and what she told us….
Most regular readers of my blog and people who know me in person know our youngest daughter (YD) has special needs – stemming from a congenital deletion of part of her 12th chromosome.
She is 23 years old and has been living away from home in a residential services setting since a few months before I first got diagnosed with Inflammatory Breast Cancer (IBC) in August 2008. To a certain extent this has enabled us to ‘protect’ her from some of the realities of my cancer treatment and also let me deal with my treatment without trying to be her primary caregiver too. She knew I still had cancer and that I was taking chemo but now was the time to tell her some important facts….
YD came home for afternoon tea yesterday (Sunday), we told her I was getting sicker from the cancer and she investigated the electronic laziboy (she loved the fact it had a remote, that the buttons made it go up and down) and wheelchair that had been supplied by the hospice, we talked about if we went out with the wheel chair she could help push the chair, then she got worried and went off to the kitchen to get reassurance alone with her Dad and they talked about the fact that I was a lot sicker now and that I was going to keep getting sicker – that the cancer was never going to go away.
She had a little cuddle and a cry and went to her room and found her cabbage patch doll ‘baby Tina’ and talked to her – ‘baby Tina started crying’ Dad (OH) and MD went into her room with her. They kept talking to her and she kept saying she was worried and that mummy would get sicker. She asked was Mum going to die – they said yes
She asked if I was going to die at home or at the hospital – they said I was probably going to die at Hospice – the place she has visited where E (hospice family support manager) works. She then wanted to talk to Baby Tina and told her how worried she was and that she was sad and she had a little cry.
We talked about who the people were that she could talk to when she was upset, the family, some staff, some friends.
She then came out of the bedroom and sat with me in the lounge and asked MD when Mummy was going to die and we said Mummy was not going to be alive for her (YDs) birthday next April.
I said I was now like my mum (Grandma J) and would get more sicker fast like Grandma and Grandma died quite soon after she got sick and that we dont know how fast that is going to happen for me. She worked down through the birthdays that I might not be around for - OD’s and C’s birthdays (March) or maybe even be around for my birthday (December) or MD’s (October) – we do not know how fast this is going to happen so it is hard to give her specific time frame.
She was expressing a lot of emotion through Baby Tina – we could find her faster than ‘Baby W’ her older cabbage patch doll doll on the spur on the moment yesterday but will find ‘baby W’ by her visit home on Tuesday. I think it is really important that baby tina or baby Williams accompany here on visits to me and that she can take them home to continue the emotional processing. We printed out some photos of my laziboy and wheel chair for her take home and she also drew a picture of my chairs and of her , dad (OH), MD and baby Tina sitting on her bed talking
Tara’s drawing – she draws a lot to process things
Just before she left she bought up the subject of whether or not I would be buried or ‘made into dust’ and I told her my idea that I thought I would like to made into dust but then my ‘dust’ be put in a box and be buried or put in a special wall at the cemetery with a notice that said my name etc and she could go and visit and take me flowers at the cemetery and ‘talk to me’ like she does when she goes to Poppa and her godfather’s graves – she thought that was a good idea.
As she was going out the front door to go home – she wanted me to give Baby tina a hug rather than herself so I gave Baby tina a hug and told her to ’look after ‘YD’ ’. YD liked that. As they left she also asked OH and MD whether I was going to be here for Christmas and Boxing Day. As OH started to answer ‘Probably not’ - YD had already started to say “ I want to light a candle and put it by Mummy’s bed for her not being here at Christmas” they said it was a very good idea and that they can do that.
Once MD and OH got toYD’s house with her, YD went straight to her room to reunite ‘Baby Tina’ and ‘Yellow Ted’. She stood on the side of her bed and sat them facing each other to have the following ‘conversation’
Baby Tina: “ Your owner (turned towards ’YD’ then back to Yellow Ted) ’YD’ was upset tonight”
Yellow Ted: “ok Baby tina , break it down for me”
Baby tina: “ Mum is going to die, Mum is going to die in hospice”
Yellow Ted “ I understand,… I understand”
Baby Tina “ So ’YD’ is upset”
Yellow Ted: “I understand”
YD then lined up Baby Tina, Yellow Ted and Pink Ted and said they could look after each other and ‘YD’.
foxes342
/ July 22, 2012Sad but Beautiful, reading about your outing to Devonport also reminded me to make better use of my time.
