Being Mama: Alissa McDonald
After her daughter was diagnosed with a life-threatening condition, photographer Alissa McDonald made it her mission to capture the highs and lows of countless other families affected by pediatric illness.
A few days before we spoke, Alissa McDonald photographed a baby boy taking his last breaths. “He’d been incubated his entire life, and I shot his photos on Thursday when I heard that he wasn’t going to be eligible for surgery, and I said to his mom, ‘When are you taking him off of everything?’ She said, ‘Saturday’, and I said, ‘Okay, do you mind if I come back? Because I would love for you to have pictures of him without all of that.’ And she just broke down crying, saying ‘Wait, you can come back? Are you kidding me?’ And I said, ‘This is what I do with my day’. She’d never been able to kiss her baby’s cheeks because they’ve always been covered in tape, and I have the ability to take a picture of that. Yeah, I’ll be there.”
As the founder and lead photographer of The Mark Makers, Alissa takes pictures of families affected by pediatric illness. Some of the children she meets are in palliative care. Others are in recovery. She captures everything from birthday cake smashes for cancer patients to joy-filled discharge days and heartbreakingly beautiful moments, and she does it all free of charge – sometimes for 22 families in one day. “And I wouldn’t be able to do that – to handle those moments or to even know how necessary that is – if I hadn’t been in that situation myself.”
Five years ago, Alissa was taking very different photos – of multi-million-dollar houses, complete with $20,000 bathtubs – for the luxurious likes of Architectural Digest magazine. She had an elder daughter, Presley, and a newborn with inexplicably severe diaper rash.
“Riley’s pregnancy was very normal. Her birth was normal, we had no idea everything was wrong,” says the San Jose, California local. Two weeks after bringing her second daughter home, a pediatrician called with the results of Riley’s newborn screening test. “She came back positive for Severe Combined Immunodeficiency Disease (SKID), and I’m there on my laptop Googling it – because that’s what you do – and ‘the Bubble Boy disease’ is coming up,” Alissa recalls.
“I remember typing in ‘rash’ at the end of ‘Severe Combined Immunodeficiency Disease’and it being exactly what was happening on her. Okay, this is what a diaper rash would look like if you didn’t have an immune system to fight it. Looking back, I had no idea what that was going to mean, but I knew that there was something very wrong. I was so afraid to stand back up and go and look in the crib, I thought that she was just going to be gone.”
Riley was admitted to UCSF Medical Center where she would remain for seven months. She needed to be kept healthy enough for a bone marrow transplant – the only known treatment for children with SCID – and in preparation for this transplant, the plan had been for her to undergo a small amount of chemotherapy. “Then she got sick so we had to hurry everything up,” says Alissa. “I ended up being her donor and we had to do so much chemo, so many months before they wanted to.”
All the while, Alissa’s good friend, Meg, was taking photographs. “The view of our journey through Meg’s talents has brought me and so many others an unspeakable amount of strength and gratitude,” Alissa writes on her site, and tells us about another mother and daughter, also dealing with a SCID diagnosis, who were staying at UCSF during those seven months. “I photographed her discharge,” says Alissa, who then photographed a few more families referred to her through a social worker at the hospital. “When Riley was home and healthy I went back to my regular job, and it was one of those pipe dreams. When I look back now, I was just too afraid to chase what I actually wanted to do. And I had bills to pay. I hadn’t worked in seven months, I couldn’t start a non-profit.”
Riley was well for three years following the bone marrow transplant, until a common cold struck her down. Instead of recognizing her cold as the invader, Riley’s new immune system attacked her muscular system. As a result she couldn’t walk, move her legs, swallow or talk. “It was awful. She was on life support and in a wheelchair for a long time after that.”
At this point, Alissa couldn’t bring herself to photograph another $20,000 bathtub.
