Learning to live with an autoimmune disorder A mosaic of my journal

Cathy Beesey Founder Stories Connecting Us

Part 4: Choosing Families 

Chapter 16: My Gibson Family

The link to my memoir Contents and published chapters is at the end of this post.

‘Stan, I am adopting your family whether you and they like it or not.’ He replies, ‘We are not perfect.’ ‘I know but your family is compassionate, they care and know how to show it. This is more than enough for me.’ There is something about this other family, my Gibson family; I am seen and heard always, and alongside this, as I learn to live with Wegener Anca Vasculitis, they give something more at different times, in different ways. And I love them for this. 

Flowers from Sue and Matt

Daily Caption: Flowers from Sue and Matt, 12 February. Sue, Stan’s sister sends flowers and as I do I send her a photo with my thanks. The flowers warm my heart, tears of gratitude form. Sue and her husband Matt contacting us often, making sure we are okay. Sue sends a message: the flowers are not what I expected. 16 February new flowers arrive from Sue and Matt. I send a photo as I do and as we talk Sue explains her complaint to the florist, new flowers sent.  

*

Tahlia, our second eldest granddaughter is up early to leave for RMIT. Daily Caption: It is Tahlia’s birthday, Tuesday 12 March. We wish her a happy birthday before her day of study. Throughout the day fatigue overtaking I slowly and joyfully clear the dining table of all health paraphernalia and on the mauve tablecloth I place: crystal candle holders, Tahlia’s gift of flowers from us and Danni’s handmade birthday card. Our gift to Tahlia is a haircut with Natalie my hairdresser. Renee, Stan’s daughter shares her sadness she won’t be with Tahlia on her birthday and delights in the special things we’ve planned. 

Dinner together, a family meal, our new family for half the week. The deconstructed birthday cake with candles lit: a one and nine. Gelato of blood orange, Tahlia’s favourite, and strawberry on a layer of cake. We tell Tahlia the story of her birthday cake. It was in the fridge, Stan peeked, ‘It’s melting! It was in a fridge at the shop. It has cake on the bottom. I thought it would be okay. Why didn’t I put it in the freezer?’ Stress overwhelming, ‘I need your help.’ For this moment it is like it was before Wegener Anca Vasculitis. Getting up quickly I take a heavy basket out of the freezer, not sure how, Stan places the cake in the basket and then freezer. Later I say when all is calm, ‘We can call it a deconstructed ice-cream cake,’ he smiles. We have created a memory for Tahlia and one I write in my journal. One thing I have learnt, everything is okay and when things go wrong, create a story. Maybe I’ve always known this. 

In hospital before diagnosis, temperature raging, one of my high temperature delirious great ideas is that Tahlia live with us part time while she studies in Melbourne; and lives with her mother and family the rest of the week. This has become one of my proudest high temperature delirious ideas. Wanting to do this because I have been fortunate to be educated and had a wonderful career. I want Tahlia to have the same opportunity, she can do this. We always talked with Kelsey and Tahlia, now our grown-up granddaughters about living with us to study, work, a starting place for finding their way through life.  

Gratitude: To Tahlia, feeling privileged to be part of her life, sharing her fears, excitement in her Tahlia way. What a wonderful woman she has become. Tahlia thanks us warmly with a strength I admire and I am in awe of. Her life as an adult and future career is waiting. I trust she will cope living with us. 

*

Daily Caption: Its Jade’s birthday, Wednesday 20 March. Stan is at the acupuncturist for a massage and treatment. I sit and write, Tahlia doing her own thing, on our deck in the warmth, and she is doing what she would at home. Renee gives her girls the space they need to be who they are. A hug from Tahlia as she leaves for her Philip Island home to celebrate her sister Jade’s twelfth birthday. ‘Happy birthday Jade, we wish we could celebrate with you.’ Jade thanks us for the money that will go toward a new trampoline for her health, fun and exercise and the dress Stan chose. She loves it.

Some of my favourite times with Jade are sitting on their couch quietly talking. It is like with Renee and me. One of the most touching things Renee has said is, ‘You are the only one I share so much with and so honestly.’ Another one of the many reasons I miss visiting their home, mostly I miss Jade’s hugs. As Jade, Stan and I begin our goodbyes, she says, ‘I love you.’ Wise beyond her years Jade is sounding older, growing up quickly. 

