^Say. Their. Names.^

If you know someone who has lost a child…and not just recently…it could have been 5, 10, 20 years ago…

Say. Their. Names.

Don't be afraid you're going "to remind them" they know. They're afraid you forgot.

Not sure what to say...google it. Literally. There's an article for that. A book for that. A blog post. A video. It's there. There are mothers all over the internet who have lost children and share their “I wish people would…” advice. “I don’t know what to say” translates to “I haven’t tried to figure it out.” It’s hard. I know. It’s harder for them. Also…it’s hard because you’re avoiding it…lean into it. Don't let your discomfort define you. Show up.

Say. Their. Names.

Here’s a few ways to start and a not so big secret…yes it will be uncomfortable…do. it. anyway.

“Hey remind that time when…”

“Did you know that everytime I eat pizza I think of that time when…”

“I was in the store today and there was a little boy named _______…it just felt like a sign to call and tell you I love you.”

“What was that ice cream shop _____ loved? We should make it a monthly thing to go get a scoop there together.”

“How can I help…{follow up with a few suggestions to break the ice}”

Stuck. May 2017 Edition.

Below Original Blog Post from www.lifeofrileyjane.com May 2017

I lay in bed this morning listening to Riley playing with her princess dolls beside me…she is always playing with those dolls. She narrates an entire little world filled with weddings and galas and “banquids” (she means banquet but her mispronunciation is too adorable to correct.) I should feel relief, I should feel overjoyed. I should feel everything except what I do. I feel frozen. I’m afraid to move because she’ll know I’m awake and want me to play along. I should. I should be able to. I should want to. I can’t…she can’t know I’m awake…the carefree language of pretend she is speaking I simply cannot fake my way through.

She’s home. She’s okay. She’s happy.
I’m a million miles away. I’m suffocating. I’m terrified.

What the actual f*&$? My mind starts attempting to calm me down while shitting on each thought before it’s completed. I have everything I wanted. (for now – but what if?…) Everything is okay. (is IT?! – but what if?…) She’s home. (yeah…today – but what if?…) GAHHH. I’m glued to the bed by what-ifs. I want to be asleep, I want to just sleep through this part. This part I haven’t mastered. The come down. The “back to normal”. I can’t sleep…I went to bed at 8…I was already feeling my body being taken over. I thought I could escape it with sleep. What a nice sentiment. That would have had to involve actually sleeping…instead I shot awake gasping for air every hour or so. I’m so tired but unable to rest, 10 hours of terrorized slumber and just like that it’s the next day.

My body feels like the vessel of a snow globe…if I lay here still enough maybe these feelings will all just settle. But I’m vibrating…I’m trembling with anxiety and fear and gratitude and exhaustion. I can see every flake of twisted emotion shaking within the hard shell that is my globe. But if I get up it will be everywhere. The tiny flecks of discomfort will fly up…they won’t just remain in the pit of my stomach where they reside now and I know that. They will twist and turn disrupting everything. With every step they’ll shift, with every request to play they’ll scatter, with every inhale I’ll pull them to my center and then upon exhale they’ll blast out with renewed force.

I couldn’t even put my feet on the floor until I had given myself permission to leave. I knew that I couldn’t be in the house, I couldn’t pass an ounce of my messy energy onto the girls. I put on shoes and just headed out to walk. I wore spandex thinking I might decide to spin or bend my way out of this. I took a book thinking I could catapult my mind into a different world for a bit. I took a credit card thinking at some point some sort of sustenance may help. I decided not to take an allergy pill thinking that if I was lucky the discomfort of itchy eyes and a stopped up nose would take my mind off of the anxiety radiating through my body. Twisted, right? I know. I had no plan. Nothing. I walked aimlessly for hours…I thought about getting brunch but didn’t actually want food so “brunch” would’ve meant a Bloody Mary but I’m pretty sure if you’re alone in spandex occupying a table not eating and ordering vodka it’s not called brunch…it’s called drinking alone. Which let me clarify I have ZERO problem with…in all reality I wish it would’ve sounded good…it just didn’t. I ended up with an ice coffee at one point and a smoothie at another. I followed that with going home to cleaning and laundry and then I packed a bag for the hospital. No we are not going back. But since all the “ugh I wish I had’s…” are fresh in my mind I thought it might be comforting to just pack it up and then put it away in the closet. I’ve now got the essentials for an unexpected-hospital-overnight stowed away. If you’re prepared for disaster they’re less likely to come right?

