I Wish I’d Never Met You

THANK YOU

First of all a HUGE shout out of THANKS to Deirdre + all the “spinners” at PURE FITNESS yesterday!!! What an awesome fundraiser with truly special, loving & generous people.

“FAMILY MEETING”

On November 15th we were all invited to a “family meeting” at Lyndhurst in the morning. We weren’t told very much – other than it would be an opportunity to have all of Tracy’s medical and therapy “team” around the table in one room. Lynn, Mom, Dad, Robert, myself & Tracy of course – all cleared our calendars and prepared our questions and notes for the big day.

Finally, we would have an opportunity to discuss the many questions, challenges and struggles in a mediated and managed forum with professionals giving us input and collaborating on the solutions. Sounds great, doesn’t it?? HA!! Well, what actually happened was not what we had anticipated – what actually happened was a very formal and rigid – 30 minutes – of each professional around the table stating the facts about Tracy’s entrée to Lyndhurst and their prognosis relative to their line of work.  There was physiotherapy, occupational therapy, social work, psychology, nursing, recreational therapy, Dr. “B”and Dr. Judy. Dr B lead the meeting and it was at a fast pace. There wasn’t much time for questions or interactions as it was made very clear that there was another family coming in at exactly the 30 minute mark!!

It was a whirlwind – disappointing to say the least. We felt ripped off. My poor mother just wanted to say something at the end and was cut off as she sobbed an incredibly heartfelt “thank you.” The real goal of the meeting wasn’t for “us” but for them to give us “the date” – of Tracy’s discharge. The actual purpose seemed to be for them to check all the proper bureaucratic “boxes,” and communicate the date that we should be ready to assume Tracy’s care!

DR. LEO DA COSTA

On Tuesday November 22nd Tracy had an appointment with Dr. Dacosta at Sunnybrook Hospital. He is the neurosurgeon who operated on Tracy’s neck and spine the day after her accident – the person responsible for “putting Humpty back together again.”

I volunteered to go with Tracy to Sunnybrook to meet with Dr. D, because I knew she wanted to start at the beginning. She wanted to see all the scans and xrays that we had seen pre-op, post-op and now. She was on a mission to educate herself on her spinal injury. To gain some understanding and figure out why she’s favouring her left side? Was her head on an angle because of the surgery? Would another operation fix it? What was the deal? We finished getting her ready to go that morning and got into the Dignity ‘van’.

We first went to the Xray clinic because they wanted to take another xray of her neck  After that we made our way to Dr. Dacosta’s office – which by the way has two sets of doors WITHOUT handicapped buttons or automatic door openers!?? Huh? He called us into his cramped quarters and gave us his FULL attention. He listened, replied and interacted with Tracy with admiration. I could tell he was amazed, maybe even in awe of her. He shared the details about the hardware holding Tracy’s neck together.

There are 8 screws/bolts – 4 on each side of the front of her neck with a bar going horizontally across the middle section. On the back there is a plate going vertically holding the graft from her hip in place between the vertebrae. He went on to explain just how badly torn and ripped apart her muscles and tendons in her neck had been, and how difficult it was to put her back together again. He seemed to marvel at the fact that she is breathing on her own. It became clear that he did not want to operate again. The risks are way too high. She would need to focus and work through the pain in her neck and start building up strength in her right side. He reminded her that she’d been lying in a hospital bed for the past 2 months and even an able-bodied person would need time to rejuvenate the muscles and work to gain strength. She should be patient.

She was unbelievable during this appointment. Just before we got up to leave, she said “thank you for saving my life,”  to which he replied “I wish I’d never met you.”

DECISIONS

Where to live? Sell, buy, renovate, build… stay or go? So many questions and so many decisions. Have you ever thought about the considerations and accommodations needed for a wheelchair? And then, take that one step further and think about the added accommodations or technology needed for someone in a wheelchair who cannot use their arms or hands? Imagine the myriad of simple tasks that become overwhelming feats. And then layer that with 3 young boys who want and need mothering, nurturing, discipline and care…Now add that to the mix!! I know in my heart that we will work through all of this and find the solution, and Tracy will continue to amaze and inspire us all.

GIFTS

Christmas is fast approaching – the stores, TV, magazines, radio, and advertisements are all telling us to shop, buy and spend on “gifts.” This Christmas has taken on new meaning for our family. I definitely don’t have the same motivation to buy “things.” I seem to be questioning what it’s all about. Is it really about the “stuff?”  If you knew you could ask for any gift this Christmas – anything you wanted, what would it be? My response today would be much different than it would have been in Christmases past. Today if you asked me that same question…. I promise I wouldn’t be greedy and ask for Tracy to be able walk, or to rewind the clock and take away her injuries. I would say “please God give Tracy strength, courage, peace and hope” …I might say “please let her have some movement in her hands, or her arms” … “please let her find happiness and purpose again.” Those are some of the “gifts” I might ask for today. This Christmas celebrate the “gifts” we all take for granted every day.