Brenda Denzler
/ July 22, 2012So sad, but you handled it beautifully, Jenny. How your heart must have broken, as you tried to help your daughter through a time that is hard for you, too. Many hugs from way east of you….
Brenda
Elizabeth Danu
/ July 22, 2012My heart is breaking. Sending so much love,
Elizabeth
Amy Jean Snow Schultz
/ July 22, 2012She is sad, but thank God you are preparing her. Any child, at any level, handles tragedy so much better when they are prepared. I am really feeling for you, thinking of you, and admiring and respecting you. Sending you love as well.
Ruth Coates
/ July 22, 2012WHat a remarkable and wonderful family you have. Of course you’re pretty remarkable too Jenny.HUGs, it was done beautifully. Blessings to you and your family.
Marie Algeri
/ July 22, 2012Jenny, that is so beautiful. So sad, but so beautiful.
Ian
/ July 22, 2012YD has an ability to clarify things in the most holistic and compassionate way. Simplicity in itself. She visualises the future for us all. Perhaps we see too deeply and need to elevate ourselves to the surface to see and apppreciate things day by day. Jen you have done a most wonderful job along with Dad and Sisters. My everyday thoughts are with you. Ian
Katharine Murdoch
/ July 22, 2012You are an amazing mum to put your daughters feelings first and to explain so clearly to her what is happening. She is so blessed to have you as her mum.
feistybluegecko
/ July 22, 2012Oh, J, thank you so much for taking precious time and energy to share this with us. I read your fb posts yesterday, expressing how this had been a bit different than expected – I think you handled this perfectly, with grace, honesty and openness, guided by YD’s questions.
You are all in my thoughts and prayers, which I am sending along with oodles of love across the miles to you and your family.
Philippa xxx
Pat
/ July 22, 2012Hi, I read your blog over here in the States, where I’m doing chemo for breast cancer. You write beautifully. I think you’re a wonderful mother and you’ve done so much to prepare your family. Thanks so much for sharing your lessons and your struggle. I’m a nurse who works with hospice patients and your story about your hospice experience is inspiring. All best wishes to you and your family.
Pam
/ July 22, 2012Jenny that must be so heartbreaking for you. I can’t imagine the pain of having to say goodbye to your children whatever age they may be. What a beautiful way of putting things you have. Thank you for sharing. Love Pam
Kelly LaPorta
/ July 22, 2012Jenny, my heart is breaking for what you are going through. You seem to have a fabulous way of explaining it all to YD. My thoughts and prayers are with you and your family as your navigate your way through this awful time.
chemobrainfog
/ July 22, 2012I don’t even know what to say to you, Jenny. I’m heartbroken. There are too many times when no words are adequate. This is one of those times. Just know you are loved. All around the globe, my friend…. you are loved.
xoxox
Rob
/ July 22, 2012Man I feel so sad. This has really hit home with me. Sitting here in my van i’m just about crying. You are such a strong person.
Jayne Muir-james
/ July 22, 2012Just read your latest blog – how heart wrenching for you all having to be strong for YD. Cabbage patch doll/s and Ted will also be her comfort now and for a long time. YD is such a credit to you all as I think explaining things to her was as big a burden to you as having IBC. You are an AMAZING person Jenny and you have been blessed with an awesome family too. X
Nancy's Point (@NancysPoint)
/ July 23, 2012Your words have touched my heart today. Sending love and support to you all. Thank you for sharing this with us.
Elaine (@3lainess)
/ July 23, 2012I admire your ability to discuss this straight on, and to let YD find her own comfort level, and work through her own thoughts. It must be so difficult, but thank you so much for sharing this. <3
Joanna Moore
/ July 24, 2012I am so choked up. What a difficult but necessary conversation. Your daughter is better at processing these things than most people are. She analyzed the situation fully and rationally and came up with a strategy to work through her emotions. Thank you for sharing these moments with us. You have an amazing family.