Friday night we found ourselves in the ER once again…for the third  weekend in a row. Anytime Riley spikes a fever or presents with symptoms  it’s straight to the ER for labs/cultures/observation…for answers…well  not so much answers…that’s simply too much to ask…more like clues. The  main question is always the same…is her immune system attacking the  virus/infection as it should…or HER…as it should not. It’s a lot of  sitting around waiting…it’s familiar…watching her sleep on a gurney is  nothing new. It’s a time when I have nothing to do but face what is  right in front of me and find peace with the reality that this time…this  time might be the time our worlds are turned upside down once again. I  am never more present then when I am in a hospital room and with that  comes a lot of clarity. It’s a lot of deep breaths…it’s a lot of honest  “check-in” time. It’s taking a real look at how I am ACTUALLY doing with  all of this…with all I carry. It’s staring at her and seeing all the  other kids I work with as well. It’s knowing that of this pediatric  illness community we are still one of the lucky ones…that the mother of  my days prior palliative shoot would give anything to be sitting where I  am as opposed to making funeral arrangements. It’s looking at her and  thinking of him. It’s releasing attachment, expectations, fears. It’s  sitting with pain, giving it the respect it deserves and being willing  to witness it and let it leave. It’s learning to meditate with the  interruptions that come with emergency rooms…vitals and doctors and  screams of agony from down the hall. It’s begging that as she rests that  my mind does too so that when she wakes I am able to be the calm and  nurturing mother she so desperately needs. It’s hoping her body doesn’t  fail her and my mind doesn’t fail me.   She just slept. As everyone clomped in and out, flicking lights on and off, talking and planning, poking and proding…she just slept. Through all of it. While grateful she was resting and living up to her nickname of “Possum”…I started to worry that she wasn’t ok. And not just that but that I wasn’t either. Shit. “One at a time ladies” my mind basically shouted at me. At that moment a tech walked in to transport us to X-ray…I hopped up from my chair and curled up at the foot of her bed like a dog, burrowing my head into the crook between her knees and belly. As we twisted down the halls she still just slept. Nothing so much as her breath changed or showed any sign of disrupted slumber. Not the bright fluorescent lights flickering overhead, not the alarms and codes, not the franticly hollering old lady, not the giant bumps and floor transitions, not the “awwwwwwww’s” let out by the strangers as we passed by. Nothing. He parked us outside of Radiology in the hall to wait…I just laid there staring at her…so peaceful in a place with nothing peaceful about it. I snuggled in closer…I wanted some of that peace. All that peace I’d been working towards while she rested she had achieved. Share, girl. It worked. After about 15 minutes of waiting and just watching her…I was mesmerized…I wasn’t sure she was ok but I knew then that I was which meant I could handle whatever came next. She didn’t need to be ok…that is not her job…that is mine.   When they came out to bring her in she was startled, she was tired…not interested in waking up and definitely not enthused about having to stand for X-Rays yet again. She started crying…that “not quite awake/screw all of you” cry. The cry turned to wails as I had to take off her necklaces and shirt…by the time it was time to stand in front of the X-Ray machine she was sobbing. A defeated sob. She sounded exactly how I had felt moments before. Just done. My first instinct was to tell her “It’s ok…you’re ok” I stopped myself. Who was I to tell her what I didn’t know. I know when I feel like that the last thing I appreciate hearing is “It’s ok…you’re ok.” It’s not ok…and she might NOT be ok so I’m not going to tell her that…I pulled every ounce of love and calm I’d just absorbed from watching her in the hall and said ”I know kiddo, this sucks…it will be quick and we can get right back in bed…I’m so sorry, I know this is not fun, I love you.” She nodded her head and wrapped her arms around the machine mimicking a bear hug as instructed. I walked to stand behind the partition (because you know…radiation exposure…insert eyeroll here) and watched as she silently wept while doing exactly as asked. She followed instruction again grabbing the bar above her head for the second X-Ray…her whole little body shivering from upset. As promised it was quick, I swooped her into my arms as soon as I could and we crawled right back onto the gurney in the hall to await our ride back. She settled down in my arms almost immediately. She’s so good at bouncing back…or bottling emotions…I’m not sure which. I certainly know which it is for me and it’s the latter…not what I want for her. “Possum?” …”I’m ok Mom.” “Hey baby…sometimes it’s ok to not be ok…okay?” We locked eyes, she let out a breath and then she closed them again…right back to peaceful sleeping.   We were out of there a few hours later, X-Ray was clean…labs showed no signs of her immune system going rouge and her general disposition had improved. These moments have an incredible way of cracking us wide open…it’s raw and painful and I’d be bold face lying to you all if I kept up the “I’ve got this” face all the time. I curled up next to her again that night, taking in every inch of her face, calming myself and taking the advice I’d given to her “It’s ok to not be ok.” Days later I’m close to feeling like myself again, the version of myself that is actually “ok”…this post isn’t to ensue worry from followers, friends or family…it is to share with all the other parents…parents like me…parents who understand every word of what I write as if they were their own that sometimes…it’s ok to not be ok.

