Category Archives: Personal Journal

Every Morning with Fragile X Syndrome

What is Fragile X syndrome?

Fragile X syndrome is a genetic condition that causes a range of developmental problems including learning disabilities and cognitive impairment. Usually, males are more severely affected by this disorder than females.

 

Affected individuals usually have delayed development of speech and language by age 2. Most males with fragile X syndrome have mild to moderate intellectual disability, while about one-third of affected females are intellectually disabled.

 

Children with fragile X syndrome may also have anxiety and hyperactive behaviour such as fidgeting or impulsive actions. They may have attention deficit disorder (ADD), which includes an impaired ability to maintain attention and difficulty focusing on specific tasks.

 

About one-third of individuals with fragile X syndrome have features of autism spectrum disorders that affect communication and social interaction. Seizures occur in about 15 percent of males and about 5 percent of females with fragile X syndrome.

 

Most males and about half of females with fragile X syndrome have characteristic physical features that become more apparent with age. These features include a long and narrow face, large ears, a prominent jaw and forehead, unusually flexible fingers, flat feet, and in males, enlarged testicles (macroorchidism) after puberty.

 

Every morning with my son

This boy of mine wakes to a world that is too bright, too loud & too fast. Every day we pray that we can provide him enough love, comfort and security to get him through to the end of the day whole and happy.

 

Every day we give him his medications, to hopefully smooth the rough edges of the world that will tear at him. Every day we give him his “firsts” and “thens” to sooth the anxiety that can rear its head without warning. Every day, I fear we will fail. Some days the fears come true. Some days they do not.

 

Regardless of whether the fears were justified or not, every night, my son hits reset. He greets every morning with joy. After years of living in a body with skin too sensitive and a brain too connected to give him the peace everyone else takes for granted, this boy gets up every morning and shines.

 

I love my son

I wanted to do something for him. A couple months ago, on a whim, I reached out to a friend who also lives this life and knows what this world is like to boys like mine, like his. I gave him a wish, it was really a prayer though he will be very amused to hear that I sought him out for such a thing. I needed something. Something for those days when I am too dejected or worn down by fragile X to imagine for myself what this life is bringing us too. I wanted something to put in front of my son to show him, “SEE, this is what you are…we see you, we love you, we believe in you.”

 

And so, I thought I should give him an art picture. I gave him a very heartfelt drawing of him and my husband together that says we love him. We will always be there for him. We will survive this life!

A Bit More About This Blog

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.

 

The Challenge

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