Tuesday, July 25, 2023

Tuesday, July 25, 2023 -- Mattie died 721 weeks ago today.

Tonight's picture was taken in July of 2009, on my birthday to be specific. That day Mattie constructed this lighthouse card for me with my in-laws. This card was reminiscent of all the lighthouses we toured together in North Carolina. By this point, you can see how emaciated Mattie was, as his legs looked more like toothpicks than human legs. You can also see the chaos all around us in the living room, as things piled up all around us and I just couldn't address it. My priority was Mattie. 

Quote of the day: There are two great days in a person's life — the day we are born and the day we discover why. ~ William Barclay.

This William Barclay quote is very poignant, especially as I reflect on yet another birthday. Since I tie my birthday to Mattie's diagnosis, it is sometimes hard to see the forest through the trees. But if I had to address the latter part of Barclay's quote, I think the conclusion to why I was born, is very tied into the creation of Mattie. It was from having Mattie and sharing his journey as his mom, that I truly figured out what things in life are important, what I value, and how I wish to live my life. Perhaps I was born to call attention to the psychosocial issues associated with childhood cancer and try my best to address them. The verdict is still out, but that is what I am sticking with on this year's birthday.  

I would have to say that I had a wonderful birthday. Not because of what I did, but because of the incredible people within my life. They have made a challenging existence much more bearable today. I started my day with a phone call from Peter's parents. They sang me happy birthday and you know what, they still can harmonize beautifully with each other!

Then I had some very meaningful text message exchanges with Tricia, Mattie's favorite HEM/ONC nurse. Tricia has seen Peter and me under the worst of circumstances and she was with us every step of the way. Even on the day Mattie died, and has been supporting Peter and me over the last 14 years without Mattie. Tricia is not only a professional caregiver, she is a caregiver to so many in her family. As caregivers we speak the same language, we get the feelings, the thoughts, the guilt, and incredible feeling of exhaustion. Not to mention the loss of one's identity, as we absorb the care and pain of others. In any case, some how dialoguing back and forth with someone who gets me and gets the situation perked me up. As neither one of us would be happy having others caring for those we love. This is hard to explain, but I have to say it was a real gift to feel understood and valued. It is no surprise why Mattie told Tricia he loved her. 

I also received gifts in thoughts and writing. My friend and colleague, Lisa, who I have known for a long time (as we went to graduate school together), wrote me a heartfelt message. Receiving such feedback from a gifted educator and researcher, made me feel so special. Here is an excerpt from what Lisa wrote to me (Thank you Lisa!):

What you have done with the blog is unfathomable. Amazing. Storytelling. Educating. Humanizing.

I think I know you a little bit and one thing I think I know is that you do NOT need recommendations and suggestions from other people. You are smart, wise, knowledgeable, resourceful, bossy in and EXCELLENT way, warm, kind, a good listener, best mom ever, successful business woman, teacher, detective, and many other magnificent things.

Meanwhile, Peter showered me with flowers (he knows I love lilies too), a shell shaped dish (as a reminder of all our beach trips together), and beautiful sentiments which I will cherish in a birthday card.

Peter knows I have stopped counting. Which is why he wished me a happy 29th birthday today!

My friend Tanja sent me this photo today of a quilted fabric that her mom created in Germany. Unfortunately her mom recently died from cancer, but what touched me deeply is that Tanja wishes to share this handcrafted piece with me. Tanja knows how much I love sunflowers and how symbolic it is to me, as sunflowers represent Team Mattie. I am honored to have this piece created by her mom, Elizabeth. 

My friend Tina came to the house today to visit. Given that I moved into the house, did a lot of work on the house, and then moved my parents in, I haven't had most of my friends to our new home. You know how people have house warming parties, NOT us. I am too inundated with  caregiving to live a normal life. However, there are many things that Tina said to me today, that ring true and I know Peter has been trying to tell me the same thing. Specifically that my current trajectory is not sustainable. I am absorbing this message and I am honored that I have people in my life who care about my well-being. 

Tina, my mom, and me. 

Tina brought me several gifts today. The body wash and lotion caught my attention right away as they are from the Sanderling Inn in North Carolina. The Sanderling is a place Peter and I used to visit yearly. In fact, it was at that Inn that I realized I was pregnant with Mattie. So as soon as I saw these products today, I was immediately transported back in time. 

We went out for an early dinner today. Our fabulous server, Cheryl, surprised me with balloons, a decorated table, and lots of gifts!

This is Cheryl. 

All four of us. We just couldn't get my dad to stop chewing on a crouton!

A selfie of us!

I am thankful for all the amazing gifts I received today. I was lucky enough to receive specialty chocolates from my friend Denise, light butterfly garden stakes from my friend, Heidi and my friend Carolyn sent me something from Edible Arrangements, but my neighbor received it while I was at dinner. I can't wait to see this tasty treat!

I bought a bunch of balloons home from dinner. Overall, I can't thank each and every one of you enough for your emails, text messages, and gifts in all forms. You made a very depressing time in my life, much better.