I’m glued to a chair in the corner of a hospital waiting room. I considered wearing a sign that reads  “Do Not Even THINK About Sitting Anywhere Near Me” but I’m pretty sure the look on my face is conveying that just fine. I’m waiting for the surgeon to come back out and let me know that I can head back to recovery. Chris is at home rearranging the room downstairs that we use as an office or actually a more accurate description would be “kids art explosion area.” He’s tossing piles of art supplies and half completed works of grandeur into bins, breaking down the table and will then be moving Riley’s bed down into it. Thing is…it’s not for Riley. Riley is playing Barbies with Papi (Chris’s Dad)…she’s having a lovely day. We’re in emergency mode…I’m at the hospital, Chris is readying the house and it’s not for Riley. This is familiar ground for us…not hard to step back into these roles…these roles that according to our life events we were born and bred for.

My Mom fell yesterday…she was finishing a haircut and in one wrong move got tangled in the cord of a blow dryer that she’d clearly offended at some point because it took her down. Hard. She landed directly on her left leg on the tile floor. She couldn’t move…typical scene ensued. Paramedics were called, I was called. I ran into the salon and there she was…flat on the floor surrounded by a hoard of adorable medics who proceeded to pump her full of morphine and me full of questions. I followed the ambulance to the hospital, Chris met me there…ER, X-Rays, questions, consent, vitals, questions, nurses, doctors, information…all so familiar but this time I was advocating for my Mom the patient instead of my Daughter the patient. Quite the turn of events. My poor Mom. Of all the assholes on this planet that deserve the pain of a bone broken in two she is not one of them. Not even close. She had gotten tickets for me to take Presley to Mathilda last night and insisted I leave and not miss it…leaving a hospital is not my strong suit. I stay. I don’t leave. I stay. She was adamant and already feeling terrible that her tumble was the reason for me spending another moment surrounded by medical staff so I decided to let her win that battle. Chris stayed with her and I left while placing bets with them on who would be a bigger shit to the doctors in my absence. Riley stayed with Deena, I went to the play and Chris was at my moms side. Once again our little tribe of humans banded together to get through crisis one moment, one task, one person at a time. Presley loved the play and while my mind was elsewhere I did my best to focus every bit of my energy on being present with her…she needs that…she’s still stuck sitting in the backseat and the least I can do is strap in next to her sometimes.

Chris and I both got home around 10:30…he waited until her pain seemed better managed and she was able to drift off to a hospital version of sleep before he slipped away. We relieved Deena of her auntie duties, I laid Pres down for bed and then snuck in to give Riley her meds. At some point after that I took a deep breath. Another day down. Another plot twist. Another opportunity to persist. The next hour wasn’t so glamorous…I attempted to clean and tidy…or ignore and avoid, whatever you want to call it.  I packed Presleys lunch so vigorously it was as though I was being chased by a battalion of soldiers brandishing weapons loaded with tears and if I didn’t get the grapes washed and in the bag in time they’d gun me down. They did. Those fuckers were fast. It was a flood, I was hit from all sides….just a mess of emotions…all the overwhelming events, facts, twists and turns in our world…mess. My daughter and now my Mom. Why? Ugh. Poor Chris. I recovered…well actually I just forced myself to go to bed. Same thing, right?

This morning I woke up and just knew I had to be calm. Today wasn’t a day to fix anything. Just breathe. Just ask for help when you need it and fucking breathe. I got Presley ready for the day and just as we walked into the classroom I knelt down to kiss her goodbye when suddenly her eyes welled up with tears.

“Pres…what is it kiddo?”

Her chin quivered.

“Mommy…I wanted to wear a special outfit today too like everybody else”

I turned and scanned the other students in her classroom…it wasn’t the usual sea of navy blue polos…there were frilly skirts and Pokemon t-shirts…Shit. It’s picture day…it’s free dress day. I forgot.

