Ryans memorial
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When Ryan was born I thought I was blessed with the quietest baby in the hospital – but there was a reason for that. Ryan was diagnosed when he was 6 weeks old with Ohtahara Syndrome. We had taken him to the Doctor’s with a suspected ear infection; while we were in the surgery Ryan was having seizures. Ryan’s dad, Kyle, and I we were told not to worry as they were probably because of a high temperature, but an ambulance was called and we were taken to hospital. We went from thinking it was just an ear infection to something so much bigger. He was severely epileptic, with significant brain damage. You can learn more about the syndrome here – https://www.epilepsy.org.uk/info/syndromes/ohtahara-syndrome.
We were told that he wouldn’t see his first birthday, yet we had 6 ½ years with him. In the first few years it wasn’t that noticeable that he was unwell because he didn’t have a lot of medical equipment. I found it hard to go to baby & children groups where people compared their child to mine. I found it upsetting to see children younger than Ryan were more developed than him, with things such as head control. Eventually we stopped going to these groups because it was so competitive, we instead started to go to the Toy Library for children with learning disabilities and complex medical needs but shortly after were told by one mum “we’ve all had a discussion and we’ve decided you’ve got the poorliest child”. We found it hard to take in when doctors told us that Ryan would be a bit behind other children, I thought we’d just get him a tutor, without really realising the severity of Ryan’s condition.
When Ryan had to have an NG tube fitted, we noticed that people were more likely to stare, this really annoyed us, we would rather they asked us about Ryan than just staring at us. Up until this point, Ryan always just looked like a regular baby/young child to us. It wasn’t until we had Ryan’s younger brother Nathan who hit the typical milestones quickly that we realised just how delayed Ryan’s development was and what milestones he had missed. Although he didn’t hit milestones that other parents might expect, he did achieve his own. Some of the things he did were to be able to hold his own head up and hold it for about 3 seconds; you could see the effort he put into being able to do this. At first he could cry to communicate with us but this changed when he was around 3 years old, after that it was harder to identify because of the increasing seizure activity and increased medicines that made him sleepier. Despite this, we were able to communicate with him and read his body language through him gripping our fingers, reacting to his toes being tickled and by the type of seizure he was having.
Our lifestyle changed so much with Ryan. Normally when you plan a child, the baby fits into your life & home, with Ryan, our whole lives revolved totally around him.
Over the years it was our normal routine to be in and out of hospital a lot. Looking back, I think we took him into hospital much quicker at times because we were new to being parents, but as we got to know Ryan better over the years, we probably would make different decisions now.
At Ryan’s most poorly time, he was on ICU at Alder Hey for a week to be ventilated and was then transferred to HDU where he stayed for 9 months. This was like being in a goldfish bowl. Towards the end of this period I was also pregnant with our 3rd child, Lucy. I found it really hard to juggle the care needs of our younger son Nathan and keep some normality for him, whilst having a desperately ill child on HDU that also needed our attention. The doctors were talking to us over an extended period of time that they felt Ryan wasn’t going to survive, but we didn’t feel ready to stop fighting for Ryan. Whilst Ryan was attached to his ventilator, he couldn’t go outside, he couldn’t have any baths – these were things he loved to do. The mask he had to wear covered most of his face and was tight on his head so it would seal completely around Ryan’s nose & face. The upshot of this was that he got more infections like thrush and his skin became really red and sore. You couldn’t see his face with the mask on, just two little eyes looking back at you. Eventually, they changed to an NPA tube due to the continual infections Ryan was getting. This made it easier for the nurses to suction Ryan and it was nicer for us that we could see more of his face.
