Thanks to the committee of the The Dr. Jay Golf Classic for organizing this fundraiser for paediatric palliative care and for inviting us to share Sasha's story.
I can think of no better place to be on the eve of the one year anniversary of Sasha’s death than to tell you all about the key role of the Dr. Jay Children’s Grief Program in giving us the courage to bring Sasha home.
Our happiest days were the births of our two daughters. Sasha, our first, was born June 6, 2004 and shortly after she popped into this world we discovered she had a serious congenital heart defect and Alagille Syndrome, a rare liver disease. SickKids told us her condition was extremely difficult however they would take her on as a surgical candidate. At eighteen months, after multiple catheterizations and heart surgery, Sasha was thriving and all was going as planned. However she then suffered severe complications after her 2nd surgery in December 2005. The period after Sasha’s surgery was the most difficult time of our lives as we saw Sasha go through intervention after intervention and our criteria for her quality of life kept dropping.
We basically moved into the hospital, the weeks turned into months and Sasha was dependent on nutrition through an IV and almost daily blood transfusions. Mom knew she was dying but I kept hoping she would get better. After 5 months at SickKids, we were exhausted and we needed an intervention. A friend gave Pamela the phone number for the Temmy Latner Center, where the Dr Jay Children’s Grief Program is situated. The counselor challenged us and asked the questions we didn’t want to ask ourselves. We spoke about Sasha’s death and as soon as we left the his office, we knew that we wanted to take Sasha home and, as important, that we could take Sasha home.
We wanted her to see her house, her dog, her toys – we finally felt, as we considered the ending of her life, that the quality of her life was again the top priority.
On the Dr Jay website, there is an article by Jennifer and Celidh, two of the program grief counselors. Celidh worked with Sasha when she was in Child Life at SickKids. The article ends like this: "It is crucial that caregivers realize by not talking to the children about death, they are not averting a fearful situation for the child; rather the child is already in that situation and what they are evading is an opportunity to reassure and offer a sense of security for the child. However, if children are able to express themselves freely, they have the invaluable opportunity to receive emotional support from their loved ones, to feel included in the family's experience, to be reassured and that they are not alone and that, while altered, their family is still a family." Just like siblings, parents need that reassurance and emotional support. The Dr Jay Children’s Grief Program gives parents the emotional support to take a dying child home or to stay in the hospital if that is their choice. It helps their siblings talk about their brother or sister’s life and death and then it helps the whole family grieve and remember and honor their child.
Every moment of going home was special. Time seemed super charged. Her smile when she saw the car for the first time in 5 months. Watching her in the car seat, looking out the window, humming to herself. Seeing her eyes widen as we walked her around the house. Her first bath. Long sleep ins. Sleeping with Sasha in our own bed that first night was an incredible milestone for us. We played and sang songs together. We awoke with the sun and birds chirping and then Pamela coming in to reset the IV. The nurses worked with us to lessen their visits and let Pamela take over the nursing duties. Sasha was happier and more comfortable and her bleeding just stopped. The councelors l came over and we told them that Sasha was no longer bleeding, what do we do? Well we go on living. When Sasha’s paediatrician came to check on her we had completed a full circle, Sasha was back with her community doctor. There were no more blaring intercoms. We walked the neighbourhood, hung out with family, and celebrated Sasha’s second birthday.
I would like to share some of my diary from the time:
May 17, 2006: After five long months at SickKids Hospital in Toronto we are taking Sasha home. Not as we expected and hoped, to continue our lives happily together, but to let Sasha go to sleep in her home, in our bed, surrounded by our love, at the time of her tired body's choosing, in as much comfort as we can provide... .
May 19: She just doesnt feel like sleeping tonight, she is bubbling with new words, moving the milk bottle back and forth between her hands, clasping with one and slapping with the other. Squeeks, exclamations, laughs in her throat as she drank the milk.
Mom: sasha has been home since wednesday and we all could not be happier. she has taken over our bedroom even though she has the prettiest bedroom in the house. we are slowly getting into a new routine everything seems very manageable. it feels amazing having our whole family under one roof again and i hope we continue to help sasha be happy, comfortable and safe.
May 28: One of the strangest and most welcome experiences on our return has been to give Sasha complete peace and quiet and normality. We change her IVs in the morning and at night, other than that we get to hear the birds chirping outside and during the last week we have enjoyed sleep ins with our little peach that are blissful.
