April 30, 2012 was the last day of my former life. On May 1st we received a phone call telling us the baby I was carrying had a 1 in 3 chance of having Down syndrome. That meant out of 3 pregnant women with the same prenatal testing results as mine, 1 would have a baby with Down syndrome while the other 2 would not. I was stunned. I was confused. Angry. Scared. Sad. Devastated. Name a negative emotion and it is highly likely I felt that. I cried. A lot. We prayed every day that our baby would not have Down syndrome. That we wouldn’t be the 1.
As you all know, we were the 1. Our baby does have Down syndrome. 365 days ago I thought that meant I was the unlucky one. You know who is unlucky? Those other 2 women who don’t get to experience the overwhelming love I feel when looking into my son’s beautiful almond shaped eyes. Those 2 aren’t lucky enough to be a part of this oh so special club I’m a part of now. They didn’t get the opportunity to “meet” new friends and develop amazing bonds with people who share in a kinship like no other. The other 2 weren’t lucky enough to be shown the world from a totally new perspective. A kinder, gentler, more accepting, less judgmental way of life. The colors that surround my world are more vivid now. My eyes have been opened. I am the lucky one.
I am no longer sad, scared, or angry. Those feelings have been replaced with happy, hopeful, and joyful. This time last year, I was just going through the motions. Now I try to truly live and appreciate this life. My life. The one God has mapped out for me. For us. For my family. Sure, it hasn’t been all peaches and cream. Eli has not had an easy start. But his strength inspires me on a daily basis. I witness his perseverance. He amazes me. I have learned so much from him yet he is only 6 months old. I am so excited for the road ahead of us. Yes, it is the road less traveled – but I am one of the fortunate few who get to go on this journey. Yep, I am the lucky one.
So I’ve been struggling the last few days. I have this overwhelming feeling to pack up my little family and run – run far, far away. That obviously won’t fix anything since I’m pregnant and my worries are all about my baby growing inside me. I feel like I’ve been in denial. Like I’ve just been saying how accepting we are of this whole thing because that’s what everybody wants to hear. I want everyone to see how ok I am with all of this. And most of the time I am. But all of a sudden I’m filled with anxiety and fear again. What if we don’t have all the support we thought we were going to have? What if we can’t afford to provide all the care needed for our baby with special needs? What if…
On the beach last month Chuck and I promised to stay in the moment and not worry about the future so much. In theory, that’s a wonderful idea (and it’s worked thus far), but you can only ignore your fears for the future for so long. At first our fears were centered around the very distant future – Would our son live with us forever? Could he get a job? Get a high school diploma? Go to college? But then we realized we didn’t know anything about our Eli besides the fact that he has Down syndrome. Why worry about things we have no way to predict? We’ll do everything we can for Eli so he has the best possible life, and future. But now my worries are more centered around the next few years. Will he walk? Talk? Be able to feed himself? Will I have a
“toddler” for the next 5+ years??? I adore my oldest son, Cody, but we’re only at the beginning of the toddler stage and it’s challenging! I don’t know if I can do this for a few extra years, or worst yet, forever. I worry about how different our lives are going to be. I like our life now. I don’t want it to change drastically. What will that do to Cody? Will I be able to give him even half the amount of attention he gets now? I want to focus my energy on getting my baby well (he has a suspected heart defect – an ultrasound will either confirm that suspicion or give us great news on July 3rd). How can I focus on one child without taking my focus off the other? I’m sure this is a concern of many moms facing the birth of their second child. And I know it’s normal and obvious that the first child will not get all the attention of the parents anymore. But our case is different than most. What if Eli needs to spend extended time in the NICU at birth? How do we spend time bonding with Eli and keep Cody feeling secure and comforted? We are a very attached family. He’s never spent the night away from us. He’s only been with a babysitter (his Nana or his Grandma) a few times for a few hours. Everyone says how unhealthy that is for all of us but we just like being together. Now I’m scared that he will feel abandoned when Eli arrives.
I remember the overwhelming fear that hit me the night before my scheduled c-section with Cody. We were cuddling with our two dogs and I said to Chuck, “I don’t want our lives to change. I like it the way it is!”. I laugh thinking back to that night because our lives are so much better now! That next morning my heart exploded with love for my new baby. I have never experienced a love so great. I keep trying to remember that. I was fearful of change before Cody’s arrival. I’m fearful of the change that will occur with Eli’s arrival. Will it be different? Of course. But my heart has room for more love.
I’ve heard it said that once you receive this diagnosis for your child you go through a mourning period, grieving the loss of the child you thought you were having. Sadly, I am all too familiar with grief. I know it goes through stages. I know it comes and goes. I will not beat up on myself for going backwards in my grief. I know tomorrow, or next week, or next month my feelings will once again be different. I am so thankful we received Eli’s diagnosis prenatally. Many people have to deal with this roller coaster of emotions all while trying to bond with and care for their baby when they find out at birth that their child has Down syndrome. I can only imagine how difficult that must be. So, I am grateful to be able to go through this now, when Eli is completely unaware. I pray that when he arrives my heart will once again be exploding with love and everything will truly be ok.