So it’s Presley’s birthday. She is 8. Today. I have an 8 year old. I can hardly believe it. A couple weeks back when I wrote the post about her I sat her down on… More
*Riley is fine…home and fine…just a little up front disclaimer for those freaking out because I actually sat down to update. 😉
I did something tonight that I never do…I sat down and forced myself to go back…to read my words. To read what you’ve all read. Writing for me has always been so therapeutic and aided my ability to wager the storms. Reading has been too…but not my words. Others…non-stop, I am typically reading and/or listening to 3-5 books at a time. But my words? I avoid each and every letter like the damn plague. It hit me tonight that that’s likely not a very healthy approach. Ok, ok almost 5 years later I’m just seeing that…but at least I am…thanks self-reflection, yoga and therapy…y’all are paying off. Maybe that’s why I stopped writing…maybe I knew I needed to read my words as opposed to constantly typing out new ones but wasn’t ready. Why I felt ready now I have no clue but here I am…perched on my couch composing myself to type after enduring the painful inhale of my past entries.
Holy shit…we’ve been through the ringer. Like for real. I mean…I knew that…turns out it is my life and all but it really does get to a point where it feels like a story I tell and not a reality I live. I can’t believe it has been almost a year since I have updated…all in all Riley has remained on a path that while rocky has been less of a constant uphill and more riddled with switchbacks that help manage the climb. If memory serves correctly we’ve had a couple more ER visits, ambulance rides and 1 (maybe 2) re-admissions since I’ve posted but she is sleeping soundly here at home tonight and that is something I will never tire of being grateful for. She continues to gulp down an impressive cocktail of medications multiple times a day that both protect her from this germy world and attempt to keep the havoc her own little body tries to wreak on her at bay. She also continues to be the most badass patient in the world…she LOVES and I mean LOVES going to the hospital. Like excitedly shouts “SECOND HOME” the minute we pull off the freeway and she sees that colorful little logo of kiddos plastered across her 6th floor savior. There is zero fussing…she handles all the pokes and prodding like she was born for it and thank goodness because apparently she was. She is happy as ever, more grateful than most and continues to blow our minds with her resilience. And yes…I still want to be her when I grow up.
When I sat down tonight I just randomly clicked on a few posts…I wasn’t sure how I was going to feel or what exactly I was looking for in my own words. Some brought up nothing, others sheer joy and gratitude. Some knocked the damn wind out of me, most I don’t even remember writing. I laughed at how blunt I am…good god I really don’t have a filter…potty mouth, YES…filter, NO. I knew that but actually reading the shit I’ve put out into this world was humorous…which was useful because I also cried…a lot. Way to break yourself McDonald.
The last one I read though…it got me here. It got me to write again. And that was the goal. To feel something, to remember, to find my voice and let go of the fear of using it. It was this one…one I had published back in March…I think it was exactly what I needed to read. So much of it still rings true. My biggest struggles remain. The constant feeling of not being enough. The worry of how to manage it all. The fear that I am going to fuck them up. Reading it though reminded me how far I’ve come…how far we’ve come. I didn’t just say those things and then not do anything. I’ve done a lot that I didn’t really even realize to grow since then. Lately I’ve been beating myself to a pulp with “how much further along I should be” and ruminating on the qualities I lack and the areas I feel I’ll never improve. Being able to look back on my feelings in March I can see that I am ok, I am going to be ok…we are going to be ok.
I was searching for so many things then…answers to so many questions and confirmation to so much doubt. The reflection provided by reading that post gave me a few serious gifts tonight:
- I am no longer the mother waiting for my child to get sick again and I didn’t know that to be true until I re-read my words. I haven’t been that person for a while now. Am I still in touch with the reality of her condition, yes…but am I anxiously “waiting for it”, NO, I really, truly am not.
