I couldn’t eulogize my son. I tried, I really did, but just the thought made me ugly-cry. Instead, I chose to read “i carry your heart with me” (which I also didn’t manage to read without ugly-crying). I don’t feel bad about not being able to pull myself together in time for the service, but I did have thoughts to share about Owen. This is what I would have said:
I never really thought I’d want a boy. Before I got pregnant, I wanted a girl. I knew I could just as easily have a boy, but I couldn’t imagine how I’d raise one*. In my first trimester, I worried that if we found out we were having a boy I’d be disappointed. I thought I’d spend the whole pregnancy coming to terms with not having a girl (ha! not even). At 13 weeks, Owen was very much not a girl, and I didn’t even care! Almost as soon as our sonographer told us we were having a boy, I was elated! I was also relieved. The worry that I’d be disappointed in my baby’s test results before he was even born were put to rest. I set about preparing for our baby boy with complete contentment. I truly never imagined there would be anything else to worry about–I was very healthy, my husband was very healthy, so surely our baby was going to be healthy.
When Owen’s arms and legs lagged behind the rest of him at 15 weeks, they told us he might have a form of dwarfism. Alright, that’s different, I thought. But I didn’t really care all that much. I just figured we’d adapt some things in our lives to fit a little person. I showed articles to Zach about little people doing everything average height people can do so he wouldn’t be worry. It never occurred to me skeletal dysplasia could be lethal. By the time we went into the ultrasound with our perinatologist, I was genuinely excited at the possibility that we might have a very unique little being on our hands. And…we did, but not in any way either of us ever imagined. For the first time in my pregnancy, I was disappointed that things were definitely not going as I had planned. We were scared, so we set about preparing as best we could for a potentially very sick baby who would perhaps die. All along the way though, we were looking forward to our son. Owen was maybe going to die, but first he was going to be born! We embraced him always.
That’s what I really want people to know about Owen. He was cherished and wanted. Even with all his uncertainties, we were never disappointed in him. His problems weren’t a surprise. We didn’t begrudgingly accept him. We knew he was different, and we wanted him just the same. We were excited to be his parents! We welcomed him into our family and into our hearts, and we are still so glad that he was here even though he had to leave too early.
*I’ve since done a total flip on this. Bring on the baby boys!
From a very early time in Owen’s life, Zach and I made seemingly impossible decisions for him: Do we carry Owen to term? How far do we go with testing in utero? How far do we go with interventions at birth?
When do we stop trying to make Owen survive and instead let him die gently and in peace?
I found every. single. one. of these decisions agonizing, especially the last one. I would examine all of our options endlessly, even after we had already made a decision. I could not reconcile the idea that we were even having to make these choices. After what was probably the tenth time that I questioned Zach about the adequacy of our birth plan and preparation for Owen’s life (or death), he finally laid bare how he felt about it. He explained “The way I see it, we just make every decision we can out of love for Owen, and that makes it the right decision.” From that point on, that’s how we made decisions. We asked ourselves what the most loving decision was, rather than the right one.
Looking back, this was perfect. In situations like ours, there are many options. Very few of them are right or wrong. When Owen was born and the neonatologist asked if we wanted to put Owen on the ventilator, it was hard to say no. Opting out of the ventilator was a movement towards a gentle death, and how could we make a decision that would cause Owen to die? But when we looked at the options, we didn’t feel that intubating Owen was the most loving decision since it wasn’t going to increase the quality of his life in the brief time we had with him. Therefore, it wasn’t the best decision for him.
I struggle sometimes with guilt that we didn’t tell the doctors to do every medical intervention possible to try to keep Owen breathing, to keep him alive as long as possible no matter the cost. What if Owen had been born to another mother, one who would have insisted on intubating him, operating on his various heart defects? Would she have had an extra day with him? Maybe an extra week? But then, I remember: I am Owen’s mother. I would have done anything to save him. I would have given him my own lungs if I could, my own heart. There weren’t any medical interventions that would have given Owen a chance. What he truly needed was for us to love him enough to let him die in our arms, rather than in transport to another hospital or on the operating table. That was the most loving thing for Owen. He went to sleep for the final time on my chest, hearing the same heartbeat that had given him life for so many months, listening to his father tell him how much we loved him.
So I decided to start blogging.
It’s sort of bittersweet, because I intended to blog if Owen lived. I thought it would be a nice way to share Owen’s story and allow family to keep up with what we going through, medically and otherwise. I thought I’d be posting pictures of Owen in the hospital, getting his first real bottle, recovering from surgery, celebrating going home with all of his nurses who would obviously love him so much. I wanted to take him home, and I wanted to put it on the internet so people could revel in our miracle baby.
Owen turned out to be a different kind of miracle. Aside from his tiny lungs and heart problems, he was completely perfect in every way. Even his extra little fingers were perfectly formed. He was beautiful, and he taught me how to love in a whole new way that makes my life richer and deeper. He made me a mother, he made me selfless, and he made me strong.
So anyway, I still decided to start blogging about Owen and our life after him. It’s just taken on a new tone entirely.
I wish our story was different, but I hope that sharing it can help families like ours. More details of Owen’s story and ours are available here and here.