During the 9 month hospital admission, the doctors indicated there was no more they could do for Ryan so me and Kyle had to make the difficult decision for Ryan not to be resuscitated so he could come to Claire House for end of life care. The whole way through, my gut instinct was that everybody was wrong. When we arrived at Claire House we made some memories, these included Jump photography, a birthday party, Ryan’s first proper bath in 9 months, a family swim in the hydrotherapy pool, XX the dog came in for a visit, creating mementoes such as our perfect charm jewellery with Ryan’s fingerprints, spending time as a family in the garden and playing on the swing with Ryan. Our younger son, Nathan, told us he thought he was on holiday and he was looked after and played with by the team at Claire House. We had a film night where Ryan was brought in in his bed and we could all sit with him in one of the living rooms together as a family. Ryan’s room at Claire House was decorated with twinkly lights. We were here for about 2 1/2 weeks before we had to face the ventilation being taken away. We were told when this happened; we were likely to have less than 24 hours with Ryan. A week later, Ryan was still with us and ventilator free which surprised the medical professionals. So we were admitted to Arrowe Park. At this point, everything had changed and we were now planning to get Ryan home. A care package was put together with night carers and about a month later Ryan came home to us.
Ryan had quite a long period of being quite well with short hospital stays here and there. As time went on, these admissions became longer and Ryan became more dependent on oxygen. At the start of Ryan’s final admission, we thought it was the same as any other, where he got better and came home. However, the usual tell-tale signs were different and I began to think otherwise. My gut-feeling was confirmed as during that last day his deterioration was rapid and we could see his saturation levels dropping significantly. Me & Kyle got to have some time on our own with Ryan to cuddle and talk to him and be able to say our goodbyes. After we had done this, the ventilation that Ryan was on was taken away and replaced with a basic oxygen mask and medication to keep him comfortable. Our son passed away peacefully during the early hours of 21st May 2015 with both of us cuddling him, nestled in dad’s arms.
We were transferred to Claire House a few hours later by the funeral directors; Kyle was able to cuddle Ryan in the back of the car on the transfer to the hospice. I followed separately with our new-born 3 week old daughter. This felt really surreal, we were in shock and didn’t want to believe we had just lost our son. It felt more like we were coming in for our usual respite stay, but this time it was very different. Nathan and Lucy stayed with my mum and Nathan went to school as normal that day, we planned to tell him what had happened when my mum brought him to Claire House after school.
When Ryan arrived at Claire House, Kyle carried Ryan into the Butterfly Suite which was decorated especially for Ryan with things that he liked, such as twinkly lights, music and his ‘Hello Ryan’ sign from when he would come for respite to Claire House.
Claire House arranged for us to go and register Ryan’s death, which was a strange feeling because we had only been there 3 weeks previously registering Mia’s birth. I could still remember walking down the same corridor to register Ryan’s birth. We had help with the order of service for Ryan’s funeral, ideas for flowers, filling out official forms and we were well looked after – meals were always available for us so we didn’t have to worry about tea. But it wasn’t just meals for us, we had mountains of visitors and there was always someone on hand to make cups of tea, we also had a private kitchen available to us upstairs from the Butterfly Suite where we could make our own breakfasts or snacks – this was always well stocked for us. We were able to stay at Claire House in a family room so we didn’t have to be too far away from Ryan. After a few of days, we decided to start going home overnight and coming back during the day to try and get used to being home without Ryan, up until the day of his funeral.
The night before Ryan’s funeral our family were able to come and say a final goodbye. They put special things in Ryan’s casket with him. Nathan put in a packet of pickled onion monster munch and told me they were for when Ryan got to heaven. I felt Nathan believed that now Ryan was in heaven, he was able to eat normal food and do all of the things he couldn’t do whilst he as on Earth.
On the morning of Ryan’s funeral, although we had time with him, it felt like time was rushed and the whole day went like a blur. It would be the last time we would see him and be able to touch him so whatever time we had would never have been enough for us. The funeral procession left Claire House and drove past our home on the way.
After the funeral, we met at Sheridan’s with family and friends. This felt unreal to be sitting in Sheridan’s when we had just left Ryan in the ground. Me and Kyle both felt empty and lost, though we both had to carry on being strong for the benefit of our other three young children.
The support of Claire House still continues, despite Ryan no longer being here. We are still invited on sibling days, we went to a pirate picnic recently so we still feel part of the Claire House family that Ryan was also part of.
Even before Ryan passed away, I feel we’ve grieved all our lives for Ryan. You imagine what your children are going to be like when they’re older and you have dreams for their future. These thoughts and dreams can never be experienced now with Ryan. .
