Tuesday, July 9, 2019

It was my brother's birthday (and other dates).

Today was my brother David’s birthday.

Now it is David’s unbirthday—the second birthday we are marking without him here to mark it. Tomorrow, we will set the countdown to the day he choked (September 15) and then his death day (September 23) and then on September 24, we’ll march towards his funeral day (October 2) and then finally on October 3, this will all be over for another year.

I hate remembering all these dates; but I cannot stop.  The numbers float in my head like bugs flitting against a porch light—pinging my consciousness and demanding to be let out.

July 9—demands—“Celebrate your dead brother’s birthday.”

September 15—screams— “Why didn’t you answer your phone the first time your mom called? Why weren’t you there at the ER to make them save him?”

September 23—begs—“You need to write to his organ recipients, they want to know whose eyes they are seeing the world through.”

October 2—soothes—“Just one more day and you can lull yourself into the fantasy of normalcy for 10 months until 7/9”

It’s those dates that won’t simply go away.  It is those dates that have taken so much from me. They’ve taken my role as a sister (and it is okay, because it is true. I was a sister. I am not one anymore, even though I have the muscle memory for that job; death fired me from it).

Those dates have taken my belief that I won’t witness anymore horrors in my life (really, there are so many monsters under the bed waiting). They’ve taken my simple sleep and given me random, sneaky nightmares of my cell phone ringing in the early morning with a resident on the other end explaining that my brother crashed, again or telling me, now, now, now, get here.

Those dates have made it impossible to bury my brother’s remains—because once I set that date I will have one more date to remember and one more bug to fight. Those dates have enslaved me to a calendar—giving me freedom when they are done with me, only to come back again, loudly demanding my observance.

Next year, it will be July 9 again. And was my brother’s birthday.

Monday, May 6, 2019

David's Nurse.


My brother was 37 years old. It was rounds in the neuro-ICU. I had endured four days of rounds and some conversations at 11pm on admission night. David had choked five days before I collapsed on the ICU floor, hearing sounds that seemed far way.

Those sounds were me. And I was screaming. David was not going to wake up.

The doctor was one whom I had peppered with demanding medical questions for days and stalked in the hallways and the elevator using every bit of medical knowledge I gleaned from other real-life medical dramas and the medical journals I kept reading on my iPhone. I had boldly demanded to know how organ donation would work should it come to that. I had remained professional—a professional patient advocate—because that is my wheelhouse. I trained through two stints through the other NICU (neonatology) with with two premature infant daughters, one long round as a mother of a child battling a brain tumor and endless work aiding my father at the end of his life. 

I knew how to navigate the hospital system. I knew who to ask and when. I knew all about rounds and which administrators to race to if something was not going as planned. I knew how to advocate and how to ask and how study to drug interactions and medical research.  I knew how to arrange for organ and tissue donation—even for full body medical research donation; not that I thought it would come to either of these options. 

But, I knew. And I kept it even and professional and made it my job to be the professional hospital spokesperson for my family. 

What I had no idea how to do was be a sister to a dying young man. I had no idea how to direct someone who was young and fit towards death. I had no idea how to process any of it and to grieve the horrible decisions awaiting me as Trish the big sister. 

That’s how I ended up on the floor, screaming No and pointing at the doctors on rounds as if they were terrifying aberrations—angels of death there to claim my brother’s body and soul—the very evil I had fought so hard to keep away with my questions. 

The explanations were logical—the signals in the nerves of David’s body were not making it to his brain. There was still brain activity; but none in the right places. He was not brain dead. He was simply never going to wake up. We’d need to enact our organ donation plan. We’d need to make those decisions and move quickly because other things were also beginning to fall apart. The final thing I remember the doctor saying: “Maybe this weekend you can plan to have everyone say goodbye.”

A social gathering to plan, apparently. And that was it for me. I was on the floor. 

Jennifer*, the nurse in the Jefferson NICU was the one to pick me up. She scooped me right up, took my cell phone and called my husband. She explained what happened. Then let me explain too. 

Then she sat with me until Mike arrived. She never hesitated. She never asked my permission to provide comfort. She did what she had to do, because without it, I’d still be on that floor. 


***

Jennifer was not a new nurse to my brother. A day or so earlier, she was there asking what music he liked and getting a speaker in to play Sinatra. They were trying to warm David up-to get him to wake up and join us. Jennifer said she often played music for patients.

