The "May We All Heal" project was created in 2015 by the Grieving Parents Support Network as a way to actively focus on healing during the month of May. There is a prompt for each day to focus on an you can write, draw, or do anything creative to respond to the prompt. You are encouraged to share your response if you are comfortable, as this helps combat isolation and help end the silence around child loss. Learn more here: https://grievingparents.net/may-we-all-heal/.
I think this event is a great way to share our stories and gather support, as well as be in community with other loss parents. Last year I participated by posting on Facebook, but became very overwhelmed by posting daily, as the prompts bring up a lot of emotions. This year I am participating by, when I am able, sitting down and answering several of the prompts at a time. I think this will help me the most. As tomorrow is International Bereaved Mother's Day, I thought it was a good night to start.
May 1st: At the Beginning
When I think of the beginning of my journey with Mira, all I think of is innocence. I was aware that miscarriages, birth defects, stillbirth, and infant death happened. I had no idea how common they were. I had no idea the pain that a mother suffers if she goes through them. I was certainly empathetic, I assumed it was the worst pain in the world. But I really didn't have a clue. I finally got my positive pregnancy test in May 2017, after hoping for it for 9 months. Nine months is fairly average for trying to conceive your first child, but oh my, it felt like forever. The joy I felt at the positive test is unexplainable. I thought the hard part was over. I mean I was perfectly aware of the fact that childbirth and raising a child would be very challenging and difficult, but the fear of not being able to have a child was gone! There was so much relief. In fact, I often think of a conversation I had with a friend before Joe and I starting trying to have a child. She was telling me about her sister who was struggling with infertility and I, of course, said I would be praying for her. I empathized deeply, not being able to have children was always one of me fears. I was healthy and there was no indication there would be a problem, but I wanted to be a mother SO badly, that I had an underlying fear of it not happening. I remember saying, "I am so sorry for what your sister is going through, I honestly don't think I could handle it if I struggled to get pregnant." Oh, how ironic. I never thought to fear my child dying! Everyone thinks that could never happen to them.
That innocence is gone now. So very gone. I have had to face that and accept it more than ever that last few months. With the time here that Joe and I, medically, could chose to try to have another child, the fear that we could lose another child is huge. Thinking about having another baby is now longer a beautiful dream, it is full of fear and unknowns. If we do have another child, the positive test will mean joy of course, but also crippling fear. I struggle with this fear when others are pregnant as well. Other's pregnancy announcements are very difficult for me. Most people probably assume it is because I am jealous, but I can honestly say that is not true. I don't feel jealous of others when they are pregnant. That is a common, and perfectly understandable, reaction of many loss moms, it just doesn't happen to be one of my struggles (though I have many of my own!). No, I struggle with hearing/seeing pregnancy announcements, especial from those I know well, because I am TERRIFIED for them. I know what can go wrong. I know my own story and hundreds of other loss mom's stories. When I see groups of pregnant women of certain numbers, I am so conscious statistically likelihood that one of them will lose their child. I don't want my friend to know this pain. I am terrified they may. So when I hear a pregnancy announcement, I hear that my friend to open to facing this pain, and I am scared for them. I have to actively work to make sure I don't start spilling out statistics and facts about child loss to help try to "save" them.
So at the beginning, it was good. It was joyous. Mostly, it was innocence that has forever changed.
May 2nd: Life & Death
Mira's life outside of my womb totaled 53 minutes. Her death came quietly and peacefully. It all happened on December 18, 2017. I have written out my birth story before, and covered all the amazing and heart breaking parts of the day. The most surreal part of carrying a child to term with a fatal diagnosis (in my opinion) is that you are preparing for their life and death at the same time. This is so utterly unique in a completely heartbreaking way. I planned to her hospital outfit for pictures like any other mom, but also planned her outfit for cremation. I called HR to set up a maternity leave and asked about the possibility of adding my unborn child to my life insurance at the same time to attempt to find ways to cover funeral expenses. (You can't by the way, the child must be discharge for the hospital alive to go on life insurance, which is why the cost of infant funerals are such a problem for families, especially considering no one wants to think about money during such a tragedy. This often leads to parents having to chose to have their child buried at the hospital or in group infant burials with no tombstone. Which is whole different kind of tragedy, but I'll save that speech for another time.)
Life and death are always tied together, but you realize it so much more deeply when the count down to your child's birth is also the count down to their death.
May 3rd: Responsibility
What was responsible for Mira's death? I don't know. I hate that, but I don't know. I know it was severe hydrocephalus, and spinal cord defects, and a hole in her heart, and polycystic kidneys and on and on and on. But no one can tell us what was responsible for all those anomalies. We have been assured time and time again that nothing I did during and before pregnancy could have caused or prevented any of these issues. All the extensive testing came back fine. No genes found to blame. So what was responsible? I don't know. That means I don't get to give the thing that took my daughter from me a name. I HATE that. I want a name. I want an awareness ribbon and research in the name of the cause. But I do not get that. I also do not have a way to prevent it from happening again or a way to know how likely it is to happen again. When there is no responsibility to be given, where do you go from there? Well for me, it is staying in contact with both our genetic counselors who patiently answer all my questions help me understand the research and talk me back down when someone, thinking they are smarter than my doctors, tells me "folate is the answer" or "it is this brand, no this brand, no this brand of prenatals you must take." It is leaning into the vague hope you are given that it is "unlikely" this could happen again, even though there are so, so, so many other things that could go wrong. How do you take responsibility for the safety of a child in your womb when so much it out of your control?
May 4th: Me - You
Oh, my sweet Mira, she looked so much like me. She really did! I think we would have been alike. She loved when I read, and she loved when I played music, my two favorite things. She loved the puppy laying on her. She was stubborn (which I think anyone will probably accuse me of being as well!) for all the ultrasound techs. She slept in my womb with her little hand next to her face, as I always do. Me and you would have been so close my sweet girl. Me and you would have had such a beautiful life together.
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