When we venture out to travel or make the decision to bring life into the world, we face a vast unknown. We hope for the best, and plan for the worst. We face obstacles and challenges and try our best to enjoy the ride. We keep our children close to us and safe and protect and love them with all that we can.
Although my husband and I are not religious, today on Christmas, I am taking the quiet time to reflect on the joys and blessings in our life, and to enjoy what I have and what life has given us. On Thursday during a routine ultrasound we were given the news that our baby boy we are expecting is not going to make it into this world on his own. He is 19 weeks gestation and has severe trisomy 13 with heart, brain, and kidney defects which will not allow him to survive outside of me. He was sadly never meant to be; random errors were made when cells were dividing and his DNA was being programmed in the very beginning of his existence.
Trisomy 13 is a completely random chromosomal problem, and every woman has a 1 in 10,000 chance of having a baby with trisomy 13. There’s nothing that causes it, and nothing to do to prevent it. The thirteenth chromosome just randomly doubled when the sperm and egg met- so there are three of the 13th chromosome instead of the normal two like everything else. We have a 1% chance of it happening in a subsequent pregnancy, and will remain low-risk in a future pregnancy. Basically, it was just really bad luck.
We had named our baby “Aksa” a few weeks ago when we found out that he was a boy. Aksa befittingly means “soul” in Sanskrit. We have had the pleasure of enjoying the existence of our little Aksa for over four months from late August through now, as he has traveled with us in my growing belly to Jordan, Lebanon, South Africa, and back to Chicago. Recently I have been able to feel his little movements, especially when his older sister is laying across my belly, and we got to see him bouncing around with his little toes and fingers on ultrasound.
Since Aksa’s soul was not blessed with the physical body that will allow him to continue on his journey in life with us, we are devastated to have to liberate him from his non-functioning body, but we have no choice but to accept his cruel fate and allow him the peace that he will not find in this world. As we prepare this week to let his little soul free, it is extremely challenging to continue staying positive with a broken heart. This certainly was not part of our plan for baby.
So today, as we spend a quiet day in our home together as a family, I am going to focus on our blessings. We have a beautiful healthy one year old little girl that lights up our life every day with her infectious joy. We’ve had the absolute joy and excitement that expecting parents have with the anticipation of our baby, Aksa. I have a wonderful, supportive, and committed husband and partner who is the best father for my children I could ever hope for. For the next few days that I am fortunate enough to spend with Aksa that is still very much a part of me, I will cherish every small movement I feel. I am honored to be his mother.
Aksa won’t be continuing his journey through life with us, but he is very much a part of our family already, and will always continue to be part of our family as our little baby boy. His soul will travel with us wherever we go, and I will take with me images of his tiny little feet and toes, and the happy image of the smiling inquisitive little boy that I had dreamed he would turn into. As we go through the process of loss and grieving as we let our loved baby Aksa go, we will continue on our journey and travels with thoughts of his little footsteps in tow. In the meantime as his physical journey parts with ours, I have hope that his soul will travel back to us in some form or another.
Today, and every day as we journey through life, is an opportunity to celebrate the life and moments we are blessed with and to also celebrate and remember the lives and moments we have lost.