And then there’s Riley…she’s spent her day as though she’s never endured a moment of trauma ever…ever. She’s been out back taking advantage of the 80 degree weather sprinting in an out of the sprinklers and a blow up pool with her sister. I couldn’t even watch. They were giggling and singing and shouting and squealing with delight …all of the happiest sounds you could imagine. I couldn’t bare to listen. I actually had to leave again. I took myself somewhere where I could be alone to write this…to write about how tortured I feel because that feels better than watching my daughter happily splash. God, that’s twisted. How is that possible? How is any of this possible? How can I be so present and capable during the worst moments and completely frozen during the best? I know it’s fleeting. I know I’ll recover but I hadn’t even gotten my footing from the last go round and this just has completely knocked me back to I don’t even know…what comes before square 1? Zero. Right. I’m at zero.

When I try to pin point why I’m such a damn mess…I’ve got nothing…I mean it was 3 days and in compared to last time it’s just laughable how FINE she really was. I mean she was fine so quickly because we knew what to do this time but STILL. It all just happened so fast. So unexpectedly. So randomly. She had an MRI last week and the results were good. She had IVIG Monday and did great…she even got a princess dress, it was a damn good day. She had a follow up BMT appointment Tuesday and it was the first one since admission that we just kind of sat and talked about how great she was doing…there was nothing to report. Wednesday I worked, she played, we went to bed and then I woke up with the overwhelming urge to touch her. You know what transpired after that…well no I guess you really don’t, but you have the cliff notes…fever, ER, ambulance, UCSF. On top of the “emergency mode come down” I honestly can’t say I know how to process the “move-forward” on this one. She was just in so much danger and then very quickly not (thanks steroids). It wasn’t a slow build up of symptoms, there were no signs, I wasn’t on higher alert. I just happened to wake up and have a gut feeling. What if next time I don’t? What if next time I’m not there? What if I never stop spinning and asking “what if”? And then there’s her…there’s Riley bounding from chaos to calm with no hesitation…she’s not asking “what if?”…she’s enjoying what is. All I know is this…when I grow up I want to be like Riley…and if she grows up she’s going to run the world.

And here’s me telling the story I didn’t share then…the one that is important now.

It’ll make you smile…promise.

Inspired by my youngest daughters medical journey, The Mark Makers was founded to document the lives of those affected by pediatric illness. I have been capturing moments for families within hospital walls for over 3 years, providing tangible and priceless evidence of memories that may not have typically been seen as beautiful.⁠ ⁠

During this time when access to hospitals is not something I have the ability to make possible I am developing other ways to serve these families. To make sure they continue to see light in the darkness they are facing. I will not stand by and wonder when my life and business will return to normal, because I have lived through trauma and learned that it never does. You have to be willing to change course, to pivot, to take everything you thought you knew and reapply it elsewhere. ⁠ ⁠

Not being in those rooms, not being able to serve…it is breaking me.⁠ ⁠

I have had to remind myself that the worst thing that ever happened to me…Riley getting sick…was the best thing ever happened to me. It has broken me, again and again…but each time I’ve put myself back together so now when I break, which I still do…I know it’s an opportunity. An opportunity to let go and an opportunity to grow. I’ve learned that I can’t do one without the other. ⁠ ⁠

So I am letting go…⁠ ⁠

• I am letting go of the idea that to impact families I have to be in the room with them. ⁠

• I am letting go of the idea that clicking a shutter button is the extent of my service to this community. ⁠ ⁠

• I am letting go of the dreams I had to make space for the reality I can create. ⁠ ⁠

And now…we grow. ⁠

These families, like all of us have endless pictures and videos trapped in their cell phones…I can’t be the one to capture right now but I can take what they have and turn it into something beautiful. ⁠ First step, teach myself how…use what I’ve got…my girls, our journey and the time to create.⁠ Capturing Corona is my real time lesson in iMovie…I’m working out all the kinks on my kiddos and man is it making learning fun. ⁠ Cost free creations for families facing pediatric illness coming soon…until then…⁠ ⁠Capturing Corona, Episode 1…enjoy.