Friday night we found ourselves in the ER once again…for the third weekend in a row. Anytime Riley spikes a fever or presents with symptoms it’s straight to the ER for labs/cultures/observation…for answers…well not so much answers…that’s simply too much to ask…more like clues. The main question is always the same…is her immune system attacking the virus/infection as it should…or HER…as it should not. It’s a lot of sitting around waiting…it’s familiar…watching her sleep on a gurney is nothing new. It’s a time when I have nothing to do but face what is right in front of me and find peace with the reality that this time…this time might be the time our worlds are turned upside down once again. I am never more present then when I am in a hospital room and with that comes a lot of clarity. It’s a lot of deep breaths…it’s a lot of honest “check-in” time. It’s taking a real look at how I am ACTUALLY doing with all of this…with all I carry. It’s staring at her and seeing all the other kids I work with as well. It’s knowing that of this pediatric illness community we are still one of the lucky ones…that the mother of my days prior palliative shoot would give anything to be sitting where I am as opposed to making funeral arrangements. It’s looking at her and thinking of him. It’s releasing attachment, expectations, fears. It’s sitting with pain, giving it the respect it deserves and being willing to witness it and let it leave. It’s learning to meditate with the interruptions that come with emergency rooms…vitals and doctors and screams of agony from down the hall. It’s begging that as she rests that my mind does too so that when she wakes I am able to be the calm and nurturing mother she so desperately needs. It’s hoping her body doesn’t fail her and my mind doesn’t fail me.

She just slept. As everyone clomped in and out, flicking lights on and off, talking and planning, poking and proding…she just slept. Through all of it. While grateful she was resting and living up to her nickname of “Possum”…I started to worry that she wasn’t ok. And not just that but that I wasn’t either. Shit. “One at a time ladies” my mind basically shouted at me. At that moment a tech walked in to transport us to X-ray…I hopped up from my chair and curled up at the foot of her bed like a dog, burrowing my head into the crook between her knees and belly. As we twisted down the halls she still just slept. Nothing so much as her breath changed or showed any sign of disrupted slumber. Not the bright fluorescent lights flickering overhead, not the alarms and codes, not the franticly hollering old lady, not the giant bumps and floor transitions, not the “awwwwwwww’s” let out by the strangers as we passed by. Nothing. He parked us outside of Radiology in the hall to wait…I just laid there staring at her…so peaceful in a place with nothing peaceful about it. I snuggled in closer…I wanted some of that peace. All that peace I’d been working towards while she rested she had achieved. Share, girl. It worked. After about 15 minutes of waiting and just watching her…I was mesmerized…I wasn’t sure she was ok but I knew then that I was which meant I could handle whatever came next. She didn’t need to be ok…that is not her job…that is mine.

When they came out to bring her in she was startled, she was tired…not interested in waking up and definitely not enthused about having to stand for X-Rays yet again. She started crying…that “not quite awake/screw all of you” cry. The cry turned to wails as I had to take off her necklaces and shirt…by the time it was time to stand in front of the X-Ray machine she was sobbing. A defeated sob. She sounded exactly how I had felt moments before. Just done. My first instinct was to tell her “It’s ok…you’re ok” I stopped myself. Who was I to tell her what I didn’t know. I know when I feel like that the last thing I appreciate hearing is “It’s ok…you’re ok.” It’s not ok…and she might NOT be ok so I’m not going to tell her that…I pulled every ounce of love and calm I’d just absorbed from watching her in the hall and said ”I know kiddo, this sucks…it will be quick and we can get right back in bed…I’m so sorry, I know this is not fun, I love you.” She nodded her head and wrapped her arms around the machine mimicking a bear hug as instructed. I walked to stand behind the partition (because you know…radiation exposure…insert eyeroll here) and watched as she silently wept while doing exactly as asked. She followed instruction again grabbing the bar above her head for the second X-Ray…her whole little body shivering from upset. As promised it was quick, I swooped her into my arms as soon as I could and we crawled right back onto the gurney in the hall to await our ride back. She settled down in my arms almost immediately. She’s so good at bouncing back…or bottling emotions…I’m not sure which. I certainly know which it is for me and it’s the latter…not what I want for her. “Possum?” …”I’m ok Mom.” “Hey baby…sometimes it’s ok to not be ok…okay?” We locked eyes, she let out a breath and then she closed them again…right back to peaceful sleeping.

We were out of there a few hours later, X-Ray was clean…labs showed no signs of her immune system going rouge and her general disposition had improved. These moments have an incredible way of cracking us wide open…it’s raw and painful and I’d be bold face lying to you all if I kept up the “I’ve got this” face all the time. I curled up next to her again that night, taking in every inch of her face, calming myself and taking the advice I’d given to her “It’s ok to not be ok.” Days later I’m close to feeling like myself again, the version of myself that is actually “ok”…this post isn’t to ensue worry from followers, friends or family…it is to share with all the other parents…parents like me…parents who understand every word of what I write as if they were their own that sometimes…it’s ok to not be ok.

Cancer and A Cake Smash

Cancer and A Cake Smash

Everything that I shoot is heavy and I get that. I don’t do family sessions in flower fields with coordinated outfits, I document pediatric illness. All of my subjects are deep in the trenches of their battle…there is no glamour to any of it but there is reality. And let me tell you…while much of that reality is more harsh than many experience in a lifetime…the beauty…the beauty that comes from simple moments that so many of us miss simply because life moves quickly on the outside…but on the inside…inside those hospital walls those moments are not missed. Mundane is cherished. Love is magnified. Gratitude is palpable. Each and every moment is lived either as though it is a gift or the last.

