my first year without you….

My first year without you I missed you.  

I missed you deeper than words can even express.  I missed you, I missed hearing “DeDe” when walking through your door, I missed your reassuring hug when things were tough, I missed talking to you several times a day, I missed your advice, I missed the feeling that no matter what – my Dad would fix it.  I missed having a Dad.  I missed you.  I miss you.   Every ounce of my being misses you.

My first year without you I cried.  

I cried Monday mornings on my drive to work. I cried in my bed.  I cried in bathroom stalls.  I cried in my shower so I didn’t upset Jordan or the girls.  I cried a lot.  It alleviated some of the pressure that built up when I couldn’t do anything other than think of you and the devastating pain of what it meant to lose you.

My first year without you I felt depressed.  

I felt like I didn’t want to get out of bed, I couldn’t go on without you, I couldn’t take care of myself or my family.  I felt inadequate and I felt pain.  Deep, deep, gut wrenching pain longing for the one person who could make it better.

 

My first year without you I worried.

I worried about Carolyn, Mimi, and Mom.  I worried about how they were feeling, how they were coping, and how I wasn’t doing enough to help them.  I worried that no one would ever dig themselves out of this muddy mess of grief and I was in it too so how could I help them fight their way out?  I could barely help myself.

My first year without you I learned a lot.  

I learned to show up for people.  When something tragic happens to them and you don’t know what to say or do, I learned to show up.  I learned to send a text, I learned to remember special dates, I learned to make people feel like they aren’t alone.

My first year without you I prayed to you.  

Every night before Bea went to bed, we closed our eyes, put our hands together in prayer and recited something special and talked to you.  Although she doesn’t really understand what or why – she will learn and she will know you.

My first year without you I walked the beach.

I walked the beach without you and although it wasn’t the same, I had to.  I had to continue doing something that we loved doing together and although it was hard – I thought about you and what those walks meant to me growing up.  They meant one-on-one time with my best friend.  It will still be our one-on-one time.

 

My first year without you I loved.  

I had a happy, loving and very healthy baby.  I loved again so deeply when I didn’t think I could love like that again.  I loved her to my core and I know you would too. I loved Jordan, I loved Bea, I loved the rest of our family, and I loved friends like they were family.  I loved and cherished time spent with the people who meant the most.

My first year without you I lived what you taught me.

 

I listened to my conscience.

I developed strong character.

I was courageous.

My first year without you I survived.

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LIVERversary – year 2

I am so proud to write this post.  As of July 7th, our Beatrice is 2 years post transplant and we are so beyond happy!  We celebrated down in Longboat Key with some of her favorite people and her best friend (and cousin), Patrick 🙂 We played on the beach, ran around, went out to dinner, made smores – it was her perfect day!

Since we are talking about Miss Bea it is the perfect time to give an update about her health.

If you remember, Bea had a CAT scan about a month ago to look at her lungs.  They were infected and one was partially collapsed.  The Director of Pulmonary thought this was EBV related and wanted to treat with chemo.  Bea’s liver doc (Dr Campbell) and the head of EBV for Oncology said they disagreed and they didn’t think it was EBV related.

We were basically given two options. Treat with chemo or lower her immunosuppressants and see if she can fight off whatever is going on by herself.

The risk of lowering her ALREADY low immunosuppressants is that she could reject.  I know I have said that in the past but the amount they were suggesting was the lowest they would ever go without pulling her off completely.  The dosage is what we would HOPE she’d be on when she is 6 or 7 while we were trying to test how she’d do without it.

Even lowering it further made Dr Campbell nervous but she didn’t see another choice before jumping to chemo.

SO – we had a real grown up moment.  We were faced with doctors with differing opinions and different strategies on Bea’s health.  It was up to us to make the decision after being presented with both options.

Honestly, it was without even a pause that we decided to go with Dr Campbell.  I have said this before and I will say it again – Dr Campbell is THE reason Bea is doing so well and I have my absolute and full trust in her.  Whatever she says goes and as always, I know my Dad would agree.

