It’s been quite a while since I’ve written an update, but while the world keeps spinning, we are still here. At the end of May, we will be hitting our one-year mark here in the hospital. This is its own version of Groundhog Day.  We ebb and flow out of being ok, being angry and sad. We try to come up with bucket list items, but when you are confined to a room it gets hard to be creative. We do our share of online shopping, watching movies and looking forward to visitors. It’s a strange feeling to watch everyone go about their lives while you watch from a window so to speak. It’s a difficult feeling to put into words. But that isn’t my reason for this post.

I love Chinese New Year. I love the customs and rituals, like giving money for a prosperous year ahead to wearing the color red. I love the idea of getting the energy of the past year out to let new energy in. This year we all heard about the energy of the Horse and its power. It was going to come in strong with us upon it, effortless momentum and freedom.

As we enter chapter 4 out of 12 this year I have talked to friends, family and even acquaintances and everyone is being hit hard this year. It appears several of us have missed the memo and instead of getting on the horse, charging ahead with our hair in the wind we ended up being dragged behind it trying not to lose our grip. I don’t feel wind in my hair; I feel dirt in my mouth. I feel impact, collision and things breaking open.

I wanted to start the year with good energy and solid habits, but life had other plans. In February I missed a step going down the stairs at the gym and fractured my right foot. So, no driving, a walking boot for 4-6 weeks and orthopedic appointments. Two days later one of my best friends was killed in a head on collision on her way to Logan Express to go on a much-needed vacation. Then my dog got an eye infection that had everyone stumped and she’s still recovering. Each time I talk to someone they share stories of life stomping on them also in one way or another. Stories shared have been about deaths, separations, serious injuries such as gun shots and the list goes on and on.

The truth is the Horse never belonged to us. It wasn’t something we could tame. It’s just raw force. We thought we would be directing energy instead we are at the mercy of it. If this somehow resonates with you, remember this wasn’t about the ride. It was about what happens when you are forced to stand back up after being knocked down, how you gather yourself and keep going anyway. I keep thinking maybe the horse didn’t come to carry us. Maybe it came to toughen us-to strip things back to what matters and to teach us how to keep going no matter what. Not gracefully, not perfectly. But with resilience.

Thanks for Listening to my Ted Talk

It’s hard to believe we have passed the one-year mark since this journey for our family began.  We have learned a lot this year about taking life a little slower, enjoying the little moments each day and just not waiting to do the things on the bucket list. We have learned to tell people we love them every day, give a lot of hugs, laugh when we can, reach out to the people we miss. Nothing in life is forever, nothing. So, appreciate the things you have today.

Chronic Lung rejection is like a staircase that’s going down.  Sometimes you move down a few steps, and though you can’t return, you can remain where you are for some time.  And that’s where we currently are.  People ask me all the time how she is doing, and it’s hard to put into words.  Part of me wants to say, “How would you be if you were stuck in a hospital room for six months and no end in sight?” But I don’t, I say “she’s stable”, which is true. I say, “she has good days and not so good days”, which is also true. What I don’t often talk about is the toll this has taken on her mental health. She spends some days just feeling sad, missing her life outside of a hospital room. She misses home, random trips to Target and TJ Maxx. She misses the normal life she was getting used to. We try and make the days she’s up eventful, whether it’s a trip to Starbucks or knocking an item off her bucket list when possible. We received a special package from Gracie Abrams full of Hourglass makeup, she is the new spokesperson for the brand.  We are so grateful for getting to know her and that she continues to make an impact on Aurora’s life.

A little bucket list update:

Aurora has always wanted to see a Medium.  She recently said to me, “I’d really like to know who will be there to greet me.” Laura Lee, a wonderful medium out of Tewksbury, came and spent three hour with us this past week and it was amazing.  The way she explains Heaven is not something above or below us but right next to us. I found that a comforting thought when thinking about the grief of a loved one.

The second bucket list item in the works is a British Bake-Off with the 10 Hale staff.  Each week we will have a different holiday themed baked good with a technical challenge.  The 10 Hale staff will be baking at home and bringing in treats for everyone to enjoy.  There will be judging and prizes. The first week is cookies, the second week is confections (I just love that word). The third week will be a Christmas breakfast item, and the last week will be “A few of Rory’s favorite things.” We’re all very excited about all the tasty treats and to celebrate together.

