Wishes and Shadows

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Aurora’s love language is gift giving. If you ever received a gift from her, you know it is bought with so much thought, intention and love. She feels joy in the giving of gifts as much as getting gifts. She bought me some amazing things this year that I didn’t see coming. I was so touched and realized that these could be the last presents I open from her and that struck like an arrow in the heart.  I wanted to stay with her in that moment forever and I realized I must cherish every little moment. 

Aurora has made a Bucket/Wish list. She wants to have some fun and experience some things with the people she loves. When she made this list, I told her to put anything she wants on it, regardless of extravagance which means there is a lot that I can’t make happen.  For as long as Aurora feels strong enough to keep knocking items off the list, we will keep planning events and experiences. A lot of the list William and I will do in her honor in the years to come, maybe her family and friends will also.  There are lots of things left on the list if anyone wants to become part of an experience or help by contributing to any of her events.  Information and links will be coming up soon here and on Rory’s Tribe Facebook page as we work out dates and details. 

Some of the items on the list we have happening in January and February include seeing the Nutcracker, a visit to Lip Lab in Seaport, A boutique wedding dress experience for a wedding she won’t ever get to have, I’m bringing tissues to that one. We also have a possible Bruins game coming up thanks to Boston Children’s Hospital. Also, dinner plans for some Hot Pot and of course attending Adult Prom on February 22nd.  Rory would also like to travel somewhere but we must see what she is feeling up to in the coming months. 

I want to enjoy every moment of these experiences with her. How do you find joy when grief has casted a big shadow over your life? People often tell me I’m “so strong”. The truth is, what you see as strength I see as survival and trying not to let myself completely fall apart.  People talk about balance all the time. You always think about work/life balance, but I now only think about the balance between joy and grief and how to accept both as part of life. What is going to take all my strength is finding joy in the moments I have left with Aurora while this shadow of grief looms over everything.  I want her to feel happy and enjoy everything she experiences on her wish list, and I want to be by her side enjoying it with her.  This is what will take all my strength. 

As we go into the New Year, and you make resolutions or Bucket lists of your own remember life is about the little moments with people you love.  I hope everyone has a healthy and love filled 2025. 

There are no words…

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Each time I sit down to write this post I have to stop because this is not the news I want to share with you.  Almost two weeks ago we had a meeting with Rory’s doctors who told us that even if we make it to Duke her chances of passing the physical exam are and I quote, “marginal at best.” Duke’s list of physical requirements for a third transplant are very high and Aurora just isn’t physically able to meet them despite how hard she is trying.  Her health is just declining too quickly.  They can’t tell me how long she will have; it could be a few months to a year.  But at the rate she is declining it’s probably not going to be very long.  There is a part of me that still wants to hold on to any unrealistic optimism because in its place comes soul crushing despair.   

Aurora and I are having conversations no parent should ever have to have with their child. How does she want the end of her life to look like. She made a bucket list which I will share with you in another post soon. Better have your tissues ready for that post. I’m still trying to read through it without completely falling apart. Because of her health I’m not sure how many things we’ll be able to carry out, but we are going to do the best we can with the time we have. I’m hoping many of you can help me with some of the things on her list. 

I go to bed crying, I wake up crying and I spend most of the day trying to hold myself together. I’m overcome with waves of grief that feel like they are going to pull me under, but Aurora needs me, so I push my way out of it.  It constantly overwhelms me. What Aurora has told me is that she doesn’t want any toxic positivity. Don’t say there is still a chance or that somehow it will all work out.  It’s not going to be ok, and we know this.  For now, Aurora is going to continue with physical therapy and her treatments for as long as she is able.  There are a lot of questions I still need to address but I haven’t been able to face them yet.  Getting through this post and letting the world know where we are at is a start in trying to face what’s to come. 

If you have texted me, called me or tried to make plans with me I apologize for ignoring you.  Right now, I’m not sure how to function in the regular world.  We love you all and will now more than ever need your support to get through the next unknown stages. 

Like Watching Ice Melt

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Back in the beginning of October when we received the news that Rory was back in Chronic Rejection, I felt like I was handed an ice cube.  Told, don’t let it melt. Whatever you do, don’t let the ice melt because once it’s gone that’s all the time you have.  In that moment everything froze.  Overnight, everything changed.  

Our freedom to do what we want…. froze 

My job…froze 

Our social lives…froze 

In all honesty, it can feel isolating sometimes.  I miss my other life, and I know Aurora misses hers even more.  Life has fallen into a routine for the moment.  Two days a week we go to appointments and physical therapy at Boston Children’s Hospital, where Rory is working extremely hard at reaching her goals.  She is exceeding her home PT goals too.  Having this reward system was absolute genius and has been a huge motivator for her. I know a question many people have wanted to ask me is, how does someone get stronger if their health is failing?  The answer is, I don’t know? There is so much I don’t know and am afraid to ask.  What I do know is I see her getting stronger each week, so it has to be possible.  The body is capable of doing amazing things and I hope Aurora can keep pushing herself.   We’re not better and there is no going backwards, but we also aren’t worse so that’s a positive I’ll hold on to for the moment.   We have not heard from Duke yet.  Which is ok because she needs to be stronger before we go. All I do is think about this ice cube and everything I can do in my power to stop it from melting.   