June 6: "Well, we are lucky to enough to celebrate our little peaches birthday today with most of our family. Sasha was so excited that she was turning 2 that she did not sleep the first 5 hours of June 6. Jonathan and I were able to slip away to get some groceries while Sasha took an extra long nap with Raina. All of Sasha's grandparents and most of her aunts,uncles and cousins were able to attend and the weather held up which allowed us to spend the whole time in the backyard. We presented Sasha with her birthday cake and I couldn't keep my eyes off of Jonathan who sang her birthday song with tears rolling down his face. It was an emotional day for us knowing that this will be Sasha's last birthday with us. After we all gobbled down our yummy Loblaw's cake, Sasha was ready for a change of scene and Bubby and Lynn took her for a little promenade around the neighbourhood. While we were giving Sasha her medicine, we started opening her gifts but her tiredness cut the gift opening short. Nonetheless, we want to thank everyone for all the beautiful gifts for Sasha. We also want to thank the palliative care team for sending the birthday balloon bouquet."
June 16: "Tonight she played my fingers like an instrument. She has the most amazing fingers which we noticed when at a very young age she started to fan the thin thin paper in the phone book. She loves drums and xylaphones and putting a finger out to be touched. Tonight she ran the edge of her fingers over my fingers, with the touch of a feather. Another new thing over the last few weeks is that she flicks her eyes open and shut like a little game between us."
June 20: "Sasha slept, we lay with her, padded about the house, did some cleaning and gardening. Marcia and Henry visited and sat with Sash and then we sang Sasha Baa Baa Black Sheep and touched her brow to close her eye, she's an open eye sleeper. She breathed five times quickly and I kissed her and walked into the hall and Lorna called me immediately. She was not breathing; I kissed her brow and told her everything was ok beautiful girl. About 20 seconds later she exhaled deeply and left us peacefully at 6.20pm, Tuesday June 20, 2006. Dr Goldman took out the PICC and we changed her diaper, put on a beautiful pink dress and lay with her until the funeral service came and I carried her out wrapped in her blanket to the wagon. Sasha fought for a month, to be at home after 5 monthes in hospital, when the bleeding had taken all her energy she left us in 14 hours. You are free sweet baby girl! Thanks for what you gave us Sasha, you are always a part of our family, the Alagille family and the health care family that you touched deeply."
Mom: "Walking around the house without her sounds and screams is strange. Wanting to touch her and feel her weight on me makes me ache. As I pace around the house, not sure if the pains in my belly are contractions, I enter every room only seeing Sasha. Going to bed tonight knowing I won't hear her vibrant voice makes me so sad. In so many ways I wanted Sasha to meet her sibling and have that moment. We tried so hard for her to experience as much as she could."
Pamela went into labour four hours later and Mia was born 11 and a half hours after Sasha died. At one week of age, Mia was in a stroller graveside at Sasha’s funeral. During shiva services, family and friends and doctors and nurses who visited would be directed to the right to see the grieving family and upstairs to see Pamela and Mia. It was a strange scene, kadish downstairs, coos and laughs with baby upstairs.
The Dr Jay Foundation motto sums up perfectly what we wanted to do: to add life to a child’s time, not just time to a child’s life. We thought that Sasha would only live a few days and I could speak all night about how incredibly special it was at home with Sasha but here are a few final thoughts.
We would not have returned home without the emotional support of the counselors whose work is funded by the Dr Jay Children’s Grief Program.
After experiencing very high standards of care from Sasha’s SickKids cardiologist, the doctors and nurses and grief counselors picked up the support role without dropping a beat. They were incredibly positive, gave us as much space as we needed yet were always available.
And as the hospital gave us a good life with Sasha, so The Temmy Latner Centre and the Dr Jay Children’s Grief Program gave her the good death at home that she deserved. In Nov, the grief counselors organized a Ceremony of Remembering for a number of bereaved families and it was the most powerful and beautiful memorial we have ever participated in as we built a small house in which to put memories of our deceased.
The program is working with the Hospital for Sick Children to give families the option of allowing their child to die at home. Sasha was one of the first such children.
And Dr. Jay, without even realizing that his generosity had already helped us, was the first person to reach out to us after Sasha’s story was written about in August 2006. That email made my day and I would like to read it to you.
Hello Jonathan: I read your article in the Toronto Star. First let me say how sorry I am for your loss. In the next breath, I am so greatful for you coming forward to help the awareness that there is a tremendous lack of pediatric palliative care in Canada. I have dedicated my life's work to helping and I would love to speak with you personally to help you so that you do not have to reinvent the wheel.
Best regards, Dr. Jay Bacher
I vividly recall our first conversations, mostly because Dr Jay was such a good listener. He helped show us the way to turn grief into support for these fragile and beautiful kids and their families. Through their fundraising work for paediatric palliative care, Jay and Fern were in our lives before we met them in person.
The pictures of Sasha, Pamela and myself on your pledge binders were taken by Heather Rivlin on the first morning home as part of her volunteer work. I’d like to thank the Dr Jay Foundation for helping make this picture possible and we thank all of you tonight for your generosity in helping bring very sick children home to the places they love most.
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