Our little Anakin passed away in our arms at 3 a.m., Sunday, June 1, 2008. What was supposed to be a few minutes with him was actually 40 hours. We called our Hospice nurse. We had prearranged that she would take him to the funeral home. We couldn’t imagine the funeral home coming to get him. We held him for about an hour before we let her take him. Her friend drove her to the funeral home while she held Anakin in her arms. It was good to know that someone was holding him.


Many things we did at this point had been decided before we brought Anakin home. We knew that Anakin would be buried back home, two states away. This required knowing the laws for transporting him across state lines. Our state required that he be embalmed before transported. We had two options for transportation: fly him home or find someone to drive him. Travis and I couldn’t imagine flying him, which turned out to be a good thing. And, my dad offered, even wanted, to drive him home. It was something he could do for his grandson. We had already been in contact with a funeral home back home, as well as a funeral home here. It was better to not have to deal with all that in the moment.


So, we called our families to let them know Anakin was gone. My parents got on the road asap; they were bringing the “casket” to transport Anakin in. We called Anakin’s godfather and other close friends. Then, we tried to sleep.

We got a phone call in the morning from the funeral home where Anakin had been taken. We had mentioned wanting to do a short visitation there for our friends here. The funeral home said that we could come at 2 p.m. to make further arrangements. My parents arrived about 12:30 p.m. They said that they weren’t sure that the “casket” the funeral home sent was what I had in mind. It was described to me as hard plastic with a liner. I had no idea what they really meant.


At the funeral home, we filled out paperwork, gave the information for Anakin’s death certificate. Then, we started discussing the visitation. I originally decided that no one needed to see Anakin at this point because who needs that image. So, we thought we’d cover the “casket” my parents brought with a blanket. We had Dad bring it in, and when he walked in with it, Travis says I screamed. It looked like coffin-shaped Tupperware. There’s no way I could put my child in that. We started thinking of other ways to transport Anakin, but the funeral home didn’t have any actual infant caskets. We decided to put him in his bassinet to get him home.


We didn’t want Anakin to be open at the visitation that evening so we decided just some tables with his photos and toys. Then we were taken to see Anakin. He so didn’t look like himself. I would suggest not seeing your child so soon after they’ve passed and been embalmed. And, remember, they have soft spots. Seeing him was a shock to us. We originally wanted to dress him, our job as his parents, but we couldn’t do it. Don’t feel bad if you can’t do it either.


His visitation/memorial was that night from 7 p.m.-9 p.m. We weren’t sure anyone would show up, especially on such short notice, but about 40 people came. Our friends, co-workers, and NICU staff all came to pay their respects. It was good for us and for them.


Monday morning we woke up, ran some errands, and got on the road. My parents wouldn’t let us make the 7 hour drive home, so they drove us, our dog, and our Anakin back in a mini-van that they borrowed from friends. We drove straight to the funeral home, then to my parents’ house for bed. We had already decided that his visitation would be on Tuesday and his funeral Wednesday morning.


Tuesday morning we woke up early to meet with the florist and decide on his casket spray. Next, we went back to the funeral home to make all of those arrangements. I had always envisioned his casket as a casket (an adult casket), but apparently most infant caskets aren’t like that, they’re cloth or satin covered and not shaped like a casket at all. That’s not what I had seen in my head and not what I wanted. Our awesome funeral director tracked down an actual 2 ½ foot infant casket like I’d seen. Such caskets aren’t mass produced, and neither are the vaults like those adults have. Again, our director found a steel infant vault for us.


For visitation that night I had intended to keep Anakin’s casket closed, but when we looked at him again, he looked much more like himself. That, however, wasn’t the deciding factor in opening the casket. The funeral director said to me that they normally counsel people to open caskets when they can because closed caskets cause people to talk, to ask questions. That, possibly in Anakin’s case, people may wonder if he looked normal, if he had all his parts, etc… The one thing I really wanted was for people to remember Anakin as he was. I didn’t want them to think that he was anything but a beautiful baby boy. The imagination is often much worse than reality. So, I opened his casket, let everyone see that he was perfect just the way he was.


The English language is utterly inadequate to describe how it all feels and felt. His funeral was hard for us. We sat on the front row, just me and Travis, holding each other, crying on each other. Although we felt like we said goodbye when he died in our arms, that was it, the last time we’d ever be near him, the physical him. We buried him in my dad’s family’s cemetery out in the country. The wind was blowing. It was oddly calming, like he was there. A prayer was said. We kissed his casket and walked away.


Friday morning my parents brought us back home. We stopped at the cemetery. We told him we were sorry that we had to be so far away and that we loved him, and we begged him not to leave us, ever. We feel like we just exist now. We wake up, exist, and go to bed.


Everything is hard. Everything causes this feeling like I’ve been punched in the stomach. And I want to scream at people for complaining about their so-called “problems,” their “nightmares.” We try to remember that other peoples’ lives continued, that they don’t know our son just died. But, it’s not easy.


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The following is what we wrote for the pastor to read at Anakin’s funeral:
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“We wanted a child so bad and even though we were nervous about our ability to be parents we decided to have a baby. We didn’t want to find out if the baby was a boy or a girl but just always prayed that the baby was happy and healthy, at least part of our prayer was granted. Anakin was a happy baby. He never cried without a reason, like needing his diaper changed, being congested, or simply needing his daddy. He loved to be read to, be naked, and listen to music with us. He was fascinated by the color red but looked the best in blue.


We had no idea that Anakin had a form of dwarfism but when he was born, we knew it wouldn’t matter as long as he was healthy and when we learned his disorder was not compatible with life, our world came crashing down. We tried to make sure that whatever life Anakin had was the fullest it could be with the most love possible. We tried to help him live a lifetime in his 34 days.


And our little boy was strong. Shocking the world from the moment he entered it, Anakin impacted everyone. Everyone who walked by him in the NICU just felt like they had to stop and talk to him, especially if he was awake.


And he left this world exceeding expectations. What we were told would probably be a few minutes to an hour at home became 40 hours with us. God made him strong for us and allowed us time with him away from the NICU where we could hold him non-stop and talk to him and try to let him know how much love we had for him.


And even though there is no escaping a pain like holding your son as he passes away, we have happy memories of our little Anakin that we cling to now. Although we don’t understand and we want him back, we didn’t want him to suffer. But, most of all, we don’t want him to be forgotten. Anakin has changed us in every way possible and we don’t want his impact on this world to go unnoticed.”