Maya Journey: Glorious
I have been looking forward to writing this post for 4 months now. Our social worker extraordinaire captained a continuing education conference aimed for those who provide direct patient care in prenatal pediatrics and she asked me if I would be willing to tell Maya's story. I was all..."uhhhhh yeaaaaaaaahhhhhhh! doy." And then I pondered and ruminated about it for those 4 months until yesterday afternoon...no biggie.
One thing I have heard a couple times when talking about love, life and the grief that comes with losing a child, is the phrase "I can't even imagine." Maya's diagnosis, depending on where you read, is rare enough to show up once in every 8000 pregnancies and so I was thrilled to share a little bit about our family's experience the past 18 months or so to give a glimpse of the unimaginable.
It was an epic saga of our complicated relationship with hope, the intense feelings that come with loving a tiny person you give birth to and what it means to be broken.
The past couple weeks, leading up to this talk I tried to fight the good fight that you have to fight, when you are about to be a part of some good in the world. I think about the battle that goes on that we can't see, the one with angels whispering and inspiring for good and the darker influence of the adversary and his 'pinched minions' trying to convince us that we can't change, we aren't good enough and that you should just give up....right now, pretty sure there is some hissing and cussing and it's like not...fun. So I was asking myself why I felt so uninspired, down and oppressed....Lightbulb! At this point I realized that is what was happening and thought "Get away from me turd faces!!!!!" or if you want you can get biblical and say "Get thee behind me Satan!"
Either way if you start shouting at unseen beings to get away from you....EVERYONE will give you your space...not just the unseen:)
So the day finally arrived and I was given the opportunity to speak at the general session about my baby girl and rascal family for 45 minutes. All of those minutes my hand would not stop shaking...just click the button on the mouse to change the slide on the powerpoint! Do what you're told hand! It was an honor for me that I will hold dear forever. Nate took the day off of work and gave me a pep talk the entire drive to the hospital (also 45 minutes and not the first pep talk) while I stared blankly in a major nervous freak out.
Me and my rock:)
There was a lot of love in that auditorium and I do not doubt that Maya was in attendance. At one point I wanted to make sure the audience was OK because there was so....much....sniffling. All I could say was "hang in there guys, it's gonna get better..." Our social worker had a specific job to signal to me when I had 7 minutes left...yeah she was totally useless to me now, I knew I was probably out of time but she was just sitting there crying...you had one job! hahahaha.
I talked about the ups and downs that came with a diagnosis of that nature, making plans that are really out of your control, celebrating the little things, the value of pain and suffering and that we all need hope.
When I finished my talk, I felt so much peace and I'm not sure I have felt it so strongly before, I so welcomed it. In times that to me can feel pretty dark and dreary, I felt like I got to be a part of some good in the world. I could really relate to this song (that I may or may not have listened to 1000 times):
What I really want to share with you is a video I put together about our life with Maya. Be warned, you might feel things, and it is possible that water will come out yo face.
As we prepared and planned and prepared and planned and tried to strategize Maya's birth and potentially what could be only a few moments of her life, it was our dream and highest goal to be able to have her big brothers get a chance to meet their little sister. Enjoy.
So here's to hope in a sometimes dark and dreary world.
Much love and more next time.
