So today is World TTTS Awareness Day. It was started by one individual who walked through TTTS and felt a very strong desire to help others through this terrible disease. I believe, but I may not be correct, that it is the birthday of her twins... One who celebrates here on Earth and one who celebrates in heaven.
And I respect this day, I respect the month of awareness that she has created and the desire for awareness to be spread.
Personally, however, I won't reserve my spreading of awareness to one day or even one month. This disease affects lives every single day. There's much that has been learned, especially in the last five years, about this disease but there's still much to be learned. While the doctor’s who treat it are often actively researching, attempting new procedures, working together to improve surgical methods and diagnostic testing, it’s the parents who’ve struggled through it, who’ve worried, cried and mourned, who can push for things to improve with a passion no doctor can even really, truly, understand. And it's those parents who can impact the lives of the yet undiagnosed, the future babies. Those parents are passionate and they're part of communities where mono di parents hang out. They run support groups online with parents who just found out that they are expecting mono di twins. Those parents are sponges, wanting to know everything they need to know, wanting to be the best advocates they can for their unborn babies. And that's where a parent who has been down this path can really make an impact but that can only happen if they're actively spreading awareness all year round. Some of my closest online friends, and I guess myself included, are incredibly passionate about learning what we can and sharing what we know. We reach out to doctors to learn information and in turn share that information with the rest of the TTTS community and many of us even share bits of information that we've learned with the doctors we are close with who were part of our own team.
We share the research, we share statistics on certain doctors and certain treatment centres so that those who are newly diagnosed are going to the right place, the best place, to help save their babies. We are passionate about saving babies and that passion exists 365 days of the year.
But TTTS Awareness Day or month and even those 365 days of the year that many of us are passionate about, cannot be just about awareness for those newly diagnosed or those to be diagnosed in the future. It also has to be about creating an awareness that support is available. It has to be about creating an awareness that you are not alone. There must be an awareness shared that you will get through this and that these new online friends will walk this path beside you.
So make those 365 days count. Walk through each day beside someone who needs your help. Walk each day in honour of your children. Take the steps that maybe they didn’t get to take through this amazing way of honouring them.
That is what awareness encompasses to me.
If you would like to make a difference in TTTS support in Canada or in fetal interventions across our entire country...or just want to offer my family your support, love and help us honour our sweet heavenly son, please consider donating to our annual event. We will be traveling to Toronto on Cole's heavenly birthday, Friday, to make a presentation to Dr Ryan and we'd love to include YOU in this presentation.
https://mountsinaihospitalfdn.akaraisin.com/PersonalPages/Participant/Home.aspx?seid=6777&pid=2985485&mid=66#.XYKZB2mRqGM.facebook
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