Dougie Atkinson has an undiagnosed neurological condition and first came to Bluebell Wood at eight months old, after being referred for respite by the hospital.
His parents, Beth and Antony, were first told there might be complications when Beth was 33 weeks pregnant.
Beth shares the story of her smiley, gorgeous boy:
We were told early on the devastating news that it was unlikely Dougie would live. Once he was born, and we found out that his complications were neurological, we had such a huge mix of feelings. It was difficult to make sense of it all.
Dougie spent the first months of his life on the high dependency unit at the hospital. We were told about Bluebell Wood’s respite care when Dougie was being discharged in 2013. We had no idea at the time of how much support Bluebell Wood offered to families like ours. When we first got there, we were blown away by how welcoming it is and how supported we felt.
Looking after a child with such conditions can be hard. Dougie uses a ventilator overnight, is peg-fed and has a tracheostomy. Therefore, there are few people who can give him the specialist support he needs, other than myself and Antony.
Dougie is now an alert youngster and has become more stabilised. Seizures are still occurring, which is terrifying, but Dougie is incredible, he just keeps on fighting.
Having Bluebell Wood available to us helps a lot. Just last year, Dougie got really poorly, and his support needed to be switched to palliative care. After several spells of hospital admissions, Bluebell Wood’s specialist care staff provided a welcoming, calming place we could be together as a family, while knowing Dougie was in safe hands. It was then that it really hit home to me how important Bluebell Wood was in our lives.
Now, on those really bad days, we know that we can bring Dougie to the hospice and he’ll be looked after properly. It also means that Antony and I can get some rest and some sleep.
Dougie now comes to Bluebell Wood every fortnight, and he stays for two days. It gives us time to ourselves as a family, without having to worry. Generally speaking, we tend to stay with Dougie. But sometimes we leave him and it’s comforting to know that he’s safe. It just means that we can go home and decorate, or go to work…the normal stuff that we don’t get time to do usually.
We’ve yet to get a diagnosis for Dougie, but we’re confident that everything that can be done is being done. We still have really hard times, of course. But knowing that we can come to Bluebell Wood and just relax and get some sleep while Dougie is being taken care of is so crucial to us.
It’s not just about the respite care we receive, it’s the whole package. If Dougie’s poorly, just knowing that we can ring up and speak to someone who actually knows him, and who can give us advice on a personal level, is brilliant. We know we can always pop in if we’re panicking, which is a huge relief. We also find it incredibly useful to be around families who are going through similar situations.
Dougie is such a happy boy. He enjoys cuddles, being outside, going on his swing and licking his giraffe Stanley. He always smiles when you stroke his head, and he’s recently started laughing when you wave his arms around. To us, there’s nothing more important than seeing our son laugh and feel happy. Bluebell Wood has definitely helped that happen. Dougie loves it there; it’s one of the few places where he knows where he’s going and where he feels relaxed. Without the hospice and its staff, we just couldn’t live the way we do now.
In terms of the future, we’re taking it one day at a time. We’re so happy and proud of Dougie for being a little fighter and achieving so much daily, but there is always sadness and a real fear of the unknown.