- The pressure I put on myself is still immense but I have sought out and applied a pile of coping mechanisms since that anxiety infused entry. I’m still an anxious mess…like a lot of the time…but thanks to an admission that I needed therapy, the actual going to of said therapy, meditation and every Brene Brown book ever freakin written I’m certainly shaking my way through days smoother than before.
- I figured out the “work”bit. I stopped trying to pour my liquid life into a 9-5 mold meant for solids. I poured my heart and soul into figuring out how to create something that could serve both my creative/entrepreneurial spirit as well as the scheduling/needs of my medically complicated little super hero. The Mark Makers now exists…from absolutely nothing other than an idea it exists. It is officially a 501(c)(3) non-profit organization and I’ve photographed likely close to 100 children since that March post. My girls know that work is apart of me…I’ve stopped questioning myself on that front…I am confident that they will not grow to resent my choices but go out on a limb and make big ones of their own.
Biggest take away…I’ve overcome some serious fears, fears that were debilitating and in overcoming them they became motivating. I don’t want that to stop, I don’t want to forget that. I never again want to be afraid to revisit the past or terrified of the future. I want the present and it’s a damn good thing since that’s all we’ve got. Why tonight? I have no idea…but there it is…your obnoxiously overdue update on the life of Riley Jane and her rambling mother. I will try to be better about writing, not just for myself but for those who’ve loved and supported us for so many years. Thank you again for everything.
I’ll leave you with something mind-blowing…
Riley is going to be 5 next week.
FIVE. Riley. FIVE. I know, I can’t believe it either. Go. Riley. Go.
I have been silent as conversation pertains to Riley…not because there isn’t anything to say but because it is so ever-changing that the moment I find space to write my thoughts they have already shifted. The prognosis has changed, the plan out the window. A couple weeks back her immune suppression had been tapered down to the point that exposing her to the outside germy world was an option…I had taken her to parks, the library and to visit friends…friends with children, germy children and she played with them. REALLY played with them, children her age. When I told her we were going to visit Elsie…a little girl who she was hospitalized with as a baby who was her very same age it took her a good while to comprehend that there was another four year old child on this planet other than herself. Like…seriously…she was genuinely confused. She enjoyed that day so much to the point that she realized the next what she had been missing all these months in isolation. A realization that led to some “real real” discussions with her…I had to come up with answers to things like “Mommy why don’t I have any friends?”, “Will I get to play her again or am I too sick?”, “Do other kids play like that all the time?”, “If she has the same thing as me why isn’t she sick like me?”. Those questions led me to lie wide awake at night staring into the dark oblivion questioning everything about how I navigate this journey. I had had these posts swirling in my head with stunning images to accompany my words that showed a glimpse into our newly found freedom but now with her all her questions those photos held a less joyous and more heavy meaning to me. I felt I owed it to you all to share, to her to get it right and to myself to get it out. Yet any words I had planned to sit side by side those images didn’t seem valid. Because here’s the thing…she’s not a baby anymore…I am not just documenting my experience and how I perceived it because I have her emotions and words to sway me.
With all of those doubts and questions came my silence. I chose to not make the time or have the gall for that matter to write the posts…why I’m not exactly sure…maybe because I was exhausted…maybe because I felt any interpretation or reality of the situation was fleeting. Nonetheless I stayed quiet. I savored the moments and remained present with the humans directly experiencing them with us.
Last Wednesday we had a follow up with her BMT team and her monthly IVIG infusion. The follow up went well…I didn’t have many new symptoms to report other than her continued weariness and lack of energy. We all felt comfortable moving forward with a plan of eliminating a couple of meds and tapering down on some of the remaining…we were going to continue progressing forward, continue trusting in her bodies response. Within the hour after getting home I got a call from the hospital. For those who know the drill…you KNOW getting a same day call post labs is not typically a sign of good fortune. I reluctantly answered the call and when I heard “Are you still driving?” KNEW the context that would follow would not be ideal. Nothing good ever comes after statements like “Are you still driving?”, “Are you sitting down?”, “Are you alone?”, “Is now a good time to talk?”. I braced myself as I’m so strategically trained to do and listened as the NP outlined for me that the changes we had discussed making were now…you guessed it… out of question. Riley’s labs had come back showing a flare of GVHD…the markers we follow so closely that led to her severe illness and organ failure in January were back…creeping up, rearing their ugly heads and dire plans.