“Drop your backpack kid…we’re going home to change”

Tears. Gone. God I wish it was always that easy. She giggled as we sprinted all the way back to the car. There are so few days in her life where I can control her heartache but this one…this one I could fix and you bet your ass I took advantage of that gift and we fixed it. She was late…late donning a smile and a fuchsia dress. Maybe today was a day to fix.

I stayed glued to that chair all afternoon, scowling at any approaching humans until her surgery was completed. The surgeon came out, gave me the brief rundown which is basically that the injury which they expected to require a partial replacement ended up necessitating a complete hip replacement. My experience tells me I’ll get a full run down of what to expect in the coming days, weeks and months as far as recovery tomorrow. My experience also tells me that what I can realistically expect is that what they tell us may not be accurate to actual reality but we will get through it all the same.

As with every other situation our family has faced we will have ups and downs and spend a ridiculous amount of our waking hours re-framing our thinking and focusing on the positives. She is okay. The surgery went great. And while it seems timing couldn’t be worse in all reality with Chris and I’s immediate schedules cleared for Rileys care and my brother coming in with his family for a visit tomorrow it turns out that it’s just not that bad. If this had happened just a few weeks ago when Riley was still admitted, intubated…oh jeez…I can’t even. There I go with the re-framing…oh perspective…you rarely fail me. Riley is all sorts of ready to play nurse to Binky when she arrives here at compound Brown. I’m sure they’ll share some battle stories, swap strength and take turns bossing us all around.

I’m guessing it goes without saying but you know all that positive juju y’all have sent Riley’s way for years?…Shoot some my moms way as well. Many of you know and love her from here to the moon but for those who don’t…she’s dear to me and a really big deal to Miss Riley so we need her back in action pronto.

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5 Words…

“I just can’t get comfortable.” It’s a simple enough statement…but for her…for her it means pain. That was her first phrase in the hospital that gave us true insight to her discomfort, a phrase she’d never said before that allowed us in. She experienced so many different levels of hurt, discomfort, agony and angst…the tests, the procedures, the constant influx of masked strangers poking and prodding of her poor little body. There was screaming, there was crying, there was excruciating silence when she was clearly too weak to fight. Then there was begging and pleading when she regained some of her strength and yet amongst all of those audible emotions and deflections, all of the things that came from her vocally during treatments and trials…the only one we could ever know to truly mean she was in real pain…not fear…not frustration but just…pain…PAIN was spoken as…”I just can’t get comfortable.”

The doctors are relying on basically 3 things in medical mystery situations such as hers…symptoms, test results and the parents. For Riley the meaning behind her symptoms and results eluded them on a million different levels so the form of reference that was often most reliable was US. Finding those cues is agonizing. Weeding through it all, trying to translate a toddlers emotions and physical state during such trauma is just…gahhhhhhhh. It’s awful. It’s agonizing. It’s full blown adulting when you want to kick and scream yourself. But when those 5 words would escape her lips it was clear…she was in pain. The team trusted our guidance because their tools often left them still pondering. Sigh. No pressure.

“I just can’t get comfortable”.  Once she gave me that cue wading through her waves of emotions that ebbed and flowed like a tide became more predictable. She is smart. I know that. She was also scared…time and time again…terrified…but never pulled that card when it wasn’t meant to be played. She’s too smart for that. Some of the things we had to do to her all in search for answers were just so taxing…physically, emotionally. And I’m referencing me…I will not even pretend to speak on her behalf. But as a child she was always able to come right back to the present. Her resilience…amazing. Her ability to express exactly how things feel in the moment without fear of the future or a reliance on past experience is uncanny. I take back what I said…we as parents were not the doctors most reliable reference…she was. We were simply the messengers.

