Today I received a message from a facebook friend that reminded me of many things I have promised myself, many things I have dreamt would come from the loss of my son and of just how important it is to live for the living.
Last week on my low day I had sent a 'mass' message out to some friends who've been in my shoes with their twins. I did it for a few reasons...I needed their support, I wanted to bounce my feelings about Cameron and his survival off of them and I was hoping for some great words of wisdom to be shared with the whole group...some of these mom's are so amazing!
But what I never gave any thought to was what if someone didn't want these messages, what if when I include people in a mass message it actually sends them backwards and makes them regress in their recovery from grief. What if they really don't want to hear what the rest have to say.
And that is what I discovered today but I am so glad I discovered this (though sad that I might have upset anyone) because it has evoked some serious thoughts in my moving forward plan..and what's not helping but this friend also gave me some things to think about when it comes to Cole and how we remember him...but that will come later in this entry.
Moving forward for me has always been the goal of this blog. Sometimes it works, sometimes it doesn't. But most often it makes me feel better. Facebook is different though...it can be so awesome for me to connect with other TTTS families and it feels great to help and support those that need it. But sometimes it evokes horrible feelings...intense sadness when one of my fb friends is having a bad 'twin' day, anger when I read about those who never really battled much and yet talk about it all being a miracle (I know that sounds petty but you have to read their writings or maybe just be in some of our shoes to understand how hard it is to hear from someone who never needed any treatment and went almost full term and talks about it being a hardship and a medical miracle) and jealousy too at those who have both babes survive. I have 57 connections on facebook of moms and a few dads who've been affected by TTTS plus a few families who weren't but connected with me over similarities in our twin pregnancies. That is crazy...so many affected by such a 'rare' disease. I am glad I have those connections though sad we have this disease in common. But talking over and over with them about grief...well it isn't helping...not most of the time anyway. I want to keep them all as friends but it is time to stop talking about our loss and start focusing on our gain...the wonderful miracle that is Cameron, the wonderful miracle that is Mt. Sinai and Dr. Ryan even the wonderful gain that is meeting all the amazing people that I have...the friends who have this in common, the friends I made in antenatal, the amazing medical staff that have cared for us. That's what this is for, that's why I do this. Helping is great as long as it helps both parties...and if I am pulling someone else down or pulling myself down by tripping down memory lane all the time in sadness, well what is that point of that!!!
One fb friend sent a message that I am going summerize....
My identity as my sons' (yes both of them) mother cannot be in the loss of Cole , but in the life that they both had/have that I gave to them. I will always be Cole's mother, but I am Cameron (and Zack and Brycen)'s mother too and it isn't fair for them to have a mommy who can't get over the loss of their brother. That isn't a healthy way for them to grow up. I have never wanted them to remember their brother with sadness, the remember this journey with sadness and I have never wanted people to think of me as 'that mom who lost one of her twins and never got over it'.
A few weeks ago my friend Tracey wrote a note about her late husband (incidentally my 2nd cousin) who passed away 7 years ago. In it she mentioned an article that was in McLean's (i think) about a father who is told he is dying of terminal cancer and he decides to find 7 men to help raise his child with the qualities he wants in a dad. One of things that one of them says to him is about how they will help his child remember him...
"When you lose someone, the loss becomes the dominant memory. You have to build a rival memory. We went here and did this... take the negative pain and create a positive side to it."
My kids need a rival memory.... Cameron most of all. He needs to know his brother as the positive little person he was...of the person who evoked change in the world by inspiring others (okay his mom anyway) to be a better person.
I've made some huge gains in the last few days here... and my dream of a future that has more support out there for families suffering with fetal distress disorders and of raising funds for such support and for treatment...at a national level...well it's taking off...in leaps and bounds. And as my friend Tammy says..
making a difference in other families lives because of what has happened, though it can have its difficult moments, in the end it makes us feel like our angel's life wasn't a waste. Sad does not have to define us as such.
And I need to make sure that everyone, especially Cameron and his brothers have rival memories...they are going to remember the sad times because there will always be some that will creep in here and there. But good memories... the amazing $900 Zack raised in honour of Cameron and in memory of Cole, the fact that they have twin brothers (or a twin in Cameron's case)...that is amazing...so few can say that.
Sure it would be better to have both boys here in my house instead of just in my heart but as this fb friend's message pointed out... At the end of the day, I have to be satisfied with having "just him," but in all honesty I am just so honoured that God has blessed me to be these little boys' mommy. I am so very blessed and can I can smile when I remember Cole's soft kicks, his punches and kicks at Cameron, his shyness to show us 'the goods'; keeping his identity and name unknown for so long, his ever-active moves...he was the busy one!!! I will never forget the feelings I had telling the world I was pregnant with identical twins, not many women get this blessing and I'm proud to say I was one of them.
Thanks Jen for the gentle push to remember and honour Cole the right way and to be so very joyful for the blessings I have!