What difference has hospice [the Pediatric Program at Angela Hospice] made for you?
NEVADA VERRINO: Somebody told me the goal of hospice is not to speed things up, but also not to slow things down. I like that way of looking at it. We didn't go into hospice to give up and hope that he passes quickly, but we also are not trying to prevent his body from doing what it wants to do. And I like that idea of just being able to sit with him during this time and not looking at hospice as this really scary way of throwing in the towel and just turning your back on the person, but instead really being willing to sit with the person and go through it with them, and allow it to be maybe a more peaceful experience than they might have had otherwise.
Once we met with the staff at Angela Hospice, I was just amazed, because they were people who were willing to speak the language with us that we wanted to hear. They would talk to us about this process of dying. They could understand how uncomfortable he was and show us ways to make him comfortable. The baby started sleeping. Actually, after we put him on hospice, he started gaining weight.
So it was twofold. I felt like I was doing something to help him be comfortable, and then also I had people to talk to about my son dying. We can't talk as easily with others who haven't been through something like that. They don't know what to say.
ANTHONY VERRINO: Yeah, experience and just time to sit and talk and understand what we mean and what Anthony's going through and what we're going through with him.
NV: Yeah. A lot of our friends or family, even if they weren't uncomfortable, were just inexperienced. So it was hard. We were all fumbling through it, and when you're talking about a child dying, it just seems wrong. So people feel more comfortable remaining hopeful: "Oh, well, he just might get better," or, "Maybe this new medicine will work," or, "Maybe when he turns two," or "There's always this hopeful future." And we would a lot of time have to speak that way with other people and then come home and feel different, feel like that's really what wasn't going on. So in that it felt lonely.
So with hospice, to have people come in and say, "We've been through this, and you're not crazy, and this is happening, and it's OK for you to make these choices, and we understand what you're doing," it was just really, really supportive. It just felt like somebody was here to help us, and they could identify with us.
How useful is it to try to be as prepared as you can, to try to deal directly with what's coming? Is that strange for you to do? Is it just a part of who you both are, that you're willing to take that on, too, in terms of thinking, what happens when your son dies?
NV: I think when we're planning ahead or thinking about what steps we would take afterward, it might even be in some ways a survival mechanism, because it gives us steps and procedures on how to do something.
I don't think we can really imagine how we'll feel when he's gone. I've spent two years with a very sick baby, who from his birth has had significant problems and whose prognosis has never been bright. And every time we found something else out from the doctors, it was always like one more thing that was worse.
So even having that whole experience, when I sit and think about the day waking up when he's gone, I can't prepare for that completely. But it gives us steps, things, I guess traditions or something that we follow and that maybe will help us survive. And finding a way to honor him -- we haven't talked very much about him, but our incredible baby --
Anthony, tell me about your boy here.
AV:He doesn't communicate directly a whole lot. He doesn't see. He doesn't make noises or cry unless he's having seizures. But he just has this overwhelming presence for us, and I know that he feels loved. And he's just such a big person, you know, in this small, broken body.
You said you've learned a lot from him.
AV: Yeah, Nevada and I call Anthony "our teacher." When we first brought him home I think is when we started to realize that he's our teacher, and he's taught us a lot about each other and about life and about perspective, and his presence has done all that for us.
NV:There's something about him -- and he is not a baby who communicates in any sort of normal, expected way. But people just can't help but loving him. I swear, we collect nurses; we collect doctors; we collect neighbors, passersby in the street. I mean, he just has this way where people feel either connected to him or they just love him. We have family and friends and people who pray for him and people whose children pray for him. People's children take his pictures in for show-and-tell. I don't know what it is -- just maybe his presence, his spirit or something. He just really is an incredible little person.
We feel blessed to have him, you know? We feel lucky for every day that we do have him. And there are days that are so hard, that we just are all, as a family, trying to survive, and he's always in a fight to survive. ...
Can you talk a little about his diagnosis and how you learned about that?
NV: I got into this support group online and was talking with other parents, and I was feeling our biggest problem with his health is the seizures. And in this support group, I'm finding with other parents, very few of the babies have his type of seizures.