All there is to do is something different. High dose steroids are the first line to halt progression…it worked last time…our hope is it will again. Along with those come a whole series of fun…if you’ve been following her journey you’ve heard my ramblings and descriptions about the side effects of steroids…I’ll spare you all the repetition and just say…it fucking sucks. If you’re offended by that statement then you have never experienced having a child on steroids so your opinion is completely moot and you may kindly piss off for any eye-rolling or gasping that ensued upon reading my words.
The follow up to those is ramping up her prophylaxis antibiotics and starting a new B-cell regulation medication that has been successful in treating lymphomas, leukemia’s and has shown promise in managing chronic GVHD. Note where I say “shown promise”…there is no “HEY this WILL work” medication to prescribe her…clearly if there was you wouldn’t have to be taking your time reading me ramble on because well…she’d be fine and my biggest parental complaint would be how much of a dick little Tommy is in our Trekaroo Outings (or whatever it is that healthy kid parents do). She is unknown. The success of this medication as it applies to her presentation is unknown. The majority of questions that I have are answered with “There is no right answer to that.” and that is NOT because she isn’t receiving quality care. She is in the hands of the best of the best and I KNOW that with my entire being…she is simply a mystery…an adorable little mystery we all long to solve.
The following weeks will be telling…telling as to where we go from here…it may be up…it may be down…wherever we go I’ll be by her side…waiting for her queues, listening to her team, answering her questions and convincing myself that whatever comes I can handle because…well…my patient is my teacher. She’s got this and so do I.
You’ve done it before…more times than I care to count…Read. Share. Send Love.
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 fuck? 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.
Hey guess what…we have no idea what triggered any of this. Shocker, right? I know. How very unique of a situation for Miss Riley to be in (insert eyeroll emoji here). So far every culture has come back clear, every viral panel negative…her vitals have remained stable and fevers at bay since we bombed her little body with steroids. Her chest X-Rays show some “haziness” in her lungs…maybe pneumonia which shes been getting prophylactic treatment for but for added kicks we started a full course. Maybe some random unknown virus she picked up despite our precautions? Maybe just more manifestation of GVHD? Who knows. If it’s the latter that’s more of a chronic issue and so will show itself more over time…it’s already been in the plan to do a follow up CT scan in the coming months to peek in on her lung progression so that plan remains.
She isn’t eating or drinking a ton but has been on round the clock fluids so hopefully once those are stopped her appetite and thirst will return. She slept the majority of the day yesterday…maybe she needed the rest or maybe much like a long flight she knows time just passes quicker if you sleep through a good portion of the hours. Either way she is stable enough that whatever this is we can continue working through at home. We of course want to minimize her exposure to anything else so the less time in these halls the better. We’ll be headed home today with some adjustments to meds, another heavy dose of perspective, heaps of caution and a few more gray hairs.
Maybe this admission needed to happen to show us that it’s possible for her to get sick but not THAT sick…and of course by THAT sick I’m not trying to belittle her past couple of days just tout the fact that she’s still walking and life support didn’t get involved. Tiny victories, right? She’s come a very long way in a very short time…we still don’t know where the hell we are going but are headed up, down and all around together. When we were last discharged it was without all the answers but I have even more confidence now in the valuable knowledge we gained. I feel less vulnerable about the unknown and more confident in the bits that we do know. We’ll be walking out of here today with no answers but Riley in tow and that is all that matters. That 6 week roller coaster provided us with precious insight to this complicated little person that kept us steps ahead this go around. We’ve learned to be stupidly cautious, to trust our instincts more than ever and to never underestimate the quickness in which her little body can turn on itself. There are few things more rewarding than getting to apply those “lesson learned” tactics which were once hindsight to a current situation and watch it unfold in success. If this was Riley’s way of testing her parents, her UCSF team and her overall support system…we passed. She passed.