As a family we want to raise money to do a memorial garden that will be very special especially for Nathan to go and remember ryan and also for his other siblings thankyou for your support in advance
https://www.facebook.com/groups/1001425389890233/
https://www.facebook.com/groups/1001425389890233/permalink/1041578379208267/
https://onedrive.live.com/redir?resid=4CB4D75EDE8572B0!31193&authkey=!AAKlud03N-GK3dI&ithint=video%2cmp4
We were told that he wouldn’t see his first birthday, yet we had 6 ½ years with him. In the first few years it wasn’t that noticeable that he was unwell because he didn’t have a lot of medical equipment. I found it hard to go to baby & children groups where people compared their child to mine. I found it upsetting to see children younger than Ryan were more developed than him, with things such as head control. Eventually we stopped going to these groups because it was so competitive, we instead started to go to the Toy Library for children with learning disabilities and complex medical needs but shortly after were told by one mum “we’ve all had a discussion and we’ve decided you’ve got the poorliest child”. We found it hard to take in when doctors told us that Ryan would be a bit behind other children, I thought we’d just get him a tutor, without really realising the severity of Ryan’s condition.
When Ryan had to have an NG tube fitted, we noticed that people were more likely to stare, this really annoyed us, we would rather they asked us about Ryan than just staring at us. Up until this point, Ryan always just looked like a regular baby/young child to us. It wasn’t until we had Ryan’s younger brother Nathan who hit the typical milestones quickly that we realised just how delayed Ryan’s development was and what milestones he had missed. Although he didn’t hit milestones that other parents might expect, he did achieve his own. Some of the things he did were to be able to hold his own head up and hold it for about 3 seconds; you could see the effort he put into being able to do this. At first he could cry to communicate with us but this changed when he was around 3 years old, after that it was harder to identify because of the increasing seizure activity and increased medicines that made him sleepier. Despite this, we were able to communicate with him and read his body language through him gripping our fingers, reacting to his toes being tickled and by the type of seizure he was having.
Our lifestyle changed so much with Ryan. Normally when you plan a child, the baby fits into your life & home, with Ryan, our whole lives revolved totally around him.
Over the years it was our normal routine to be in and out of hospital a lot. Looking back, I think we took him into hospital much quicker at times because we were new to being parents, but as we got to know Ryan better over the years, we probably would make different decisions now.
At Ryan’s most poorly time, he was on ICU at Alder Hey for a week to be ventilated and was then transferred to HDU where he stayed for 9 months. This was like being in a goldfish bowl. Towards the end of this period I was also pregnant with our 3rd child, Lucy. I found it really hard to juggle the care needs of our younger son Nathan and keep some normality for him, whilst having a desperately ill child on HDU that also needed our attention. The doctors were talking to us over an extended period of time that they felt Ryan wasn’t going to survive, but we didn’t feel ready to stop fighting for Ryan. Whilst Ryan was attached to his ventilator, he couldn’t go outside, he couldn’t have any baths – these were things he loved to do. The mask he had to wear covered most of his face and was tight on his head so it would seal completely around Ryan’s nose & face. The upshot of this was that he got more infections like thrush and his skin became really red and sore. You couldn’t see his face with the mask on, just two little eyes looking back at you. Eventually, they changed to an NPA tube due to the continual infections Ryan was getting. This made it easier for the nurses to suction Ryan and it was nicer for us that we could see more of his face.
During the 9 month hospital admission, the doctors indicated there was no more they could do for Ryan so me and Kyle had to make the difficult decision for Ryan not to be resuscitated so he could come to Claire House for end of life care. The whole way through, my gut instinct was that everybody was wrong. When we arrived at Claire House we made some memories, these included Jump photography, a birthday party, Ryan’s first proper bath in 9 months, a family swim in the hydrotherapy pool, XX the dog came in for a visit, creating mementoes such as our perfect charm jewellery with Ryan’s fingerprints, spending time as a family in the garden and playing on the swing with Ryan. Our younger son, Nathan, told us he thought he was on holiday and he was looked after and played with by the team at Claire House. We had a film night where Ryan was brought in in his bed and we could all sit with him in one of the living rooms together as a family. Ryan’s room at Claire House was decorated with twinkly lights. We were here for about 2 1/2 weeks before we had to face the ventilation being taken away. We were told when this happened; we were likely to have less than 24 hours with Ryan. A week later, Ryan was still with us and ventilator free which surprised the medical professionals. So we were admitted to Arrowe Park. At this point, everything had changed and we were now planning to get Ryan home. A care package was put together with night carers and about a month later Ryan came home to us.