So I was feeling again like we didn't fit. I started doing some research into this other family of syndromes and sent the baby's pictures out to other parents, writing to find out where I can find kids with his type of seizure disorder. And I found a lot of the parents in the CFC support group said to me, "We really think you probably belong here."
But again, there was no test. Then one was developed shortly thereafter, and I went back to our geneticist and asked if he would consider doing the testing for this, the CFC syndrome. He didn't want to do it. He thought it was premature and that it was not the right syndrome.
But I really felt there was something there, and I said, "Well, if our insurance covers it, can we just do it just to appease me?" And he said, "Of course."
We sent the blood test in, and he was one of the first babies diagnosed officially with the syndrome given the new test. So now we know where he fits. And not only that, but it allows all of the testing that was done on him, all of the things that he endured for the first 18 months of his life, to be used for something.
I had all of his records shipped out to researchers, and he has since been part of four research studies on the syndrome. He helps define the syndrome. That means that other parents who have children like him can have that test done sooner, and they'll know when they're in the hospital what they're dealing with.
And what are his actual physical features that would be part of that, if you wouldn't mind?
NV: Not at all. My beautiful baby, I'm happy to share.
With the Cardio-Facio-Cutaneous syndrome -- it's a terrible name, no offense to whomever named it -- it is a name that describes the main features. So he has the heart problems that go along with this syndrome. He has the facial features that go along with it -- the sparse eyebrows; he has the little wide-set eyes, and they kind of slant downward a little toward the end, and the little upturned nose, yeah.
He's very small, and a lot of these children have failure to thrive, and a lot of them are underweight and don't grow to be tall. The complications with his brain make it difficult for him to eat well, and then the fact that he goes through these stages of dying where he'll lose weight keeps him very small.
Does he see and hear?
He can see light and dark, so if we turn the light on he can kind of squint his eyes, but he doesn't see things directly in front of him. He does respond to our voices when he hears our voices. I think he knows we're around.
As you know, this film is about people facing death at different stages. Are there things you know now that you wish you'd known then, that might be useful for other families to know in facing death?
NV: I think the idea that dying is a process. I mean, just understanding that it is a natural process and something that most of us, barring a tragedy, will go through, that is somehow comforting to me; that what he's going through isn't a failure of the system and our inability to find out how to fix him, but he was born this way, and his genetic problems have led to health problems that will make for a short life and that it's OK to, in that way, let nature take its course.
There's something peaceful about it, you know, that it's not this horrible heart-wrenching event, but more like a sad but natural event, something that's going to happen and isn't necessarily the worst thing. ...
AV: Just from a different perspective, it depends on the situation. I guess if we would have known a little bit more about specifically what the syndrome was early on and knowing what hospice brings and understanding the process of dying and maybe having reached that point a little bit sooner and not having had to put Anthony through a lot of testing, from that perspective --
It's hindsight now. And yet understanding it now, it's just, if we could have reached that point sooner.
Is there value in confronting his death directly? I mean, many people don't do that. Can you tell me what difference that makes, if any?
NV: I had a really nice conversation with Elizabeth about this, the nurse from Angela Hospice. We were talking about dealing with the grief. A lot of times during her visits, we will have conversations about what we can expect or what things might be going on with the baby. And it's really normal for me to cry during those meetings because it's just emotional. I trust her; it's a place for me to kind of get my grief out.
She is really always encouraging about it. She says that "If you don't deal with it, it will wait for you." She says they have a lot of people they deal with at the hospice agency who are in denial. And you can suppress it for as long as you can stand it -- 20 years -- but in the end it will still be there.
So I like that idea. I can't pretend that I'm prepared to actually live without him. I can't even imagine the day that I wake up and he's not here. But I like that idea of trying to be in the moment or to just let the grief happen and to be able to be sad about it, because I think it's a pretty natural feeling, you know? It's what's happening. He's going to die, and we're his parents, and we love him; we're going to miss him. It's not what we wanted for him, but at least we can go through it with him and feel those things and try to be with him.
I imagine if you've been as direct as you are in confronting it that those around you in some way might potentially be more able as well. So I would think it also has a cumulative effect. And my sense is if you don't, it must be so isolating.