One of those such moments was a “birthday” celebration I took part in earlier this year. A first birthday celebration to be exact…you know one of those big ones that families throw huge parties for, decorate with themes and send out customized invitations. This one was a little different.

Zyan turned one.

Zyan spent the majority of his first year of life living in isolation at UCSF.

Zyan is not sick.

Zyan is a perfectly healthy, bouncy and more adorable than words little boy.

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But here’s the thing about pediatric illness…it happens to the entire family. Zyans older brother Kaysan was diagnosed with cancer at the age of 5 when Zyan was merely a baby. The life saving treatments he would undergo over the next year left his parents with a choice. Either Zyan was to remain IN the room 24/7 under the very same isolation precautions as his brother OR he would be out of the room and unable to visit. This leaves two young parents with a choice…to split the family or to not. They chose to fight as a family. They chose to hunker down together…day in/day out…the four of them in a single room with a newborn and a 5 year fighting for his life.

The fight of pediatric illness is not just a fight for the child whom bears the illness…it is a fight for the parents and the siblings. This family fought and I am beyond blessed to have documented moments for them from dire times in the PICU to a birthday celebration for Mr. Zyan.

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Brittany (the boys mother) deeply wanted a cake smash shoot for her little mans birthday…she’s a Starbucks fanatic and had dreamed of that themed birthday celebration as many mothers do. While a big party was not an option we came together to make a version of that. Hoards of nurses were present to sing happy birthday and the boys both opened gifts and basked in the glory of toys and attention.

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She ordered a more lifelike version of a frappachino cake then I would have ever dreamed possible, we taped white hospital sheets from the walls with medical tape and strung handmade banners across in coordinating colors.

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In true “cake smash shoot” fashion the child was not nearly as willing a participant as the adults but let me tell you…there are few things cuter than a baby crying over the opportunity to destroy a fancy cake.

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Like I said…what I shoot is heavy…but also as the parents of sick children it’s our version of normal…it’s our children's version of childhood…its complicated and heartbreaking and sad but this day…this day was magic.

Super X

Super X

Oh X…this kid has my heart. I work with a lot of families and it isn’t unusual for me to develop a relationship with the parents or kids. But occasionally one comes along that becomes a part of me…a part of my life. Jessica and I had “known of” each other via social media groups for years (our kids have very similar diagnosis) but had never met in person until about a month ago. I was headed to the city for a shoot with Make-A-Wish and saw on Facebook that Xavier had been readmitted…I reached out to her to see if I could come visit and take some photos for them. Within minutes of being in their room it felt like we had known each other for years.

Every family handles pediatric illness in drastically different ways. Mine and Jess’s coping processes are pretty aligned…straight talk, inappropriate humor, and an occasional breakdown with a side of deep breaths. To connect with someone who’s path and personality is so similar to your own is such a blessing and something I will never take for granted.

And Xavier…well that kid…he is a spitfire, a natural in front of the lens and my favorite board game partner (shhhh don’t tell my kids).

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He started Kindergarten this year but has spent the majority of that first month when everyone else is coloring and learning how to stand still in line being poked, prodded and evaluated within the walls of UCSF.

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I believe he is now on his third admission since August…their lives constantly being uprooted. It’s hard. They’re over it but let me tell you…those two make quite the team.

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Jessica is one tough advocate and one gentle Mama. And X…while he gets equally as pissed as Riley when called “brave”…he is. While this little life of trauma was not his choosing he takes almost all of it with a smile.

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When I say they’ve become a part of me I mean it…I was there the other day for a meeting and shoots with other families and popped in to see them. I didn’t realize until I left that I never took my camera out, granted I had photographed him recently (images featured here) but STILL. He lit up when his mom and I came in and I got distracted by our game of leap frog and our “throwing things at each other” war (as I said…the two of us have a lot of fun…see below for our epic race track adventures).

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Our playtime was interrupted when it was time for his nasal rinse…for those who don’t know…they suck. He knows they suck. He hates it. But…there was no fit thrown. His shoulders dropped, his big eyes stared up at his Mom and he muttered “I’m scared”. We came up with a plan. He would hold my hand on one side and the nurses on the other, Mom would do the rinse and when it was all done he could throw as many game pieces as he wanted at me. “I’m scared” he said one more time before taking a deep breath and then just doing it. Now…I know he hates it BUT…

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Sorry kid…you are the definition of both and I love you for it.

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**These Mark Makers sessions are made possible by the generous contributions from our supporters. Please consider joining our mission by donating today.**

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Kaysan Strong

Kaysan Strong

After a long afternoon of shooting I headed down to the PICU to check in on one last family, one I hadn’t met and one I had hoped I would be meeting under better circumstances. You see the PICU…it’s not where you want to be. The halls of UCSF feel like home to me…even the smells are nostalgic like my great grandmothers living room…memory filled in their own musty way. But the PICU…I hadn’t yet been there to shoot…I hadn’t been there since Riley had taken her own turns that landed us on that floor. I’m always surprised at what triggers me, at how fast it happens. The sounds of my feet hitting the cold floor echoed and with each blink I was having to remind myself that she was not there. That she made it out of there. That I was here…and I was here to work. Pull. It. Together.

