June 14th, 1997 was the beginning of a new journey in my life. My son Patrick was born that night. With 20min notice, the Doctors decided it was best to deliver him that night. He entered the world, and the journey began.
Born with an Occipital encephelacele, polydactly (he had an extra baby finger on each hand) and what they refer to as micro genitals, raising a son with Meckel Syndrome sure had its challenges. Meckel Syndrome is rare. So much so, that many doctors, nurses etc. had never heard of it. The reason for that? Most children do not survive. They typically die in utero, during or shortly after birth. It’s a recessive gene and had never been heard of, to any degree of similarity, in either of our families. All the information we could find was discouraging. Reading the material and seeing all the images about Meckel Syndrome made us wonder how long our baby would be with us.
A more recent update within the past year has been that there are now tests for Meckel Syndrome. Within the past year, it has been discovered that my son also carries traits of Joubert Syndrome. Both syndromes fall within the same spectrum and share some genes. Joubert was just ‘discovered’ in 2008. So now when people ask, we are to say he does indeed have Meckel Syndrome and some Joubert traits.
I will tell you though, as difficult as things get sometimes, as frustrating as things can be, I wouldn’t change it for the world. The love, the positive and proud, out-weigh all of that, ten-fold. Raising Patrick has taken me down many roads, all discovering and learning more about him and about myself. I know and understand the daily routines, the appointments, dealing with doctors, nurses, therapists, schools and more, that become a regular part of your life.
Resources, information and advocacy are part of me. Helping families/individuals with disabilities find information for whatever the need may be. Helping to educate everyone on disabilities and accessibility is another key goal. I have completed a Community Advocacy Certificate through Lambton College a couple years ago as well.
Singing has been a big part of my life as well. I love to sing and truly miss singing with a live band. In the meantime, to help keep vocals loose, you’ll find me doing the odd event and attending karaoke from time to time.
My sign language isn’t what it used to be, but I do know some and use some since my son uses it along with his DynaVox to communicate.
I would love to do more public speaking! Perhaps opportunities will arise in the future. 🙂
I hope you enjoy coming along our journey with us and we hope you understand a little more and learn more about the daily life of…..’us’ ! 🙂
To read more…stay tuned and/or click here!