Meet The Blakemans, one of our inspirational families who have been coming to The Donna Louise for 4 years.
“The Donna Louise saved us, they literally picked up the pieces of our broken family." Meghan Blakeman
Meghan is Mum to three children, Connor 9, Jamie 7 and 5 year-old Lyla. When she was 18 weeks pregnant Lyla had a stroke in the womb, followed by a haemorrhage. Amazingly she survived the pregnancy and her premature birth. She has severe brain damage as a result of the stroke and has 13 diagnoses, 4 types of epilepsy, visual impairment and cerebral palsy. As time goes on Lyla requires more specialist care, equipment and medical intervention.
Meghan explains, “From 18 weeks gestation, it was a very uncertain and stressful time for us as a family. It was difficult to feel relief when Lyla was born as we were told that her ‘journey’ had only just begun. It was tough knowing that Lyla wouldn’t reach the usual milestones that other children would. We would wait in silent anticipation for the first word, first foods, first steps - hoping that the doctors were wrong and that one day she would be able to do these things, but sadly she can’t and she never will be able to walk, talk or eat due to the extent of the brain damage.
The family came to The Donna Louise when Lyla was nine months old. Meghan says, “I was exhausted with worry from trying to be strong all of the time for everyone else. I was broken, Lyla was very ill. The Donna Louise came in to our lives, just at the right time. For me the word ‘hospice’ summoned up grim thoughts of dimly lit hallways and a medical smell kind of facility, where dying was everywhere to be seen. The Donna Louise is the exact opposite of this. There are incredibly special staff and it’s a very colourful and vibrant place to be.
The Donna Louise provides respite stays for Lyla and sometimes for the whole family as well. Meghan says, “We’re not able to leave Lyla with anyone else because of her high level of needs. For us to leave Lyla with them is a massive relief that I find it difficult to explain, even to be able to just have a night’s sleep is magic. I cannot begin to explain the value of Lyla being in a safe environment with trained people that know her well. Since Lyla has begun her respite stays at The Donna Louise, I can breathe again.”
Meghan explains how The Donna Louise helped her family, “They saved us, they literally picked up the pieces of our broken family and now we have a strong support system and a very strong family unit, thanks to all the work the Hospice does.”
"A day in the life..."
6.30am: "Wake up, feeling groggy after a broken 3 hours rest on a mattress on the floor of Lyla’s bedroom, which is the front room of our house. She has 5 machines, with 5 different beeps which have gone off throughout the night. Get breakfast ready for Connor and Jamie, get them up and dressed. There are the usual battles about not wanting to go to school, taking too long to get dressed, it’s exhausting when you’ve had so little sleep. Lyla is 6 but with multiple, complex conditions, it is like having a new-born to care for."
8.30 – 9.30am: "Kip takes the boys to school this morning before going to work. Lyla is still sleeping as she was awake until 3am. I clear the kitchen, it’s our only family living space now that Lyla is in the front room. I prep her medicines for the day. She has 18 different standard meds each day at 5 times, and pain meds in between."
10am: "Lyla wakes up, she has pressure sores as she has been bed-bound for 7 months after a big operation. I map the pressure areas and record them for the carers. Change Lyla’s nappy and freshen her up. Bath time is infrequent as it involves hoists, a lift, and complicated manoeuvring in a bathroom which is too small. Lyla has Raynaud’s so, if she gets cold, she can be in discomfort for days. Her little limbs are stiff and it is painful for her to move her arms. She lets me plait her hair and put in a little flower, I know this means she’s not feeling well as she doesn’t usually like me to mess with her hair."
11am – 3pm: "Update Lyla’s clinical letters. With 13 diagnoses, 23 doctors and 72 agencies involved in her care, keeping on top of the appointments, reports, letters and prescriptions is a full-time admin job. Change more pads. Change Lyla’s position to ease the pressure on her sores. Prepare more meds. The doorbell rings, it is a delivery of medication for the next 2 weeks. I unpack it, check it is all correct and store it on the shelves in the hallway. Call Kip to ask him to pick up some bread on the way home. I can’t get out, even for a short trip to the local shop. Lyla’s not well enough."
4pm – 6pm: "Boys are home from school, they are hungry for a snack and have to quickly get changed for football practice. Lyla’s epilepsy mat is beeping, I run to check she is ok – she has 5 different types of epilepsy and her symptoms change all the time. She has been admitted to hospital 7 times in the last 10 months. I have a hospital bag packed at all times. I am constantly in fight-or-flight mode waiting for the next seizure, beep or spasm."
8pm – 10pm: "The boys have been fed, homework has been done and they are in bed. I wish I had spent more time with them today, they love their little sister so much and know that she needs me, but I feel guilty that I am not able to give them as much one-to-one time as I would like to. Kip’s home, eats his tea and heads upstairs to bed, he’s on an early shift tomorrow."
11pm – 3am: "Lyla is still awake and very restless, I sing her a song and we watch a film together. I’m worried that she is in pain but it’s so hard to know when she cannot tell me. After a recent hip operation, she had a broken leg for 3 weeks. I knew something wasn’t right and it took numerous visits from the GP and eventually a scan to find out what was wrong. It broke my heart."
3am: "Lyla finally drifts off to sleep. I check her machines one last time and try to get comfortable on my mattress on the floor. My mind races with the GP email that I didn’t get chance to reply to, the call I need to make to social services about Lyla’s care package, how we will get the boys to Archery class on Friday, and whether we have mince in the freezer for tomorrow’s dinner. There’s a beep – it’s Lyla’s SATs monitor – I need to check it."