Thanks - from Mary, from us

                     Mary and her twin, Alastair, celebrate their 40th birthday.

            Mary – and her family – want to thank everyone who so generously supported her  gofundme campaign over the past year. We have ended the campaign, but wanted donors to know their generosity has allowed us to acquire equipment and therapies that make Mary’s life just a little easier.

       Nothing has changed for Mary. She is still horrifically brain damaged and disabled with no chance of improvement. Her 30-second memory puts her in a perpetual world of mindfulness, only aware of the immediate moment. She doesn’t know what she had for breakfast or lunch, can’t recall the last time she used the washroom and believes it is 2009 – the year of her brain injury.

        The last time Mary greeted a morning and planned her workday – as a social worker who dealt daily with disabled adults – was in March, 2009, when she was just more than 20 weeks pregnant. Now, there are huge gaps in her memory. She can’t remember the weddings of her cousins, which she has attended in the past few years, nor can she recall her grandmother’s funeral a few months ago, where she leaned into the casket to touch her face.

        She was horrified when she turned 40 in February this year and was told it is 2018. Some days it is easier to just let her dwell in the past.

       Contrary to this complex memory problem, is her recognition and awareness of her daughter, Isabella. She sees that she is an 8-year-old but doesn’t comprehend how that can possibly have happened. When told her parents are officially senior citizens she shakes her head.

        Mary lives in a state of complete bafflement. And then she forgets.

        Not remembering may be easier for her, but for her family it has been sheer hell. Nine long years of constant struggle has left us exhausted and fractured. Just like the victims of many other tragedies and loss, it has left its mark.

       You cannot, nor will you ever, be the same after fighting for so long for the proper care, for justice – still unattained – and a place for someone like Mary to live out her life.

       She is now in a March of Dimes home, where they are aware of her vulnerability and her quirks. She cannot walk and must be transferred to and from bed and for use of the washroom. She must be fed as she cannot use her hands. She does have some function of the left hand and can tap out messages on a Dynavox communication device.

      She nearly lost that ability in February when her left hand became limp and useless. Caregivers wondered if she had suffered a slight stroke and we spent hours and hours in a chaotic hospital ER. While the brilliant ER physician didn’t think it was a stroke, he did think the nerve in her arm had been damaged and did some preliminary tests.

       We explained it was vital that we find a way to fix this as her left hand was the only way she could communicate with us. (And Mary was strongly right-handed once. Brain injury changes a lot of things.) He said he’d like a neuro consult but that it was a bad night with three stroke victims being treated simultaneously.

      The ER doc shuffled off for hours. When he returned, he told us he’d managed to “make a case” for Mary to be seen that night because the affected arm was her only way of communicating. In the end, we saw a resident neurologist. She thought it was damage to the radial nerve, referred Mary to a clinic and we left – nine hours after we’d arrived.

        ERs are not for the faint of heart these days. It takes stamina, strenuous advocacy and persistence to stay the course and not bolt.

      By the time Mary was seen two weeks later at a clinic, there was little life left in that nerve. We were told it might come back – or not – and she had to wear a brace, which she did quite willingly. 
       Two months later Mary was typing again, able to fully communicate with us.

       But there are other signs of physical decline. Nine years in a chair is taking a toll. She can no longer sit upright for very long without sliding to the edge of the seat. It is a worrisome development and we are addressing it by getting her another new wheelchair – one that tilts, so she can recline and rest while in the chair.

     No one stays the same, physically, for long and it is especially true for the disabled. Unable to walk, exercise or stand, major muscles stiffen and bones weaken. Risk of stroke means Mary must be stood up a number of times a day and she engages in some chair exercises.     

        Nine years ago we hoped for improvement, maybe even a miracle (do those things even happen?), and did our best to give Mary’s daughter her mother back. We pursued lawsuits, paid for therapies for Mary (no rehab facility wanted to take her due to her memory problems), and did our best to provide a bright and cheery environment in a small apartment.

     When March of Dimes offered us an affordable option a year and a half ago – a room in one of their homes – we moved Mary to her new digs. We visit as often as we can, provide all the necessities, get her coffee (she’s still an addict), and get her to any appointments she needs. We watch her health carefully and make sure she has the medications she needs.

       It is – to this very day – almost impossible for me to believe the woman in the chair is the beautiful, bright and energetic young woman we raised. Although there are flashes of her sharp humour, traces of that huge laugh, distorted versions of the eyebrow-lifts she’d give when she was skeptical, it is not the same. I miss the Mary who challenged me, made me laugh and who was a good friend. I miss the young woman who was so keen to be a mother, who wanted to get her M.A. so she could work as a hospital social worker, who phoned us every day. I miss her stories – no shortage of them, ever – and her huge smile.

       We will always miss the girl she was.

       We tell Izzy what a great girl her mom was, but as she grows, so grows the distance between the powerhouse her mom was and the lovely girl her daughter is becoming. Izzy would like to believe all we tell her, but I can see that it’s hard for her to understand that her mom was once someone to be reckoned with. She can’t see it. We can’t un-see it.

     And so time passes.

      The gofundme campaign will help us to give Mary all she needs to be comfortable and protected. It is the least we can do.

     We are grateful for your help. We are grateful Izzy still has her mom.

     Thank you!