I approached the room and as I’d done so many times before and scrubbed diligently in the ante room before entering. I could hear the commotion of doctors and parents, the giggling of a child I knew had to be a sibling and a few other voices. The medical team was wrapping up and exiting just as I tossed my paper towel into the bin…we passed each other and I felt the look of “hey I know her”…they looked familiar too, I’m sure they had been a part of our team at one point. You see in the PICU it’s constant…it’s a battle that involves more teams of people than you can even imagine. As I stepped in I spotted the Mom, she rose from the bed and we had our introductions…”I’m sorry, I’m not really sure if you’ll be able to get any good shots.” she muttered as she looked around the room. PICU is chaos…the rooms are overflowing with medical equipment and toys. It’s confusing…it does tricks on your brain to see such bright colored plastic playthings among the cords and sterile looking environment. It’s hard to compute. This. Is. Pediatric. Illness. This is Cancer. I assured her that none of that mattered, that I could capture something beautiful…I explained that I had spent more days than I cared to remember in this very room with my own child…I asked her to trust me, to pretend I wasn’t there and know that I understood. She nodded, reassured she went back to the wrestle that is mothering in the PICU.


Kaysan remained on the bed while little Zyan (his not quite yet one year old little brother) was passed from the arms of Mom, Dad, Uncle and Aunt. This little family was amazing. They were a tribe. Zyan was living under the same isolation protocols as Kaysan. When siblings are a part of the equation there are usually two options…they stay home with family or friends unable to have any contact or disconnect from the outside world as well. They chose to hunker down, as a family, day in and day out. While not sick himself the majority of his life had been spent living within hospital walls.

The scene was grim…poor Kaysan was so sick…so weak…comfort was not an option. It’s heartbreaking to witness. His parents took turns holding the bucket as the nausea overcame him, doctors came in and out assessing and reassessing where he was headed, his Aunt read him stories in an effort to distract him from the pain, his Uncle bounced Zyan on his knee. I stayed pressed against the walls, ducking in and out of the cords and medical booms clicking away. Cartoons, crying, beeping…doctors, nurses. It’s worth saying again…PICU is chaos. But let me tell you…it is so beautiful. I have never witnessed love like I do when I am in those rooms. Everyone is all in. Everyone is fighting for each other.

I needed them to see that love. That’s why I do this. When you’re in it…you don’t see it. You don’t see the light and then when it’s over you try and block it all out…you try to forget. I left that room knowing I had captured those brutal moments in a way that they would look back on and cherish. That night while culling through the shots I texted Brittany this image…

I couldn’t wait. It was late but I knew she was awake…there is no sleeping in the PICU. I knew her heart needed to see right then the beauty in her battle. Within minutes she responded…

”Thank you so much. Oh my heart. Thank you very much. I was looking at your website again today and noticed the quote about this being what you thought would break you but look back and see it’s what made you. That has really stayed with me today. As tough as all this is, I think this time here will shape us as a family. We have all become closer and stronger I think.”

She got it. She saw it. This session was over a year ago and I have continued to witness the strength in this family. I am so grateful to have met them, to have had the honor to capture parts of their journey and to now call this beautiful Mama a friend.


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Open Letter to SCID Families

Open Letter to SCID Families

I made a promise to founder of SCID Angels For Life, Heather Smith years ago that I would help her in whatever way I could. And then life got in the way. Normal everyday life, personal struggles, Riley’s health (or lack there of at times) What also got in the way was fear. Fear that I wouldn’t know what to bring to the table. Fear that “advocacy” wasn’t something I would be very good at. I’ve spent the past year confronting my fears…all of them…taking them head on…listening as opposed to quieting. I’ve become intimate with my each and every one, allowed them to be seen and heard…they are still present but this practice has taught me to lovingly assure myself that they are no longer running the show.

What’s left has been space…space for creativity, space for growth and space to be available to others. After starting The Mark Makers those fears turned to ideas. “What could I bring to the table?” fear asked. I answered. “I’m a photographer and a writer…images and stories are what I bring” I don’t have to become an “Advocate” to advocate…I can be me… I can pick up my camera and allow the images to stir emotion…I can sit at this screen and let my words cause action. This is my advocacy.

Barb Ballard, Heather Smith and Amy Walsh have proven to be utter powerhouse women. They have fought for not only their own children but everyone of ours for years. They laid a foundation…a foundation that is so rock solid. But they didn’t stop there…they built safe havens upon it. The email listserv connected families all over the world in a time when technology wasn’t at our finger tips. The Facebook groups enabled us to see each other and engage more easily. The SCID Angels Scholarships provide financial support at times when the “how are we going to do this?” conversation has been had at home. And then there was the war…the countless battles they fought state after state year after year with a mission to bring Newborn Screening to all. There is no white flag…they never ceased fire and victory is on the horizon. They have been there for us all both in the forefront and the shadows all along. That is their advocacy.