Mondays, PICUS and Grace

Every Monday I think of the most ridiculous/surreal/"only medical mamas can relate" conversation I had with Kierra Irvine last year when I finally met her in person after months of messaging. Her daughter Evanna was born with one complicated heart (to say the least); Kierra is not only a fierce advocate for her own child but an open book and priceless resource for other heart families...have a question...she's likely got the answer and will take the time to write paragraphs upon paragraphs to ease your anxious mama mind. ⁠

Instagram: @kierrairvine

"I just love a Monday in the PICU." she said it and I chuckled...no I straight up laughed as we strolled through the hospital hall. "OMG...me tooooooo...is that not the most bizaare thing to love?!" We went on to geek out about our love of Mondays...especially PICU ones. While that seems insane we unpacked it and here's the why...things happen on Mondays...the weekends are quiet, you're not enjoying the rest you're awaiting the plan and the plan...the plan is made on Monday. Now granted...the plan may change on Tuesday BUT...it's made on Monday and a plan is good for our soul, regardless of it's fluidity. ⁠

Daddy and baby brother Bennett.

Evanna’s 5th birthday was spent recovering from heart surgery in the CVICU but thanks to the creativity of her mother and the amazing work of Little Wishes she was surrounded by a Paper Bag Princess party fit for a queen.

PICU life is not currently my reality and I thank all the unseen things for that everyday...that also means I get to plan on my own terms. I'm not awaiting rounds. I round with myself on Sundays and on Monday it's go time. These days with grocery store runs taking a minimum of 2 hours, distance learning with 2 kids/working from home full time and cooking 3,000 meals a day...planning out my days has become even more essential.

I plan but I plan in pencil and use grace as my pen...the plans will likely change, the grace must be permanent.

Sending loads of love to the Irvine Family today.

Happy Monday everyone! ⁠

To help support The Mark Makers and the work that we do documenting families affected by pediatric illness please consider donating today! Thank you!

Kierra and I last April…finally meeting at Stanford :)

Brutiful

"The more I opened my heart to the folks in my circles, the more convinced I became that life is equal parts brutal and beautiful. And/Both. Life is brutiful."⁠
⁠
-Glennon Doyle, Carry On Warrior ⁠
⁠

I have been documenting this sweet girl since she was just a baby at UCSF...like my little Riley she was born with SCID and like my Riley her road has now seen a few more bumps than our Mama hearts wished for. I didn't know that she was back inpatient, I had visions of her home and inching her way into normal life. Last week I went to UCSF for a SCID support group and when her Mom walked in my heart lept and sank in unison. I was thrilled to see her and then gutted as to why she stood in front of me. Those meetings are so good for our souls (thank you Heather Smith for their existence)...they give us the space to vent and grieve and laugh and look at each other while viciously nodding "same, girl, SAME"

After the meeting I went to visit little Eleanor, to capture the continuance of a journey I thought was done. As we played on the floor I thought back to all the sessions I'd had with these two in the past and the quote above flooded me...this is brutiful. She is beautiful. SO SO beautiful and this life...the ups and downs of parenting a patient is brutal. Brutiful. ⁠

**I wrote this last week and it was scheduled to post today. I got a message from her Mom this morning and the struggle to find beauty in her update is real. Today they are in the thick of the brutal. Today they are dealing with the results you don’t want and the pain and procedures that follow to find a fix. The steps forward are a slog when you’ve learned that despite all attempts the results show you’re moving backwards. Today she is in pain. Today she is in surgery. Today is not equal parts…today is brutal. To those in my circle...this is me asking for help in sending beauty this families way however you feel called…all the positive vibes, all the comments, all the prayers, all the love, all. the. things. **

YASSS SISTER

“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.”

I wrote the above back in 2017 and 2 years later I’m re-reading it with tears streaming down my face. While we live hours apart I feel like Kate is a part of me, like our cells somehow merged as our daughters received those that saved them. At any point I could pick up the phone with confidence that she’d answer yet I rarely do because honestly…she’s already there, I already know what she’d say. I can unload my worries to her in my mind and hear her tone, inflection and cowgirl up attitude. She’s my voice of reason with a potty mouth, my greatest cheerleader in spurs and a forever friend…friend? no…that doesn’t feel right. Kate is my sister…not through blood but through circumstance. Was the circumstance a good one? Nope. Will we continue to get through it together? YASSS SISTER.