She asked us about David’s life—what else he liked, where he lived, what he did. At first, it struck me as odd—I am not used to people asking me anything about David the man. David was severely developmentally disabled. He was non-verbal. He lived in a group home. Most people never looked at David as a person with interests—the default questions was about his general well-being. Rarely did someone say, “Hey, does David like sports?” “What’s David’s profession?” “What’s he doing with his life?”  

Jennifer knew all the things that were in his chart; but wanted to know more. She wanted to know what music he liked and what TV shows he watched and if he had a good sense of humor and who his friends were. 

No one ever asked if David had friends. 

***
Two days after I was on the floor, Jennifer was back in the NICU as David’s nurse. We had been there since the pre-dawn hours—getting the call at 2 am that David was not stable and suddenly he had a fever that would not cease. At 7 am, in walked Jennifer. We had emergency rounds—the doctor on call dialed in using a robot (which is surreal) and then appeared in person an hour later. 

David was actively dying. His fever was skyrocketing—even as they packed his body with cooling blankets—it kept going up. Gift of Life arrived—the arrangements were made. We had an operating room time, 30 vials of blood to collect, eye drops to preserve his eyes for donation and so much to do. 

Our nurse brought me a basin to give my brother a bath. I was to clean and prepare him for death.  I know this sounds so incredibly horrible; but she allowed me to serve as David’s big sister one final time. I treasure those moments of being able to care for David—to touch his face and to see him again. 

All the while, she managed dosing, hung IV bags, continued to try to cool David and keep him alive. He needed to live long enough for the operating room. We needed to make his broken body a gift to others. Our nurse knew this—she knew how much we needed to have a piece of my brother live on.

She pulled all those vials of blood, while watching his monitor—every single draw lead to a physical reaction in David. He was so unstable. Jennifer kept pushing forward—just one more and then another—until they had what they needed to make matches. 

Then we had to leave to scrub up—waiting to see if we would see David and say goodbye one last time in a sterile operating room, with 10 various medical personnel who were ready to take what he no longer needed. 

It is not a normal way to watch someone die. 

When we walked into the operating room—in our sterile scrubs—Sinatra was playing. And Jennifer was there. She was there and saw the most painful moments of our lives. She was there and she cried with us. She was there when my brother took his last breaths and I lived through my last moments of being a big sister. 

And then she left. She went right back upstairs to find the songs that would give another sister comfort and to pick someone else off the floor, all while managing doses and vitals and medical questions. 

Jennifer was our nurse. There is not a day that goes by that I don’t think of what a gift it was to able to wash my brother’s face and then send him off to Sinatra as a hero and organ donor. 



Those gifts are only mine, because of our nurse, Jennifer. 


Wednesday, November 14, 2018

I forgot how to write

It is 9:50 pm.

Okay, now it is 9:51pm.

For 53 minutes, I've been sitting with my laptop open, desperately trying to start writing a piece. It is a piece I am being paid to write. It is a piece that very needs to be done soon; in truth the writing of it is long overdue, even if the due date of the complete piece is still on the horizon. 

However, there is a tiny problem:

I forgot how to write. 

Now, I know that sounds completely and utterly idiotic, especially because I wrote "I forgot how to write," as well as several written sentences at the start (and clearly I intend to keep up this ramble for several paragraphs more.).  

However, writing is much more than the act of typing words on a page. Writing is an act of illusion in which the words are chosen and matched and paired and joined and then the sentences are culled and pulled from thin air like glass from sand, until those sentences are chosen and matched and paired and joined and then the paragraphs are culled and pulled from thin air like glass from sand, until those paragraphs are then, you guessed it:

Chosen and matched and paired and joined and culled and pulled from thin like glass from sand until you've formed this harmonic, melodic piece of writing from a place where there was absolutely nothing.

It is now 9:57pm.

I am not entirely sure when I forgot how to perform this trick--how to make the page fill with words and form the illusion of something that is real, when it actually is not real, but is simply characters dancing together in harmony on a page. 

It is now 10:01pm. That run-on sentence took me 4 minutes. 

10:03pm, I went back to reread what I wrote. 

I forgot how to perform this magic. I forgot how to write. 

10:04pm and I have absolutely no where to go with this schtick, no where to carry my darling forward and no words to begin the piece that I must begin. 