Heather and I are now working closely together on a new project. A new build. I am developing a program through my foundation (The Mark Makers) to document all of our stories. I have had the privilege of photographing many SCID families at UCSF over the years and am now ready to expand that reach. I want to come see you. I want to document your journey. I want to tell your story. Many of you know much about Riley through reading my blog (lifeofrileyjane.com)…your words of encouragement have come at times when I needed them most. I’ve been told by so many that they feel like they really know me though we’ve never met. I want to meet you. I want newly diagnosed families to have a space to go right away and see the healthy future that is in store for them. I want families battling backslides to see that they are not alone. I want those who have suffered past loss to see that it was not in vain and that the future is bright. I want our tales of PTSD to not be something we suppress but shout out loud so we can begin to move forward.

We are a community. A community that none of us wanted to join but I know for myself am now honored to be a part of. We all play a role in holding each other up, in validating each others struggles and ensuring a better future for those to come. I humbly ask you to consider allowing me to write your story and capture your family with my lens…this is my advocacy. I also encourage you to find yours. Maybe you know what you could contribute but like I was are held back by current life circumstances. That’s ok…we will wait. Maybe your afraid to ask…consider this your permission. Maybe your afraid you won’t be heard…we are listening.

In the coming weeks I will be releasing more details on the program and sharing specific areas in which we could use support but for now here are a few quick ideas on how to jump start your involvement:

  • Anybody a graphic designer? SCID Angels For Life is interested in a new logo design.
  • Open to having your story shared?…let’s talk.
  • In a position to support financially? …we’ll provide details on how to become a sponsor.
  • Any local families I haven’t met currently in patient at UCSF?…let’s set up a visit.
  • Want to help with fundraising?…shoot me an email.
  • Have an idea your dying to share?…I’m ALL ears.
  • If you would like to be a team captain, a participant, or walk virtually for TEAM SCID at one of the upcoming IDF walks this fall, you can reach out to Heather at Heather@SCIDAngelsforlife.com.

Here’s a list and dates of the upcoming walks:

Atlanta: 10/27, Boston: 9/30, Chicago: 9/30, Cleveland: 9/23, Dallas: 11/10, Fort Lauderdale: 11/17, Kansas City: 10/27, Los Angeles: 11/4, New York City: 10/21, Philadelphia: 10/14, St. Louis: 10/13, Tampa: 11/17

  • Friends with Oprah and able to get us on her show?…doesn’t hurt to ask right? ;-)

Thank you all so much for reading this, for your continued support of one another and for the amazing things we will accomplish together. For more info or details please reach out to me via email…contact@themarkmakers.org. Looking forward to connecting.

Xoxo,
Alissa McDonald
Mom to Riley Brown (Age 5…SCID Rag1)

SCID Won't Stop These Kids

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Sofia My First

Sofia My First

I walked into the funeral home not knowing what to expect. With Keisha by my side we scanned the room bursting at the seams with loved ones for the familiar face of Sofias mother Sue. She had asked me to come but I couldn’t lift my camera to my face until I’d seen her…until I once again received permission to document the most intimate of moments as I’d done for her countless times before. In the crowd was not only countless family members I had recognized from prior visits but many UCSF Benioff Children's Hospital staff who had cared for Sofia as well as both mine and Keishas girls. As our eyes caught theirs the notion that this…this is where we see each other outside of hospital walls…at the funeral of our children in which they devote their lives caring for hit me in a way I could have never imagined.

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Sue spotted us and rushed over quickly instructing others to place chairs for Keisha and I in the very front. Oh Sue. The grace of that woman. Her embrace of us both was calming…in typical Sue fashion her desire was to comfort US and to thank US for making the trip. With her blessing to shoot we took our seats. One of Sofias brothers and his wife took to the microphone to start the service and slideshow. They explained the music choices…the choices that Sofia had made. Yes, Sofia chose the music for her funeral…she chose songs that echoed the love that she felt both for and from her family. I weaved in and out capturing the scene while also stealing moments of the slideshow for myself. I never knew Sofia prior to cancer and seeing the tumbling gymnast and long locks of black hair bounce around the screen engulfed me. She had a life prior to painstaking journey I’d witnessed and that life was being projected onto a wall.

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At one point her face filled the screen and her voice the room…it was a cell phone video I assume one of her siblings had taken of her to be played at the service. A video of this precious little girl talking directly to her mom…thanking her for taking such good care of her, telling her how much she loved her and begging her to dry her tears. Every heart split wide open. With grief and with gratitude for having been touched by such an amazing little being.

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As the slideshow came to a close family and friends approached Sofia one last time at her casket holding the body which could no longer carry her amazing soul. Some told stories of her, some to her, some just weeped…we all experience grief in such vastly different ways and every form was present.

Her brothers and sisters, extended family, gymnastics coach, teacher, best friend and countless others shared the love that those of us who stayed silent were surely feeling. Trying to put into perspective what I was documenting was all consuming…breathing through each click as I listened to and captured the weeping of a girl her age muttering “she was my best friend”. The courage that took, the overwhelming pain and inextricable loss that child will mourn into her adult life.

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The reality of what pediatric illness does to a family has been mine for years, both through my own daughters journey and those that I document…but the reality of loss…of what losing a child to their illness really looks like has never been so close. Sofia you were my first to love and lose and sadly I know you will not be my last. Until there is a cure.

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Click below to make a contribution in Sofias name. Your gift will go directly towards documenting future children at the centers in which Sofia was treated:

UCSF Benioff Childrens San Francisco and Kaiser Permanente Oakland.

Donate

 

 

My Dearest Heather...

