Wonderfully Made
August 9, 2023
The life that I live was not one I ever expected. As a young girl, I always loved kids and dreamed of the day that I would have my own. I didn’t want a specific job, I never worked towards building a career. I wanted to be a mom.
My adult life started off the way I had envisioned! I married my high school sweetheart and about a year after we got married we decided we wanted to start our family. It felt like I was living the dream. I knew of some couples who struggled to conceive, and I kept telling myself not to expect to get pregnant right aways, but I again seemed to win the lottery, and it wasn’t long before we found ourselves looking at a positive pregnancy test. We were so excited. Every week we would read what was new with our little baby’s development. At 17 weeks we went to Babymoon to find out what we were having. I was really hoping for a girl, but there he was. Our first baby was a boy! Honestly, I shed a few tears. But after a trip to the store to pick out a cute outfit, the picture I had in my head of a baby girl was replaced by the thought of a beautiful baby boy.
A few weeks later we had our routine ultrasound at the hospital, and this is when our world turned upside down. Our ultrasound tech said she was going to get the doctor, which should have been my first clue that something wasn’t right. The rest is a bit of a blur in my mind, but I remember the doctor saying things like “baby’s femur is broken”, “I don’t know if the baby will live or die”, “It’s not important if the baby is boy or girl at this point”, “You are going to have to go for further tests”. I was in shock. I hadn’t known of anyone who had experienced this and I had not mentally prepared for this to be an option. We were devastated. We were broken.
Further testing revealed that my husband and I both carry the most severe form of Hypophosphatasia (HPP). The two of us are not affected by it but our biological children have a 1 in 4 chance of getting HPP and a 50% chance of carrying the gene like us. I have found that HPP seems to affect each person differently. Some only get diagnosed with it as adults, but like I said, we carry the most severe form. We really had no idea how badly our baby would be affected until he would be born, but doctors weren’t providing much hope. There was one doctor that introduced us to a trial drug for HPP. Children seemed to be doing quite well on it so we decided if our baby made it to birth we’d give this a try.
December 20th, 2011, our baby boy was born. Deklyn Jeffrey Reid Sawatzky. He arrived in a very fragile state. He couldn’t breathe on his own and his limbs were shortened. X-rays showed very little calcified bone, but he was here and he was alive. We had great hope that the trial drug would bring amazing results and we’d bring our little boy home soon.
The drug helped Deklyn’s bones to grow and harden which was an incredible thing to witness, but for reasons we will never quite know, his lungs did not strengthen, and he consistently needed to be ventilated. When he was about 6 months old we opted for a tracheostomy which gave us time to be his parents. To care for him and play with him. To see his smile and allow him to communicate with clicks of his tongue and smacks of his lips. At 14 months old Deklyn got quite sick. This would happen sometimes, and he would need special care in the Pediatric Intensive Care Unit for a few days and then he’d be moved back to his regular ward. Through this all, we were waiting for him to get big enough to be put on a portable ventilator so we could take him home. But this time he didn’t get to move back to his regular ward. This is where we stayed until February 28th, 2013, where my husband and I stood by his side as our sweet Deklyn’s heart stopped beating.
I look back at the woman that I was then and I don’t know how I walked out of the hospital that day. We held him, kissed him, dressed him and left the hospital to clean out our Ronald McDonald House room where I had been living for the last 14 months. I was completely heartbroken. But even in the depths of heartbreak, I also knew that he was completely whole and free from suffering. He was in a place, free of pain, which is all I ever wanted for him. The only problem was that I wasn’t able to go with him. I held so tightly to the hope that I have in Jesus and it carried me through.
In 2015 we welcomed another little boy into our lives. This time we felt unbelievable relief to know that he was unaffected by HPP and now we decided that we were done having biological children. If we were to take the risk and have another child with HPP, I would not be able to provide the same care as I had been able to with Deklyn. But in 2017, my husband and I both felt like we should have one more. We went to our first ultrasound, and I remember my heart dropping to my stomach as I saw the tell signs of HPP. We left the hospital shattered and I just remember saying the words “I can’t” over and over. I didn’t know how I was going to do this all over again. I didn’t know how I was going to take care of our son at home and this coming baby in the hospital. I remember thinking, “I can’t say goodbye to another child. I can’t put our families through this again.”