*

Daily Caption: It is Easter Sunday, Sunday 21 April. This would have been a day with family but … Renee with her family: Glenn her husband and her girls, our granddaughters: Kelsey, Tahlia and Jade having Easter Sunday lunch. The phone is on speaker. Renee with laughter in her voice, ‘We have tried to do Easter lunch like you and dad, but we don’t have enough matching plates.’ They are building on our traditions and creating their own. This year additional chocolate treats: homemade chocolate hot cross buns and chocolate tart, and I respond with, ‘You are celebrating the Gibson’s love of chocolate.’ Renee sends photos filled with happiness. A sadness overwhelms, not being together.  

*

Stan is frantic as he cooks, Kelsey our eldest granddaughter is in hospital, ‘We can eat when it is ready, there is no rush, don’t worry about dinner.’ Kelsey is in my thoughts and has been since yesterday when she arrived at Monash Hospital with a suspected appendicitis, but it doesn’t seem to be this. She was admitted last night. I am frustrated we cannot help. Yesterday I suggested to Stan that when Kelsey gets out of hospital her and Tahlia could come here. Stan has taken on the role I had at the beginning of this journey making sure I don’t do anything to further impact my health. He says gently, ‘They can’t come here after being in hospital, we have done a lot for them in the past and we will do more in the future.’ As I listen, with sadness, I realise yet again it is time to take care of myself in a way I haven’t before. I will text Kelsey sending my love. That is what I can do, this is all I can do.  

I talk with Renee for over an hour on the phone about Kelsey, Tahlia, Jade and anything and everything. The conversation coming back to health: how I am, the treatment and Kelsey’s improvement. Our conversation is easy, taking twenty minutes to say goodbye. Each time we start to end our conversation we find something more to say. Renee asks, ‘Will we be able to have Boxing Day at your place this year?’ ‘Definitely.’ Christmas is so far away but I know we can have it here even if I am not well. I wonder what I will think and feel as I look back on this year. 

*

The table is set, Stan has sanitiser ready, my mask is on, hugs from Jasmine our youngest granddaughter, her mother Jacqui, and Lee, Stan’s son. Jasmine is tentative as it is not our way to give hugs when she arrives, hugs always come later. Jazzy plays her recorder; I remove my mask. I will find my mask a week later hidden in the bedroom Jasmine sleeps in when she stays. A delicious lunch of dolmades, eggplant, olives, oil and bread followed by Saganaki with figs and lamb with salad. Jasmine chooses to sit next to me and in-between eating she moves from the table to play. I miss the way we use to play as I moved with Jasmine through our home: to my jewellery drawer, drawing on the brick pathway and so much more. 

Jacqui and I talk of her work, her family living in Christchurch New Zealand coming to terms with a terrorist attack in two of their mosques, devastating the people of this city, the country and world. Jacqui asks, ‘Are you still writing?’ ‘Yes, my story of living with this autoimmune disorder. I will create it from my journal. No more travel blogs for now.’ I am in awe of Jacqui’s passion for learning, her art courses and the piano. We talk of art exhibitions, there is one she wants to visit in Bendigo. I cherish our times together when it is just the two of us, connecting. ‘Your face has changed. Is this from the steroids? I hadn’t realised it would be so noticeable.’ No judgement in her voice, ‘My love of steroids has gone.’ I share with Jacqui how grateful I am to have her and the Gibson family in my life. 

FaceTime with Jasmine at the park when Stan picks her up from daycare; short chats where I feel and see her joy and then as quickly as we begin, she is ready to move to the next thing. They are going to the Happy Apple to buy fruit; she does love to shop. I ache for those longer times with Jasmine: playing, talking, and laughing, being in the here and now. Intellectually I understand her need to do the next thing, although I crave being with her as we have been since she was born. It will come.  

Daily Caption: Jasmine’s birthday party and I am not there, Saturday 11 May. Jasmine, family, and friends are celebrating her fourth birthday, the official party 11.00am – 1.00pm. Too many people, my immune system compromised, I cannot be there. This creating pain in my heart and spirit. I missed Jade’s first birthday because I had a cold, and the pain of not being there lingers. 

Sweet memories of Jasmine’s birthday parties, how we connected. When Jasmine was one, sitting on the floor with adults surrounding her she started to cry putting her arms up for me. At her second birthday party I helped open her presents and at her third when she wanted to wear our gift of a dress and coat, I was the one she came to. I will not have a memory of being with Jasmine, connecting with her in the way we do, for this her fourth birthday party. More loss and sadness, a different kind of grief. Jasmine’s birthday party theme is a rainbow. I draw a rainbow, and balloons each in the colour of a rainbow, with clouds surrounding the caption and balloons, celebrating in a different way. I FaceTime with Jasmine after her party. She runs away, I am sad but understand, she is four; she rushes back to share her Rainbow Care Bear. Although it is Jasmine’s birthday, I receive a special gift with Jasmine saying, ‘You are my special Nana.’ 