At this time last year, I wasn’t sure if we would have another holiday season with Aurora.  To say we are grateful is an understatement.  Even though we will be spending this Thanksgiving and Christmas in the hospital, we will still be surrounded by family, and we will be together, which is the most important thing for us.

 We are also grateful to all of you.  Your continued support means everything to us.  I would not have been able to financially survive this year and be by Aurora’s side without your continued support. We have a brand-new fundraiser going.  Shirts and hoodies with fresh new design done by Aurora. Don’t be left out, get yours before December 1^st.  All proceeds will go to our family so we can stay by Aurora’s side in the months ahead.

With Christmas approaching, Aurora has made another wish list.  If you would like to send her a gift or a little cash to buy herself something, I’ve added her Amazon wish list and her Venmo in the “About” section.  Also, if anyone would like to send her a Christmas card, our address will also be available. Any messages to help make the season a little brighter for her would mean a lot.

“Tears come from the heart and not the brain.”

                -Leonardo da Vinci

This is a different type of post for me but one that I hope will resonate with you.  Before I start, Aurora stays stable and is still battling nausea and exhaustion. We continue to have Sunday night visits with Luna which is a weekly highlight.  We aim to keep upbeat, but last week was especially challenging.  It was a week filled with tears. Yesterday I learned a childhood friend passed away; so many people I know are grieving this week.   It made me realize life is short and everyone experiences sadness, sometimes extreme and like a punch in the gut.

I notice that when people show emotion and cry in front of others, or I cry in public, we are quick to apologize for it.  I wanted to write this post because crying matters for so many reasons. Where there is grief there is love. If you cry in front of me, I’m going to hug you, not because I want you to stop but because I see the love you feel. I will absolutely be crying in front of many of you in the future, and I want you to know that its not your job to fix.  Just give comfort, a hug or a reassuring word. Your job is to feel awkward and be there anyway.

Whenever someone is crying don’t rush to stop their tears. Saying things like, “don’t cry” can unintentionally dismiss their emotions. Crying is part of healing and grief needs a release. Stopping someone from crying can make them feel like their pain is “too much” for others. Crying releases toxins from the body and creates endorphins. This is why we always feel calmer after a good cry. The next time you cry remember it’s your bodies way of healing from the inside out.

When someone is crying try not to “make it” about you. Avoid shifting focus with “I know exactly how you feel” or launching into your own story of loss. Even if well intentioned, it can overshadow their grief.  Just be in the moment with them, people need space to be heard, not compared to. My last piece of wisdom is do not use clichés, it’s toxic positivity. Phrases like “Everything happens for a reason” don’t make anyone feel better. Instead, you could say, “some things are random and devastating.” Saying “They are in a better place now” can just feel dismissive, no matter how kindly said.  Try saying “They’re gone and it’s unfair.” Grief isn’t a problem to solve; it’s a journey you walk beside them in. Crying is universal, an emotion shared around the world. It’s time we normalize it as a strength, not a sign of weakness.

Remember to have a good cry if you need one today. Love you all.

We have been here in the hospital for 73 days and even though we have not gone anywhere July has been a month filled with full of positive things and surprise bucket list items we didn’t know we needed.

Aurora got Engaged on July 12^th. Aurora and Liam met at school and have been together for a year and a half.  He stayed by her side throughout this journey, doing everything he can do to make her happy.  Aurora knew the engagement was coming but was unaware of the details.  She did her hair and makeup and headed up the rooftop garden.  When we got to the garden Liam had set the scene with tons of candles and started playing Hopelessly Devoted to You by Olivia Newton John. There were tears, laughter and pure joy.

We also had a mini-Bachelorette party themed Girls Gone Mild, combined with a rodeo theme and penises Rory’s friends and family joined us in the hospital room, sharing mimosas and laughter. There were balloons, penis straws, rodeo themed goody bags complete with cowboy boot shot glasses and face masks. No Bachelorette party is complete without a lingerie gift thanks to Mia, who we love.