“After Riley got sick again it was like, what I can do is of better use elsewhere and puts me in a position where I’m with my people all the time. I’ve never met a stranger in the hospital. They’re all me on some form of my journey – whether they were just diagnosed and I can walk in as someone who feels like the senior on campus talking to the freshman, saying ‘Hey, this is where it’s going to go’, or somebody who’s been in it for five years and we can laugh and joke. It’s just so nice.”
When asked what a ‘normal’ day might look like for Alissa, she says she lives “two very different versions of normal”. There’s the one that looks quite like that of your average working mother (if there is such a thing), where Alissa makes her girls breakfast and gets Presley off to school. “Riley will either stay home with me, if I’m not shooting that day, or she’ll go to her grandparents and then I go off to hospitals and do shoots.”
Alissa’s ‘other normal’ is taking Riley’s temperature every hour and rushing to hospital the moment she has a fever, where she’ll pass families in the hall that she’s photographed in the days before, “Waving and being like, ‘Hi! I wasn’t kidding, I’m just like you!”
Alissa and her daughters’ father, Chris, are no longer together – an arrangement that Alissa says works in their favor. “We were best friends from the time we were 10 years old, and started dating in our 20s, so we really were those people who should have just always stayed best friends,” she says. “Whenever Riley’s in the hospital, Presley is with Chris. Chris and Presley have this bond and just get each other, and Riley and I have one too, so Chris and I help each other relate to the other one. I feel like we’re so lucky that we’re not together because we pick up on things. I’m not out there advocating, ‘hey everyone out there with a sick kid, get divorced, it’s better!’ That’s not a thing. But for us, it works.”
On a day that doesn’t end with Riley in hospital, Alissa finishes her work, picks her girls up and then it’s dinner and off to bed at 8 o’clock. “I used to stay up late at night editing photos. I’ve now realized that that is not good for me, to look at all those images right before bed. And so I don’t touch them before bed. I go to bed early, and I wake up early.”
She’s talking 5am early.
“I do that because if I don’t then I don’t have time to write in my journal and meditate and get myself in a space to be able to do what I do. Probably six months ago I realized that if I really want to do this and still be able to be a good mother and not be emotionally drained and tapped out, I have to take care of myself. And the only way that I’ve found to do that is by waking up before the sun and before my girls and having that time in the morning for me.”
Alissa says her recent photography sessions have been especially “heavy”. “There are times when I’ll go and do a palliative shoot and I’ll come home and they’re arguing over some toy and I just want to scream, ‘Girls, you’re fighting over this toy and I just went and took pictures of two little kids, and one of them was kissing their baby sister goodbye for the last time, and you’re going to argue about this toy?’
“But I very quickly realize that that’s life, and that’s how life works. I have to be able to be just a mother to them. And that was something that I really did, within the past six months, realize. Hello, you need to get yourself in check on this because who you are for all those other people, you need to be able to be for yourself and for them. And so that’s what started the whole getting up early thing, and setting my head right for that.”
Alissa and Chris recently pulled Riley, now five, out of a mainstream kindergarten as she was frequently getting sick. “There was a time that I wanted her to have a normal life, and I grieved that her life wasn’t going to be normal, and I’ve recently gotten over that,” says Alissa. “I want her to have an extraordinary life, and that might not mean public school for her. That might mean moving to Silicon Valley where there’s so many private school programs where she can go to school two-to-three days a week and also be home-schooled. There are so many options out there for her.”
Back on the business front, The Mark Makers operates on small donations and Alissa is hoping to hire help with administration and fundraising so she can expand her offering. Word of her work has got around, and hospitals across the country are keen to have Alissa (and her camera) on their wards.
“I have people ask me all the time, ‘why would you do this? Why? If this is already your life, why do you put yourself in this situation to see all this stuff’. And I’m like, because I see it. And I need other people to as well. And I know I can show this in a light that will make people see it, and make them see that there’s beauty in it. So when people ask, how could you do this? My response is always, how could I not?”
To show your support for Alissa visit the The Mark Makers.