“Christmas is about being together as a family, and the Ronald McDonald House made that possible.”

“Christmas is about being together as a family, and the Ronald McDonald House made that possible.”

Guest blogger: Kathryn Wrigley

My daughter, Darcy, was born with Angelman Syndrome as a result of a chromosome abnormality. She is severely disabled and has complex medical needs, including epilepsy and scoliosis.

Last November, she was admitted to Oxford Children’s Hospital for spinal surgery but there were complications. She collapsed a lung, needed blood transfusions and her wound didn’t seem to be healing properly. It was a stressful time for my whole family. An anticipated hospital stay of seven to ten days turned into nine weeks, stretching over Christmas and her birthday.

Before the operation, doctors warned us about possible complications but we could do nothing more than cross our fingers and hope for the best. It’s hard planning for a hospital stay. Darcy is unable to talk and has no way of communicating for herself. We always planned that I would stay with Darcy for the duration, to comfort and reassure her and to interpret her body language and pain signals to the doctors and nurses.

I knew about the Ronald McDonald House from previous hospital admissions, but Darcy’s situation hadn’t been quite as serious, so we hadn’t used a room before.

When we first stepped in the House, we felt instant relief. The House meant we had somewhere to lie down properly and get some sleep; somewhere to grab a shower and still be contactable should we need to go back to the ward quickly. It really was a godsend and helped me retain my sanity. In such a pressurised, emotional environment, to have a bolt hole meant so much.

Being close-by definitely had an impact on Darcy’s recovery. She got really upset whenever I left her bedside – even to go to the loo! She needed me to be with her and would have been very unsettled without me. It also meant that I was able to continue with my caring ‘duties’, freeing up the nurses to give Darcy the specialist help she needed.

There were so many touching moments during my stay: the staff, so lovely and helpful, always asking after Darcy; snatched conversations with other parents in the kitchen and laundry room; finding a birthday present waiting for Darcy from the House, to open once she got back from theatre; sitting on the floor in my room with the TV on, wrapping Christmas presents; even making new friends.

Hospital stays are also hard on my other children, Lily and Taylor. We live far from Oxford and visits are a three hour round trip each time! The House meant that Darcy’s dad, Lily and Taylor could travel down at the weekend, so that we could all be together. Lily and Taylor loved the House and that they still had a ‘base’ to call home. It was hard for them sometimes to be with their sister, although they didn’t want to leave either. It gave them breathing space.

Christmas is about being together as a family, and the Ronald McDonald House made that possible. There were decorations up, presents for all the kids and even a turkey roasting in the oven. Lily and Taylor loved it as it was something different – certainly a unique story to tell once they went back to school.

I was super happy to leave the House because it meant we could go home, back to normal for the whole family, but it was also sad. My bedroom at the Ronald McDonald House had been my space, my sanctuary, and I was sorry to say goodbye to the amazing staff there too.

You can’t imagine how much a room like one I had at the House can mean to a family at a time of crisis. Without the House, my family would not have been able to visit for as long, or spend the weekend or Christmas together. I wouldn’t have left Darcy, but probably wouldn’t have coped so well, particularly as it was a much longer stay that we had anticipated. I would have slept in a chair beside her bed if I’d had to.

Ronald McDonald House Charities is a worthy charity that everyone hopes they will never have need of, though they are eternally grateful for it if they do.

 

 

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