The Unintentionally Oblivious...will they ever get it?

So, as some of you may know, December is TTTS Awareness month. It's always a time when some TTTS groups on social media seem to be very active, heavily bombarded with messages and photos, just a very active presence of many members.

Half of the groups I belong to are strictly for those who have lost one or both of their twins. The other two groups are for general support.

This week in a group that I'm a member of, though not a group I help with or am very active or involved in, there seems to be a huge bombardment a photos of survivors. And I get it. I get that in this month of awareness we want to celebrate those who successfully fought this battle and won.

But looking at those photos bothered me. Not that it bothers me to see photos of survivors, not at all. It bothered me that in this group that should be there to support everyone, there was this huge presence of healthy living children and a large gap of stories and photo tributes about/for babies who did not win their fight. And so I posted this photo that I created and this post.

This is a photo tribute to my boys Cameron and Cole. Cameron blesses us with his energy, zest for life and deep emotions daily. Cole watches over us from above and is always with us, guiding us, motivating and inspiring us.

I've been thinking about what to post in this group all day. It's been sitting heavy in my heart because there are members of this group who have no photos to share, have no survivors to celebrate. It's the side of TTTS that all too often is overlooked and perhaps even kept from the newly diagnosed and that's such an injustice, so unhelpful in my opinion.

We need to celebrate that we made it through this hellish journey and found joy again, found hope again, made forever friends, found a side of ourselves we didn't know we had. We need to celebrate that we survived!

All of us...no matter what our outcome is and if we have photos to share or not.

    And it was well-received, with some supportive comments. I had really hoped that it would make people think about posting more photo and encourage more people who lost to post something.

But the photos continued to fill this group and very few of them were photos of just one survivor. They just seemed so oblivious of the hurt that these photos can cause, of the divide they create between those who 'won' and those who 'lost'.

And so I posted this post

Today I'd like to encourage those with a TTTS angel, a child who lost their fight to this dreadful disorder, to please share a tribute photo to them. They deserve to be honored and celebrated too!

with these pictures 

         

in hopes that other families who had lost one of their or both of their babes would share and celebrate the journey that they had taken. It received about half of the likes and reactions that some of the other posts received and no one followed suit.

Now don't get me wrong, there were a few posts from people who had one survivor but no one seemed to want to post any sort of tribute to their baby in heaven. And it really made me think about it. Why are we reluctant to share this? Why are so many people so eager to share photos of their healthy living children, so eager that the posts that have to do with loss seem to be pushed further and further down the wall?

And I think I figured out something.  For so many who have suffered a loss feeling welcome can be hard.  Reminders of what could have been, what should have been, are really hard to handle at times.  When you don't feel comfortable or even welcome then you tend to retreat.  And so what I realized about this group and a few others I've been in over the years....there aren't very many loss families there. They left. They don't feel welcome, supported, like they have a purpose. 

And that is not okay. We need those stories, we need that reality. We need to share all the outcomes so that people are prepared for what can happen.

And so I will continue to do what I do. I will share both of my children and I will share our story over and over and over again. Hopefully someone who reads it will feel a lot less alone. And hopefully by sharing my story and being present in the groups where 'the oblivious' are present they will start to think about what they can do to help everyone.