Tuesday, June 4, 2013

I'm not sure where to start with this post, but I'm hoping that by finally just starting that it will take me somewhere. I haven't written in so long, and it's not for lack of trying - that's for sure, as I've got handfuls of unpublished/unfinished posts - but life kind of gets in the way. Sure, it's partly because I'm mothering two infants and a toddler (enough said), but it goes beyond that. There is something in me that is preventing me from expressing myself, or from taking joy in writing about the things in life that I am happy about. I'm stuck in a rut, and I think that it's because I've somehow managed to close myself off to my own grief and I'm now choking the life out of the other parts of my life that are good and happy.

On a daily basis, I share in the grief of other bereaved parents. The time I spend on the internet while pumping is spent reading stories from other loss parents, relating to their feelings, learning from their grieving processes, finding new support groups and websites. I also spend copious amounts of 'pumping time' researching and trying to put pieces together surrounding our angel - TTTS, our placentation, whether we actually could have been an identical triplet pregnancy, whether we actually lost our recipient or our singleton, whether doctors had it wrong. I still don't feel like we have all the information, and it's starting to eat at me. I am obsessed. I need this now for closure. Even though our outcome won't change, and even if we get no further than we are now or end up with the same results we've already gotten, I need to try because something just doesn't feel right and it never has. I just became so preoccupied with balancing our babes in the NICU and some sense of a home life, that I let this fall to the way side with the intention of picking it up again. Now is the time. I owe it to Jude, and to my sanity, to make sure that I know as much as possible about what happened, or at least just know that what I already do know is ALL there is to know. I would be ok just knowing that, too.

I have been in touch with a few amazing, intelligent people who will guide me along this part of our journey, and my next step is obtaining medical records from my pregnancy (ultrasound reports, surgery reports, amniocentesis results, cause of death for Jude, placenta pathology reports). This sounds messy and stressful, but I need to do it. I had always intended on doing this, but what triggered it for me to pick it back up again was going through what little paper reports I'd already had. I was trying to organize a binder to keep all of this stuff in, when I read through my laser surgery reports and noticed several GIGANTIC inconsistencies that I'd never noticed before, with what the surgeons were saying, and what doctors at home were saying. They aren't the kind on inconsistencies that we could have picked up on before losing one heartbeat. There's no way to tell whether we would have lost Jude regardless, or perhaps we would have lost Nash, or even Lincoln or both or all three, but these inconsistencies could have been life changing in some shape or form. I just need someone to go through them and put a story together. To re-describe the events of my pregnancy to me in order, after interpreting all of our information. I am both nervous, and looking forward to this process. I believe it is entirely necessary for my grieving and healing and continuing to live life.

In some spare moments, I also dream about the things I can do to remember Jude. For one, I have no birth/death certificate, or even a notice of still birth for him. I would like to get these things. But more than this, there is an intense desire to do things for other loss parents in honour of him. I have a few ideas, though it's something I will need to start making the time for. I have intentions of using my design skills to create announcements or certificates of life for TTTS angel babies. I also have been thinking about creating little rain cloud mobiles for angel babies, sharing the message that I feel so appropriately symbolizes my relationship with Jude - 'Sky is grey, but I'm dancing in the rain'. Becoming a local leader in recognizing 'Return to Zero' - a movie that sheds light on the world of stillbirth and infant loss, working it's way into theatres one person at a time. I want to take part in several projects, like those found on Carly Marie. In the meantime I feel like I am honouring Jude by being a verbal supporter to loss parents in several groups, and also by supporting and loving those in my life who are expecting babies of their own.

I am so desperately hopeful that by fulfilling these desires to try and solve what we can of Jude's death, I will be giving myself a new lease on life. That I can finally stop thinking about what happened, whether the right answer is out there somewhere, accept the fact that his life was only ever meant to be lived within me. Finally stop spending precious spare moments trying to learn even more about the disease that killed my son, even though he's already gone.

The absolute hardest part of all of this is knowing that our Jude was perfect and healthy and would have otherwise been born this way to live a completely normal life had it not been for such a horrific placental defect. I am angry that his placenta failed him, and angry that such a senseless disease even exists. I am angry that at times it feels like our story makes absolutely no sense, and I get frustrated not knowing for certain whether what I am saying is actually accurate. I am angry that so many of us feel that we have been promised life when becoming pregnant, only to have it stolen away again before we are ready (we are never ready).

I am equally terrified and looking forward to whatever the next few weeks and months will bring as I get deeper into our story. Aside from the anxiety that comes from all this, I am eternally thankful for those of you who have walked beside us on this journey, and for those who will continue to, in honour and memory of our baby Jude.

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