10:05pm and I wonder when I actually forgot how to write and I wonder if I remember when I forgot, maybe I can remember when I remembered how and then I will no longer forget.

And it will be 10:06pm and that page will begin to dance and delight and illusion itself into something that you can hold in your hands; but you think can.

10:07pm. I might remember a little how to write; maybe it is like riding a bike. Maybe I just have to trust that I will remember--at least I can fake it through 10:08 and 10:09 and 10:10 and maybe by 10:15pm, I would have faked it enough to make to the first sentence of something that can be culled and pulled and matched and conjured into an illusion. 

It is 10:15pm. 

And well, maybe now by 10:25pm I'll figure it out again. 






Monday, July 9, 2018

My Brother's Eulogy, on his 38th Birthday

Today, my baby brother should be turning 38 years old--celebrating with a meal at his favorite diner, while wearing a new pair of sunglasses. Today, I should still be a sister, but I am not. 

I was a sister. And David was 37 years old when he died. 

I am not at a point in my processing to look for God's plan in my sweet brother's death. I don't think I ever will be. His life was extraordinary--he quietly battled every day to find a place in a world that would not always understand him or accept him. The world underestimated my brother. It discounted his contribution and his value. I did, too, so many times. 

I am sad that he isn't here for me to celebrate the invaluableness of being David Carrington. 

There are no birthday gifts that can be purchased for the dead. They can't take it with them--they can't stop back and unwrap it--there is nothing they need. There are only the gifts they left behind for us. 

I never shared my brother's eulogy. It was hard to write and hard to deliver--but today, I needed to read it and I need you to read it. David left behind so many gifts. 

Happy Birthday, baby brother. 




During rounds at Jefferson Hospital, I made it a point to be there and to install myself in every discussion of David’s status. I am absolutely not a doctor and I have no formal medical training—but I am quite well versed in the hospital life and write about cancer research—so I can decipher and ask and pretend like I have a medical degree. As the team reviewed his neurological status, his lab work and blood gases and his medication, they’d always stop at one point while calculating the doses of drugs to ask—

How tall is David? 

I’d respond—he’s 6’3”. To which they all murmured, “really?” “he can’t be!” “He does not look 6’ 3”

Then they'd debate amongst themselves if it was possible-I’d point out the bed extender—added to give his hospital bed length, so his feet would not hang out and even with that obvious evidence, the medical team—used to having concrete proof of things would not believe me.

David was measured 4 times while in the hospital with a measuring tape. And even then, they seemed to question how he could be just so tall.

People were always underestimating my brother.

Whether it was his height or his cognition or his ability to feel joy or his very value as a human being, David was underestimated nearly every single day of his life by all of us.

In the summer, after we celebrated his birthday, July 9 and then my birthday July 24, we’d always take our annual trip to Wildwood Crest. We rented the same half of a Victorian house each year. For my 7th birthday, I received the most marvelous present—a seahorse My Little Pony. I coveted this amazing peach colored seahorse with aqua hair and a matching aqua inner tube. Her name was Seawinkle and she was amazing. No one, especially my little brother was allowed to touch her. The entire two weeks in Wildwood, I brought her everywhere. We swam together, we walked the boards together, I even brought her on the little kiddie coaster that I was finally tall enough to ride.

David tried to play with her constantly. We fought. My Dad yelled. My mother would have just handed her to David to force me to share, but no one was prying her out of my hands.

Until the very last day at the beach. I was gathering my stuff around the house and left Seawinkle alone for just a minute and then she disappeared.

I immediately knew who took her. I screamed. I accused. I told my parents it was David. They punished me and I screamed more.

The whole time, my little brother, sat smiling. He was 4 years old. He could not speak; but he certainly could smile at his big sister’s distress. My parents looked everywhere. I was forced to dig through the trash. David kept sitting and smiling. He was sitting right on his suitcase, with the most sinister smile on his face. My parents still would not believe me—clearly my special needs angelic little brother would not be capable of diabolically stealing my beloved toy.

And then my Dad gave up, said I’d get over it and told David to stand up so he could pack his bag. My dad opened it up and inside was Seawinkle.

Right where my brother had put her.

My parents underestimated just how good David was at being a little brother. He really perfected it to an art form.

When we prayed the Lord’s Prayer every night together before bed—David would smack me when our parents had their eyes closed. He’d do it silently—David was non-verbal after all, and in being so was the master of the silent, stealth attack. He’d smack, sometimes poke and probe and kick, until I could not take it anymore and the devil would explode right out of my mouth before I could say , “Forgive us our debts,” Then I’d be punished and David, well, he’d continue on with that twinkle in his eyes.

