILITY: STACEY CARUSO

Samantha Wills

The loss of the daughter to the mother, the mother to the daughter, is the essential female tragedy

- Adrienne Rich, Of Woman Born

One year and 7 months. 574 days. An endless amount of hours, seconds and what feels like an eternity already without you. My mum. My beautiful sweet mum who I lost on that sunny yet emotionally gloomy Spring afternoon on the 15th day of September 2015. That was the day my life changed completely and a piece of my soul would forever be tarnished.

It’s been just over a year and a half since you have been gone. Longer in fact if you count the several years prior that you were suffering and I watched you, my beloved mother, fade away before me. Those years were extremely tough, but these last ones have not been any easier without you. I can reflect now on how emotionally and physically draining it was for us all. Daily and weekly visits, not knowing if it was going to be one of your good days or bad days. Whether you would recognise me as your daughter when I entered your room, knowing my name and saying it clearly, or if it would be a series of mumbles of words I would attempt to understand in the hopes of having a conversation with you.

But now I find myself reflecting more on the physically and emotionally debilitating pain that you endured - every day, every hour, every minute and every second - and it completely breaks my heart. What must have been going through your mind, but you could not express it. The frustration you must have felt, but you could not scream it. The things you would have wanted to say but could not articulate. The tears you wanted to cry over the hurt and anger of what was taking over your mind, body and soul yet you refused to break down and show this to us. My God. What an incredibly lonely and horrifying black hole it must have felt like. And what a strong and powerful woman you were to have lived through this for as long as you did. Like suffocating and drowning all at once, without being able to express any words, any emotions. It brings tears to my eyes and an ache to my soul just to think about it.

After undergoing heart surgery to repair a leaky valve back in 2009, you then had to deal with the bad news that you had cancerous cells in your bowels. You worked through the cancer treatment, which successfully removed the cells from your body, and we all thought that you were on the up and up, that things would slowly return to the way they were. No one could have predicted what was to come.

We wanted to see you get back on your feet, gain back your independence and live a life where you were happy in your own space and closer to your children and grandchildren. Someone who would be stronger physically and more importantly mentally after going through this experience. A woman who could smile and be proud that she had kicked cancers ass, and could enjoy all that life had to offer. That never happened. In the years following your treatment we soon realised that you being on your own again was unrealistic, as mentally you were suffering.

It didn't make sense to us at first. The forgetfulness, the bizarre conversations. The time when I helped you fold bed sheets off the line and you questioned where I had learned to fold sheets so well. Thirty minutes later you approached me in the kitchen and made a comment about how good my brother is at folding sheets. I said to you “Mum, that wasn't him that folded sheets with you just now, that was me”. I’ll never forget the vacant look you gave me, and then an embarrassed giggle, almost like you were trying to cover up what was actually going on in your mind to those around you or perhaps even trying to make sense of it to yourself.

Then, I got the call that would set in motion a chain of events that would affect me, my life and the person that I would evolve to be forever. These mental lapses weren't just the effects of cancer meds, you were suffering from brain damage. Frontal lobe brain damage. An injury obtained years earlier during your heart operation due to lack of oxygen to the brain… Whoa! WTF?? How does that just happen and go undiagnosed for over 2 years?! Here we are thinking this is just the repercussion of cancer treatment and meanwhile you are suffering from something that will essentially change who you are and the person you have always been. And then, of course, that offset into Parkinson's disease too. One thing after another. How much shit did one person have to go through in their life?

It started as a slow descent but very quickly escalated when we realised that you needed full-time care, after slipping and falling in your home. Simple things were forgotten, like locking your front door at night, and how to use your mobile phone, which is why when you fell, we were extremely lucky that a nurse was walking past and heard you call out for help. It was in a nursing home that you spent your last years, amongst residents that were ten to twenty years older than yourself but it allowed you to get the constant care and support that you needed.