As the days pass now that we are at home we have moved from frantic and frazzled to a convoluted version of  “settling in”. She is home. But the fears I felt in my last entry are still guiding the majority of my days. Thanks to the container store and a cleared corner in our kitchen I have her medications organized and essentially serve up tube fed appetizers at meal times courtesy of Pharmacist Mom. 15 medications…some in powder form that have to be mixed, some in pill form that have to be crushed and then mixed, some in suspension form that must be refrigerated, some that must be mixed and administered for 10 days and then discarded, some that are good until the bottle is empty, some over the counter, some to protect the stomach, some that  advise things such as “wear gloves while administering chemotherapy” and some to simply make her shit. So many meds. Such a small person. I hate them. And I live for them. And she lives because of them.

Our days teeter on normalcy but are lined with moments that remind us they’re nothing but. Conversations during breakfast and Sofia the First reruns such as this now happen…

”Mommy does Sofia have to take as many meds like me”

“No baby…she doesn’t”

“That’s not fair.” deep exhale.

“I know baby…but you know what?…we are so lucky that we have all these meds to help you, sometimes people get really sick and there isn’t medicine to help.”

“Hmmmm…ok Mommy. Guess What?”

“What Riley?”

“I’m stillllll HUNNNNGRRRRYYYYYYY”

In one minute flat I go from keeper of the cartoon, to recovering from a punch of gut wrenching reality, to spouting off a watered down attempt of explanation and then right back to line cook. Piss off Sofia.

It is all just nonstop. Watching her, caring for her and being home with her is the most rewarding and most trying thing I have ever done. She is here and I’m still so grateful for the simple fact of that reality. There are long stretches of the day that I’m too wrapped up in her existence to be held back by what she’s lost. I’m still celebrating her breath that it takes mine away when she begins to progress in other areas.  I root her on as she takes steps…encouraging her strength while burying my fears. I help her onto the potty celebrating her that she made it while having an inner dialogue with myself that goes something like this…”good lord this kid is so heavy, I think letting her wet herself is easier…but we really can’t afford these damn diapers…what the hell…HOW is this our reality?…we were done with diapers…we didn’t have another baby…how is our child  disabled?…shut up Alissa she is not disabled she’s a fucking superhero…yeah a superhero in a wheelchair…god she’s so good at wheeling herself around though, how is that possible…she’s amazing, she’s breathing”-—MOMMMMM I’m DONE…dialogue interrupted…I help her get down, balance her while I wipe her ass and carry about our day.

Meds. Playdoh. Food. Steps. Painting. Potty. Walls…the invisible kind…she hits them. Food. Steps. Wheel chair races. Play. Meds. Food. Potty. Walls…the invisible kind. Food. Food. Food. Playdoh. Painting. Play. Steps. Wheel chair races. Food. Food. And today…the 4:30 invisible wall…hit…hard.

“I can’t get comfortable”

Damnit. Meds. Pain meds. Bed.

“Mommy…can you make sure I don’t walk as much tomorrow…I think I just trying to do too much”

Sigh. “Ok baby”

Once again…she’s guiding me. Progress. Pain. Progress. Pain. Her life. Our life. Progress. Pain.

All So Real Real

She doesn’t say “for real real” anymore…I’ve tried to get her to…but she won’t. Maybe it was a phase that passed during our weeks here, like when they all of a sudden grow out of mispronouncing words or maybe everything is just way too “real real” for her now that it’s lost its charm. I get that.

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There are big moments during our days now where she is Riley…our Riley…she laughs, talks, colors, plays with princess toys, whacks us endlessly with her balloon and smiles. During those moments she knows exactly where she is and is still able to enjoy.

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There are other big moments for her filled with frustration, terror, annoyance and anger…steroids are NO joke y’all. During those moments she also knows exactly where she is and is pissed. Her distaste for the nurses and doctors goes from zero to sixty real quick, her appetite insatiable, her patience non existent and her ability to control her emotions just flutters out the window of our 6th floor suite. It’s like a bonified glimpse of puberty. Resisting authority while angrily eating hunks of chocolate soaked in tears…yup sounds like teenage years.