My Dearest Heather...

If I was asked to think of a simple phrase to describe the people I hold dearest to my heart...I could...for each and every one of my humans I could summarize what they mean to me in a brief sentence. But there's one...there's one human in my life whom I think so highly of yet barely know whom a day doesn't pass that they're not in my thoughts yet I can count how many times we've spoken...and for her I don't have a sentence. I have a string of words that defines her existence...at least to me. A string of words she has typed so many times that it is as much of her signature as her first name. I guarantee you in her close circles there is more to her but for me...and my guess is many others in the SCID community when the name Heather Smith is spoken or read the description that screams clear and true is...and means so much more beyond the written depiction is ^Brandon forever 7 months^ 

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It's not a sentence, not a description of her character, there are no adjectives...but for those of us who know what those upward triangles mean it embodies every inch of her being. 

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Those 3 words and 1 number means she is a mother that lost a child. A mother that lost a child named Brandon. And he was and will forever be 7 months.

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She's not alone...there are countless mothers who have lost children. Any one of you reading this may have, or may have come close or may in the future. I don't say that to be grim. I say that because the only certainty in life is death. The uncertainty is what you do with it when it touches you. Few do what Heather has. What Heather has done...the life she has led since her little boy has passed will continue to baffle me for the rest of my days. She has devoted so much time, so much energy, so much power, so much strength to a community that once had no hope but now because of HER...because of her determination, because of her relentless insistence, because of her super human compassion our children have hope. Did she do it alone? No. No one does anything alone. The greatest movements and triumphs are always backed by others...some outspoken and some silent. Some who do a little, some who do a lot and many who do as much as they're capable. There is no shame in any of those categories but Heather fits in none of them. Heather is a warrior. A warrior for a cause that those who've followed in her footsteps are lucky she was touched by. Because of her involvement, because of her life's tragedy, because of her unspeakable loss every single baby who is screened for SCID stands a chance.

There are days when I sit back and stare in awe at Riley...not because of her strength (which we all know there is no shortage of) but because of the humans who came before her whom she may never even know that made her life possible. Brandon was not the only child to have succumbed to SCID...there are many others. But Brandon's short life was held so dear to his mother that she's now spent hers giving us a chance at what he didn't have. A warning. An early diagnosis. A life. She may have dug a hole of grief and anger and resentment...hell she may have resided in it for quite some time and understandingly so but she came out, she came out fighting and she has not stopped. My daughter is alive partially because of a little boy that died 20 years ago on the other side of the country. And she's not alone. There are countless others who live because he didn't.

SCID is rare, yes. But for those of us it's touched it is reality and then suddenly there is nothing rare about the life you live. It becomes yours immediately, the moment you hear the words you can't  pronounce your existence has changed. It's all you can do to get through it. To function. To keep going. Heather did all of that for a son she lost and then she did it again for her son Taylor also born with SCID but a survivor now in college.

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She didn't just fight for her boys but for every one of or children. Our options, our hope, our future is owed in great measure to Heather Smith.

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Connection

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Connection

The greatest gift that I have come to receive throughout this journey of pediatric illness has been that of connection. Real, genuine, brass tacks connection. Connection to perspective, connection to gratitude, connection to fear, connection to love and most importantly human connection. The bonds that I have forged throughout the past four years have led to my ability to persist, rise and grow.

The amazing thing about true human connection is that it can happen in an instant…I remember the exact moment that I saw Kate pass by my hospital room door heading into hers, I recognized myself in her because that had been me just weeks prior…entering this unknown world of parenting a sick child. It was like looking in a mirror. We were connected before we even met. I had started down this path just before her…I knew the darkness that she felt and that if I shared my steps…showed her my footprints she would catch up and we’d walk it together. Our paths became one, we were no longer alone. There were long stretches where our prints could be clearly seen side by side and moments where only one set remained because we chose to carry each other.

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A few weeks back I was feeling low…Riley had been cleared to get out into the world a bit more and I was struggling with what that looked like. Her body is so complicated and finding the balance in exposing her to enough of life to truly live is challenging to say the least. There are germs…everywhere. There is also her own body attacking itself and turns out I can’t control that anymore than I can the viruses looming on the playground. How do I justify preventing her from playdates but taking her into illness-ridden hospitals week after week? Is one really more of a necessity than the other? She's a child and one that requires vast amounts of medical intervention to be here and quality of life is a major component. I visited with a Mom who’s family I have been documenting up at the hospital one day after one of Rileys appointments…her daughter had just be re-admitted. We sat in the Meditation courtyard talking and watching Riley run around while her daughter napped upstairs in her hospital room. When we touched on the subject of “How much we can expose them to?” Keisha paused and said something that spoke right to my core. “I have to always ask myself…what are the things you are okay being left with?” That’s it. There is no right answer. Just the question of what you can be left with.

This life of hers is so unknown. But what are the things I am okay being left with? Days in the sun watching her run free…I’m okay with that. The sound of her belting “FASTER…HIGHER” as I push her on a park swing…I’m okay with that. Dipping french fries in chocolate milkshakes at the corner burger joint…I’m okay with that. Keeping her confined because of my fears when the doctors clear her…I’m not okay with that. Doesn’t mean it’s comfortable. I cringe the moment I see her hands grip the chains on the swing…I can feel the lump in my throat when she climbs into the tub with black bottomed feet from an afternoon outdoors…I seethe with white hot anxiety when I hear a child cough three places back in line to order food. But those are my emotions, my fears and I will not be left with that. I will hear them and sometimes I may even take their advice but they will not be in control. Not of me and certainly not of her.