I made a conscious effort to be there as much as I could. To sit with you whilst you had your lunch, often bringing you some home made dinner as a change from the repetition of nursing home peas, carrots, mash and roast meat. I would snuggle with you on the bed and we’d watch movies together and I’d often try and pamper you by giving you a mini manicure and facial. It meant a lot to be able to do that for you. You were always a woman who looked after herself and took pride in her appearance and I wanted to be able to give that back to you. To make you feel a little special, like YOU, when you couldn't do it for yourself.

In the beginning, you shared a room with a German lady who spoke no English, but it was so sweet and reflected your kind nature, to see you go over to her and always attempt conversation, to check that she was doing ok. This spoke volumes about who you were as a person. Kind, caring and sweet. All the carers and nurses would say what a special woman you were, such a beautiful lady to look after, and even now if I run into them somewhere I can see the fondness that they still have for you.

Over those years there were many times I’d be at work and hear the phone ring, so convinced that it would be one of my sisters calling me with the bad news that you had gone. I remember going to visit you at the nursing home and a few days later I would break down at work. It was as though I had held my shit together when I was with you, as I didn't want you to see how broken I was inside,  yet it was always a couple of days later that it would all come out in an emotional heap. I’d be at work and could not switch my mind off, or a memory or song would trigger it and I would have to leave for the day. Sometimes just sitting alone on my couch zoning out with a bottle of wine, some mindless tv or a book that took me to a faraway place, was the best remedy and the only way I could escape my reality for a brief moment. That still happens to me today.

Despite the time that has passed and even though I am no longer watching you suffer, sometimes it’s just the memory that is enough to knock me out, where I feel all I want to do is be alone and away from everyone. It shocks me even still how there was a time that we all thought that this was it, that the end wasn't very far away. You seemed to go downhill fairly rapidly even though you had already been suffering for years now. I had no idea, nor could I have predicted that it would go on as long as it did or that you could get to a stage that would be worse than I could have ever comprehended.

The walking stopped. Any motion period was no longer a part of your daily being. You were either in your bed or in your “Princess chair” or being carried out of bed for your daily shower and change. The recognition stopped. There were days where I would come in and you would not know my name and often had to be reminded of who I was. Other times I could see the recognition on your face when I walked in. One of familiarity, likely aware that I was one of your daughters, but you could not find the words to articulate it. The words stopped. No longer conversations with my sweet mum, telling you the latest about my life or chatting about the world. Instead, just slurs of speech; made up words that resembled sounds more than anything else. But there was the occasional laughter which could light up any room. I could be sitting there with my housemate, who often came for support, having a conversation about the “crazies” that frequented her work and all of a sudden you would just start laughing! We laughed with you, and it warmed my soul more than you know. I knew then that despite times of not understanding and being unable to converse, you could hear all that was going on around you. Even in those last days, I am 100% sure that you knew exactly who was there, you could hear our conversations, our laughter and our cries, and you absorbed every piece of those last memories to take with you.

And lastly, the eating stopped. That was when we knew that it would not be long. From bringing you home cooked meals, to feeding you your favourite tiramisu (which I would always spoil you with, along with many other of your favourite desserts) it became quite clear that this was the beginning of the end when you would no longer eat your mashed up meat and veg. I don't blame you quite honestly, it never looked very appealing, but your body was shutting down and despite my efforts to get you fed and keep up your nutrients, there was nothing more I could do at this point.

Those last 2 days we sat at your bedside and we knew that this was it, the end was here. Hours, minutes, seconds. Breaths. How many breaths did we have left to hear? How much more time did we have left to feel your warmth and smell your skin? We played your favourite music, had some of your most loved movies on in the background, and we reminisced with those that came to visit. Even the nurses came in to say their goodbyes, some even crying their own tears of pain and sorrow that this beautiful woman who they had the joy of caring for, was leaving. Kissing your face and holding your hands, it was astonishing to see the effect that you had on so many people, people who didn't even know the healthy you. Years of suffering culminated into those last two days. Two days full of love and emotion.

On that Monday night, I was blessed to sleep by your side, hold your hand and watch over you, just as you would have done for us when we were babies I’m sure, checking that we were still breathing. And after days of just breaths, no motion other than that of your chest rising and falling, you opened your eyes. Wide open, looking up through the ceiling and through the universe itself. I held your hand, your cold fingers resting in mine and realised that now I could not warm them up. You took a deep breath and then stopped. Were you afraid? Not of what lay ahead, but of leaving us behind? After years of pain, this was your time now. Your time to be free, to let go of the hurt, and of the need to be strong for us.