Kate…I love you…so dang much. This one is for you and for Elsie and all the other “sisters through circumstance” out there.

“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.”

-Excerpt from blog in 2017…still true.

“Hi”

“Santi say Hi”

He looked up from his wheelchair and his big brown eyes met mine…

“Hi”

I thought I was done for right then and there. I mean like really thought I was going to melt into a puddle on the floor for the janitorial staff to have to deal with.

“Oh my gosh….HIIIIII!!!” I squealed as I wrapped my arms around his Mom with a celebratory hug, the enormity of his simple greeting not lost on either of us. I’ve been photographing Santi for months and never once heard his voice. Not because he doesn’t have one but because it’s been silenced…either by intubation, sedation, fear, illness, post op meds or any of the other laundry list of things these tiny humans endure. Every stage I have captured during this journey his mouth is drawn into the most perfect upside down “U”…a sad faced frown that so closely resembles the emoji that it would be sweet if it wasn’t so heartbreaking.

In every shot I have he looks weary because he is…or was. Today he wasn’t. Today he said “Hi” to me. Today his lips rested in a straight line flirting with the idea of an upturn.

He sat up in bed ripping the tissue from the gift bag I’d brought him…so much movement. I’d never seen him move this much. It was like I was seeing HIM for the first time… his personality, his mannerisms, his spirit…all the things he’d lost along the road that I’d been promising his Mom would return. It was there. He was there. Spurts of joy and silliness are slowly finding their way back…they’re subdued…hesitant…guarded…but they are there and man I can’t wait to see more.

These sessions are made possible through donor support.

Please consider making a contribution so we may continue to document Santi’s journey.

Whole Heart Hero

Friday night I crawled into bed with my guy, our biggest problem in the world being the spotty internet service keeping us from diving into whatever crap show we’d chosen to zone out on. My phone buzzed on the nightstand, I reached over and the caller ID launched me to a seated position. It read “Whitney (Dude’s Mom)”. First Name (Child’s Name/parent)…that’s how they’re all in my phone…the families I serve. I knew. “Whitney?” Through sobs I made out what she didn’t need to say…”can you get here now?”. I was immediately out the door…camera bag in hand, lump in throat, stomach in knots. As I approached the bridge I frantically dug into my bag for my credit card. 6 dollars…the price of my admission to a child’s final moments. As I handed my card over I breathed in so deeply it felt as though the oxygen would crush my skull, I continued this breath in silence…the only sounds coming from Google map directing me even though I know the way to Stanford.

I become someone else on these drives. I have to. Me…”human me” cannot do this work. I become a vessel of sorts, void of any thought because what I’m about to walk into I can only do if I pretend I am not real. If I’m not real then maybe it isn’t either. Maybe I fell asleep at 11:22 as opposed to answering my phone. Maybe this is all a dream. I pull into the almost abandoned garage, I hit the cold metal button in the elevator, I hand my ID over to security sanitizing my hands as I wait and confirm that “yes I am feeling well today”, I press the visitor badge which shows a long haired version of myself to my shirt as the clap of my sandals echo through the empty lobby…”You are not real, this is not real.” My own voice repeats this in my head as I make my way to the CVICU, I know I’m lying but I know it’s for my own good. As I approach the doors they are already open, the automatic closure slowly happening behind the last person to enter…I slide through them and audibly whisper…

“You are not real, this is not real.”

The moment I stepped in the room I knew I wasn’t called for my camera…capturing would be secondary. I’d only met Whitney briefly twice before but all of her family was en route scattered on a stretch of highway between Oregon and Palo Alto…I was the only person she knew for miles. Staying tucked in the background and documenting like I usually do didn’t feel right, I was there to be in the moment with her. I set my bag down and placed my hands on her back and legs as she was curled up against him. I passed my palms over her forehead as tears streamed down her face soaking her sons hair. For hours I rubbed and squeezed and massaged keeping cadence with her breath from her shoulders to her ankles…internally pleading that some of her pain would be taken…that it could somehow be transferred into me through my fingertips if I just kept going. It felt as though I was present for a birth…the rawness, the intimacy, the uncertainty, her excruciating pain and guttural sobs. Unlike birth this would not end in life… this was a labor…a labor of loss. I only left her side in brief increments …freezing time with my camera and putting it down as soon as my hands felt called back to her. Shortly after her Dad arrived I decided to leave, to pass her and these moments with Dominic off to family. I regret that decision now, I wish I’d stayed…for her or for me I’m not really sure.