Ryan had quite a long period of being quite well with short hospital stays here and there. As time went on, these admissions became longer and Ryan became more dependent on oxygen. At the start of Ryan’s final admission, we thought it was the same as any other, where he got better and came home. However, the usual tell-tale signs were different and I began to think otherwise. My gut-feeling was confirmed as during that last day his deterioration was rapid and we could see his saturation levels dropping significantly. Me & Kyle got to have some time on our own with Ryan to cuddle and talk to him and be able to say our goodbyes. After we had done this, the ventilation that Ryan was on was taken away and replaced with a basic oxygen mask and medication to keep him comfortable. Our son passed away peacefully during the early hours of 21st May 2015 with both of us cuddling him, nestled in dad’s arms.
We were transferred to Claire House a few hours later by the funeral directors; Kyle was able to cuddle Ryan in the back of the car on the transfer to the hospice. I followed separately with our new-born 3 week old daughter. This felt really surreal, we were in shock and didn’t want to believe we had just lost our son. It felt more like we were coming in for our usual respite stay, but this time it was very different. Nathan and Lucy stayed with my mum and Nathan went to school as normal that day, we planned to tell him what had happened when my mum brought him to Claire House after school.
When Ryan arrived at Claire House, Kyle carried Ryan into the Butterfly Suite which was decorated especially for Ryan with things that he liked, such as twinkly lights, music and his ‘Hello Ryan’ sign from when he would come for respite to Claire House.
Claire House arranged for us to go and register Ryan’s death, which was a strange feeling because we had only been there 3 weeks previously registering Mia’s birth. I could still remember walking down the same corridor to register Ryan’s birth. We had help with the order of service for Ryan’s funeral, ideas for flowers, filling out official forms and we were well looked after – meals were always available for us so we didn’t have to worry about tea. But it wasn’t just meals for us, we had mountains of visitors and there was always someone on hand to make cups of tea, we also had a private kitchen available to us upstairs from the Butterfly Suite where we could make our own breakfasts or snacks – this was always well stocked for us. We were able to stay at Claire House in a family room so we didn’t have to be too far away from Ryan. After a few of days, we decided to start going home overnight and coming back during the day to try and get used to being home without Ryan, up until the day of his funeral.
The night before Ryan’s funeral our family were able to come and say a final goodbye. They put special things in Ryan’s casket with him. Nathan put in a packet of pickled onion monster munch and told me they were for when Ryan got to heaven. I felt Nathan believed that now Ryan was in heaven, he was able to eat normal food and do all of the things he couldn’t do whilst he as on Earth.
On the morning of Ryan’s funeral, although we had time with him, it felt like time was rushed and the whole day went like a blur. It would be the last time we would see him and be able to touch him so whatever time we had would never have been enough for us. The funeral procession left Claire House and drove past our home on the way.
After the funeral, we met at Sheridan’s with family and friends. This felt unreal to be sitting in Sheridan’s when we had just left Ryan in the ground. Me and Kyle both felt empty and lost, though we both had to carry on being strong for the benefit of our other three young children.
The support of Claire House still continues, despite Ryan no longer being here. We are still invited on sibling days, we went to a pirate picnic recently so we still feel part of the Claire House family that Ryan was also part of.
Even before Ryan passed away, I feel we’ve grieved all our lives for Ryan. You imagine what your children are going to be like when they’re older and you have dreams for their future. These thoughts and dreams can never be experienced now with Ryan. .
As a family we want to raise money to do a memorial garden that will be very special especially for Nathan to go and remember ryan and also for his other siblings thankyou for your support in advance
https://www.facebook.com/groups/1001425389890233/
https://www.facebook.com/groups/1001425389890233/permalink/1041578379208267/
https://onedrive.live.com/redir?resid=4CB4D75EDE8572B0!31193&authkey=!AAKlud03N-GK3dI&ithint=video%2cmp4
Organizer
Sharon Pascoe
Organizer