AV: Some folks in my family, when he was going through some of the harder times, they will say, "Well, why?" We still get the question, "Well, why isn't he eating?" And my answer is, "Because he's dying," you know. So even now it still has to come out from us that directly to some family -- it's because he's dying.
And how do they respond when you say that, Anthony?
AV: Just some sadness. They're not used to living this every day. But it's important that our family hears that directness from us, and they can help us deal a little bit better that way when they see we're OK with it.
NV: We always appreciated that type of directness from the doctors. I'm an emotional person, so if the doctor was giving us news and I'm crying, a lot of times I felt like they would soften what they were saying because they felt they wanted to protect me. And I'd have to say in plain language: "I'm going to cry, and that's fine, but I still want you to tell me the real news, give me everything that you really know, even if it's hard to hear," because we wanted to be there.
The concept that for most of us has been abstract and a little bit contradictory is the idea of a "good death." In some way you understand something more about that than maybe the rest of us.
NV: Yeah. Oh, and it's a hard thing.
There's times where you wake up in the middle of the night after he's had a horrible day and he's suffered, and you've had to try to just medicate to keep him comfortable, and I'll go into his room and hope that he had the good death, that he just went peacefully. To date that's not been the story, but yeah, we hope for that good death for him, and a comfortable passing.
(To baby Anthony): He doesn't look at all like he's ready to go today, do you, huh? You're a big boy! ...
I think, Nevada, it is what you talked about earlier: When you're facing death like this with your boy, you realize there are things worse than death. I think that's what I took you to mean by that; that it's part of an upside-down universe, too, in a way.
NV: There are things worse than death; there are. The suffering that can come before can just be awful. And with the baby, because he can't show us, we're left in that area where we can't ask him: "How much are you suffering? Do you have headaches? Are you hurting?" So we have to look at subtle signs, clenched fists for pain, or just prolonged seizures and how his heart sounds, to give us some indicators of how he must feel.
But yes, there are so many things that people go through that can be horrible. And we hope that his passing is more or less quiet and comfortable and peaceful, kind of like the rest that he really hasn't had, not since his birth.
Would you talk a little about the prearrangement discussion with Tom Lynch the other night where the three of you were discussing the details and meaning of some of these rituals around this?
NV: Our discussion with Mr. Lynch helps us think about what we would like to have for him when he does pass. And in a way, the people that have been with us and gone through it with us can come and celebrate his life with us.
We're at a place where we have a lot of questions when it comes to religion, and I'm assuming a lot of us do. Both of us being Catholic and having families who are Catholic, it provides more or less a road that we can walk in. But we certainly do have a lot of things that we're unsure of. But when it comes to looking at a funeral ceremony, I would like to do something that speaks to that tradition and allows him to be a part of centuries and centuries of people burying their dead.
And there were other details you discussed.
NV: We have talked about having Anthony's dad build a casket. That was something Tom mentioned. And Anthony's dad is a carpenter. His family back in Italy had --
AV: -- a carpenter shop, and he was raised in a carpenter shop. He was a 6-year-old boy in Italy learning a trade.
NV: They did the coffins.
Does it make sense some way for you, Anthony?
AV: I think it would be a nice thing. My dad is kind of turning emotions on and off, like I kind of deal with things. He's like that, so he's not always able to express what he's feeling. And kind of understanding that, I think it might be a nice way for him to put his energy into something that he knows how to do and that he's very good at.
NV: Tom has mentioned, too, that there's people who will just want to do things because they want to be able to contribute, and they can't take away the hurt or the sadness, so they just want to do something.
And in your talk with Tom, you discussed the burial or cremation decision?
NV: We haven't decided about cremation or burial yet. There's a part of me that would love for him to just be free of this body that has kind of held him hostage and hasn't allowed him to do the stuff that we think that this giant spirit inside of him could be capable of. It would be in some ways a symbol of this freedom, that he's free.
Then also I really do like the idea of having a place where I can go visit him, where we would just bury and have a traditional casket, and I would have that place where I could go. The idea of having the ashes in the house, I don't know. For some reason it makes me feel sad, like our life would go on, and then there he sits. It doesn't seem like an option that's good for me. It would just be sad, it seems, all the time.
