Why I created this blog
I created this blog shortly after my son was diagnosed with Fragile X Syndrome. We had a later diagnosis than most do now days even though we were aware from the beginning I was a carrier of Fragile X Syndrome.
Over the course of the first three and a half years of my older son’s life, I tried to find information online about infants and toddlers with Fragile X desperately seeking affirmation that my son was ‘okay’. Nothing was complete and so many things were incredibly inaccurate though I didn’t realize that at the time.
When we finally did get our diagnosis, this blog became my way of getting real, accurate information to others that may be going through what I had and helping them along their journey, something I never had.
I continue to blog and follow our journey for the same reason, but also to give others hope. To know that you can survive. That you can do it. To remember in your dark days that there is light and that most importantly – it will be okay.
Where it came
Fragile X comes from my paternal grandmother which of means my father and sisters are carriers as well. It has since been passed onto my child.
Life isn’t always perfect for me. I certainly have my ups and downs as everyone else does. It’s in those down times that I have to remember to put one foot in front of the other and focus now. I can’t change the past, I certainly can’t predict the future, but I can do my best each and every day to make the future the best I can for myself and kids.
It is not easy having your son diagnosed with Fragile X Syndrome. It is not easy raising them, let alone living with them. But I do love my son. I wouldn’t trade my experience with him for another one.
But yes, there will also be days and times that I feel that I wanted to quit. There will be days that I will be fed up and tired. But that’s just life. We needed to keep going. We need to survive.
And so, for me to keep on looking forward with my son and my supportive family, I look at our life in a different perspective. I find things in our life that makes us really inspired. After all, inspiration is just the key to keep on going. It’s what fuels us to be stronger and to achieve whatever goal we are setting.
A Quote for you
Although time seems to fly, it never travels faster than one day at a time. Each day is a new opportunity to live your life to the fullest. In each waking day, you will find scores of blessings and opportunities for positive change. Do not let your TODAY be stolen by the unchangeable past or the indefinite future! Today is a new day! –Steve Maraboli