That weekend I took Riley up to see Elsie…Kates daughter who had fought SCID with Riley during infancy. I needed to see her play…to see her with someone her own age and who better than Elsie. Watching the two of them jabber for hours on end, sprint across the yard and splash in the water I saw their path…it had started together in sickness and it was at a crossroads again in health.

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Human connection…it’s not just for adults. I have no doubt in my mind that those two will walk through this life together while Kate and I sit back and watch. We will witness their prints…some will be clearly seen side by side and in moments where there is only one set it will be because THEY chose to carry each other. I'm okay with that.

All of my love to Elsie and big sister Bretta for giving Riley the perfect afternoon in the country. And to Kate...I've got you, you've got me, we've got this. I love you. 

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Meeting Sofia

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Meeting Sofia

Sofia. My sweet Sofia. I remember the day I met you, I approached your closed hospital door and it’s glass greeted me with a life size Moana decal. There was a collage of images showing your transformations with your name emblazoned across. I stopped and held my gaze on each picture…studying you…moving from photo to photo…watching a bit of your story unfold on that construction paper. The physical changes in you looked as if they happened so fast but for you I knew they had happened slow…I knew that you had endured a long road. I watched the progression of your illness take their toll it’s your body one frame at a time silently wishing that this was not your reality. I wanted to know you before I even opened the door and in truth I felt like I did.

You won my heart that day. You were so full of life. We discussed nail art and pop music and most importantly our mutual agreement on the dreaminess of Dr. Wahlstrom. I mean…those eyes. You filled me in on the other UCSF staff gems…you listed off the cutest nurses and provided me with the details on the adorable ENT. Because yes when your 9 and have cancer having a smoking hot Ear Nose and Throat Specialist is considered a win. You posed and directed yourself as though we were behind the scenes at fashion week. Your body had it’s limitations but your imagination did not. You told me of the time you got Dr. Wahlstrom to dance with you and even broke into a full song and bed-ridden dance rendition of the moment. It was magic. All of it.

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You invited your mom to sit with you on the bed and with each click of my shutter you would make a different expression at her and narrate along. “This is my flirty face” CLICK…”This is my teenager face” CLICK…”This is my sweet face” CLICK. Your mom just stared at you longingly…beaming with pride over her sweet spirited and feisty girl.

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You then placed your hands on each of her cheeks…your expression changed once again this time into a more "matter of fact" gaze…with her face held in your hands you lowered your head and voice looked her right in the eyes and muttered…”This is my I don’t want to die face” CLICK.

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I will never forget that moment. I have no words to describe the way my heart broke open when that shutter closed but I have the image.

In the weeks that followed I have continued to come and see you. You're fading fast now but I'm sure it feels slow. With every visit I add frames in my mind to the originals I studied outside your door. I still want to know you…I will always want to know you. I will document your beautiful spirit for the rest of your life and be forever changed by of it for the rest of mine.

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Riley's Little Wish

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Riley's Little Wish

About a month ago I reached out to the organization Little Wishes™...they are an amazing nonprofit in which Riley had been a previous recipient during treatment. My desire was not only to thank them for the amazing princess dress she had received but to offer a partnership...to find a way to merge our work. They gift, I shoot.  It seemed like a natural fit win/win situation so I looked up their email address typed my little heart out and hit send. Within minutes and I mean MINUTES I received the kindest email from the Little Wishes Co-Founder and President wanting to set up a call. I was thrilled. I was on the right track. I was in no way anticipating the truly amazing connection this "shot in the dark" would turn out to be.

Their Mission: (direct from their website)

Little Wishes™ grants requests of limited dollar amounts but of significant value to seriously ill children during their hospitalization. These children’s treatments can often be rigorous, painful, and the effects lasting – both physically and mentally. The delivery of a modest gift greatly eases hospitalized children’s pain and serves to improve their spirits and outlook during their hospitalization. Little Wishes™ asks the hospitalized children what brings them joy and what they feel passionate about.

Their Impact: (direct from me)

PRICELESS.

The Founders are pediatric nurses so more than most they really do know this world that I both live in and document. It shows in the work that they do and the amount of passion and dedication that goes into their cause. Laura and I immediately forged one of those "we HAD to have known each other in a past life" bonds. Our scheduled call (which might I add I was nervous and feeling like I was going to have to "pitch") turned into a total ramble sesh that had it been recorded not a human alive would have believed we hadn't been childhood pals. She got me. I got her. I knew that our missions would compliment each other but our souls...that you just can't predict.

Laura has now become one of my biggest supporters...reaching out to other hospitals making introductions, answering every ridiculous question I throw at her regarding this whole nonprofit world, gushing over videos of Riley being Riley and all in is just a loud and proud cheerleader of my work. If I forget for a moment that what I am doing matters I can be assured that a note will be coming from her to remind me it does. I am beyond grateful for this incredible woman who I have still yet to meet face to face.