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It’s brutal. And then it’s beautiful. And then it’s brutal again. All day, everyday. All night, every night. She’s so resilient…I’ve thought for sure after episodes she’s had that she’d never speak to me again but not 2 minutes passes before she sweetly spouts off “mommy you wanna color with me?” Ha. Sure baby…let me just peel myself off the ceiling real quick. Outwardly I channel her resilience plop in bed with her and color…inwardly I’m still stuck to the ceiling like the petrified cat you see in the cartoons looking down at the two of us screaming “WTFFFFFFFF?!?!?!”

We do have the answer to our overall question. The what. It’s graft vs. host disease. It’s  not “normal kid stuff”…it’s complicated, so damn complicated. It’s not the virus we’d hoped for it’s her T cells…(well my T cells if you wanna get specific) that are doing this to her. Attacking her muscles. Stealing her ability to function. For whatever reason 3 years later those cells that gave her immunity have now decided that her tissues are the bad guy. Rude. Infuriating. Confusing. Yup. In true Riley fashion none of her symptoms are presenting like classic chronic GVHD so while we have “an” answer it’s left us with about 3 billion more questions. The main being …what next? For now it’s steroids…piles of steroids followed closely along with a medication that will hopefully wipe out the T cells and allow us to taper down on said steroids. That’s all happening alongside a whole host of other prophylactic antibiotics, blood pressure meds, pain meds, etc…We’re also still waiting to see how her lungs progress, if her eyes are involved and why her heart rate is through the roof for seemingly no reason. Next question…then what? I don’t know. Follow up questions…What if that doesn’t work? I don’t know. How long will we be here? I don’t know. Will this happen again? I don’t know. Why did this happen? I don’t know. Will she regain all of her movement? I don’t know. Insert next question here____________) likely answer…I don’t know. You see a pattern right?

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Needless to say we are nowhere near out of the woods but at least we’ve found he forest. Thank you all again for the love, gifts, messages and donations. Every bit is keeping us going.

 

Riley Update

Wednesday afternoon I shook yet another anesthesiologists hand and then held Rileys as she got put under again. If you would’ve told me after the first or even second time that it’d be something I’d get used to I would have said you were out of your damn mind. How quickly she goes from awake to just gone in a matter of seconds at the hand of a stranger with access to her IV, the way her breathing instantly changes and the oxygen mask is hurriedly placed, the twitching that is followed by doctors reminding you “that’s normal, just the medication” and then they give you the “you have to go now” look and you do. At that moment it goes from feeling real to unreal. Your options…your world…everything is just suddenly so clearly out of your grasp. You look at your child and you leave.

So many times a day I want to grab her and run…take her far away…ok not too far…actually… maybe just back in time about 6 weeks where all was well. Where ignorance was bliss. Where she was a curious little thing who said “for real real?” as a response to half the things you told her…a feisty powerhouse who’d shoot her sister the side eye and firmly announce “Presley that is un-cceptable” when her way wasn’t gotten…a full blown bull in a China shop that seemingly nothing could hurt. A time where what we didn’t know wasn’t killing us. Now what we don’t know IS killing us. I don’t run. I can’t. I walk out of the room and I wait for answers at this point knowing they’re probably the ones I don’t want.

After I left her I walked past the gift shop and spotted a stack of Sees candy…I walked in bought a box and proceeded down the hallway tearing away the red wrapping and peeling off the top. No shame. I just shoveled Scotchmallow straight into my pie hole in the hospital hallway. Coping skills 101. Clearly I’m not the type to have a mild appetite during stress induced life cycles…that would be convenient for my figure but it’s just not the case. I ate my feelings one nut and chew at a time. In my angst I tried to soak up every minute of “adult” time…time that I wasn’t wrangling cords, entertaining, calming, changing, mothering.  About an hour later I (along with my mom who was with me at that point) met the nurse back in the recovery room to wait for Riley to start stirring. The moment she started coming to she let out a big ol’ “I’mm Hunnnnnngggrrryyyyyy” That’s my girl.