 So, for now, we are here frozen in time, trying not to melt. 

Being Thankful

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I wanted to wish all our family, friends, and supporters an incredibly Happy Thanksgiving and I hope you are counting your blessings this year, I know we are. 

Pulling into the parking lot of Clover Road Brewing Company Saturday and seeing there were already no spots left Aurora said, “Is this all for us? All those cars did turn out to be there to support us and I was extremely taken aback. So many of our family and friends were there we were amazed by the turn out. We are so grateful to everyone single person who donated a basket, they were a sight to be seen. A huge thank you to the businesses in the community for donating gift card, and to the Hudson Police Department for donating a Murph and Jocko basket.  We sold over 6,500 raffle tickets and I love that everyone came to win!  Congratulations to everyone who won a basket and if you did not get to win thank you so much for trying and there will be other opportunities to come. 

If I could have spent time with each of you, I would have.  There were so many people to catch up with, so I apologize if I did not have a chance to talk to you, but I saw you and appreciate you. Today we are going to enjoy spending time with our family and talking with friends. We are so very appreciative of your continued support. Today I hope you can spend the day with a grateful heart and be truly thankful for all you have. 

A Little Caution & A Lot of Excitement

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Aurora and I have been looking forward to attending the Fundraiser this weekend since we learned that we would be home a while longer. This Saturday, November 23rd at Clover Road Brewing Company in Hudson beginning at 2:00 there will be a big fundraiser to help support Aurora and myself.  There will be over 70 different amazing basket raffles for everyone including kids. There will also be cornhole, a food truck and of course great beer from Clover Road Brewing Company.   

Aurora and I are overly excited to see everyone.  I understand when you see Aurora you may want to reach out and give her a big hug.  We ask that you do not give her any hugs, at least not without her permission and following a few guidelines.  First off, she is not a hugger.  But more importantly, she is very immunosuppressed, and we are trying to keep her healthy the best we can. I always worry a little extra when I bring her to crowded places, but we’d never miss this exciting event.  I on the other hand, will be accepting all the hugs.  If they are happy, positive hugs. Only positive vibes allowed on Saturday.  

We understand you may also have questions for us, but we wanted to remind people that this is not the day for questions, we also don’t have the answers you’re probably looking for.  Aurora has started Physical Therapy and is constantly being challenged. I’m proud of how hard she works.  I’ll be writing a longer post about what this is includes and her specific goals in the very near future.  Saturday, we would like to just enjoy our family and friends, share some laughs and stories, and for this day forget the difficult things going on in our lives.   

We can’t wait to see you all there. 

With Love,

Michelle & Aurora 

Conversations, Affirmations and Incentives

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Every week Aurora and I must have a hard conversation about something.  Most topics these days revolve around something difficult.  The first hard conversation this week was with our Nurse Practitioners. Exceptions are made when Boston does not perform or specialize in something such as a third transplant, so insurance acceptance is working itself out.  It may take a few weeks or even a few months to get approved. But we have faith it will be approved, and we’ll get there. 

What was hardest to hear was that if Aurora went to Duke now for her evaluation there is a chance she would fail because she is so deconditioned. An evaluation is not a guarantee of transplant.   She must meet specific physical criteria to get accepted and right now she most likely wouldn’t.  This means starting the rehab process here in Boston including extensive physical therapy.  This will be the hardest part of the journey. 

There are times she looks at me and I can feel exactly what she is thinking without us having to speak.  What we’re asking of her is very hard and there is fear and doubt creeping in all the time.  The brain is a powerful thing and can often believe the things we tell it. Affirmations when done correctly can be powerful.  Not the kind you find online, but the kind you write on your own to give them meaning and purpose. She doesn’t often buy into this stuff, but it can’t hurt. The mindset to reach these goals will be just as important as the physical strength she’ll need.  As her mom, I tell her everything I know is true and how I know it’s hard, but she can do this.  I try not to let fear and doubt creep into my mind because once it does it’s hard to get back to a positive place.  This isn’t impossible it just feels like it is at times. 

Reasearch shows that the steps in reaching the goal are more rewarding than the goal itself.  Quality of life and new lungs are the ultimate goal, but they seem so far out of reach right now and very far in the distance.  We need to think of the small steps it will take to reach this big goal.  Of course, new lungs are the reward for all this hard work, but I want Aurora to be proud of every small step she takes toward the big goal of getting to Duke.   