Clearly the next few days will be very telling…she could take a turn that ends us right back up here or she could just get back to skipping through the house as if none of it was real. Stay tuned and once again…all that love y’all send is more appreciated than anyone will ever know. xoxo
Go Riley Go.
Oh this place. This room…I’m looking around and there isn’t a thing that I don’t recognize, not a single detail that doesn’t feel intimate…familiar in ways that only my own home is familiar. You know those commonplace bits of a house that only the inhabitants are keen on, like the creaky tones in certain floor planks or the exact origin of a knick in paint that is unnoticeable to the visiting eye. But you…you hear the creak, you hear it maybe because you remember the first day it began or maybe because it’s always been there and that’s part of it’s charm. The scratched paint…you don’t just notice it, it’s all you see when you walk by. Years later you’ve now found yourself breaking into a grin instead of cringe recalling the exact moment of contact between that damned “Sit to Stand” walker commandeered by your eager learner, the culprit of the scratch. Those are the privately ordinary parts that make a house a home.
The room I am currently sitting in I have never stepped foot in. But I know it all. I’ve got every inch memorized. They’re all the same…maybe not in exact physical detail but holy emotional carbon copy. Unlike a home the sounds are not consistent creaks underfoot but beeps, shrieks from down the hall, the rolling of beds and carts, the robotic ramblings of a “TUG” stuck in the hallway, the sound of your thoughts racing and your stomach churning in nervous hunger. For food or answers? Both? Neither. The scratches aren’t in the furniture…they’re in you…they are the wounds brought on by being a past, present and future resident deciding whether now is the time to open again or continue healing. The ones you’ve been nursing and could almost convince yourself no one sees but boy do they stand out under the florescent lights of a hospital room…or in my case in the glow of my computer screen and my tell all fingertips.
Saying I can’t believe we are here feels ridiculous. Of course I can. The moment I walked through the doors I felt like we never left. It’s an all consuming form of confusion. The lack of sleep is probably aiding in that but I feel as though I have either been sucked back in time or catapulted into the future. I don’t feel shocked that we are here…but today? I don’t feel like this was going to be my current day situation. An all nighter in the local ER ending in transport and readmission at UCSF just wasn’t on my radar. Or apparently it was…I remember standing up last night just to go to the bathroom and looking over at her…she looked peaceful, comfortable, perfect. She hadn’t made a peep all night…for once she actually seemed to be resting easy. Touch her. My inner voice was clear. Touch her. I don’t want to. Now. I knew then. I reached over and spread my palm over her bare back…fire. The type of heat you forget can radiate from a human and are reminded every time fever strikes. Fuck. I sauntered down the stairs for the thermometer…the very heavy first steps to a very long night. Fevers for most mean Tylenol and cool wash cloths with a side of cranky kid…congratulations “most”. Our protocol is a pinch different. All the rushing around, tests, frantic discussions, questions, teams, yada, yada, yada…you’ve read the blog before and you’ve seen Greys Anatomy…your imagination can fill in the gaps I leave. Bumping along 101 watching the sunrise out of the back of an ambulance this morning my thoughts spun…positive perspective weaved in and out of every ray of light and then cold hard reality bottomed me out as the tires slammed into potholes. Oh, baby girl.
We were wheeled onto the 6th floor and of course met by a slew of familiar faces…coming here now is like visiting family you only see at funerals…both parties genuinely embrace and squeal about how happy you are to see each other and then upon pulling back from the hugs those smiles melt into remembrance of the shit nature of the real occasion that brought you here.
We are here. Riley vs Riley Round ___ …ugh…I’m not sure even sure at this point. She’s resting easy now which tonight I’m going to go with means… she was craving a lick of attention and will get her act together soon and be back bouncing off the familiar walls of home…our real home before I can even really believe this happened. Sleep…she’s doing it…I should too.