I once created “Tricia’s Backseat Rules,” which I’d whip out for every car trip over 10 minutes. I’d review them—David could not read. David broke every single rule without my parents knowing. He’d cross over into my car territory, he’d touch my stuff, he’d even touch me—which was expressly forbidden. And he’d do it looking me directly in the eye with that smile of his.

When I would tell others about how annoying my brother was—there’d always be one person who would tell me how cruel I was to think my special needs brother was bratty or irritating. The guilt piled on by outside perceptions was frequent—but really, those caring individuals were just underestimating David’s ability to be the best little stinker and give me a run for my money.

I probably deserved all of it. And David was the best at driving me nuts and the best at loving me as a little brother should.

That’s my little brother, who grew up to be 6’3” tall and died at 37.

I never prepared myself for this day—I never thought I had to do this—eulogize him at church. I always assumed my healthy, tall, vital brother would be the last one to go and my children or my grandchildren would have the responsibility of planning a service for him.  David was always so healthy and strong and alive. But, I suppose, the small blessing, is that I can be the one to offer words about his life. David knew me better and more deeply than just about anyone here—while he was the one with the OCD that required items in a room to be arranged just-so, I am the one with the control issues that cannot stand the wrong thing to be said. We shared that—the Carrington Stubbornness combined with bizarre illogical control issues.

I hate talking about him in past tense.

Today is really hard. All the days have been hard since we got the call that David had choked and went into cardiac arrest. That day that my brother’s eyes stopped opening.

But here we are. While, David was my baby brother who terrorized me. He was also the baby brother who comforted me when no one else possibly could.

As I mentioned, David was non-verbal. He could not speak. He could say Ma and Da and he could laugh—his laugh was loud and joyous and goofy and just perfect. He could make sounds to get your attention. But, I never once heard him say my name. There were some Ta or Tr or T-like sounds, but never Tricia or Trish or Tish or Pat (which, if he could have spoken, would be his name of choice, because It would have driven me crazy).

I really have no idea what his voice would have sounded like if he was able to say words.

But, David knew how to speak without words. It is tough to explain—unless you knew him. David was a listener. He listened. He observed. He watched. Once, when I was about 11 or 12, I had a huge argument with my parents. I don’t remember what it was about, but I do remember stomping and screaming and shouting and being sent to my room in tears and rage.

I slammed my door and there was a knock. I opened it, ready to yell at my parents some more and there was David, with a tissue.

Even then, I was surprised. I underestimated him.

David always knew exactly how to meet people where they were. He moved through life this way—offering tissues, offering handshakes, offering hugs. He was the good samaritan in an emotional crisis. David did not take sides. He did not care of the details of the argument. He was just ready to quietly knock and offer a tissue to his crying sister, who felt so misunderstood.

The number of times my brother knocked on my door in our lives togehter is impossible to count. He was always there with a tissue, a smile and then, happy to listen to my rage and complaining about my parents or my friends or my boyfriend. He’d hit at the air in agreement with my anger. He’d laugh in therapeutic mockery of the one who wronged me.

He’d bend down and offer his big sister a kiss on the head and remind her that she would never be without his love.

That’s my little brother, who I underestimated. Who grew up to 6’3” and to be the man without words, but with all the love.

One of our favorite games as a kid Uncle Davey game. The game as simple, it usually took place on Sunday afternoon, for about 3 hours. I’d grab my cabbage patch kid, Daisy Julianna and chase David around the house for hour shouting “Come here Uncle Davey! Play with me Uncle Davey!” David would laugh and hide and I’d hide and pop out with his pretend niece.

To make my brother into a real life Uncle Davey, gave me such joy and gave him such joy too. I loved hearing my kids shout his name. I loved watching them have dance parties together and playing with light sabers and simply be his nieces and nephew. I loved watching my little children look up high to their uncle.  I loved watching my tall brother bend down and kiss them right on the head.

There were no strangers to David. If he encountered someone he had not met before, he’d pat them on the arm and then offer them his hand for a handshake. Every where we’d go, someone would know David—at the diner for his birthday lunch in July—the waitress knew him by name. We went out to dinner in August, and David sought out a man dining alone—he offered him a handshake and a smile.

