It’s G’s 22nd Birthday today! As with all Birthdays it’s a time for celebration and reflection.

Like we Mum’s often do, I remember the day he was born like it was yesterday.  After a fairly easy pregnancy G had a difficult entry to the world. He eventually arrived after nineteen hours of labour with the help of lots of drugs, including an epidural and then a sink plunger type contraption (Vontuse I think it’s called)

He was a funny looking little chap. “Victor” and I thought he bore a strong resemblance to Parker from Thunderbirds. He had white blonde hair, lots of it. All the nurses commented as it was apparently unusual to see blonde haired babies with such a lot of it. We decided they mentioned his hair because there really wasn’t much else to say…if you’re old enough to remember Parker and the original 1960’s Thunderbirds puppet series then you’ll get my drift!

Me…well, I fell in love with him instantly, just like I had his older sister.

A day later he was whisked off to the SCBU with breathing difficulties – the first of my “please God let my baby be okay” moments, but not the last.

The next year was not my favourite year. G developed very slowly and as I’d trained as a nursery nurse I knew a fair bit about child development – things were clearly not right. Test after test showed nothing untoward and my concerns were put down to me being a bit of a “neurotic mum”.

One possible theory after another meant that I eventually came to the conclusion that I didn’t care what was wrong as long as he lived. After a final brain scan, which showed nothing unusual, the Consultant told us “take your baby home, he’s perfectly “normal”…. famous last words as it turned out because two months later we got the diagnosis of Angelman syndrome, a rare chromosome disorder (his “bit missing”) by the same Consultant

A consequence of all this for me was that for years I used to find his Birthdays really difficult to deal with. It was the one time of year where I really would compare him to other children the same age.  His third birthday was the one that I found the most painful. Most children by the age of three are starting to understand the significance of things like birthdays and Christmas. Most children have reached certain developmental milestones, mentally, physically, socially and emotionally, but G still behaved very much like a baby, he still wasn’t walking or talking and had limited understanding of anything really.

On his third birthday, when collecting T from her school I bumped into a friend whose son was born on the same day as G. Her son ran into the school playground, rushed up to us and proudly showed off his birthday badges. He told me all about his presents and cards and that he was going to have a party. I smiled and chatted to him, asking to see his badges and asking about his party, infected by his obvious joy, but at the same time I was fighting back my tears. I looked down at G sitting happily next to his baby sister in their double buggy. Even though we’d had obligatory cards and presents and sang happy birthday to him that morning this celebration was for our sake rather than his; although exactly the same age, G didn’t know it was his Birthday. It meant nothing to him. He had no comprehension of this significant, special day.

I tried hard not to break down there and then in front of this mother and her son and just about made it home before the tears flowed. It really hit home to me then just how behind in his development G really was. He didn’t understand what this day meant. He couldn’t run, actually he couldn’t even walk. He couldn’t tell anyone with excitement it was his birthday and actually he would never tell anyone anything verbally. I was bereft. The grief I’d felt on the day of his diagnosis completely consumed me again. I was right back there in the Consultants office, with the same sorrow and the same feeling of loss. Perhaps it was the fact that this little boy shared the same birthday as G and it highlighted his difference more. Perhaps it was the fact that I’d gone less than two years down the road to acceptance and things were still pretty raw, I don’t know, but whatever it was from that day I dreaded each birthday.

As I came to accept his difference the less his Birthdays bothered me. By the time he was seven years old, the emotional distress his birthdays caused me had given way to a more accepting attitude and year by year it became easier.

Buying presents was always difficult though because developmentally G stayed at a similar stage, when it came to the toys he liked anyway and I have to admit that I still found it a little depressing walking down the same aisle in Toys R Us each birthday and Christmas. It’s a stark and difficult reminder when you never quite progress to the next, older child’s aisle.

So where are we now? Well for one, I’ve stopped torturing myself by visiting Toys R Us. Birthdays have come and gone, some were tougher than others if they were particular milestones like 13 or 18, but generally they were just a celebration like they are for the rest of the family.

For his 21st Birthday last year we had a big party and lots of our family and friends came along to share in our celebration. I put the event on his Facebook page so were able to let lots of people he knew and who had supported him over the years know about it. Ex teachers and ex support staff came as well as some of his old friends from the special school he attended until he was 16, our friends and his current housemates.  To solve the difficulty of everyone wondering what to buy him we asked people for vouchers and we bought him a hot tub for his garden. He had a great time and so did we! It was a major, special celebration just like everyone else’s 21st Birthday

So today is his 22nd Birthday. He knew it was going to be his Birthday yesterday and he woke with excitement at 4.30am this morning, I found him sat in the sitting room waiting for his presents. G clearly loves birthdays, and now knows exactly what they mean… to him anyway! Birthdays mean presents, chocolate, people sing to you and make a big fuss and this is worth getting up at 4.30am for.

To celebrate this significant and special day we got him an ipad, well actually he’s paid for the majority of that himself and we’ve contributed (I’ve never spent that much on the girls Birthday presents so I won’t him). He has some new DVD’s, there was CHOCOLATE, lots of it! (And there will no doubt be more) and he’s had lots of lovely messages from friends and family on Facebook. He wasn’t majorly impressed with his ipad though and preferred the box of Maltesers.

He’s gone back home now where he’ll enjoy the rest of the day with his housemates and he took a big double chocolate and fudge Birthday cake back with him. Unlike other twenty two year old’s he won’t be going down to the pub this evening and drinking pints of beer or knocking back shots with his mates but he’ll have a good time anyway in his own way… and in a way that means something to him.

As for me, well after a short nap (I can’t do 4.30am starts any more!) tonight I’ll raise a glass and give thanks for having him in my life. The last twenty two years have been a roller-coaster ride, full of ups and downs but the one thing that’s made it all worth it is G.

I sometimes wish I go back to my younger self on his third birthday and give her hug, tell her she’ll be okay and what she’ll feel like in the years to come. When we received his diagnosis all those years ago one of my first thoughts was that I would never be able to look at him again without feeling sad… I never look at him and feel sad, actually I smile far more when he’s around and always have. He always brightens my day with his smile and his laugh (He has an amazing laugh!). When I was told what his difficulties would be I thought I would be the one doing the teaching…actually he’s taught me more over the years than I could ever begin to teach him. In twenty one years I’ve gone from feeling sorry for myself to feeling sorry for other people who haven’t had him in their lives. To know him really is to love him.

So Happy Birthday my gorgeous boy and many, many happy returns of the day! xxx

About Oxfordshire Family Support Network

Oxfordshire Family Support Network (OxFSN) is a not-for-profit organisation run by and for family carers of people with learning disabilities – both children and adults. Oxfordshire Family Support Network (OXFSN) was set up in 2007 by family carers who wanted to use their experience to help others in the same situation, based on our belief that family carers are experts by their lived experience.
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3 Responses to Birthdays!

  1. Lovely, honest writing. I find it so frustrating that professionals still treat parents as though they don’t know what they’re talking about when they raise concerns about the development of little children. I think your Son is very lucky to have had you to advocate for him. I know its hard even when you have some knowledge of the system, and it makes me shudder to think what chance people have when they don’t have support and advocates and people who don’t know how the system works. Keep up your good work.

    • emptynestmum says:

      Thank you, yes I think it’s a common story, blame the mother for being ” neurotic!” then label her as “difficult” when she complains. The fact is none of know the system in the beginning we learn as we go through life and become experts by experience. As for those without families or advocates, this is why person centred planning is so vital and this is why we all need to be pushing hard for this approach to be the norm…we won’t be here forever after all x

  2. Pingback: Anniversaries | A Bit Missing

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