Send us all the love you’ve got to spare. xoxo
I have urges, needs, dreams, desires, goals. I’m human. I have all of those things. Some of them are selfish and some of them are selfless. Finding a way to combine all of my worlds seems to be my hardest task these days. Maybe because it’s the one task I’m supposed to have the most control over though lately I feel I have control of nothing. I’ve swallowed the far too large pill that is Rileys health. I know I cannot control what happens to her but also know how to be right there with her when it does. That part I know I can do. That is the only thing I am sure of. I know how to be “that” mother…the hospital mother…the “nothing else matters but this moment” mother. But right now…right now Riley is home, she’s stable(ish) and so my most important job is to be a functioning mother in the out and open. The mother who’s skin I can live in and they’ll be proud of. The mother that isn’t waiting for one of their children to get sick again. The mother that makes them grateful for every moment without making them feel time is fleeting. The mother that attends to their needs but teaches them independence. I don’t know who she looks like…I don’t know how to manage the time and responsibilities in a way that serves every aspect of our reality. One minute I want to quit work, live off grid and soak up every moment in the sunshine with Riley knowing that there may not be an endless amount of summers ahead of her. The next I’m yearning to go back to work for 2 reasons…number 1 I am passionate, full of ideas and LOVE working, number 2 I need Presley to learn the balance of working mother and know that even through hardship women GET. SHIT. DONE. The next I want to curl up in a ball in the farthest corner of my house and hope that no one asks me for anything because even the request of toast might break me.
I look at them and am lost as to how to not fuck them up. I honestly feel like that’s 98% of parenting…just not fucking them up. When I go back to work will they understand and appreciate now that it is because there are bills to pay?…because work is a part of me?…because it’s a part of teaching them ethic? Or will they just feel secondary…secondary to my schedule…secondary to bills…secondary to lessons they won’t value until they are past the phase of thinking I just suck. I envision Presley as an adult…who do I have to be to make her look at me and thank me as opposed to resent me? What is the schedule that will make her remember me as a dedicated mother and professional? How do I work to put food on the table but also sit at it with her? And then there’s Riley…Riley I can’t picture as an adult. Riley I can only see in the present…which makes being away from her even harder. The life lessons I yearn to teach her are simpler…they are to enjoy, to endure, to appreciate…to just be present. Funny thing is…I feel I’m learning most of that through her. There is not a human on this planet that I have learned more about endurance and appreciation than that little lady. But while most days I feel she is my teacher I am still hers.
The pressure I put on myself is immense but necessary. There isn’t a thing I can put down. Nothing I can neglect. I have an enormous tribe of supporters but at the end of the day it is me tucking these girls into bed and hoping that tomorrow I’ll be better for them. And then I lay myself down and beg that tomorrow I’ll be better for me. I looked at a calendar yesterday…reviewed all of Rileys upcoming appointments and Presleys school functions and around that I penciled in a work schedule that I think I can manage. Trying to plan my life out even 5 weeks in advance seemed ludicrous…my brain keeps taunting me. It whispers things like “sure lady that’s a great plan”, “ha…this looks a whole to like the schedule of a healthy kid mom” and then it shouts at me “you’ll never pull this off” and then “fuck off, yes you will”. Earning a living while raising non-assholes while managing Rileys complicated little body while maintaining sanity just seems well…impossible. But it’s not. It can’t be because turns out that is my life. We all only get one…this is mine and it has to work, it has to be beautiful, it has to mean something…it has to do all of that…for them.
As for Riley…she continues to equally amaze and confuse us all. The only thing that is certain about her is uncertainty. We have no answers only more questions. We have no cure only management. We have no timeline only the time in front of us. We have one goal and that is to keep her as happy and healthy as her body will allow and love her viciously no matter what. I keep telling myself that somehow if I just keep coming back to that thought everything else will fall into place. We aren’t in the hospital anymore Toto…we’re back in the world and it’s time to be a part of it.