(To baby Anthony): Look at you. ...
AV: I think we'll know when the time comes.
NV: Yeah. At least we're well-informed, so when the time comes to make the choices we know what our options really are and what we can do. And they're really great, the Lynches. They were saying also that we can be very involved and choose everything we want, or we can have them go on automatic pilot and take care of stuff for us.
Every once in a while I come across something that I would like to be read at his funeral or things that I might prefer. It sounds so strange, but we collect that stuff now and then hang onto it so we can use it, make it a personal ceremony as well.
NV: Some things that we've learned are about being supportive to people who are going through hard times. It is just that idea that you don't need to fix it for the person.
Most often, when people are going through something that's really difficult, you want to fix it. You feel awkward, you feel like you're uncomfortable, so you immediately want to have that thing -- maybe that's an American thing -- real quick, something to put a Band-Aid on it and make it go away.
But if you listen to people who are in pain, that's really not usually what they're asking for. Most people who are going through a tragedy of some kind are aware, and they're not that na´ve to think there's a quick fix. Sometimes they just want to have someone listen and to accept the fact that something sad has happened. And that might just be what it is -- just sad.
That was a journey for us and for our families and for our friends, just to learn how to deal with that type of tragedy.
To be unafraid to take it on directly?
AV: Yes, you need to take things on directly. I don't want to give lessons on life, but you have this idea of how your life will go, and you try to plan things, and at some point life will begin happening to you, and you'll have to deal with what has happened to you.
Those can be amazing, wonderful things, and those can be really tragic, difficult things, and you don't have control. We need to do the best that we can to deal with things directly and to cope with each other, talk with each other, and that's what we've done.
What do you want people to know about your boy?
AV: He's one of the rare teachers, great teachers of the world. People that day to day come into contact with him, we say, "This is a special day for you, because you may not ever come across a child like him again."
NV: I think, too -- and this is a message that sometimes angers me -- he clings to his life. I mean, he has a will to live. And I can't think of anyone who I have known who has a greater reason to give up. He has everything going against him -- you know what I mean -- besides knowing that he's loved. But he has all of these disabilities and these problems, and he still hasn't given up.
There's days I want to throw in the towel, and I've got all of these other things going for me, and he's the one who says, "I'm not giving up." And it's an annoying message to me because I want to be like, "Is this life this great that you are not going to give up?" And it's scary but also a really loud message, you know, about maybe how precious our time is.
The following interview was conducted two months after the Jan. 25, 2007 death of their son, Anthony John Verrino.
Would you talk me through the days leading up, in terms of the baby's death?
AV: It will be hard.
NV: I can do it. Just give me a second.
He declined. Almost regularly throughout his life we had these dips, peaks and valleys. So if we look back, we know this was worse than he'd ever been, and we probably could sense that this was it.
It was so hard because we had been in those places before, so we had to keep kind of a stiff upper lip, like if and when he pulls through this next bit, then we need to be prepared to care for him after.
So we were watching this decline, knowing that it was serious, but in the back of our mind kind of holding a little bit of hope -- I don't even know if "hope" is the right word; maybe just the understanding that he might come through it and then having to be prepared for that, too.
So before he passed that week, I took a couple days. I'm working part-time, and I took those days off so I could stay home with him. I just knew that I needed to be close because he was suffering with so many seizures, and he wasn't eating, and you could sense with his body that he just wasn't comfortable and wasn't himself. I stayed home for a couple days, and then I needed to get out.
The day that he actually died, I went to work -- I'm out of the house for three hours -- and Anthony decided to come home early that day and be there. Then the neat thing about that is typically when Anthony comes home from work I'm home, so the three of us are there together, or we may have visitors. But that day he got hours alone with the baby, so he could spend time with him.
Then we had a really quiet night, which is also odd for us, because we had increased nurse visits; we had increased help, so my parents were over a lot, my sister would drop in. But on the Thursday that he died -- quiet. The phone doesn't ring all evening. We're home with him together. The three of us spent a lot of time on the couch, just --
AV: Right here.
