Just like most little girls I dreamed about being a mother and having several children. When my husband and I had been married for a couple years we decided it was time to start our family. I thought for sure it would take several months but I was lucky and became pregnant very quickly. My excitement was through the roof and I could not hold it in, so I told everyone. I couldn’t believe I was going to be a mother. My heart was filled with joy and I was so excited for this journey. The pregnancy was going well, I had cravings, pains and stretch marks. I began to feel the baby move and kick. I thought all was going well. We were getting so close to meeting our son.
I went to the doctor for my 3D ultrasound and I remember the look on the nurse’s face as she excused herself to get the doctor. I was scared and I was alone. My husband was at work and I didn’t know what to do. I didn’t know what they were going to say but I was worried. I am sure my heart was going to leap out of my chest. The doctor came in and began the ultra sound again. I had no idea how to feel when the doctor said that there was something wrong with our son. He still had a heart beat and he was growing however the ventricles in his brain were enlarged and they were worried something was wrong. They offered to do several tests that I declined to do because the tests would not tell us anything different then what we already knew. At this moment I felt as if my whole life had stopped and I was in some kind of dream. I had to continue on like nothing was wrong in hopes that whatever it was would be something we could work through. I went to a routine checkup and found myself at the hospital where we delivered our son seven weeks premature. After the C-section I was so loopy I didn’t even remember his cry. I didn’t remember anything. When I finally was able to sit up and talk I realized it had been almost 4 hours since the surgery. I was not able to see him for 8 hours and was not allowed to touch him until days later. Those were the hardest moments of my life. I felt helpless. Our beautiful son Kaison was born with Conradi Hunnerman Syndrome with a Dandy Walker Cyst. He was born both deaf and blind. His cute little toes and hands were webbed and he had very delicate skin. He was beautiful! After about 7 days at the local hospital they transferred us to Primary childrens hospital for more testing. The geneticists at the University did testing on both my husband and I and found that his Genetic Mutation was caused by an affected X chromosome passed through the woman. We were informed that it was a 50/50 chance any of our children could have this same mutation… Now what was I supposed to do. My world literally shattered to pieces with all this info.
It was something that the doctors had not encountered before. They studied it hard. The doctor informed us that most babies born with this syndrome do not make it to birth. We felt so proud of our son and his fight to be on this earth. Yet we were scared to death that he would not make it. We continued our stay at primary children’s learning to care for our sweet angel and kept ourselves as positive as we could. Kasion was not expected to live very long so we just loved him and held him. We were able to bring him home for 3 days before he passed away. Those were the best days of my life. We made sure to make every moment with him count. His small life and presence was so sweet. He was perfect in every way. I struggled for a long time after his death and wondered if I could ever go on. My husband and I grew closer as we cherished each memory and moment of our sweet son. After long frustrating hours and weeks of talking we decided we wanted to do foster care and hopefully adopt. So we began the process only to find out I was pregnant again. Knowing what was ahead for us we were extremely scared. I was not sure I could go through it again. I didn’t think I was strong enough. Our beautiful son Xander was born 2 years after his brother. We knew in advance that he most likely had the same diagnosis as our first. They followed me closely through the pregnancy and saw all the same signs. No matter how ready you think you are you are never ready to lose a child. We did not have a time line; it was just a waiting game. We just took it one step at a time. We enjoyed every moment, every milestone and every day we had with him. We were lucky to have Xander for 13 months before he left us. Again the devastation hit and we were hurting and alone. My heart was broken and I felt like my world was turned upside down. There was no way we were going to move on from this.
It was not long after we lost Xander that I felt we needed to put our name back on the list for Foster care. We were licensed but we were not currently taking placements. We prayed and prayed about what to do and the next day I called DCFS to tell them we were ready. About 4 weeks later I got a call and they had a baby girl that needed a temporary home but could possibly turn into a permanent placement, and our family began to become whole again.
Although our journey began with heartache and loss we have been extremely lucky to have our hearts filled with love from our 5 beautiful children, 2 boys, Kaison and Xander and 3 girls we received as a blessing of foster care. I would never change what happened in our lives. Our boys are truly a blessing and strength and they will be in our hearts forever. They taught us unconditional love and we will love them for eternity.