*

Our adorable, kind granddaughter Jasmine wants to visit. Jasmine has bought me a small ceramic rooster and knows exactly where it should go, on the outside window ledge on the deck where other small roosters sit. Lee explains, ‘Jasmine has been coming up with reasons to visit. She keeps choosing one of her toys and would say I need to show Nana. When we were in the gift shop she saw the rooster and stated I want to give this to Nana. We need to visit her now.’ 

Only the two of us, Jasmine and I play the card games, a gift from my cousin Linda. Jasmine creating a complicated game that is full of procedures we both must follow. The process is long with Jasmine getting bored deciding it is time to get my jewellery from the drawer, Jacqui seems slightly uncomfortable. I share with Jacqui, ‘Kelsey, Tahlia and Jade always played with my jewellery when they were young. The other day Tahlia went to my jewellery drawer to choose a pair of earrings when she was going out. Marg’s girls loved playing with my jewellery too. This is something I share with those special girls in my life.’ 

‘Jasmine, can I have a hug before you go?’ ‘No.’ ‘That’s okay thanks for a lovely afternoon.’  The others seem uncomfortable, I don’t mind. Jasmine gives more moments of joy than I can count. As she leaves, she hides the Sleeping Buddha, as she always does, smiles and waves goodbye. 

*

Greg, Stan’s brother phones, he phones often to find out how we are. This regularity is new and delightfully surprising. He is at the Lygon Street Festival and asks if it’s okay to come by. It’s good to see him, and I like this shift in his coming to our home, not only for special occasions. It began when he stayed with us when he was unwell and now it continues. He talks lots and we don’t talk of my health. Stan likes and I respect this.

Appointment with Dr Jonathon Andrews, continued improvement, a text to Greg with an update, receiving a prompt reply. I cry, for myself, Stan with arms around me, ‘Don’t cry.’ I sob, knowing it is a good cry as I show him Greg’s text. Through his words Greg has shown my significance in his thoughts, life. Tears fill Stan’s eyes. Since the day of diagnosis this is the only other time I have seen Stan cry. And again, I am grateful to Greg for giving so much and helping Stan shed a tear. It feels strange to have lost a biological brother and gained one that feels so right and finds easy to show compassion, giving of himself and sharing his feelings. Daily Caption: Greg visits, Monday 6 May. I give him a card of gratitude.

Dear Greg

I am grateful to have you in my life. I have felt such extraordinary compassion and care from you during this the most difficult journey of my life. Your visits, messages and phone calls have meant more than I can find the words to say. 

I feel privileged to have shared many family events and to have gotten to know you and your wonderful children Clare, Ben and Lily that I love as nieces and nephew. You are like a brother to me and as I’ve told Stan I have adopted your family as my own, whether you like it or not. Thank you for being you. 

With gratitude and love

*

Ray, Stan’s Father phones often, he always has, now more so checking in on my health. Stan comes inside making sure I am okay, always checking in, ‘I would like to phone Ray.’ As Ray realises it is me, delight in his voice. We talk of what he has been doing and my condition, how tough it is, and that Stan is cooking Chicken Parmigiana for dinner tonight.  Later, Stan turns to me, ‘Thanks for phoning dad.’ ‘I told Ray we would pretend we are at a pub. He said, you must miss going out because you love doing things.’ 

Daily Caption: We visit Ray, Stan’s father, Tuesday 21 May. I sit at home in the morning, in the car to visit Ray, and with him, in the car to come home, exhausted. My longest drive, over an hour and a half each way. I knew it was time to visit Ray, thinking I would be okay. It is more than okay to be with Ray, held by him, some gentle tears, we talk as we always do. With Ray he shares his knowledge, wisdom, and compassion as we talk about different topics. I want Ray to understand my views on life, although it’s not like with my mother, there is never a winner or loser. 

Ray talks of his parents and grandparents, his life as a child with fourteen siblings, an icy pole with the birth of each child. As we leave Ray quietly shares, ‘I wish you had met my father.’ Tired, happy and content, leaving Ray’s around four o’clock we order pizza and have a quiet night. All our nights are quiet. 

The relationship with my Gibson family is more intense, I am confident and comfortable to show my vulnerability. I notice the smaller things; things I may not have noticed as I moved in the energetic way I’ve always moved. I write of them often with gratitude to the Gibson family. 

Flowers, second bunch, from Sue and Matt

Copyright Cathy Beesey, June 2025. All rights reserved; this intellectual property belongs solely to Cathy Beesey.

This is the link to my memoir Contents and published chapters.

Grateful – Contents