On July 27^th we were told Gracie Abrams would be visiting the hospital and joining us on a zoom call but, the morning of we found out she was coming to our room instead. To say we were star struck would be an understatement.  If you don’t know who Gracie Abrams is, she’s a singer Rory and I LOVE. She opened for Taylor Swift and if you listen to KISS 108 you have heard her songs. She was the warmest, down-to-earth person.  She stayed and talked with us for over 30 minutes.  Her and Aurora exchanged phone numbers and texted each other. That’s a bucket list item we never would have thought to ask for. She brought us a bunch of stuff and signed all of it and we have so many great pictures and videos to remember the experience.

We are so grateful for the amazing outcome of Rory’s Amazon Wish List and the Sunshine for Rory campaign done within our community of Hudson. When the Sunshine items were delivered, we were amazed by the volume of things.  There were gifts, cards with the most thoughtful messages and wishes, artwork by adults and children, origami and much more. Messages from people we know and others we have never met. We have the most generous and supportive people in our lives. Rory had so much fun opening all the packages.  We have been coloring, doing puzzles on the new mat and experimenting with nail colors.  Thank you from the bottom of our hearts.

Something Aurora has been missing very much is our dog, Luna. After 73 days in the hospital Luna missed her too.  So, we got permission to sneak the dog into the hospital on a weekend when its less busy.  If you have ever met Luna, you know she is anxious girl.  Any loud sound or new experience makes her want to run for home.  William and I were determined to make this a success. We gave Luna her “relaxing” meds in the morning, got to the hospital Sunday evening and she did better than we ever could have expected.  Not only did she make it all the way throughout the hospital to Aurora’s room, she was able to relax and lay on Aurora’s bed for snuggles.

Until next time, we love you all.

A subtle distinction exists between many words, and we frequently find ourselves navigating these nuanced differences in our lives.  I seem to walk between many and one that comes to mind lately is the thin line between optimism and denial.  Optimism is holding hope that something is going to change, and miracles can occur every day.

Denial serves as a protective mechanism, allowing the mind to gradually process overwhelming realities. Accepting the full extent of a situation at once can be too much for the brain to manage. When optimism fades, denial becomes a refuge, and the boundary between denial and reality can fluctuate. It’s important to give people the time they need to process their emotions rather than pointing out their denial.

Aurora won’t be coming home.  We are staying in the hospital, making her as happy as we can.  She now must rely on IV morphine to keep her comfortable and that’s not something we can do for her at home. We need the extra support that we get here. Some days, she’s so tired she sleeps all day. She at times is confused and can’t remember things that have happened. At other times, she’s up and alert. Giving herself a manicure, creating tattoos for people or shopping online.  Every day is a different day, and that’s just where we are now. We leave the room less often, so we are here when she’s awake, and hold her hand when she sleeps.

Since we aren’t leaving the hospital, we are trying to make her time here as special as possible.  We have decorated the room with comforts of home.  We have been able to make some Bucket List items happen here. She had her hair done (Thanks Aunt Tracey) and a couple of fake tattoos drawn on.  She also had a special visitor from home.  Murph, Hudson’s community resource dog, came to visit us.  We hope to achieve a few more before time runs out.

Lately I have been very grateful for the work William, and I have put in over the years on communication.  We have been talking a lot, asking each other hard questions about how the next few weeks might go and how we will continue to show up for each other.  Thanks to those who have reached out to William and asked how he is doing, or what he might be needing.  I think it’s sometimes easy to forget he’s losing his sister and how close they have always been.

It’s surreal to think that planning a Memorial service has been on my mind a lot. I’m glad that Aurora and I have talked about what she wants. There is a list of rules she wants everyone to follow of course. There are things we still haven’t talked about but I’m hoping I have the courage to bring them up soon. I know these posts aren’t always the positive news people want to hear, but this is the reality for us.  I appreciate everyone who continues to follow along.  We Love you all.

Aurora & Harley

Talking is hard for me, so I write.  Writing helps to clear my thoughts; it’s my way of venting and not have the same tear-jerking conversation on repeat. If I don’t answer the phone or get back to you it’s not personal.  I read this poem the other day, and I don’t think I could have found one that better describes how I feel. I almost cry every time I read it because of how much it resonates.