NV: We could tell that his breathing was declining, and it was such a mixed feeling because his suffering was so great. ...
And we took him back to our room and put him in his pillow right between us, and we finally fell asleep. And he had one of the baby's feet, and I was holding a hand. And I fell asleep and had earplugs in because his oxygen -- the nasal cannula are so loud.
But somehow my son, who doesn't make noise, woke me up through my earplugs, and when I looked at him I could see that his breathing slowed. And then, I can't explain -- he's had every seizure in the book; I've heard all sorts of things, cries and noises and stuff, but I've never heard that sound this time. And I was holding his hand, and then I had my hand on his chest as he was taking those final last breaths. And then to watch him go so slowly and to take those final last breaths, and in the kind of blue moonlight coming through the window, and his face was so peaceful, and I'm just feeling his chest, and almost 30 seconds between the last three breaths. So they came really slow, and I kept thinking that he would start breathing again. The nurses had prepared me for that as a possibility, that the slowing can also speed back up. Knowing our boy, you don't count him out, you know?
But as I watched that breathing, and it seems like slow motion, but actually goes kind of quick, and, you know, within a minute or so, I knew that was it. And it was very peaceful. I mean, we really couldn't have wished for it to go better, considering his situation. We were both together; we were with him; he was comfortable. He was finally at peace. All of the seizures were done. That really kind of was a good death in that way.
It was hard to watch him suffer. It was unbelievable how long he stayed in that body considering all the things that he went through. So we did feel some relief for him, that he was free from that, but that was a hard, hard thing to accept, you know, that he was really gone.
He looked beautiful.
AV: Yeah, he was so peaceful when he passed away.
NV: And right between us. ...
AV: Yeah, he was right --
NV: I mean, just parked right between us, where -- right where he belonged, you know.
Did you wake Anthony?
NV: Yeah, I woke Anthony up. And the three of us -- and we sat there, and we knew. This is also where the preparation did help, because we knew that we didn't have to make a phone call immediately. We knew that we could take time to let things settle in our own heads.
So the three of us spent some time together. We held him and told him how much we loved him and how proud we were of him. And I think then after that we called our parents, and my sister who drove in from Kalamazoo. We knew that we had time to have people over. It ended up working out nice that all of our close family members were able to come to the house and say their goodbyes to him before we had the Lynches take his body. So it helped. I think everyone had a little alone time with him in that way.
And then eventually we called Tim [Lynch, Jr.] and his group to come out to take Anthony. That was one of the hardest parts. Having his body leave the house was really hard. Even though we knew this was coming, we had the advanced warning, we knew that ultimately it was the best thing for him to not be suffering anymore, our logical mind gets it, you know. But it's hard because we loved the soul inside the body, but I loved that body, too. And it was hard to let go.
And it was comforting to know that it was a friend, Tim, that I could hand my son over to, someone who I've known and trusted since I was a freshman in high school.
I put him in his dinosaur pajamas, my favorite. And we wrapped him up in the blanket that he actually passed in -- he needed warmer and warmer blankets as he got sicker, so it's [a] beautiful, thick fleece blanket. So we had him all swaddled in that, and we talked to Tim in the hallway about how he passed. I can't remember a lot of the things he asked us.
AV: He just gave us both a big hug, and he started to cry.
NV: And we knew we could trust him. ... So we actually carried him out to the car to put him in, which felt more normal. I think we were so really emotionally exhausted, and even physically, at that point, getting tired. It was probably around 6:00 in the morning. So he ended up helping us put him in the car, and then they took him. And we stood at the end of the driveway alone for a while, just crying.
How did you decide on the open casket? Did you talk about that?
NV: No. Because he's beautiful.
AV: No, it had to have been. That wasn't even -- I don't even think --
NV: No debate, no contest.
AV: No, it couldn't have been anything but an open casket.
NV: No, not with his suit on. Are you kidding?
AV: And his little tie and his beautiful cute face and --
NV: Oh, he looked like such -- he looked fantastic. I mean, I was shaking before I saw him the first time in the casket, and then I'm like, of course, of course. He looked beautiful to me. I mean, there he was.