As I drove back over the bridge my mantra got me home “You are not real, this is not real.” I was in survival mode, forcing my mind to believe it was all imaginary…that I’d never left my bed, that I’d simply drifted off to sleep and into a nightmare as the Internet buffered. I walked into the bedroom around 4am, Jake heard me and launched into a seated position the same way I had earlier when my phone rang and with that I could no longer deny reality, I crumbled, it wasn’t a dream.

I am real. It was real. And he's gone.

I am gutted…broken for her. For her other children. For her family. For every person Dominic undoubtedly touched during his 13 years. I wish I could somehow take their pain, make this better/easier/make believe. I have watched on social media as her community has taken action…creating fundraisers for funeral expenses, meal trains and offers of support. I applaud you all and BEG you to keep going. Pray…she is an avid believer and because of this will feel the power behind your prayers. Show up on her doorstep even if you aren’t sure you’ll be invited in. Call her without the expectation of an answer. Provide the help that she will not ask for. Send that text. Write that card. Mow their lawn. Make that casserole. Say. His. Name.

Photos of Whitney Leigh Fitzgerald by: Alissa Mcdonald, The Mark Makers

For the countless that have asked how they may support:

Information & links to donate or purchase shirts to help with funeral expenses for Whitney & family can be found on Whole Heart Hero or click on the GoFund me link below.

Comfort in Connection...

The room was dimly lit...for every nurse that asked if I wanted the lights on my answer was the same..."no thank you" I don't need light, I work in the dark. That's the whole point...to find the light in the darkness and be able to share it.

To not change a thing in the room, to not alter the environment a bit for that baby working oh so hard to breathe. ⁣ ⁣ The Mom seemed nervous...unsure of where to stand she stayed tucked back watching me as I zoomed in on her boys features.

I knew if I wasn't in the room she would be standing over the crib, rubbing his toes and whispering just loud enough for him to hear her voice over the sound of the machines. I stopped shooting. I knew there was a language barrier but I had an idea of how to break it.

"Can I show you something?" She nodded her head and walked towards me.

I pulled up a picture of myself on my phone...one where I am leaning over an intubated little Riley.

"That's me...that's my daughter...she's ok now...but that's US."

I literally felt the nerves leave her body as she looked from my phone to meet my eyes. Her face softened into a smile...a knowing one...a comfortable one. Before she saw me as a photographer...now she saw me as her. Because I am...I am her, I am every mother I have ever captured. With that she found her place in the room...right back at his side where she belonged, the place she always is when no one is looking. ⁣ ⁣ And just like that...light.

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The Patient Sibling...

Nestled in the back with busy bins. Bright dresses in stark contrast to white walls. This light you see… it’s my camera playing tricks on you…PICU rooms are dark, curtains are pulled and dimmers on low.

Beep. Beep. Beep. The machines…they never stop…they become the soundtrack to your childhood. You’re told to “Be careful” … “Be quiet” … “Be calm” and most of the time you are.

You distract yourselves from life while your sibling fights for theirs. You sit in the corner not because you are in trouble but because they are in healing.

You are in those rooms because you too have needs even if they don’t require medical attention.

You skip school to color with them or you illustrate their current reality with vivid detail and heartbreaking truth through your misspelled words.

You’re the twin who looks on as what once was a mirror back at you slowly becomes unrecognizable.

You are gentle beyond your years…you mimic the soft touch you’ve seen the adults display completely unaware of the hearts you are melting as we stand watch.

We see your blank stares and long to give you answers to all the questions swimming in your innocent mind.

You become caretakers…embracing a role you never asked for with a love and grace that simply cannot be described.

You snuggle in close…you read from start to finish and begin again because you’ve learned the ways in which you can provide comfort.

You grow up exploring playrooms…not those found in the homes of friends but those right off the hospital hallways where you master the craft of walking.

Dad holds you while Mom holds the bucket…your sweet nature a product of the environment in which your family has been thrust into.

You came into a world turned upside down by the diagnosis of a sibling you’ll grow to look up to for reasons beyond the order of birth.

You have your first birthday party in a hospital room not because you are sick but because they are.