I am fully submerged in water

And everyone keeps asking

If I need any help

Can’t they see

I can’t speak underwater

I can’t even breathe

We had a family meeting here at Children’s hospital last week.  Family meetings give me a lot of anxiety and a feeling of dread. We have them because they are important, get everyone on the same page and have the same information. But for me, it signals a turn in circumstances, a step downward to a place we don’t want to be. I go into them knowing it’s bad news and my anxiety tends to get the best of me. I don’t do well in meetings with large groups of people when it’s about us.  I freeze and go silent just trying to process what’s being said. (I know, it’s hard to believe I could be silent.)

Aurora is declining, her oxygen needs have increased, she is more and more short of breath, and her body is just tired. We have entered the last phase of the journey, and it breaks my heart. We are stopping Apheresis therapy because it’s not helping anymore.  We are considering stopping some of her anti-rejection medications, as they seem ineffective. At this point making Rory as comfortable as possible is the goal.  I have dreaded this moment and feel helpless to do anything about it. For now, we are going to remain in the hospital because of the extra support she needs to feel secure and content. We are talking about coming home and if I would be able to support her and make her feel safe and comfortable.  That’s hard when you can’t breathe.  We have options we are exploring, and Aurora will decide what works best for her, even if that means staying in the hospital. Aurora does continue to amaze us and it’s hard to say what the next few months will bring.

If you want to see Aurora in the next few weeks message me and we can arrange a time for you to visit, either here in Boston or if we get to come home, in Hudson. Although we may not be able to fulfill many of her bucket list items, I am optimistic about achieving a few while she is in the hospital or during the limited time we may have at home.  We may have a sip and paint here, get our nails done and maybe find someone who could do her hair here in the hospital.

I know it’s hard to know what to say and that’s ok. People often ask what I need, but I usually don’t know. I listened to someone recently say, what would you need if it was you?  There is no guidebook as a parent for these situations, no rules to follow and I’m left without knowing what to do. So, I decided not to do anything. I’m letting myself cry and be sad because I don’t know how else to be and that’s ok.

We do have a new fundraiser going for a stay at a beautiful house in Boothbay Harbor, Maine. Please consider buying a raffle ticket, sharing on social media or with friends. We couldn’t keep going without your love, support and generosity.

Balance is one of those words.  It’s trendy and people love to throw it around.  We hear it all the time in different parts of our lives whether it’s finding a work/life balance, or a balance between being a parent and our own self-care, or how you spend your money or your time.  Like the word breathe, the word balance takes on a much deeper meaning for me. And sometimes, what I’m balancing can seem like life or death.

As many people know, Aurora has battled with nausea for over four years.  Although the slogan of Boston Children’s Hospital is “Where the world comes for answers” we have no answers.  We know she has slow gastric emptying, which means she digests at a much slower rate than the average person.  But that doesn’t explain the extreme bouts of nausea and vomiting that she suffers from on a regular basis. There is no consistency to Aurora’s nausea.  She can eat something one day, have the same meal the next day and become violently ill.  There is no specific food, time of day or activity we can pinpoint as the cause.

During our hospital admission after Disney, at Boston Children’s, Rory received a pyloric Botox treatment. Pyloric Botox is a treatment where a small injection of Botox is used to relax a tight muscle at the bottom of the stomach called the pylorus. This helps food move more easily from the stomach to the intestines and can relieve the symptoms of nausea, bloating and stomach pain. In the past, this has given her relief for months at a time.  This time, I’m not so sure since we are in the hospital AGAIN for nausea and vomiting. She vomited and wretched for almost a full 24 hours on May 30th.  It is awful and this is no way to live. When she is in these extreme states of distress, we will do whatever it takes to make it stop. This doesn’t come without its consequences.

The medications she takes to help her get relief are causing damage to her heart.  So now, in these moments of distress we must balance getting her the relief she needs, knowing the consequences the medications can have on her heart. So now in moments I must balance her distress versus giving her medications that could send her into cardiac arrest. How is that a decision I can make? I can’t let her suffer, but I also don’t want to put her in harm. There are no good answers and every road leads somewhere I don’t want to go.

Nausea is a terrible feeling. She can’t live out her life, complete her bucket list or enjoy food she wants to eat. It’s the nausea that may kill her in the end, not her lungs. We are trying every alternative to the meds we can think of from edibles, acupuncture, to a neuroscience clinic. If we could get rid of the nausea, she could actually enjoy her life. Aurora’s comfort is my number one priority and advocating for her has become even more complicated and stressful.  I’m fairly certain I’ll be faced with these decisions in the Emergency room, in the middle of the night, watching my child in distress, alone.