The results of the CT came back that evening…there is some spotting/schmutz in her lungs. File that result in the “Answers We Didn’t Want” category. The hope is that it’s an infection or some residual inflammation. We’ve started a course of heavy antibiotics to treat our hopes and from there only time and another round of anesthesia for CT will tell.

Please continue to keep the love coming and never mistake my silence for anything other than having my hands full…with either our complicated girl or chocolate.

Go Riley Go.

Thank You…

 

This is an open letter of sorts, a broad recognition because while one day I may find the time to personally write you individually today is not that day.

My guess is that since you were moved to donate you know our story…Rileys story. Be it the back story or the current unfolding it was enough to move you and that floors me. I keep a tight circle…my name is familiar to loads of different communities but my daily circle of interaction is close. My regular/non “baby in the hospital” life is routine and mundane littered with equal amounts lame first world problems, procrastination and laughter. Whether your gift was a monetary donation via Gofund Me, gifts cards, packages sent, food delivered, gifts dropped off, etc…it’s all been appreciated beyond belief. Because of you I have stopped stressing about parking, eaten, colored, read and last but certainly not least seen my girls eyes light up at the thoughtful presents…from stuffed animals to jewelry making kits to valentines balloons…they know they are on the minds of many (and sparkly stuff just helps) 🙂

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Being here again I’m grieving not only Rileys illness but the opportunities I missed to help others during her health. These walls remind me that on the other side there’s likely a first timer or a child sicker or even more unfathomable than those scenarios…a child alone. My brain is constantly flooded with ways I can help/support/influence/ educate parents like us or children like Riley and has been for as long as I can remember but my action has lacked. I envy you…those who just take it. Those who so quickly act. Being in this situation again I’m disappointed in myself that I’ve spent so much time crafting these lofty plans in my mind as opposed to simply acting. My ideas or intentions aren’t serving anyone…yours did.

I’m not beating myself up I promise…I mean maybe a little bit in a healthy way. That being said I am baffled that so many are once again showing up to help…be it old high school classmates, acquaintances, friends of friends or even complete strangers…I’m in awe. You likely haven’t been sitting around for years like I have pouring over how you can best create a platform to assist the families of hospitalized children…but when you saw an opportunity you took action. You read, overheard, inquired or stumbled upon our trials and chose to be apart of the triumph.

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This journey that we are on is going to be long. Life alteringly long. The hospitalization portion will end at some point but our daily lives will be forever changed…the “new normal” we’d crafted since leaving the hospital back in 2014 is no longer applicable. And that’s okay…I’m in…I love this little family of ours more and more with each complication but logistically I may scratch a hole in my head before I figure out how it’ll all work. I never had the notion that Riley would be a “normal” kid but I never anticipated this. No matter what portion of your hard earned income or precious energy you’ve gifted to us it’s helping far beyond your expectations. Scouts honor. With every donation I’m moved by the action, by the decency of the humans who’ve chosen to follow us and by the ability of others to so selflessly give.

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I’m not only grateful but humbled and empowered to be more like you all. Life gives us lessons and apparently I missed something on the last go so in this retest I’m taking notes…I’m learning strength from Riley and compassion from you.

Thank you, thank you, thank you.

Gratefully Overwhelmed…

Gratitude is such an amazing emotion…it just wins. It’s overwhelming every other “feel” trying to sneak into my days. It’s not like rock, paper or scissors…it has no weakness. It can’t be covered, cut or smashed. It just wins…Every. Damn. Time.

For every known complication that pops up and all the terrifying unknowns this team of UCSF humans is working tirelessly to care for Riley. This is their job and they do it well. They do it with grace. They do it with love. They do it with caution. They do it with urgency. My child has never been sicker but I’ve never felt safer. For that I just…I mean…So. Much. Gratitude.

And then there’s our family…Chris’ parents and grandparents, my mom, my step mom , our brothers and all the other extensions all holding strong sitting on “Go” to take on anything we can’t. Gratitude.

