I kiss his head one last time to remember how the moment feels and smells. I know this is the last I will see this little soul inside its body.
— Ryder's Aunt Robin

The Last Time

It is a warm October day as the three of us walked up to their house. The once-tidy nurse with perfect hair, skin, and nails is now a shell of her former self.  Her hair is wrapped in a messy bun; no make-up and pajamas at 3:00 in the afternoon have become her life. The house is packed with people. Her friends, family, and nurses filled the room, giving us uncomfortable stares as we enter:  it only increases our anxiety.  

The whole place smells of medical equipment and candles burning in an attempt to cover the noxious aroma. She quietly says, “He is in my room," and we turn to head up the small narrow stairs without greeting any of her companions. We walk straight back to the master bedroom.

I can hear The Lion King playing from the flat screen TV on the dresser and a tiny fragile body lays in an enormous cherry wood sleigh bed. 

He is naked from the waist up because his medications make him so overheated he can't stand to be in clothing. He does not rise to greet us. The tumors in his legs have made walking a painful impossibility. The morphine has made him very uncomfortable and he constantly shifts. It looks like he wants to climb out of his own skin. He slowly turns his head as we come in and his face is worse than we have ever seen it. 

After the radiation and chemo stopped working, his body started swelling. As the lumps grew, they made his face unrecognizable. His eyes are so puffed and swollen that he cannot open them. He lays and listens to us, annoyed by all the excitement and I can tell that part of him just wants to be alone. His mouth and tongue are just one giant sore and are swelled to the point that his tracheotomy is his main pathway for air. I can tell this is where the smell of infection is emanating from. He hasn't eaten solid food in nearly 10 months, only formula that can be introduced through the port that protrudes from his side. Because of the chemo, his little body is white and pale, he is underweight, and he hasn't been outdoors for long periods of time in months. He rubs the trach collar around his throat and I can see there are several scars on his neck where the first round of tumors grew and were removed in April.

We stand for a little while and talk to him, rub his hands, and remind him of who we are. We listen to the movie with him, while his mom tells us of the plans for his care for the next few weeks. She refuses to give us even a few moments alone with him but we settle in anyway. My sister sits down first to lean in, tells him how much we love him, and how heaven will be beautiful. She calls him ‘our little angel’ as she stands. I see the tears in her eyes and feel the pain I see in her expressions.

I lean in next and tenderly kiss his virtually ethereal bald head. He leans in as if he knows who I am and we share a moment of silence. As I tell him about how my kids will miss him and that our family will not be complete after he goes I am not sure he understands what I am saying. He has no way to communicate besides grunts and points and has no significant way to demonstrate any understanding. It's been a year since I heard his sweet voice, and I will never hear his laughter again.

I kiss his head one last time to remember how the moment feels and smells. I know this is the last I will see this little soul inside its body and sigh a heavy breath as I stand, with tears now streaming down all of our faces. We had been there a few times to visit since they sent him home from the hospital on palliative care but never had we been so sure the end was coming.

My Mom turns to sit with him now, giving a few gifts and a sack full of birthday cards, reverently saying things like, “We love you very much, Ryder,” and comforting him in a way that only a loving grandma can. She began reading out loud the classic Dr. Seuss book I Had Trouble Getting To Solla Sollew, one of our family favorites and Ryder seemed to relax a little.

His breathing deepens with the rhythmic pattern of the book. We sat with him and talked about his dad - my brother Kyle - telling him stories about his dad racing motorcycles and of his dad’s love for him. We stay until it is time for Ryder’s next round of medications and then decide it’s time we end our visit. My mom leans in, kisses him as she stands to go, but stops… and leans in very carefully to whisper one last private sentiment in his ear.

We all say our goodbyes as we hesitantly back out of the room. The house is quieter than when we arrived, the muted excitement from our visit has worn off, and it is just the nurses in the living room now as we walk back down the stairs. They politely smile and say goodbye to us not knowing the full drama of our back story. We finally reached the front door and in my head I am screaming “...Thank God!” The sadness, the awful smell, the tension in the house have been so overwhelming that I emerge with my head pounding and my chest feeling tight.  As we’re in the car and pull away from the curb it takes us all a few minutes to regain our voices, even if we could have spoken I'm not sure any of us knew what to say. At that point, we were struggling to breathe.

A few blocks away I asked my mom, “What did you say to him?”

She responded, “It's OK to let go now. If you are ready, just let go”. 

That was the last time I ever saw my nephew.

He died just 16 days after his third birthday, on Halloween of 2011. While I was trick or treating with my children, he was rocking with his mom and taking his final breaths. In that moment my family changed forever.

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