Les

  • Charlie

    You are all amazing. I live the spirit that obviously runs through Tracy and all of your family

  • Janet

    I think you will get your wish Leslie. ❤

  • Raquel

    My mom is a 2x patient at Lyndhurst. Once in 2009 and again now, even as I write this, my mom is an in patient at Lyndhurst. We have had several family meetings starting with the first one that occurred 4 weeks after my mom was admitted and wherein we were advised that she would be discharged shortly. Dr. B. is nice but tough and not very “optomistic” for her patient’s future. I was adamant. I was not quiet. And I very eloquently spoke my piece: My mom’s not leaving. Period. End of story. When Dr. B., advised us of her discharge date, I looked her straight in the eye and said “that’s not going to happen”. And it didn’t. This first meeting took place at the end of Aug. of this year. It is now Nov. 29 and my mom is STILL at Lyndhurst thanks to me and my “not so quiet” nature. There have been many family meetings since the first one back in Aug. and at each meeting we were advised of a new discharge date. And at each meeting, I replied “that’s not going to happen.” In our last family meeting 2 weeks ago, Dr. B., didn’t even bother to show up. She knew I would not allow her to discharge my mom until my mom and I both felt she was ready to be discharged. DO NOT let them send Tracy home any time soon. There are ways to go about keeping her at Lyndhurst. If you need help, please contact me. I would be more than happy to help.

    Best,
    Raquel

    • Denise

      I too was part of the Lyndhurst experience. Plain and simple, every patient is a paycheck. They don’t give a damn. The family meeting is not for the patient’s benefit – the staff are a bunch of droids, from the dastardly cold and robotic Dr B., right on down the line. They set up the meeting early to let you know when you’re leaving, so they can free-up your bed for the next person. The care is not individualized, as it should be. To them you’re just a number. I had the joy of arm-wrestling with them, virtually begging for more rehab. They ended up avoiding my glance in the hallway. I am so glad to be home, but I could have used at least another 3 – 6 months of physiotherapy. They’re a heartless lot. Even the social worker Susan betrayed my trust. She sent Children’s Aid to my home, without telling me, because I told her, in confidence that my son was deeply distressed following my accident. He was terrified he was going to be taken from our home. I could write a book about the place. They’re a bunch of backstabbers. I would advise recording every conversation you have with Dr B. right down to the OTs.

  • Kim

    I look forward to reading your blog for any tidbit of news that Tracy’s progress has improved or anything. Please continue to blog as I think about Tracy and her family throughout my day. I met Tracy a long time ago in Chicago–I actually was at her engagement party. I am sure she would not remember me, but I am also now a wife and mother and am just so touched by her story. You are an incredible family. Stay strong. My family went through something similar but different 16 years ago and I can somewhat relate. My mother was in a horrific automobile accident when she was a vibrant 54. She was the matriarch of our family and it was devastating for our family. It left her with a brain injury. She is now 70 years of age, being cared for by my sister and her husband in their home and although not in a wheelchair, needs care for a good part of the day. My sister takes care of her physically (with caretaker help) and I take care of her finances and paying the caretakers, withholding taxes etc. My mom has become a business with the IRS because of her caretakers. I know the ups and downs of life being interrupted to attend to someone else. Tracy is so lucky to have all of you on her side. God bless you all; my thoughts and prayers are with all of you.

  • Teri Donaldson

    Lesley

    I went to SRB and graduated in 1998 (I was one year ahead of Tracy)

    I just wanted to let you know that I read your blog weekly as a CONSTANT reminder about life and how precious it is (your blog is my own reality check).

    You do an amazing job portraying the ups and downs that your entire family is going through. Your blog is a good reminder to us that you can have nothing but still have your health and that this is the more important than anything materialistic. I hope that in some ways this blogs helps you and helps your family.

    I will be thinking of your family this holiday season. Take a little solice that you are all together even though it is not under ideal circumstances at all.

    Teri

  • http://localgypsiespot.wordpress.com Kimberly

    It is so educational and inspiring to read such an honest and detailed account of what it’s like to have a family member recover from a spinal chord injury. Thank you for sharing your family’s story with us, it’s so real and important for us to know what our community members are facing. My love and thoughts are with you.

  • sandy

    I don’t understand the “i wish i never met you part.”

    Tracy and the family are in my prayers.

    • Kelly

      I believe it is meant to say, “I wish I never HAD to meet you”. The only reason they’ve met is due to Tracy’s injury.

  • Deborah

    Oh my gosh! Your “family meeting” sounds very much like ours. Except I wasn’t as nice as your mother, I stormed out angry as hell shouting, “I want my daughter out of here NOW.” Yes, I actually did that. LOL! Most spinal cord injury folks and their families have mixed feelings about inpatient rehab. Although there are always those individuals that stand-out and it varies a little from facility to facility, the acute rehab experience is not usually a fond memory. The real recovery started when my daughter was sent home and we started an intense outpatient recovery program. We literally have thrown everything but the kitchen sink at my daughter’s injury and she has done quite well because of that. I see improvement and recovery in every picture that you post of Tracy. Stay hopeful and take things one day at a time. I’m sending lots of love and prayers your way. Thank-you for the great post!