It took a while for us to get pregnant with our daughter, Delainie. Not as long as it takes for some people, but it seemed long to us. In May of 2011, we welcomed our beautiful girl, Delainie, into this crazy world. Little did we know what that life would look like. Sure, we dreamed and had visions of our life prior to her birth, but once she arrived, all of that went out the window and we were in survival mode with her medical complexities.
With her special needs and medical fragility, we planned that she would be an only child. We had no desire to add to our perfect little trinity. We loved our life, complex and scary as it was, we loved it with every breath we took. We were so caught up in that love, we never saw Delainie’s death coming. It happened so quickly, ironically, when we got comfortable living in the uncertainty of this life.
Not long after her death, I knew I wanted another child. I felt it with every fiber of my being. I wasn’t done being a Mommy. We considered in vitro, but, after talking to doctors, it appeared that it would be highly unlikely to give birth to another child with Delainie’s chromosomal anomaly. What would be likely, is that we would miscarry a child with Delainie’s chromosomal anomaly. And, that seemed pale in comparison to what we had just gone through, so we thought we could handle the risk.
In May of 2016, we were expecting! It was so exciting, because it didn’t take as long as it did the first time. Shortly after finding out we were pregnant, I started bleeding. It was Delainie’s birthday. The first birthday since her death. I was a basket case. How could I be losing the baby on that day of all days?? I went to the doctor, he said it was too soon to tell, but it looked like cervical bleeding, which was not unusual.
We celebrated Delainie’s birthday with our friends and family, flying kites and using bubble machines to put on a little earthly razzle dazzle for her heavenly enjoyment. A few days later, I knew that I was not going to get to keep this new baby. I was miscarrying. I woke up in the morning, turned to my husband and told him that I thought I was losing the baby. We cried for a few minutes, and then we got up and went on about the day. It was Memorial Day Weekend, we made side dishes and attended our annual Memorial Day party.
I was sad, sure. But, not devastated by the loss. I understood that my body was not allowing this baby to come into the world because he/she wasn’t going to be prepared to handle the world. And, I was okay with that. Losing a pregnancy at 6 weeks, for me, was nothing in comparison to losing my 4 1/2 year old child.
I went to the doctor, who confirmed the miscarriage, and I asked, “can I go on vacation at the end of the week”? She said, “yes, do as you feel able to do”. I told her that I just wanted to put this in my rearview mirror and move forward. I wasn’t stuffing my feelings down, I wasn’t denying the gravity of my loss. My perspective on the loss was just different from what most people might experience. It was pale in comparison to the loss I experienced with losing Delainie. I was still grieving that loss, and would be for the rest of my life. I had no room in my heart to add grieving for the loss of my pregnancy and truly, no desire to give it that much attention.
I went on vacation, enjoyed that time with girlfriends and I felt good. When I got home, my husband and I discussed that we would consider in vitro for any future attempts at growing our family. The process of invitro is grueling! After going through the initial work ups and testing, we were ready to schedule the start of the procedure. But, not surprising, we found out that insurance would not cover it after all. Thousands of dollars for something that was not guaranteed. My body and my mind and our wallet would go through the rigorous process of invitro and we had no clue if we would end up with a child at the end of it.
So, back to the drawing board.
We decided, since it seemed that the possibility of having another child with an unbalanced translocation was minute, that we would give spontaneous conception a try again. When we found out we were pregnant this time, there was a lot of fear for miscarriage. As the weeks went on, my heart started to swell with excitement. We knew we would opt for prenatal blood work. We wanted to know if this baby, though unlikely, had the same genetic issue Delainie had.
The good news was that there was no indication that the baby would have an unbalanced chromosome.
The news we didn’t exactly expect, was that the baby had a very high likelihood of Down syndrome.
I was beside myself. I did not think I was strong enough to be the parent of a second child with special needs and medical complexity. I couldn’t bear to worry about my child dying due to medical issues nor could I survive living in hospitals again. I was scared.
I wondered what I had done to deserve this diagnosis. Why would God punish us and make us live through fears of losing another child or God forbid, let us lose another child?
My husband, an extraordinary man, said, “Maybe it isn’t about what we did wrong, but everything we did right…that’s why He is giving us this child”. And, in that moment, I fell in love with my amazing husband all over again. I knew he was a better human being than I could ever be and I was blessed with him by my side. And with time, I began processing the diagnosis, researching and lifting my broken heart up to faith in God’s plan and I prayed. I prayed, daily, that I would be strong enough.
Fast forward to the day our Sweet P was born. My world exploded with joy! I couldn’t believe she was really ours, that she was in my arms, that I was a mom again. It’s been 3 months. The first days and weeks are a blur, which I am sure most new parents would say!
Our Sweet P has a large hole in her heart. Initially, I was scared out of my mind about it. We have a lot of reference points with medical issues due to Delainie, but one area we weren’t familiar with was cardiology. We are getting familiar with it now!
There is a lot of fear, but it’s different than it was before. There are many people who have walked along this journey ahead of us, paving the way. I am concerned about upcoming heart surgery, but we are not alone. Through the DSDN group, I have found a tribe of “heart warrior mamas” to lift us up, stand by our sides and give us strength. I can also support them with what I am going through now and with what I have been through with Delainie.
The most unbelievable part of the journey thus far, is that we have found joy again. I never thought it was possible. This joy is unlike anything I have experienced before. With Delainie, I experienced the purity of joy. With Sweet P, it is unbridled, euphoric joy; and that joy has filled up the cracks of our broken hearts. Our journey isn’t likely to be easy, but it is destined to be wonderful.