David sought out people—he sought them out to listen to them and to show them his world. David could not speak, but he’d take you by the hand and show you things—he’d show you the things that gave him joy—music and food and laughter.

And no matter how many times people rejected him—believe me, many of us are uncomfortable with a 6’3” developmentally disabled man we’ve never met trying to pull us around a store—David did not stop. David never gave up sharing the love. He was rejected so much in his life—but David never learned that sad lesson of being the one doing the rejecting. David forgave instantly. David loved freely.

In the days since he’s died, so many people have sought us out to tell us how much they’d miss his hugs and his smile and his laugh. David made the world joyous and beautiful just because he loved people so much.

My little brother grew up to be a man that loved in the way Jesus taught us.

###

At my wedding, David was a groomsman. I did not know how it would go exactly. And I had no expectations he’d really do anything except be there. Mike and I both knew we’d never get married without David standing by our side. And in the all years Mike and I dated, David was as much Mike’s brother as he was my own.

At wedding receptions, the dancing sometimes gets started slowly. Everyone needs a couple cocktails to get out on the floor. But, David, well, he was not into the slow start. The entire night, David pulled each and every guest onto the floor. There was no one excluded or left behind. He made our reception the best party ever. When I was looking through photos, I tried to find out of him dancing—but they were all blurry, because he was busy—busy living life with joy.

After our father died, we decided that David needed to leave home and move to a group home. We prayed for a place that David would be safe. I prayed for a fast placement—my mom was struggling, David was struggling, I was struggling and David needed to be well taken care of and safe. Within a couple months, David was placed at Galloway in Bensalem. I know my mom struggled with the thought of sending David away—but the moment David meant Anthony and the entire staff—David never looked back. David found himself a grown-up home. A place where he could live a life separate from us. He worked at BARC workshop. He went out to dinner and shopping and to the beach and lived this beautiful grown-up life without us.

David had a good life.

####

At the end, when David developed pneumonia and there was nothing more the doctors could do to help him breathe, we made the decision to move to comfort care and to donate his organs and tissue. David’s body was failing. His oxygen was in 60s and 70s. His blood pressure was lower than I knew possible. He developing a neurological fever that topped 106.5. His heart could have simply stopped at any moment. Leaving him dead. And leaving him ineligible to donate his organs.

We prayed. We prayed so hard for a miracle to heal David on earth and bring him back to us. But, in those last hours of his life, our prayers became something different—our prayers became the prayers that David’s death would result in life. That his body’s suffering would be the miracle that other families were praying for.

And on Saturday afternoon, time was short. Preparations had to be made. His doctors pulled out all the stops to keep him alive and lower his temperature, raise his oxygen and his blood pressure. The Gift of Life made arrangements for a surgical team. David’s vital signs kept worsening. I whispered—okay I yelled because no one in my family knows how to whisper—in his ear to just hang on—I told David he could go, but we needed him to wait—to just wait a little—because people needed him. Every time, I’d nag my brother to live just a little bit more, he’d rally. His vital signs would improve and my strong, tall brother hung on.

Within a couple hours, we all met in the operating room. David’s nurses knew about his love of Sinatra—so Fly me to the Moon was playing. We removed all the things keeping David alive and said goodbye, as our hearts broke.

That was my little brother—the man who would die a hero—donating his kidneys, heart valves, corneas and lungs and giving his joy go freely to people he never met—because David never knew a stranger.

As much as I feel myself filled with grief and sorrow—and it feels so right to rest in the grief—today and everyday need to be a celebration of my, of our David.  The man, the son, the friend, the uncle and the brother who loved music, who loved to dance, who grabbed everyone by the wrist, pulled them out of their comfort zone and invited them to dance, who celebrated the Sabbath with joy that rocked his whole body and conducted choirs without asking for permission, who laughed at every joke with an open mouth and a joyous twinkle in his bright blue eyes, who greeted friends and strangers with handshakes and bear hugs, who brought tissues and empathy to the broken, who hosted dance parties for his nieces and nephew, who ate every meal as if it was his last, who was born to be the beloved uncle Davey, who held onto his earthly body even as it failed to give five other families a miracle on this earth, who was underestimated until his dying breath, but now lives forever with Christ and will forever live in the music and the laughter and the dance in our lives, until we meet again. Today, we celebrate this great man and vow to celebrate him every time we are tempted to ignore a stranger and everyday it seems easier to offer a rebuff instead of a tissue to the broken.