You’re too young to remember but you’ll never know of life any other way.

You build imaginary worlds in unimaginable circumstances…you are The Little Engine That Could carrying the weight of a load oh so much bigger than you.

You will remember all of this even the parts that you don’t will be forever stored in your cells. You are the siblings of the patient and you are oh. so. patient. We see you siblings. We. See. You.

Images below…

PC: Meg Perotti Photography

…captures of my Presley, the absolute rockstar of a patient sibling. I see you kiddo.

Three Tiny Knots

I met little Harper, her Mama and Aunt at 6am in the waiting room at UCSF. It was a first meeting but like all families I work with none of them feel like strangers. It’s like I’ve walked all the miles in all the shoes…they all just seem to fit. As we walked back to Harpers room I peered into the familiar rooms…the ones I’ve been in with Riley awaiting anesthesiologists and surgeons…I feel like a part of me still lingers in each of those spaces, like fragments of my soul are on the damn wallpaper or something…I get the urge to walk in and whisper to the curtains “It will be ok” but I refrain because the thought is poetic but the act?…that’s maybe crossing to crazy. I clicked away and chatted while they waited, entertained and soothed a baby who’s done this enough times to know what’s coming.

Her blood curdling screams at the eyedrops and how she’d calm down just in time for the next set. So familiar. The cries that are so intense there is actually zero sound…just a wide open mouth and bright red face. You don’t “shhhh shhh shhh” them because there is no sound to shush…you encourage them to breathe because they aren’t. Too familiar.

After they took her back for her procedure we all went down to the cafeteria and swapped stories…laughing about how bizarre our lives are to pass the time until Kelsie’s phone rang. The doctors would be looking into Harper’s eyes…well her eye. One has already been removed due to the tumor rendering it unsaveble. They were looking for more tumors, signs of progression…if it was there they would do a procedure right then. If all looked clear then they would wheel her back to recovery where the anesthesia would wear off right as her anger for being NPO for 12 hours would rise.

We made our way back to the waiting room and as the doctor began leading us into the little office where news is delivered he turned and spoke “Everything looks great…” Man, can I just say…I love when they do that. Just spit out some good news quick so you can exhale. That whole waiting until your ass is in the chair thing…not cool. Give the cliff notes on the walk…details at the table. Anyway…details were given at the table…the news they’d wanted they got. No new tumors, still cancer free. To be in a room when someone gets that kind of news is in fact pretty magical, who gets to experience that sort of joy? I do and I don’t take a single second of that for granted. In fact I bottle it and call on it for strength in the moments I witness that go the other direction. Now here is the thing about cancer. The second they got the answer they wanted…the question gets asked again and they won’t get their answer until next month. Every month…same time…same place…same question. For the next…oh…5 years or so. Just as you let out that sigh of relief you take in a big ol’ breath of “what if” and hold said breath for 4 weeks. You get used to it…you do. The situations you once could have never imagined are now penciled in as weekly appointments. Other peoples worst nightmares are your Tuesday mornings. It makes you weak and then strong…cry and then laugh. Crumble and then for some…create.

The Mark Makers exists because I crumbled and the only way to put myself back together was to create. To create meaning, to create purpose, to create connection, to create income that enabled me to care for my complicated child, to create something beautiful out of the horrors that is pediatric illness. Kelsie, like myself found a way to create. She turned a hobby into a business…a business that would serve her creativity and help support her family. Kelsie makes the absolute most adorable handmade bows, bows with a purpose. And let me tell you she is not stopping there. This is a mama with a heart of gold and a mission to bring good into this world thriving off the heartache she has endured.

How lucky I am to connect with these mothers…mothers like me who fiercely love their little patients and don’t stop there. I cannot wait to watch Miss Harper grow…to capture their bond, to support her healing and their mission. Get ready…you’re going to be seeing a pile of precious hair accessories on the heads of my little ladies and you will now know they are so much more than sewn fabric.

To learn more about Kelsie and Three Tiny Knots please visit…www.threetinyknots.com

Three Tiny Knots

PC: Bushel and a Peck

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

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.

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.

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.

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.

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.

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

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).

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.

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.

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.

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).

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…

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

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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

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

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.

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.

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.

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.

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.

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.

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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^ 

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. 

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.

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.

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.

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.

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.

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. 

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.

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.

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.

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.