I’m extremely lucky to have a supportive group of friends who are always on top of things. The are amazing at planning, fundraising and especially listening to me vent. They are also very creative and came up with a type of advent calendar, but for Aurora’s goals.   Each time she reaches a goal she’ll get a reward. They are helping me put it all together and there is an Amazon Wishlist on Rory’s Tribe FB page and on the About page here if anyone would like to help Rory reach her goals.  My hope is that the stronger she gets it won’t feel as impossible.   Anything should feel possible when you put your mind to it. 

Movie Binges & Insurance

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To pass the time Aurora and I have been watching a lot of movies.  We usually start by picking a theme like John Wick, disaster movies (our favorite) or Disney movies.  We got on a Denzel Washington movie binge one day and decided to watch John Q.  I hadn’t seen it in years but remembered the premise, Rory had never seen it and wanted to watch it.  Twenty minutes into the movie we looked at each other and I said, “Wow this feels very familiar, should we stop?” She said, “Of course not, I have to see Denzel kick ass.” It was a little hard to watch honestly, I could completely understand what John Q was going through.  The desperation, the helplessness and the refusal to take no because of money or insurance as an answer to making his kid better. 

As many of you may have noticed, I’ve been quiet. Not texting or answering calls as much because answering the same questions all the time is an energy drainer.  Repeating over and over that you don’t have an answer yet is defeating so I often avoid it.  The truth is, we got a call Monday saying Aurora had been accepted for an evaluation.  Then a while later we got a call saying our insurance was denied.  Of all the things I was worried about, insurance hadn’t crossed my mind.  There are lots of things going on behind the scenes to make this happen.  Unfortunately, it means more waiting for an answer.  And the roller coaster ride of emotions continues. 

No isn’t an answer we’re willing to accept. I may not go into Duke Hospital with guns blazing although I have thought about it.  But like John Q, I have to take actions before time runs out because my kid’s life is on the line.  The waiting is like death by a thousand cuts but in the meantime, I’ll be doing everything I can in order to get her to Duke.  I have a sense it will include lots and lots of paperwork, phone calls and anxiety attacks.  If we have to, we’ll go to our local rep, the news, anyone who would listen to her story.  Aurora has so much determination to get through this, it shouldn’t be this hard.  

When we know something, you will know it to.  Until then we will be here continuing our Movie binges. If you have a good movie binge theme, be sure to let us know.

Thanks for reading and stay tuned. 

Love, 

Michelle & Aurora 

The Journey Continues

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To tell you where we are, we must tell you about where we have been.  This all started in 2013 Aurora was diagnosed with Pulmonary Hypertension, a rare disease for a 12-year-old girl so it went misdiagnosed for a year until it was discovered.  Only 50% of people diagnosed live past 5 years, it is an awful chronic disease.  Aurora was not someone who would have made it to 5 years, after 2 years she received her first double lung transplant at Boston Children’s Hospital.  Her surgery was successful, and we got to go home fairly quickly.  We tried to find a way to enjoy all the things that had been taken away with pulmonary hypertension, like going on walks, swimming, and showering without it being an ordeal.   

About a year and a half later Aurora noticed she was getting short of breath when she would walk. We quickly learned this was chronic rejection and was only getting worse.  Inevitably leading to her second double lung transplant.  Watching her decline and waiting for transplant was one of the hardest things I have ever done.  He recovery the second time was much harder taking almost 4 months. 

There are three types of rejection. The first is Acute rejection which is when you get a virus, and Aurora would get extra steroids or meds, and we would get back to normal.  Then there is antibody rejection.  Where a donor antibody becomes active and if it cannot be made inactive it can lead to chronic rejection which is what happened to Aurora.  She was just getting used to being an “average” person and living her life.  She went back to school, was studying culinary arts, and has her first boyfriend.  We are still in a state of shock, trauma, sadness and angry that we are here again.   

Third transplants are rare, so rare in fact we do not perform them in Boston.  We have the best hospitals in the World, so this came as a huge surprise to us.  But if Boston is not the best then we want to go to wherever is.  Duke University Hospital has had the most success with third transplants.  There have only been 23 ever in the United States and more than half of those have been performed at Duke.  Our fate now lies in their hands.  We have all the paperwork in and are waiting to hear if Aurora will be accepted for an evaluation.  If accepted she will potentially have a third double lung transplant.  This acceptance comes with a commitment to move to North Carolina for 5 years.  We have no other options other than to be accepted so please keep praying.   

So not only do we have to go through the hardest experience we have ever been through again, but now we must do it in another State, away from all our friends and family.  The reality of that has not hit me yet.  The only thing I can focus on is taking care of Aurora and keep her strong enough to make the trip to North Carolina.  I cannot let my mind go to the what ifs, the things that can go wrong, the risks and complications. I want this to work, I want them to figure out why her body keeps fighting against her.  This is too much for one person to go through again. 

This Blog is going to be a way for me to keep anyone who want to follow along on this journey updated.  There are times it may be humorous, and at other times it could be quite sad.  It’s always going to depend what part of the journey we are currently on.  More to come and thanks for coming along with us. 

Much Love, 

Michelle & Aurora