Let’s start with, we didn’t actually crash.  We made it to Disney, stayed in a beautiful house and we had a great week. Aurora got to do so many activities that she wanted to. She was able to get a pearl in Japan at Epcot. She ate so many churros and funnel cakes.  Aurora and William both took part in the light saber experience, she made a red because she’s embracing her inner Sith. William is a Jedi at heart and went with classic green.  We rode Finding Nemo and got to talk to Crush at Turtle Talk and I’m so glad we were able to see the Moana World of Water. I ate and drank around Epcot which is my happy place. Going to Disney World feels like one big adrenaline rush. There is this crazy mix of excitement, energy and pure fun. It’s exhausting in the best way possible.  What a Rush.

On the last day Aurora wanted to see her boyfriend off at the airport, got up earlier than she normally would and started feeling nauseous.  Shortly after she started throwing up and we had to take an ambulance to an Orlando hospital.  Thankfully Willaim is great under pressure because he was left to pack up the house and rental car on his own.  Orlando is not a place where you want to get sick.  I’m thankful I have stayed knowledgeable about Aurora’s care and was able to advocate for her.  The standards and practices at this hospital did not meet my level of satisfaction and I made sure they knew it; they quickly moved us to a more proper floor to care for her needs.  I was a tired force to be reckoned with.  It took Aurora four days to feel well enough to make the drive home.  After arriving in Hudson, we soon headed back to the hospital.  She’s back at Children’s getting the care she needs, and we should finally be home by the end of the week.  It’s exhausting in the worst way possible. What a Crash.

Florida is such a strange place, but I do love it. It’s all highway and there is usually traffic.  Its humid and can rain at any moment, or you see the dark clouds, hear the thunder but never feel any rain.  It’s a place you can’t help but love and roll your eyes at the same time. It’s hot, chaotic and unpredictable, but that’s part of its charm, F!@# me up Florida.

While we are in Boston, we are getting much-needed rest and making plans for the summer months ahead.   We are planning a Sip and Paint and hope everyone can join us.  We will have more fundraisers in the works for the months ahead as well.

I haven’t written an update in some time because there isn’t much to update.  In my world, that’s a good thing.  Rory of course won’t get better but as of right now, she also hasn’t declined further.  We had a Pulmonary Clinic this past week and the results of her Pulmonary Function tests were the same as they were in December. So, we’re in a pause phase. The shock of the diagnosis is over, neither of us has been crying as much these days. I know the worst is yet to come, so I tell myself there will be time for sadness and crying later. Right now, we are living for the present moments, enjoying each day as they come. Everything else has been put on a shelf for now. 

Aurora has seen really good results after starting Bi-Pap at night.  Her oxygen has stayed at a steady level, and she has had some more energy to do things throughout the day. The hardest part about Bi-Pap was finding the right mask she could tolerate overnight. Most weeks she attends different appointments and therapies at Boston Children’s Hospital.  The different therapies also seem to be helping her to stay stable and continue to live her life.  One of those therapies is Physical Therapy.  Aurora asked if therapy dogs could join her sessions to help her motivate to keep going.  Surprisingly, we’re the first to ever request this.  Not only was Aurora excited to get started but the staff was so excited to have the dogs around.  I’m happy to write a longer post about the therapy sessions with the dogs, what it looks like and how it helps all of us involved. 

The thing that holds Aurora back the most, other than shortness of breath is her nausea.  Suffering from nausea is the worst feeling in the world, and it’s something she has had to deal with since her last transplant four years ago.  During our last admission we had a g-tube placed.  Aside from nutrition we had that done so she could receive Botox treatments for nausea without under-going anesthesia.  At this point in her journey, anesthesia is a huge risk and one we don’t want to take because the chances of her coming out of anesthesia are slim.  Botox has helped her nausea in the past and hopefully it will continue to do so. 

One of the nice things about the pause phase we are in is completing as many bucket list items as we can.  Adult Prom was a huge success and Aurora, and I had an amazing night with all our family and friends.  Aurora and I both enjoyed dressing up, dancing, laughing, all the hugs and outpouring of love and support from everyone.  The room was filled with people who have touched our lives and continue to do so in so many ways.   My friends put all of this together for us and we are so grateful to have them. What an amazing night!

