When I found out my daughter Lady Tiffany had a life-limiting and life-shortening condition all I wanted was to make the most of every minute. Tiffany was born with extensive brain damage and a devastating MRI showed that all areas were affected.
Initially we had hopes that procedures like a shunt to drain fluid from her brain or a gastrostomy to ease her feeding difficulties would give us more time with her. Unfortunately, these options were taken away and Tiffany received palliative care with treatments only being given that could ease her symptoms. Although many expected Tiffany to live for only a few weeks after leaving the Neonatal ward, she blessed us with 3 years.
I can remember in those early days looking at Tiffany being scared that every day would be her last. Doctors said she could stop breathing any minute due to the damage to her brainstem.
Tiffany was born in August, and it was looking unlikely she would make it to her first Christmas, all I wanted was to make memories with her that I could look back on. Tiffany’s conditions became very unstable and unpredictable as many children with complex needs are. I struggled with how I could make memories whilst also being sensitive to her needs. Other families would show me things they were doing in the community, or their local hospice and we were stuck in hospital.
Although I was aware of wish granting charities, I wanted things I could do every day and at short notice when things were a little more stable for a few hours but there wasn’t a service that could help. Then I decided that I would think about all the dreams I had for her before I realised her prognosis and I would try and adapt them to our situation. When I lay with Tiffany, I often reflected on my own childhood memories that I wanted her to experience. I believe memory making is a truly unique experience and it’s based on what’s important to you and your family.
We brought a piece of land so Tiffany could gain the title Lady. She became best known for having fun parties, wearing princess style dresses, and always having her room decorated to match whatever season we were in. All on children’s ward. I built a good relationship with children’s entertainment providers within our community, and they were always on hand when Tiffany was having a good day or a party. It took some time to get their DBS checks cleared with the hospital, but it was worth it. Being a family support worker and children’s mentor meant I had some experience of craft activities with children that I was able to use to find things for us all to do with Tiffany including her brother and cousins. I found it can take a few minutes to make a memory that will last forever. I am so grateful that I have photographs and videos that capture the many things we all experienced with Tiffany so I can relive them at any time.
I have always loved scrapbooking and photos are my most valued possessions. Although there is a lot of trauma surrounding events that happened during Tiffany’s life, I am so grateful that I have been able to experience so much with her. There have been a lot of conversations around what Tiffany’s legacy would be, after she taught us so much.
I am very lucky that Tiffany was physically with us for three years, she became a little girl with her own personality and preferences. That doesn’t take away the fact that she like so many others might not have left the neonatal unit. I want to help all families; at whatever stage they are in their journey to make memories with children and babies suffering from life limiting and life shortening conditions. Her life has taught me that every day is worth making memorable. Memories to Scrapbook is about helping families who are in a similar situation to what we were in to make memories both intimately and also with family and friends. I have attached some craft activities you might like to try but you can also visit the website for more resources.
