This time 2 years ago would of been a very strange time for us. We had the happiness that you feel as a parent that your son has been born, the worry that there are problems, the saddness of him going down to special care, the awkwardness of explaining to other people whats going on and the sense of the unknown over the future.
We will always celebrate Freddies birthday and see it as a happy day but at the same time it’s a day that is full of bad memories. I think it’s every parents worst fear to hear that something is wrong with their child.
On the day of your sons birth, when there is a crowd of doctors around your sons cot, prodding & poking him, discussing him while you stand on helplessly & watch, when your told that he more than likely has a syndrome, it kills you. You are suddenly thrust into a world that you don’t know.
2 years later we have come to terms with it. It’s not any easier, our life changed drastically that day. But we are so thankful Freddies here. So we push the bad memories of the 1st June 2010 to the back of our heads & get on with celebrating the fabulous, brave, inspiring little Freddie.
Buying the right present for a 2 year old like Freddie is hard! My house is over run with toys that he can’t play with and he has tons of clothes. But the one thing Freddie has always loved is my Iphone. As soon as I get it out his eyes light up! It comes in very handy, particularly on long car journeys or when we are stuck in the hospital. It doesn’t matter whats on the screen, in fact it could just be a black screen & he would be fully focused on it. So after seeing a few discussions amongst other special needs parents we decided to get him an Ipad. Pretty damn expensive present for a 2 year old but I think we will get alot of use out of it.
We bought one of the military duty cases for it to make sure it won’t get broken. We also have a car mount for it so we can watch mickey mouse in the car, which hopefully will mean no more stressful, screaming all the way there, car journeys! We now just need to see what sort of apps grab his attention. Hand function is limited so i’ve tried to find the most basic ones I can. Most of the ones i’ve downloaded just have things on the screen that move by themselves, different shapes & colours, and a few of them just need a touch of the screen to get them to work, which will be great in helping him to understand cause and effect.
I’m hoping in time we may be able to use the Ipad to enable Freddie to communicate with us. There are all sorts of amazing apps on there for non verbal children, they are too much for Freddie right now but in the future who knows.
He got lots of other sensory toys, a few packets of gellibaff(He was playing in it at 7am this morning! He wasn’t impressed!) & a big treasure box full of different touchy feely things. There are also lots of balloons!
We do unfortunately have a hospital appointment today which is a bit unfair to have on his birthday but even on days like today we can’t escape the health needs of Freddie.
I’m so thankful to be celebrating Freddie birthday today. The scary thing with having an undiagnosed syndrome is that the doctors have no idea of what the future holds. So for us, every smile, every cuddle, every day matters. Lifes so precious. Freddie is a fantastic little boy who lights up my world, I don’t believe many people could meet Freddie or even just look at a photo of him & not smile.
Feel Good Friday – is a weekly celebration of the achievements of our Swan Children (Syndromes without a name). It’s a lovely way to ensure that we always look at the positives, no matter how difficult the week has been.