Some of the Bucket List items Aurora has been able to check off in the last few months have included: 

The Nutcracker– Thanks to Boston Children’s Hospital for the amazing seats. 

Hair makeover-Thanks to At a Cool Blonde for making Aurora’s hair makeover come true. 

Lip Lab-What a fun place! Located in Seaport. Aurora of course did the full package of lipstick, lip balm and a lip gloss. 

Hot Pot- We had such a fun night with friends, Rory also checked off “get drunk” that night. And we learned the #1 rule of Asian Buffet is…. No Carbs. 

Make Up– Thanks to Meghan Cotton make-up artistry for making Aurora’s make-up wish come true. 

Bruins Game-Thanks to Boston Children’s Hospital for great seats. 

Coming up we are planning a trip to Mystic Connecticut to visit the aquarium, and a sip and paint with anyone who wants to join us. Just let us know you want to come, the more the merrier.  Since we are in a pause phase Aurora can add a few more things to her bucket list for the warmer weather.  I’ll let you know about new ideas as they develop. 

The next big adventure we are planning to do is a road trip to Orlando to spend a week with our good friends Julie and Matt.  This trip was scheduled for 2026, but because of the current circumstances we want to go sooner rather than later.  Aurora has started another bucket list specific to Disney and Universal.  Some of the items on it include making a light saber with her brother William, drinking her way around Epcot, going to The Sugar Factory in Orlando and a few other experiences.  Anyone who wants to contribute to Aurora’s wish whether it be a Disney gift card, money toward a beverage in Epcot, just sending a special message to give her there or anything to make her trip an unforgettable experience.  You can do this by reaching out to Julie Martin at Julicon14@yahoo.com or Alex Matlock at alexendra.g.matlock@outlook.com .  We are very excited about this trip, it’s going to be a lot of effort, but it will be worth it. 

Thanks for following our journey. We love you all. 

24 Days Later  

The title sounds like a scary movie about a virus or a segway in a SpongeBob episode, but it’s the number of days we have spent in the hospital. So much can happen in three and a half weeks so to summarize I’ve made a list. 24 days (about 3 weeks) is a long time, and I hope once we are home we don’t have to return for a while.  There are things about being here that make life a little easier.  There is always someone available to help with anything from a shower to decision making. We are excited to go home, see our dog who we miss very much, and sleep in our own beds.  Aurora is excited to get more Bucket List items done, wants to redecorate her room and is looking forward to Prom Dress shopping and Prom itself. Once we are home, we look forward to reaching out to many people about the help they have offered on some of the Bucket List items. 

10 days (about 1 and a half weeks) in a Medical Intensive Care Unit 

14 days on 10 Hale 

A decorated room when we got to our regular floor (Thank you Courtney, our favorite child life specialist) 

So many polaroids with all the nurses and visitors 

A visit from Memere and Auntie Janet 

Laughs, tears, worries 

“I 💚Rory” written in the snow by a mystery person 

Walks to Fenway (Mostly Target) 

Sleepless nights (Mostly because it’s never dark and never quiet in a hospital) 

So much Uber Eats because cafeteria food gets old fast 

Cake decorating (Rory made me a Pheonix out of Fondant) 

A private screening of Mufasa 

Wicked on repeat 

A visit from Liam & Family 

A visit from Bob 

A nail polish rainbow 

So many discussions with so many different doctors 

A New G-tube and lots of new supplies

A Botox treatment for nausea 

A Harry Potter Marathon 

Rory’s heartbeat put into a song with music therapy 

A visit from Julie 

A Crumble Cookie gift 

New Bi-Pap Equipment for home 

A Chess game night with Liam, William & Emily 

Doggie therapy with the Golden Girls. Harley & Rey 

Scoop & Scootery on repeat, Late night ice cream deliveries 

Voicing My Choices is complete (tough discussions & lots of tears and laughs) 

Rory made playlists for the upcoming Prom & her services 

Rory created door signs for the other patients and rooms on 10 Hale 

Daily visits from our favorite Art Specialist Brooke 

5 books off my TBR list 

A visit from Mary & Reilly 

Lots of Starbucks