And then there’s our friends…or the family we’ve chosen…Deena and Courtney have sat at my bedside almost every single night until the wee hours just waiting for me to need something. Because of their insistence and DoorDash accounts I am eating. Because of them I don’t smell like stale PICU pajamas because I can shower knowing that if Riley opens her eyes to them she will find comfort. Because of them I am breathing. Gratitude.

Michelle has kept a consistent stock of shortbread in my pantry and always manages to send me the perfect text at the perfect time whether it’s a reminder that she has me, a rant about breaking shit or a simple emoji. Tiffany made her mark with the most wonderfully inappropriate humor during a visit that has kept a smile on my face and a burst of laughter at the edge of my breath for days. I’m laughing now just typing this. Kelsey has taken her shift walking me around the blocks like a dog and will be tidying up my eyebrows soon. Meg spent an afternoon listening to me in 3 minute spurts between doctors and treatments and researchers and therapists…she followed the conversation and also captured the chaos with her lens. Mickey has just…well…Mickey…he’s my twin flame, my fiery mirror…my other side of the country husband who has a husband and is not actually my husband. Did you get all that? Gratitude.

And then Kate…oh sweet Kate. There is not a soul that knows Rileys journey like Kate. She’s done the things she knew I’d ever ask for…she showed up with food (and booze) when I said I was fine (I lied-she knew), she created a donation page and began helping ease the financial burden before I’d even had the headspace to add that level of stress, she’s apologized for her kid now being one of the “healthy ones” we had he urges to kick back in our isolation days and would actually let me kick Elsie if I felt it would serve me. Gratitude.

And then there’s Chris…actually he’s right up at the top but it’s only fitting to save the best for last. Everyday Chris is spending 3-4 hours driving back and forth so he can be present for his girls. All three of his girls. Mornings with Presley, days with us, nights with Presley. He is managing the emotions of all three of us beautifully…three women…high stress situation…he’s been a rock and doesn’t even know it. I’m just here…only playing one role…he’s beautifully juggling the rest which is something I won’t even pretend I could ever do. Gratitude.

Presley deserves her very own write up at some point and will get it…for now…all I can say is she is standing in the shadows casting light. So much light. Gratitude.

Countless others have sent texts and messages…packages and donations. And there’s no way to even measure the moments people have spent dedicating thoughts and love to us. Just an overwhelming outpouring of love. Because of all of these acts and humans and commitments and relationships and bonds she will get stronger. Bottom line..

Gratitude.

Riley Update

For days…no gosh…almost 2 weeks now we’ve been telling her that she’s here to get better…that these humans are helping her feel better…that these painful procedures and masked strangers are making her better…all the while she’s not getting better. Day one…she couldn’t walk steadily on her own. Day ten…she couldn’t breathe on her own. That doesn’t sound like progress and I can imagine it hasn’t felt that way to her. I have this visual that the next time I stroke her and softly say “you’re doing great, this is going to make you feel better.” she’s going to rip the tube out of her throat and call “BULLSHIT”.

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Just when I start to think that way…when I start to let myself imagine her frustration, angst or impatience I realize that it isn’t hers but my own. Not to say that she doesn’t have it but she’s just a better person than I am…than you too. We all kind of suck in comparison. She knows more than we do…the pain that we noticed weeks ago has likely been building in her for months. She is so in tune with her body, so open to enduring the discomfort of treatments and tools because she knows it’s necessary. It’s unreal. She’s like a super human…a tiny super human trapped in a body attacking itself. It’s Riley vs Riley in there and both of those little shits are stubborn. Who wins that war? Never mind…I know the answer. Our Riley does because the fight to stay is always greater than the fight to leave. Our Riley does because the hands that fixed her once are on her again and more determined than ever. Our Riley does because I refuse to have it any other way and who do you think she got her stubbornness from.

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Our Riley is resting…has been all day and when she wakes she won’t move mountains she’ll climb them. Over and over.

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Rest Riley Rest.