###

David loved music. He loved Gospel choirs, Frank Sinatra and Andre Rieu and Yanni and most of, Lawrence Welk. When we were growing up, Lawrence Welk came on at 7pm each Saturday night. Around 5pm, my brother would begin to get excited. He’d fill his cheeks with air and put his finger in his mouth to make a popping sound—the sound of Lawrence Welk’s champagne bubbles popping.

My mother and my father would be excited too. I’d look for a book to read and pray none of my neighborhood friends knocked on the door while this spectacle took place.

And watching Lawrence Welk in my house was a spectacle. My dad sat and cheered. My mother would occasionally stand and sway or do a little polka. I hid in horror (the house was not very big and even in my bedroom, I could hear the polka and the Lennon Sisters through the vent). David stood right in front of the TV and conducted the entire show. He loved the show opening, the songs and acts in between and even the last song—the goodbye song played each show. We agreed on the goodbye song—I loved it, too, but because it meant, that finally, I could have the TV back and the spectacle of Lawrence Welk would end.

I will not sign the song for you, because while God gifted my brother with musical ability, God gifted me with words only. I cannot think of better words to use to say goodbye, to my sweet, beautiful, brave, brother who was so much better than me. David is a hero and may God help us all to remember that as the days go on and may God bless us all with the same heroism when the time comes.

In the words of David’s beloved Lawrence Welk:

Good night, good night until we meet again
Adios, au revoir, auf wiedersehen 'til then
And though it's always sweet sorrow to part
You know you'll always remain in my heart

Good night, sleep tight and pleasant dreams to you
Here's a wish and a prayer that every dream comes true
And now 'til we meet again
Adios, au revoir, auf wiedersehen
Good Night!

Good night, sleep tight and pleasant dreams to you
Here's a wish and a prayer that every dream comes true
And now 'til we meet again
Adios, au revoir, auf wiedersehen
Good Night!

Good night baby brother. 

Friday, December 1, 2017

Grieving the words.

I have this theory that death brings about new birth--I remember when my grandfather died, I met Mike—my husband and soulmate. When my Nana died, I found how much I loved words (over architecture) after reading through volumes of Edna St. Vincent Millay poetry that I found on her bookshelf. When my Father died, our miracle boy Nicholas was born. 

Energy is never lost--it just changes. 

When my brother David died, I really felt like I'd given birth to all the things I would. I wrote posts about his accident, his coma and his death. I wrote his eulogy. But I had nothing left.

I noticed it in all my projects—I was still writing and the writing was, okay. But, I found myself not caring which words I placed on the paper. I had no more moments of racing out of the shower to find my notebook to write down a brilliant turn of phrase. I have not written a brainstorm on a Post-It in two months. I did the writing work. I wrote the words. But I have not told a real story since I lived the story of my brother dying. 

David choked; and so did I. It was as if the right words—the perfect words—were choked right out of me. 

Monday, I had a particularly horrific writing day. I just could not do it anymore—even placing words on paper felt pointless. A colleague gave me negative feedback. I gave myself even more negative feedback--verbally lashing myself until I felt raw. I spent the day grieving David and grieving the words and grieving that I was failing my responsibility to be the surviving sibling who was living life to the fullest. The grief was so intense I had a hard time not crying in public and spent a large part of the morning stress paralyzed in a coffee shop with tears streaming down my face. 

Because for a writer, a world without words is gray and sad and empty. 

Tuesday, I thought maybe I should focus my energies on learning time management or accounting or something practical. Then a random email about a writing program I’d been casually researching for a few years popped up in my email notifications. I deleted it.
Wednesday, I had 15 minutes of downtime waiting for an appointment to start. I decided to be practical and clean out my inbox. There was that email from John Hopkins University—I thought I had deleted it. I noticed it was a reminder about an Open House--an Open House in October. 

The email was dated 9/18/17; the last Monday of my brother’s life. 

I clicked the links and then started an application on a whim. I am not sure why; I just did it. And then I forgot about it. The day got busy. I moved on to other things. 

Then Wednesday night, my computer was crashing and blinking and the only thing that would work, was the application to John Hopkins for Science/Medical Writing. So I worked on it a little more--I was not going to apply, but there was something therapeutic about filling in forms about myself. It kept my mind off burials and David and Christmas without him.