But you weren't anxious before seeing --
NV: Not so much as just sad.
AV: Yeah, I was sad, too.
NV: You know, just that the moment was really here, and suddenly you could kind of touch and see in front of you --
AV: You just don't want to think about, you know, walking in, and I thought, I just don't want to see him that way; let's take him back to the house, and we'll just sit on the couch, and everything will be fine. But no, we went in, and then we saw him, and he looked so great, you know? He really did.
NV: He really did. It almost makes you smile, because --
AV: Yeah, it could have been an awful moment, you know? And I'm sure maybe for a lot of people those moments could be so terrifying and scary. But having thought of how sad it could have been, and then seeing him, we cried a lot, but it was kind of happy, too, just because he looked so great, you know. It was just comforting -- "Oh, there you are. Hey, look at you in your tie," you know? He looked great.
NV: I even think the Lynches prepared us well even for that, because they said when it came down to seeing him, they said that a lot of times with people just offering their condolences, they will say things like, "He's not in the body anymore," or "Your son is already gone." And I really do believe that there was more to my son than his body, but I really loved his body, you know? It's an important body, not just a shell or whatever the clichés are. It's really his body, and I really loved it, and I washed it and dressed it and took care of it for 26 months.
AV: It was. It's funny, because you're happy to see people, but of course we're grieving, so we're sad at the same time. And we're crying with people at the same you're trying to be hospitable.
So it's kind of a strange balance where you see someone approach you, and I'm grieving, and at the same time I see that this person looks uncomfortable, and I want them to feel as comfortable as they can because they were nice enough to come. And it's a lot to balance and think about. It is a fine experience, I guess. But it's just a strange grouping of emotions and things to think about with people.
NV: I even think it was more than a fine -- I thought in some way it became almost happy too. I was happy to see people. And a lot of people had been on this roller coaster with us, even if it was from a distance or even if they were just still trying to understand what was going on. And a lot of people I know really care about us and really cared about Anthony, and so then to just have a good majority of them together in the room with us really was kind of joyful for me, like I really felt happy from some of that.
AV: Yeah, I agree. Just to see how many people he touched, it was almost kind of a sense of pride to see, wow, he touched all these people. I would never think of seeing that person today, and there they are, and honoring my son's life. It was a good feeling to have those folks come and pay their respects and be compassionate and be supportive.
I guess that's the point. You're somehow buoyed.
NV: It certainly was, for me, a reprieve. There was a break in the hard part of grieving during those hours. I didn't feel like I was staring at my son in his casket and just pouring my heart out. My focus had changed a little, and I was able to share him with people and share stories about him with people and look at his photo albums and show people things in the pictures and tell them things that we did together, and that just kind of builds into a happier feeling.
AV: I was happy we had carried Anthony. That meant a lot to me. One of the questions posed was, "And who would you like to be pallbearers?" And I thought, oh, I don't really want anyone to do it except the two of us. I was glad we did that, to carry him into church.
NV: We were really tired by that point. We were crying the morning of the mass, and it was like my body couldn't cry anymore. No sound would come out; there was nothing left. I guess maybe that's in some way, you know, part of surviving it. Maybe that's just -- the body says, "Enough."
Twenty-six months of extreme ups and downs, and then the suffering and the worries and the watching him suffer and medicating and sleeplessness -- this was the end of a long journey, and after those three really important days, I think I was just spent. And the one thing I really wanted to do was the eulogy. I wanted to say those words to the people who loved us and loved Anthony. But mostly I wanted to say it for him.
And from the church to the burial, is that a clear memory? And what did that mean to you, again, carrying him there yourselves?
NV: We chose to ride to the burial with the casket -- with Tim and just the two of us. We had given Tim a CD that we used to play in the morning with the baby, and we played that. It's actually a fairly upbeat song, "The Littlest Birds" by the Be Good Tanyas. It's upbeat enough that it really reminds us of our son, and the message inside of it is perfect. So we had that on repeat as we traveled, and it was good for us and in some ways was a little uplifting. I couldn't cry anymore; I just couldn't cry. And I don't know if it was almost the happiness that he really wasn't suffering. I mean, like the realization kind of did sink in: He really isn't suffering today.
