"The Hospice really is our saving grace”
Every month Sophia stays at St Oswald’s Hospice, based in Gosforth, for short breaks for two nights, providing a home-from-home environment and specialist medical care for Sophia’s complex condition. This Mother’s Day, Megan tells us how her whole family benefits when Sophia is at the Hospice, giving Megan and Sophia’s Dad Lee time to recharge their batteries and see friends and family.
“Sophia has been visiting St Oswald’s Hospice for the last four years, I can’t imagine our life without the Hospice in it and the support we receive from them. No words would ever be enough to thank them for the outstanding care they give to all the children and young adults.
“Sophia attends St Oswald’s Hospice for two nights, once a month. She gets so excited when I tell her it’s ‘time to go to St Oswald’s’, sometimes I have to leave it until the very last minute before I tell her otherwise she gets way too excited and is so impatient – she just wants to get there and get settled in.”
Megan tells us about how she felt when Sophia was first referred to the Hospice:
“For so long I had put off the idea of any additional support, I think initially I felt scared and also had slight ‘mum guilt’ – I didn’t know what to expect so I just put it off I guess. However, a few people I knew spoke so highly of St Oswald’s Hospice that when it was suggested again I decided to have more of an open mind, so I agreed to a visit.
“I still remember that first visit like it was yesterday, I have never felt more welcome and at home than I did the day we first took Sophia for a look around. The staff were so incredibly kind and welcoming – I remember getting back in the car and smiling the whole way home as I felt so happy. This then made me think about how happy it would also make Sophia if she was to attend for short breaks – so I took the plunge and went ahead with the referral. We’ve never once looked back since then!
“Other than St Oswald’s Hospice, and going to school, Sophia is always either with me or her Daddy. Due to her medical needs, family members don’t feel comfortable to have her over night or for long periods of time which is understandable. Sophia spending two nights a month at St Oswald’s Hospice gives me and her Dad the chance to recharge our batteries. Of course it’s nice now and again to go out and socialise with friends but it’s the little things that some people may take for granted which make the biggest difference to us.
“Turning late night alarms off which are set for medications and feeds, not listening for oxygen or heart rate alarms during the night (although I swear I still hear those in my sleep!). The Hospice really is our saving grace, and to know how much Sophia gets from going just makes me so happy. The staff go above and beyond to welcome Sophia when we get there, making a fuss and having her favourite toys out ready for her arrival.
“Sophia has her own routines at St Oswald’s Hospice and the staff know her very well (including when she’s being a little madam!) She enjoys the exciting activities they do, the access to different therapies, the sensory room and the trips out but also the little things like a cuddle on the sofa, singing some songs or sitting at the piano in the lounge playing her favourite tunes.
“Two nights may not seem like a long time to be apart to some people, but when you live and breathe your child every minute of every day, knowing every second with them is a blessing, two nights away from them can also be difficult as you never fully switch off from being on mum duty. Thankfully the staff at the Hospice don’t mind if I call ten times a day just to see how Sophia is and what she’s been up to. That as a mummy makes all the difference, to know she’s safe, happy and content, enjoying her little holiday.”
“I wouldn’t change any part of Sophia or her needs, yes as a mum of such a complex little girl life can sometimes be very difficult, and challenges are always being thrown our way, but the help and support we receive from St Oswald’s Hospice makes life that little bit easier.
“Over the last four years I have had the pleasure of meeting not only some of the most amazing children and young adults who also attend the Unit but also their parents. They obviously just ‘get it’, they understand your struggles, your pain and worries and it’s so lovely to have the network of other parents for us all to support one another.
“Mother’s Day is just around the corner and to me that day is so very special, I would like to wish all of the amazing mums at St Oswald’s Hospice a very Happy Mother’s Day and I hope you realise just how amazing you all are.”
Huge thank you to Megan and Sophia for sharing their story.