In all honesty, this was one of the darkest times in my life. I knowingly chose to have a baby that could be sick. I didn’t know anyone who had two kids with life threatening diseases. I didn’t know many people who had lost one child, let alone two. I am a verbal processor; I like to talk things out and it felt like no one wanted to listen to me voice my fears about this baby dying too. Thankfully, we had a wonderful team of doctors that helped us come up with a plan for this baby. I am a planner and felt that having a plan in place was like having a lifeline, so while we couldn’t determine what would happen for certain until the baby was born, I was happy to know what our options were and having professionals help me make those decisions was a blessing.
March 7th, 2018, Wyatt Timothy Cooper Sawatzky, our 3rd son, was born. Our team told us that he was in rough shape and our goal at that point was just to spend time with him. So that is what we did. A few hours later, our baby boy Wyatt died in my arms.
Deklyn’s death had felt peaceful. Maybe it was because I had time to come to terms with him dying and knew it was better for him to go. Wyatt’s death was extremely painful to watch and left me feeling raw and more alone than I had ever felt before. I think I have come to understand that when we had Deklyn, I got a whole year of hard but also very happy memories with him. We had been given the chance to bond with him. We didn’t get that with Wyatt. I didn’t get to know his sweet personality and I couldn’t help him as he lay in my arms not able to breathe. It hurts so much more than I can explain with words.
Two losses. I felt more alone than ever. I already knew the pain of losing a child and all the secondary losses that follow. I already knew what it was like to do everything in my power to keep Deklyn’s memory alive. To do everything I could so that others would remember him and keep his memory alive. I wanted others to remember Wyatt too. Now I would have to go through all of that again while still grieving my first baby. I felt so alone but I knew I couldn’t possibly be the only one feeling this way. I knew that if I felt alone, that others must feel that way as well.
This was when Wonderfully Made was born. I wanted Wonderfully Made to be a place for families to connect, support one another and share their little one’s memories with each other. To be in a place together and hear our baby’s names spoken. I had seen organizations host memory walks in the United States and I knew that if a local community hosted a remembrance walk, I would attend. Instead of waiting for someone else to plan something, I decided that I would be the one to do it! Our Remembrance Walk takes place every September, this year will be our 5th annual walk. For 2023 It will be hosted on September 16th, at 10am at the Altona Centennial Park in Altona, Manitoba. If you want more information, check out my Instagram page @wonderfullymademb and follow for updates on that! My favorite part of the event is when we read the names of the children registered. I know we all wish that our children’s names were said more often, and this is an opportunity to hear your baby’s name said aloud by someone and others get to hear it. If you lost your child early in pregnancy and never gave the baby a name, we can say a nickname you’ve given the baby or “Baby __________” with your last name. I also love that this event is for families. I find that overall, there is more support for women who have lost their babies, but not a lot is offered for the dads or the family as a whole. To see siblings, grandparents, cousins, aunts and uncles come out in memory of the child they so wish was here, is so beautiful.
Along with the walk I also do monthly remembrance posts on the Instagram page. Parents are welcome to submit their child’s remembrance date(s) like birthdays, the day the child passed away, what was the baby’s due date, etc., for me to post along with a photo and write up if they wish. Giving others a space to share their children with others is so special to me and I love it when others want to share their little ones with the rest of us.
If you are reading this and have lost a child I am so, so sorry. It is hard to find the words when someone has lost a child because there are none. It’s horrible and tragic and we wouldn’t wish it on anyone. If you feel alone in your walk remembering your children, I hope you join us for our Remembrance Walk. It’s short and sweet but it is absolutely beautiful to see everyone gathered, unashamed of their emotions and remembering our children together. Their names deserve to be said and they deserve to be remembered.
-Cassondra
< Back to BlogShare on