As per usual…thoughts, prayers, juju…keep it coming y’all.
*Disclaimer…Lately finding the time to write and then actually get what I write onto the blog at the same time has been proven impossible. For weeks now I’ve written off and on but the moments to post have been fleeting so I’m left with half finished thoughts, paragraphs and updates no one will ever read. Whoops. Anyway…this one was too important to stay in just my possession so while I know it is now Thursday (or at least I think it is) this was written Sunday. Forgive me? xoxo
Riley is next door…on the floor with Papi playing their millionth round of Barbie wedding. I’m next door as well shoveling leftover pasta into my mouth with crossed fingers that each bite will soothe the hangover rattling in my brain. My brother doesn’t come into town often and turns out we had a bit to catch up on and that clearly involved more beers than my next day body felt necessary. I stroll back to my house to get Rileys afternoon meds ready and as I open the back slider I hear the door bell. It’s Sunday. Who solicits on a Sunday? Rude. Don’t these people know I’m in no mood to say no to solar?! (not because I don’t support it I just can’t afford it). I open the door to an empty porch…no salesman…just a gift bag, I look up and see a car pulling away but not one I recognize. I lift the gift bag and peer into it…there’s an envelope protruding that reads To: Riley and Family. I set it on the counter, pull up the meds and then carry back next door with me two different pain meds, chemo and a gift. Happy Sunday. Riley is expecting the meds but the bag excites her. We open it up and as I read through the cards I’m humbled…there is never a name other than ours. I don’t now who its from…before I even get to the gift I don’t know who to thank and am immediately consumed with curiosity and my all time favorite emotion…gratitude.
Inside is a blanket…a quilt. It’s blazing pink and stupidly soft on one side but the other side…the other side is a mix of patterned fabric and pictures. There is an image of Chris and I donning Zebra capes in New Orleans during a SCID convention, one of the hospital staff happily holding a sign announcing Rileys initial release from the hospital, a couple of the sketches that my cousin had done that saved me during this latest stay. And the middle…the middle has “Go Riley Go”…smack dab in the center which has been my mantra from the beginning. When I’ve had no other words “Go Riley Go” has conveyed what we all want. We just want her to go, to keep going and going and going. Denise and I grab the edges as we notice that there are names…we both have the same initial thought…this must be who it’s from. But then we look closer and there are names going around the entire perimeter…names of people I know, people I don’t, people who are my dearest friends and family members and people who are strangers but vigorous Riley supporters. The words on the card now make more sense… it reads:
To Riley & Family,
We made this blanket to represent each person & family that supports you through your journey. Hopefully, for everyday we cannot be there in person to show our love & give big hugs you are able to wrap yourself in this blanket to give you strength & support. Or at the very least make those uncomfortable days just a tad more comfy. Go Riley Go! 🙂
I’m speechless. Humbled. Moved to tears. The cure to my hangover was not pasta…it was this. It was the reminder that our little family is still in the hearts and on the minds of so many. A reminder that our journey is nowhere near over and someone took an obscene amount of time to let us know they knew that. A reminder that when I’m not at my best I can be made better by my support system. A reminder that no matter what life throws at Riley she will always be loved by so many. That WE will always be loved by so many.
Thank you doesn’t do it justice and especially because I don’t know who to thank. For now I’ll thank you all…each and every name that flanks the edges of our new go to hospital blanket:
Mickey & John
Danny & Didi Stout
Dan & Jessica Proctor
Cathy Mitchell & Family
Elsie Brooks & Family
Walsh Family (SCID Group)
Shannon Reed & Family
Your Hughson Family
UCSF Nursing Staff
SCID Angels For Life Foundation
Ane & Family
Entire SCID Group
Thank You, Thank You, Thank you.
We had an appointment up at UCSF on Tuesday and let’s just say on the drive home she felt all the love & support. 😉 xoxo