Below is a letter that I wrote to Jackson shortly after what would have been his 7th birthday. If you haven’t read Our Story, Jackson was our first son who passed away before he was born. Jackson was diagnosed in utero with Trisomy 18, which is a life-threatening chromosome abnormality. He was fitted with his angel wings on November 17th, 2008.

4/25/16

April 21^st, 2009. That was the day you were supposed to be born. You would have just turned 7. You would be in 2^nd grade. I would have taught you how to ride a bike. We might have gotten you a dog. But I guess there was a different plan for you. After all of these years, I still have no answers; still filled with so many questions.

“Everything happens for a reason.” At least that is what they say. But why this? What was the purpose of this? Why were you given a genetic defect that made you “incompatible with life”? Are we being punished for something? What did you do to deserve this?

The only answer that makes any sense to me is that this was meant to teach us that life is precious and fragile. We must live every day to its fullest. Live. You had to die to teach us to live? That doesn’t seem fair. You didn’t have a chance to experience even the simplest things in life. Being held by your mommy and daddy; a little kiss on the forehead; a warm summer breeze across your face; the smell of a freshly cut lawn; the sound of a thunderstorm; playing in the snow. All these things that we take for granted. You didn’t even get a chance to experience any of it.

When we found out how sick you were, your mommy and daddy were heartbroken. We cried for a long time. Even writing this seven years later, I find myself tearing up a little bit. Words cannot express how I felt knowing that you didn’t have a chance and there was nothing I could do about it. I went through so many emotions that after a while I think I just went numb. I couldn’t feel anything anymore. I wanted to go to sleep hoping this was just a bad dream and everything would be okay when I woke up. Unfortunately this was not a nightmare; this was real.

I sincerely hope you know how much we love you and that you understand why we made the decision we did. The choice we made was not an easy one. We ultimately decided, as hard as it was, that we didn’t want you to live your short life suffering. So we chose to set you free. Every time I see a butterfly, I wonder if it’s you stopping by for a visit. As a matter of fact, I am in the process of putting together a butterfly garden for you so you have a place to hang out whenever you are in the area.

Love you,

Daddy

XOXO

April 18, 2016

When you reach a certain age, you start thinking about settling down and starting a family. You think about getting married, raising a couple of couple of kids, having a dog, and a house in the suburbs. The American dream. At least that was my dream. Unfortunately, it didn’t quite turn out that way. A beautiful wife? Check. A house in the suburbs? Check. Two kids and a dog? That’s where the dream went off the rails a bit.

When Stacy got pregnant (the first time), we were ecstatic and nervous, which I am sure most first time parents-to-be are. We started picking out names. We bought a couple of those “What to Expect…” books. We had all of the recommended prenatal testing done, and I tried to make it to every doctor appointment. That first ultrasound was a little weird. Seeing this little seed growing in my wife’s belly. That little seed was going to sprout into a little human. Even with all the amazing technology we have today, nothing can beat that! As that little seed grew little by little, our joy and nervousness soon turned into fear, tears, and a whole lot of emotions that expecting parents should not have. It turned out that our little peanut was not developing correctly and the doctor suggested further testing and a level 2 ultrasound to get a better picture of our little one. Looking at the screen during that level 2 ultrasound, we saw our little baby’s twisted spine, club foot, and what appeared to be a hole in the heart. We know this wasn’t going to be good. An amniocentesis confirmed our biggest fear. The little boy we were going to call Jackson had Trisomy 18.

The doctors gave us a brief synopsis of what Trisomy 18 was, but we wanted to find out more, so when we got home we started researching it. The more we researched, the more emotional we got. According to the Trisomy 18 Foundation, “Trisomy 18, also known as Edwards syndrome, is a condition which is caused by an error in cell division, known as meiotic disjunction.  When this happens, instead of the normal pair, an extra chromosome 18 results (a triple) in the developing baby and disrupts the normal pattern of development in significant ways that can be life-threatening, even before birth. Unlike Down syndrome, which also is caused by an extra chromosome, the developmental issues caused by Trisomy 18 are associated with more medical complications that are more potentially life-threatening in the early months and years of life.  Studies have shown that only 50% of babies who are carried to term will be born alive, and baby girls will have higher rates of live birth than baby boys. Some infants will be able to survive to be discharged from the hospital with home nursing support to assist with care by the parents. And although 10 percent or more may survive to their first birthdays, there are children with Trisomy 18 that can enjoy many years of life with their families, reaching milestones and being involved with their community.  A small number of adults (usually girls) with Trisomy 18 have and are living into their twenties and thirties, although with significant developmental delays that do not allow them to live independently without full time caregiving.”

Wow! How are new parents, or any parent for that matter, supposed to react to that? How do you go from being overly excited that you are having your first child, to finding out that your child has a 50/50 chance of being born alive? And if he (or she) does manage to survive the pregnancy, there is only a 10% chance they will make it past their 1^st birthday! “How did this happen?” and  “what did we do wrong?” were just some of the questions we had. We were told over and over that there was nothing that we did, nor was there any way to prevent it. It was something that just happened.

Our doctors gave us a choice. We could continue with the pregnancy or terminate it. What kind of choice is that? We held each other tight that night and cried. We talked to Jackson and let him know that we were sorry that he was not going to be able to experience all that life has to offer. And we cried. We discussed our choices. And we cried.

This is probably a good time to mention that I am adopted. My biological mother got pregnant at 16. She had the same choice that we were given…proceed with the pregnancy or terminate. At 16, she knew that she was not going to be able to take care of me. She opted to put me up for adoption to give me a better chance at life. Even though she had a choice, I guess abortion wasn’t an option for her. That is part of the reason our choice to terminate or continue the pregnancy was so hard on me. I think the fact that my biological mother chose not to terminate her pregnancy made me more pro-life than pro-choice. So being put in the situation of having to decide if we should terminate our pregnancy was extremely difficult. The more Stacy and I talked, the more we realized what the right choice was. We knew that the chance of him even being born alive were slim. And if he did survive the pregnancy, the chances of him being able to experience life were pretty much zero. After seeing his mangled body in that ultrasound, we knew he was going to spend his life suffering. We didn’t want him to suffer. We loved him too much. It was the hardest decision we have ever had to make and I hope we don’t need to make it again. We like to think that we gave him a better life than he would have had here. We set him free. Free from pain. Free from a life of doctors, nurses, hospitals, surgeries. That just wouldn’t be a life.

Before we let him go, we took a little bit of a road trip. We wanted to make sure that someone would take care of him when he reached the other side. We didn’t want him to be alone. So we visited the graves of all of our close relatives that have passed on and asked each of them to keep an eye on him until we get there. Once we knew that he would be cared for, it made the letting go a little bit easier. Not a lot, just a little. His ashes are now in a small urn about the size of a salt or pepper shaker that sits in our living room.

That was 7 years, 5 months, and 2 days ago. I still think about Jackson from time to time. I wonder what he would have looked like. Would he look more like his mommy or his daddy…or a nice combination of both of us? 

He will always be in our hearts.