We then started on Dr Campbell’s plan on lowering Bea’s immunosuppressants to .2MG 2x a day (7:30am and 7:30pm) and check her liver and EBV every week.

We’ve had labs the last several weeks (the latest being Monday) and her liver looks happy.  I am so beyond thrilled with how her body is doing (and the liver specifically) with on such low immunosuppressants.  Her EBV has been fluctuating – before we left for Longboat it was really low and now it’s up again but the GREAT news is that she isn’t coughing up green and isn’t coughing at all.

To me, that sounds like her lungs have cleared up but I will wait for the doctor to confirm 🙂  We have a big appointment with the head of Pulmonary on Thursday and then with Dr Campbell afterwards to figure out next steps.  My gut is telling me that we will put her under for another CT scan to look at her lungs and then go from there.

Either way, I think she is on the up and up and anyone who sees her would think she is healthy as healthy can be!  In fact, I was at a little family party over the weekend and two doctors even said to me (unsolicited) that Bea looked really healthy.

There is no better thing to say to a mom with a child like mine.

#BEAstrong

 

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food & wine classic in aspen

So, the Food & Wine Classic in Aspen.  This festival has been on my bucket list for years.  Jordan & I first visited Aspen and fell in love with the city when we went with Jordan’s brother and his family and friends for a quick weekend.

The town was so charming – everything was in walking distance, the Farmer’s Market was amazing and the shopping was incredible.  Hotel Jerome really made an impression on me because of the breathtaking interior design.

The actual festival is something I have read about many times and with Top Chef being one of my favorite TV shows – this was the ultimate festival for the contestants to attend.  Jordan and I share a love for food and wine and we both consider chefs celebrities so we were beyond excited about the idea of attending one day.

So, how in the world did we cross this off our bucket list so early?

One of Jordan’s best friend & his wife gave us the tickets.  He was supposed to attend for work but, instead attended a wedding and thought of Jordan when he had his extra tickets.  How lucky are we to have such thoughtful & generous friends?!

The festival was incredible.  We saw cooking demos, attended wine tastings, grand tastings, and even had dinner at the top of Aspen mountain with all of the famous chefs that were in attendance.

It was a once in a lifetime trip and it also happened to fall on Father’s Day weekend.  Missing our Dads is something I have in common with the friend who gave us the tickets.  I think she truly knew how hard the first year is and this incredible experience was a great way to help distract from what could have been a very hard weekend.

SO!  Here are just a few pics I snapped while we were there 🙂

[Prep for the trip….]

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[Find the below blue dress HERE.  Shoes are from Zara and they are old 😦 ]

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[LOVED the below dress and was so excited to wear it!  Perfect Aspen dress – find it HERE]IMG_0220

[I also loved loved loved my hat!  Favorite one for the summer – find it HERE]

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[Lisa Vanderpump and her daughter have a new rose & they had a booth for tasting!  Thank goodness we walked by right at the perfect time for a little photo opp!  AND Lisa poured me a glass 🙂 ]

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[Was also loving this cute blogger from Weelicious!  One of my friends texted me saying her fave blogger was there and we happened to run into each other a bunch! ]

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[And one of my absolute favorite chefs – Richard Blais]

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[Dinner at the top of Aspen mountain was insane.  We took the gondola to the top of the mountain and the views were just stunning.  We were up there right at sunset and it was truly breathtaking.

I could say a million things about the night but I will just keep it to it was one of the best nights I’ve ever experienced.  The food was just so good, prosecco was flowing :), and we got to chat with a bunch of really interesting people.]

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[And day two…]

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[Of course we had to make a stop in Hotel Jerome for a quick drink….]

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[And this lady was one of the highlights of the trip!  Angie Mar was just named one of Food & Wine’s Best New Chefs and we were chatting with her for awhile because she is the chef at The Beatrice Inn in New York!  She was loving the fact that we are both BEAkeepers and was so kind in repeatedly extending an invite to her restaurant when we bring Bea to NYC.  She was so amazing!]

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Again,  truly an incredible weekend thanks to just really thoughtful friends.  Something I will never forget and hope to repeat again 🙂

Hillary