You had gone, and the pain that followed carried on for weeks. The days and weeks after you had passed I remember feeling an overwhelming sense of exhaustion. A numbness if you will, so much so that even responding to all the calls and texts seemed to be too difficult or required too much energy. The memories of this time are as clear in my mind as if they happened only yesterday.  Packing up your room at the nursing home and going through all of your things was difficult. You were there, all around, but no longer physically there with me. Planning your funeral, a task that had to be done, but took so much out of us all. What music did we want to play? What outfit should we put you in? Did we want a coffin or a casket and what flowers should adorn said coffin or casket? Of course, everything we chose, from the flowers to the memorial cards, to the casket, were all some of the most expensive choices. You would have tutted or said “typical, have to pick the most expensive of the bunch”, but you were our mum, and this was no time to be frugal. All of these things I could not even comprehend doing at the time, but the numbness that took over me at that point allowed me to get through it, kind of on auto pilot so to speak

The following days were spent with my sisters, nieces and nephews; not really wanting to be alone or around others who weren't feeling what I was feeling. You were there with us, I know it. In those early days after you had gone, you left signs for us everywhere. The night after you had passed we watched one of your favourite movies together as a family. Toward the end of the movie, during a scene in a run down motel room, there hanging on the wall, was a painting of one of your favourite singers, Roy Orbison. I had watched this movie hundreds of times, almost too many to count, throughout my childhood, into my adult years and not once had I ever noticed this painting. But there it was, as clear as day. I turned to my nephew and said “Oh my god, do you see that painting?! Do you know who that is? That’s a painting of Nanna’s favourite singer!” We both sat there for a moment, silent, and then we just looked at each other and smiled. Everyone else had fallen asleep but he and I were still up, watching it together. And in that moment, it was as though you were there watching it with us, letting us know that you were ok and still with us.

The first time I heard the song Photograph by Ed Sheeran was the day after your death driving in the car with my sister and nephew and we were all brought to tears with the significance of the words and how we were all feeling at the time. I didn't think anything of it then but this song became almost a regular message that you would send to me at times when I needed it most. When I’m alone or feeling a little anxious, when I’m talking about you with friends or cooking your recipes at home. Too many times for it to be a coincidence. I know that it’s you telling me that you are here, beside me, and no matter where I am I can keep you in my pocket and I will not be alone. There are signs like that everywhere and they give me so much comfort, it's indescribable. People might think it’s crazy, grasping on to these little things, but to me, they are so real, and if that’s what gets me by, what fills that empty part of my soul even for a moment, then I say screw them.

After you passed, in the weeks that followed, we would hear many stories from those whose lives you touched. I would take comfort in these, and hearing how others saw you and of the moments you had together just reaffirmed what an amazing, giving and strong woman you were. To all, you were the epitome of grace and elegance - “such a lady” who would do anything for anyone and whose generosity seemed as natural as her beauty. How blessed and privileged do I feel to have you as my mum and my role model?! There are not enough words.

Since you have been gone every day is a challenge and a rollercoaster of emotions. Sometimes I just wanna shut the door and lock everything and everyone else out, because it is all just too hard or irrelevant to the pain I feel without you here. Time does not heal this wound, it just makes the pain more tolerable or the waves in which it comes and crashes over my body less frequent. Life as I know it will never be the same nor would I want it to be. I have lost my mum, the most important woman in my life, the reason for my being, my connection to this world and the life that is mine. You are gone, and no matter how many years you were sick or how much relief I feel that you are no longer suffering, you are not here. And there are no words of comfort that can ease the pain in my heart.