Then Thursday afternoon, John Hopkins called me for a pre-admission interview. During the interview, I still thought, "I am not really going to do this," but then I mentioned my work with Alex's Lemonade Stand Foundation and the Admission Officer told me how much she loves Alex's. Her younger brother is a childhood leukemia survivor. She said when he was diagnosed in the 1990s, there weren't family resources and she remembers her family feeling so alone and confused. She said she loved that there was a charity that helped families make a difference, together.  She thought it was nice I supported a charity and thanked me for helping families like hers. 

Then I told her that I was a mother—just like her mother—the mother of a survivor and yes, I understood.  ALSF exists because of an amazing child and an equally amazing family—and yes, I love writing about the research, because ALSF is the leader that will find cures for childhood cancer. And then I told her about all the amazing projects and researchers I get to interview and write about and talk about. Then I told her about my work for Happy Family and my new project writing about raising environmentally friendly kids and infant/toddler nutrition and how much the world needs organizations like ALSF and responsible corporate partners like Happy Family. I told her my brother was an organ donor--and the world needs to understand the importance of tissue donation and medical research.  

The world needs complicated information-translated into language that we all understand. Technology and science and medicine and nutrition should not be secrets or inaccessible.  I told her that I had the words to do it---but sometimes those words are just out of my reach, but I know if I just stretch myself a little bit, I can grab those words. 

And she said:  

We will expect your application sometime this month.

And suddenly, the words are back. Energy is never lost—it is just changed.

Instead of a eulogy, I’ve got a Statement of Purpose to write. 

Monday, June 13, 2016

One Last Stand

I love a catchy beginning--but I've got nothing this time around. So here it goes:

We are moving. June 18 will be our last lemonade stand in our front yard in 08021.

Of course, not our last lemonade stand forever. Just our last one here, in our first home. The home where we brought home all our babies and made so many memories. The home where we hosted our first Alex's Lemonade Stand in 2009. The home we raced home to after Lily was released from the NICU in 2006 and the PICU in 2007. The home tiny Chloe came home to in February 2009 and the home our sweet surprise Nicholas first slept in and made our family complete in 2012.The home where we hosted 7 lemonade stands and planned our #BigLemonade World Record breaking cup.

Our home.

We are sad to leave. We are excited for the new house (not far! Just a couple towns over and closer to our church.). We will miss this bungalow that has long been overcrowded with stuff and lemonade and love and memories and chaos and glitter (note to all potential new owners: you must love glitter, I think it seeps from the walls.).

Our children will miss our front yard lemonade stands the most. When we first announced the move and made it clear this was happening--Lily said: " What about my lemonade stand? Will the lemonade stand butterflies follow?"

Lemonade stand season is ideally timed with butterfly season. Lily once heard Jay Scott, Alex Scott's dad, tell the story of the butterflies in their front yard every lemonade season. The stories of Alex's life and legacy are so deeply entrenched in Lily's memories and in her own life story. Lemonade and butterflies and hope and strong, warrior little girls who change the world--are not fairy tales but true life stories.

Our front yard is filled with lilies (both the human and flora kind) and lilacs and lavender and daisies and other blooming delights. There are always butterflies in June, along with lemonade, in our front yard.

For our kids--our annual Alex's Lemonade Stand is so much more than tradition--it is truly part of our home and the story of our lives.

Someday, the new house (which we've nicknamed "Eldridge," for the street it is on) will also have butterflies and lemonade and truly be our home. It is hard for all of us to fully see that now--we have such an amazing community here and there is always the fear that our community now; won't follow us a few miles up the road and well, the new community won't see the butterflies and lemonade.

However, we've learned that Alex Scott's legacy of lemonade, hope and childhood cancer research is infectious. I am pretty confident wherever the Adkins Three land, the butterflies and lemonade will follow. We have Alex to thank for that.

There are 5 days until our one last stand in the Front Yard of 08021.  We can't wait to see you. Bring friends. Bring hope. And bring yourselves. Oh and save the date, we already have our first Eldridge Lemonade Stand planned, just at the tail end of butterfly season: September 18, 2016.

We'll see you there too.

Every donation funds innovative, cutting-edge childhood cancer research. Alex's Lemonade Stand Foundation has an amazing Scientific Advisory Board that works to identify the most promising projects and to fund breakthroughs. Because of your support, Lily's annual lemonade stands for ALSF have funded over 40 weeks of research. 