View Nevada's eulogy for her son,
AV: Almost instead of saying, "He's been gone for three days or five days," we would say to ourselves, "He hasn't had seizures in five days."
NV: When we traveled with Tim he told us if we wanted to see the procession, we can turn around and look. We hadn't noticed how many people had joined the procession to come to the burial, and that was really touching. There were so many people coming in, and they allowed everyone to surround him at the burial, which was also really nice. It felt good to have everybody there to see where his body was being placed.
And did you decide you'd lower him yourselves, too?
AV: Yeah, we decided right then at the cemetery that we would lower him with our fathers.
NV: Yeah. I think that was a perfect choice. Dads like to protect us, so that was a good role for the two of them, and we wanted to be involved.
Was the lowering into the ground for you --
NV: For me it wasn't as difficult as taking his body from the house, putting it in the car or closing the casket. For me, once the casket was closed, that part was closed, and I kept focusing on the fact that the part of him that wasn't just his body was really gone. So at that point for me it was his precious remains, you know? A place to go back to, but not him. So there's the missing of him, knowing that now he's out of my reach. But for me, that part was more his remains and a reverent moment, but not as painful for me as the other two.
How are you coping? You come into the house, and you feel his physical absence.
AV: It's hard. It's hard. You know, the house is quiet now; the oxygen concentrator doesn't run. And he was always here right on the couch -- right here. For me it's harder to come home from work. I'd always come in the door, hang up my coat and then --
NV: Wash your hands.
AV: Wash my hands, peek around the corner, and, you know, there's my boy. And that's hard. That's real hard.
NV: The thing about Anthony, little Anthony, is that he was really larger than life. Anyone who had the chance to know him, he was like a super-sized spirit just in this little tiny body, and his absence is huge.
We feel it every time we walk in the house or walk down the street without him. It's hard, but it's exactly what I told him that I was willing to go through, you know, the day before he died. This is what I asked him to let me do, because it wasn't right for him to suffer anymore. And this is hard work, you know. This grieving is hard work. But he was worth, I mean, every minute. I'd do it over in a heartbeat. He was amazing, and I don't know that his absence will ever be filled so much as that we just, you know, learn to live with it and enjoy other parts of our life.
[And how do you mean that?]
I think to honor him; that's the thing we try to focus on. He was a two-year-old, and I mean, if you watch a two-year-old, just watch them do things that Anthony could never do, they're so enthusiastic! Everything that happens is, like, amazing! The world is just like wonderland; you want to touch things and taste things and try things. I'm going to try to be the two-year-old he couldn't be in taking those pieces, trying to enjoy the wonderful parts of the world. And I think I just have to carry that. I certainly have learned enough from him to keep trying to find the good things.
In terms of what you describe, Nevada -- you said "the hard work of grief." That's an interesting phrase.
NV: I think by describing the grieving as hard work, it's appropriate, because for us and given Anthony's situation, we were doing this along with him as he declined. We had to really start thinking about how we would handle it, and then we would get glimpses of what our life would be like without him, or we would allow our mind to wander and think about how it would impact us or how we would find a way to go on.
I don't know that it would be easier, but it certainly would be a reaction to just try to suppress it, like everything will be fine and we are going to be OK -- this is how it's going to be. Life is just messier than that. And it just isn't a black-and-white issue.
On the one hand, I'm weeping because I can't believe that I would lose this person I love so much; I can't imagine the world without him. And then on the other hand, I'm really joyful -- and there's no other word but "joyful" -- that he's not suffering, and that all mixed together is messy. And that's what grieving is like. That's what it was like for me, and I think by at least just acknowledging that messiness and acknowledging those feelings along the way, I think that's the hard work.
And I don't think we're done. I mean, don't get me wrong. I think we have a lifetime of hard work. But again, we know it's worth it. Already going into it, we know that just having the chance to have lived with our son and shared his life and been able to learn what we learned from him, we're rich. But we just will have a lifetime of trying to maybe figure out or acknowledge and deal with those feelings as they come up.