Naturally it made sense for my very own Riley to kick off our first partner shoot...which reminds me...their program isn't a "one-time" deal...children are eligible every 2 weeks for a Wish. Amazing. For someone like Riley who gets infusions every 4 weeks...having a gift to look forward to each visit changes the entire tone of "hospital day".

Sheer joy is really the only way to describe the moment. She felt special, not sick. She was excited, not scared. To capture her moment and our missions all at the same time was a gift. As I scroll through images of that day the reality is still there...you can watch the progression as her excitement fades back into the reality that is treatment. Her journey is not easy but it it eased by others...others who support her, others who love her and others who answered the call to make a difference and grant her Little Wishes™.

Endless thank yous to Laura, her entire all volunteer staff and the Child Life team at UCSF Benioff Childrens Hospital.

To learn more about Little Wishes™ visit www.littlewishes.org.

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Celebrating Sofia

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Celebrating Sofia

I stepped onto the elevator…my hands trembling beneath the Styrofoam plates that held two giant pieces of take-home cake. This isn’t real. This can’t be real. This is not what leaving the birthday celebration of a child looks like. I’m not at a park, my children are not by my side, I’ve endured no small talk. I've only even met this child once before today but she feels a part of me. She IS a part of me. As the elevator lulls along I’m flashing back on my last hours…weaving in and out of the seas of people huddled around the hospital bed of their daughter, sister, granddaughter, niece, cousin. This girl is so many things to so many people. I hid behind my camera breathing through every single click…doing my best to seem invisible while capturing the heart wrenching beauty that consumed the room. It was a birthday party but it was not her birthday. Not even close. That is not a day she will see. Her body will not be here to carry her to the next age. But that family…that family will carry her in their hearts for the rest of their lives.

 

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There is never a better time than now. Celebrate, love, forgive, dance, breathe, sing, play…do it all today. I have been putting off sharing the work I have been doing with the masses, I have been putting off writing…I’m not sure why…fear I suppose. Fear that I don’t actually know what I’m doing, that it won’t be good enough, that I won’t be enough. But if yesterday reassured me of anything it is that this work is not about me. It is about these families and the children they have been fortunate enough to love. I’m setting the fear down. I’m showing up for them. And that will be enough.

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Thank you. Thank you. Thank you.

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Thank you. Thank you. Thank you.

Up until now I have been operating on faith. Not a higher power sort of “faith” but faith in beauty, in love, in the humanity of people. I believed that I had something to offer… that because of my journey with Riley I had a unique perspective of the sheer power I could capture. That belief has consumed me. It has haunted me. It has made me feel powerless in the quiet hours when I’ve struggled with the “how to’s” and it has empowered me into moments of action.

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The logistics behind bringing my ideas to life have been daunting to say the very least. Starting a nonprofit…how the hell do you do that? Let me tell you…google…that’s how. I have poured countless hours staring at this very screen figuring it all out, filling out paperwork, teaching myself to build a website, building said website and researching everything under the sun including the basics of photography. Because you see…I don’t know what I’m doing. I’ve never started a non-profit, built a website and truth be told I’m not even a photographer. Not my trade. I just have a camera. That’s it and it’s not even really mine. My best friend and business partner purchased it because I have taken photos over the years of the many homes and projects we have worked on for our portfolio. I don’t even own a single lens. I have been fortunate enough to borrow them from Meg or rent them for the days I shoot.

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This is why I say I have been operating on faith. Because when you don’t actually know what you’re doing but believe in it to the point that it makes you physically ill to not act on…that’s faith.  Every time I get a request to shoot I swipe my credit card for the gas money to get me there with the faith that this work matters more than not acquiring more personal debt. I walk into the hospital inhaling the will to be of service to those families and exhaling the hope that my faith will serve me. I then go home and hold my breath as the images upload onto my laptop silently begging that I captured the beauty I knew to be in the room…that they’re in focus, that they’re well composed, that they’re enough.

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Yesterday I finally set aside my fear and shared this work on the Life of Riley Facebook page. Within 24 hours there have been almost 18,000 views on that single post. I have received a flood of comments, messages and emails from people that have overwhelmed me in the best kind of way. So many of you have reached out and asked how to help, how to be a part of this…you already are. Reading, sharing, sending love as you did for Riley will drive this work. Donations will make it possible. This program is cost free for the families but that does not mean that there is not a cost involved. My guess is you already knew that. I have had many ask what the immediate needs are for The Mark Makers… Answer: Funding & Fundraising. More Specific (Funding): equipment (lenses, computer, etc…), travel expenses (gas, parking, etc…) and general operating expenses (legal fees, software, time, coffee) ;-) More Specific (Fundraising): Hosting events, fundraising in your community, spreading awareness, teaching me what you know about fundraising since I know nothing…ya know…that kind of thing.

Thank you all for always supporting me…for reading what I have to say and reminding me that it matters, for never judging (at least outloud) my typos and potty mouth, for believing in the strength of my child and now the countless others that I will encounter and serve. You have made an immeasurable impact on my life and now collectively we will spread that impact to the hoards of other families affected by pediatric illness. So much gratitude…thank you, thank you, thank you.

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For financial contributions please click below or send an email to contact@themarkmakers.org if you prefer to mail a check and the address will be provided.

For inquiries on fundraising please email : contact@themarkmakers.org

 

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