A year ago today I started writing this blog. I didn’t really know much about blogging back then and the idea of writing all my feelings down for the world to read seemed a bit daunting. But after doing a few posts I really started to enjoy it. It was initially a place for me too offload a bit, somewhere to write down some of my feelings and let off some steam. I think now it’s become more of a little diary for me. A place to write about how appointments are going and what we have been up to. I have always hoped that someone in my situation may have read my blog and took some comfort in knowing they are not alone.
This time last year Freddie was 17 months and life was pretty hard going. We were drowning in appointments and it just felt like a never ending battle. Freddie had started to sit up & was batting at toys. He was eating small amounts of pureed food but we were still relying heavily on his gastrostomy feeding tube. He had start to wiggle across the room on his back a little bit but there was no babbling from him or attempts to crawl or walk. I think back then I was still convinced Freddie would catch up and he wouldn’t go on to be a disabled child. We had been told he had severe delays but I still held out alot of hope that everything would go on to be ok.
A year later and Freddie is 29 months old, We are still drowning in appointments, 1 a week is a minimum, we seem to be on more like 4/5 a week at the minute. Freddies sitting has improved, hes still wobbly and falls over & sits in a very bad position for his spine but there is some improvement. Hes still eating small amounts of pureed food, we have tried to move onto more solid foods but they seem to make him retch. I have been trying to encourage Freddie to take small amounts of water from a beaker so we don’t have to rely on the mickey button so much but he really struggles with swallowing it. Freddie still isn’t babbling but i do think there has been some improvement on his understanding of what i’m saying to him and he has learnt to wave and to clap his hands! Freddie still isn’t crawling or walking and we are having big problems with his sleep. He has little interest in playing with toys, possibly as his hands don’t work as they should but his Ipad will keep him entertained all day, it’s just taking it off him that’s the problem! Freddie takes 9 doses of medication throughout the day via his mickey button and is pump fed milk in the night to make sure he gets enough calories to grow.
There have definitely been some improvement with Freddie’s development, it very slow progress, but any progress is great. I think now I have accepted more that Freddie won’t catch up. That he will need round the clock care for his whole life. It’s a hard thing to accept but i think by accepting it it’s allowed me to change my views and become more positive. I no longer look at other children like Freddie and feel sadness that Freddie isn’t like that(well, maybe i do sometimes! But alot less frequently) I have learnt to embrace Freddie for who he is. I don’t want people to look at him and pity him for being unable to walk or talk, I want people to look at him and smile and see how fantastic he is. He has me laughing daily at how quirky he is…the boy who retches at the sight of foods yet will happily suck on my toe!
Freddies undiagnosed genetic syndrome leaves us with so many unanswered questions over the future. We have no idea if Freddie will live to be 5 years old or 100 years old. What we do know is that the associated health problems that come with these disorders are the biggest cause of death of children aged 14 years and under. Only last week a child who was part of the swan uk(syndromes without a name) group sadly passed away. It was a real shock to everyone in the group and made life with an undiagnosed child seem little more scary.
In my opinion life is far too precious to waste it wishing Freddie was someone else. Freddie may eventually go on too walk and talk or he may not but either way we will appreciate every single day we get to spent with him.
I’m not sure what the next year will bring for us, we are looking at the possibly of another operation in the very near future, talks about overnight oxygen(hopefully it won’t be required) and Freddie should be starting in some sort of nursery/school setting.
This blog is dedicated to Beatrice, RIP little one xx