If you can't swing by for a cup of lemonade on 6/18 (from 10-2pm in our front yard.), then donate online! Please share the link to Lily's stand! Link: https://www.alexslemonade.org/mypage/1234636





Tuesday, September 1, 2015

3,121 Miles. #Journey2aMillion

I was waiting in airport security with Lily. She was just 15 months old. Forty-eight hours earlier, Lily was in the PICU, recovering from her fourth and final brain surgery.

Her stitches had not dissolved and there was still dried blood on her incision.

It was the summer and there was a long, long line. I tried to ask to go ahead of the line--to go through the line for people with special needs or for frequent fliers, but I could not form the words: "My baby had a brain tumor." I stood there silently, texting Mike, worrying about Lily in the stroller, scared she might vomit in the heat of the long security line.

We waited and waited. Mike stayed home for this trip; he needed to work and we knew this would be the first trip of many and we needed to save his time off for the long haul ahead. This time I would meet with the doctor in Houston who would manage Lily's proton radiation treatment. I was alone with Lily, studying her.

There was the new incision, plus all the others, everywhere that formed a map of her time in PICU. Brain cancer leaves its mark everywhere--it is messy, unrelenting. We had not fully removed the dirty, sticky outline of adhesive tape that formed a small rectangle around the spot that held all those IVs. It looked like an outline at a crime scene.

We waited for an hour. We made it through security. We made it on the plane. Lily sat on my lap--we had the middle seat--the only seat we could get with little notice. The passengers next to me just stared and stared at the long, long scar running down the back of her head and onto her neck.

I could not tell them what happened. I could not say: a month and a day ago my daughter was just a baby. Now she is a baby with ependymoma; a baby battling childhood cancer. I could not say that I was staring too; staring at that long scar, remembering that Lily had been facedown in an operating room for 4 1/2 hours. She had to receive 4 units of blood. The tumor did not want to let go.

Our flight was 3 1/2 hours. It was 1,560.5 miles to Houston; 3,121 miles round trip.

When you leave your home for cancer treatment for your child, you truly leave everything behind. You leave your bed, your friends, your dog, your cat, your normalcy, your sanity. It is all left  in panic, as if a storm is coming. However, the storm already swept through and you lost all those things  the moment your child was diagnosed with cancer. You traded your bed for a hospital chair and your friends for nurses and other shell-shocked parents. Your pets have become something you need to have someone else care for because you are gone; gone in the night and racing right into the storm.

Because you have to get right to the center to fight--and then you have to go where the hope is--you have to try to find a cure, no matter how far you go.

Our trip for proton radiation was 3,121 miles.  My friend Stephanie has traveled over 18,000 miles for her son Nico, who is battling Neuroblastoma. Keren traveled 4,600 miles, for Cole, her neuroblastoma survivor. Renee traveled over 6,606 miles for Felicia who battled Wilms Tumor.  David well over 1,600 miles for Jonathan, his son, who battled ependymoma. We all left it all behind for our kids. We keep leaving it behind with every MRI and treatment plan and follow-up meeting and radiation treatment.

And then there is my friend Robin. She traveled endlessly--thousands and thousands and thousands of miles for a cure for her daughter Campbell, who battled ependymoma of the brain and spine.  Campbell never got her cure. She is forever 8 years old. Brain tumors never want to let go.

That is why this September, during Childhood Cancer Awareness Month and Alex's Million Mile, we will walk and run and ride and log our miles for a cure. We will leave it all behind--our comfy couches and car rides and our fears--and we will walk, run and ride right into the beautiful storm of hope.  We have no choice. We do it for our children--we do it for our friend's children--we do it for the children  who are diagnosed each day. We do it because childhood cancer remains the leading cause of death by disease in children. Children are diagnosed everyday. Children are dying everyday.

Everyday.

But there is hope. There is hope, one mile at a time.

This September we will join with teams all around the world in Alex's Million Mile--a month long awareness and fundraising event. We will track our miles and collectively reach 1 million miles and 1 million dollars for childhood cancer research.

We will do it, one mile at time, leaving behind all those doubts and fears. Trading the storm for the joy of hope.

If you feel inspired to take this journey with us and log your miles in September, join Team #BigLemonade for Alex's Million Mile. When you join, you will record the miles you go and with every step you take, know that you are walking with all us of towards hope for a cure, one mile at a time.