I have such conflicting emotions running through me at the moment. A loss and an emptiness that nothing will be able to fill. As much as I’m relieved that you are not suffering anymore, I miss the routine of going to see you on my days off and just holding your hand, resting my head on your chest and the smell of your skin and your hair. Seeing mothers and daughters shopping together or lunching together is extremely difficult as I want to be able to do that with you. It all just seems so unfair. I want to be able to call you to ask you how to cook your famous meatballs or even chat about the weather. Have you over for brunch or spend a day shopping together. It's adjusting to a new life without you, a new normal and it's extremely difficult.

Seeing everyone else's lives carry on can be a real challenge - at work, at the local coffee shop or the supermarket. Sometimes tears are screaming within me because I just lost my mum and I want to yell to the world “don’t you know what’s just happened to me, why are you carrying on like everything’s normal?” I want to feel all of this. I want to be alone, with my sisters and immerse myself in your family. I want to sit with those friends who are happy to sit with me in silence, amongst the tears, the conversations about you and the hurt that I feel or whatever emotion is running through me at that moment without any judgement or expectation.

I wish you were here to share conversations with over brunch, to call you when I need help making dinner or to sit together on your couch with a glass of Baileys watching the latest flick or our favourite Sex and the City episodes. I remember all of those moments we had together so vividly, I wish I could go back and relive them just to absorb the sound of your voice, the cackle of your laughter and the warmth of your being just that little bit more. I overhear people having conversations with their mothers and often think how unfair it is that I no longer have that privilege. The simple act of a conversation is so often taken for granted and I would give anything to have just one more with you.

Your strength is something that is so evident to me today and is what I carry within me. You are the strongest woman I know. From all that you endured in your life right up until the bitter end, you did it with such grace and humility, never complaining for a second. Not only were you our mum, you were our best friend, our teacher, our protector and our hero. You were our #1 fan and would not only do anything for her children but for those around you. You were someone I could always lean on for support, for guidance, and someone that no matter what your opinion was I could always count on you being there to listen. I never hesitated to tell you anything, something that a lot of my friends were envious of as they didn't have this openness with their mothers. I always kept you up to date with the latest boy drama (there were a few of those) whether I was here at home or living overseas and probably secretly shocked you a few times with my stories!! You were never one to be direct with advice, always telling me to “do what you think is best” and whilst that was soooo frustrating at times, you allowed me to be me, to make my own decisions and to experience life as I wished.

Now I take comfort knowing that you are my guardian angel, I have no doubt about that. Despite not being here physically you are here beside me spiritually and I know you are guiding me and protecting me through my journey. I see the signs you leave for me all the time. Feathers in my path, butterflies in my backyard or resting on my window. Songs that seem to play frequently right at a time when I need to hear them. Your name popping up more than five times in random situations whilst I was travelling through Mexico! You have even appeared in my dreams a couple of times now, perhaps sending me messages that I am yet to understand, but you are there nonetheless. You are with me everywhere, and it has been proven over this past year that when I am in trouble, you are still there to look out for me too.

So mum, what I have learnt during this time since you have been gone is that no one can tell me how to grieve the loss of you or how long is acceptable. I will do whatever it is I need to get through each day and take as much time as I need to rediscover who I am and the person I want to be without you here in my life. I have discovered more about myself as a person and have come to accept that I have made mistakes but that they have allowed me to grow and have made me into the person I am today. I have had to learn some very harsh lessons, but I have faith that no matter how hard I fall down or how lost I feel at times, I will always find my feet again and be alright. It’s been a tough time but after some pretty major personal struggles, I have decided that this is the time for me. I can’t wait to see what exciting opportunities lie ahead, to make new memories with those that I love, and to learn more about myself. I am going to love myself for the person that I am and to look forward to the person that I am going to become. I hope you are just as excited as I am, mum, and ready to come along for this ride with me because I will take you everywhere I go.

I hope that the last thing you remembered before you slipped into the darkness of your mind was that you have three daughters who love you with every ounce of their being. We each carry you with us throughout our lives now, throughout our joys and our troubles and hope to live up to the standard that you set for us as women. But most of all I hope to put you at ease and let you know that you can take a breather from worrying about your youngest daughter for a while.

Go put your feet up and have a glass of Baileys with the other angels up there! I’ve got this mum, I’m going to make you proud.

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