Advent Challenge Day 7 - Burn

Write about a time when you were burned

So this whole photo and writing challenge is based off something I found online from 2015. The challenge had all the days laid out and I only needed to change a few themes to suit my purposes a bit more and also changed the order of a few days to reflect things that I knew would be happening in my life (like the anniversaries we will ‘celebrate’ next week).  This theme of being burned was actually for December 11 I think and I knew that day needed to have a different theme given that it is the beginning of the anniversary of life changing forever.  So I had to move it to a different day.  I knew immediately when I saw the theme what I wanted to write about because, as it relates to this time of year and to coping with the loss of Cole, it's most definitely what I’ve been burned about the most.  I debated a lot about whether this was the right idea for this day, December 7th, but ultimately this seemed to be most fitting.

For those in the TTTS community the significance of December 7th varies.  It's a ‘self-proclaimed’ awareness day and part of TTTS awareness month.  While I think awareness months are, in and of themselves, a good idea, I don’t really believe we need an awareness day or month to spread awareness.  Like all awareness months, there is a focus on donating, in fundraising during this month.  Perhaps this is where my ears go up, my teeth clench and I begin to feel less than supportive of this awareness.

You see, International TTTS Awareness month, December, and World TTTS Awareness day, today, were founded by the founder of the Twin to Twin Transfusion Syndrome Foundation. Back almost 9 years ago, in the aftermath of our diagnosis, surgery and loss, I reached out to the TTTS Foundation. A few days later I received an email from their founder and it left me with, I don't know, an unsettled feeling. It wasn't that I felt like the person writing me wasn't sincere but I felt like there was so many unresolved issues for this person. It left me feeling with more questions than answers, like I was more unsettled. It almost felt like it was an outlet for her for her anger and dissatisfaction with her own medical team instead of helping those in the most need, in the middle of a crisis, get the support and answers they needed. At the time I asked what resources they had available as we really been given very little from Mt. Sinai. I was promised a variety of packages to help me understand what we just gone through and to help me in coping with the remainder of the pregnancy, the loss and the delivery. Sadly, those packages never arrived.

I did meet some very amazing people through the support that was offered on this foundation’s message boards as well as their Facebook page. I'm not sure how I would have made it through those horrible, dark and confusing times without the support of these people as well as people I met through what is now known as The Fetal Health Foundation.

For those who know me well, you know that I'm passionate about supporting others going through TTTS. Right from the beginning I felt a calling to do this and I was a very present member of the support groups. Initially I most definitely was on the receiving end of the support rather than the offering end. But as time went on, as I learned to cope, I began to offer more and more support to others. At the time, sharing my story was a way to share Cole, a way to keep him ever present in my life. My emotions were still relatively raw, still relatively new and I didn't always use the best filter when I was offering support to the newly diagnosed parents. It's not that I was brutal, it's not that I was harsh, but I just came out and shared my reality without any lead up, without any introduction.

Eventually I begin to notice the posts and comments like the ones I was sharing, the ones involving ‘the worst case scenarios’ seemed to disappear. They weren't always deleted but they were often pushed down further into a thread so they weren't as evident. A number of loss parents, like myself, began to see this and also began to see that there was a strong desire to have only positive stories shared, to have only double survivors shown in photos. Parents whose twins both survived felt only ‘positive’ stories should be shared but loss parents, who had been blindsided and unprepared for what became their reality, wanted to help prepare the newly diagnosed. When we complained to both the founder of the group as well as to the group in general we were basically told that we needed to find our own place to post about our children who are no longer with us. This hurt. It made us feel unwanted, rejected, and like we and our children didn't matter.

We expected the founder to step in with words of support and encouragement towards us loss parents since she is a loss mom herself. Strangely that didn't happen at all, she was notably absent from what became a definite bickerfest. Eventually I got a personal message from her asking me if this is how I wanted my son's memory to live on, if it was how I wanted my son to be remembered, through bickering and negative comments back and forth between parents And while I didn't want Cole’s ‘legacy’ to be surrounded by negativity, I also knew that his story was worth sharing, my story was with sharing, our story was worth sharing. There was so much to be learned from my situation because it wasn't typical whatsoever for TTTS.

And so a group of us started our own support group where we welcomed everyone. We welcomed their stories, we welcomed their experiences, and we limited photos as much as possible. For a while the two groups coexisted. There didn't seem to be too many problems except I did notice that anytime someone posted a link to our group it was immediately deleted by the only person who could delete it, the founder of that Foundation. It became apparent that she wanted no one to share an alliance and we soon found out that she also rejected anyone’s suggestions or help.  It was almost as if she felt she ‘owned’ anything to do with TTTS.

And then one day it all came to a head. A member of my group acquired tax documents for that foundation, a not for profit foundation whose income relied solely on donations, mostly from parents of TTTS survivors and family members of those babes who lost their fight and donated in their memory. My jaw hit the floor when I realized how they were run financially. At almost 70% of the donations that were taken in being turned around into the salary of the founder (which essentially meant she raised funds to pay herself and not to actually help those in need with added expenses), something felt really wrong to me. And I wasn't the only one, many others felt the same way. We discussed it in the group, probably not our best move, and within minutes, not even kidding, we were all kicked out of the foundation’s group. And not just kicked out, but banned and unable to even find the group. Over the next months and even years we discovered that anyone who aligned themselves with us, who showed any affiliation with us as a group as well as with the foundation partner that we had become part of, The Fetal Health Foundation, was also banned from her group. She even went as far as to ensure that the word Fetal (as in Fetal Health Foundation) and the name Lonnie (Fetal Health's founder) would appear as symbols, as swear words almost, on her foundation’s site’s message boards.  

I'm not going to deny that I said and did some things at that point that weren't of the character that I now possess, but ultimately my heart was always in the right place and my desire to help was rejected.  When all you want to do is help, when your passion is ensuring that other families don't walk down the path in the same manner that you did and when you feel it's a calling , being removed from a place where you can offer this support definitely makes you feel burned. My presence in the TTTS world as I’d known it back in the beginning of our journey had gone up in flames.  

Now I just want to add, for those who don't know, I've managed to make my way into the world of TTTS support with needing any of the connections I had with the TTTS Foundation.  Our TTTS support group has a few thousand members and is an active and amazing place.  I am closely connected to The Fetal Health Foundation and work with them frequently.  I even get 'referrals' for support from Dr. Ryan at Mt. Sinai (how cool is that!!!!) I also am very involved in a support group for mono di twins with a large emphasis there on support for pregnant moms.  Because we have these moms in our group early in their pregnancy, we quickly connect with them when TTTS is diagnosed, sometimes we're the front line in getting them help in time.  Just before the American Thanksgiving a woman posted in our group and said she'd been diagnosed the day before with stage 3 TTTS, the same stage as my boys had, and was being sent after Thanksgiving to Ann Arbor for possible surgery.  I knew right away this wasn't soon enough... if we'd waited that long both my boys would have died....and I suggested she get seen somewhere else ASAP.  I'm delighted to say she welcomed my advice and through knowledge I had, research online, support from the group and the grace of God, she went to Cincinnati the next day and had surgery the following day... 3 days prior to when Ann Arbor was even going to see her.  That's just one example of where I haven't let this experience of being burned and pushed away interfere with what I truly feel is a calling.