Monday, July 25, 2011

Monday, July 25, 2011

Tonight's picture was taken on my birthday in July of 2009. This was the last birthday I celebrated with Mattie. Sitting in front of us was a lighthouse birthday card that Mattie created with Peter's parents. I still have this card! As I look at our living room back then, it certainly looks very different than our living room now, which is devoid of toys and Legos. It is hard to believe this was just two years ago. There are moments when I stop and try to remember what it was like to have Mattie physically present in my life and be his mom. Most of us do not give birth to children and have such a finite time with them. But for me, all I have remaining is memories. Sometimes memories are NOT enough.

Quote of the day: Mourning is love with no place to go. ~ anonymous

Today felt like I was living in the land of the lost. I spent the entire day at home and in my pajamas. I just did not feel up to getting dressed. I received a phone call from my parents and lovely emails from my niece and nephew, which perked me up. But that feeling of it being my birthday did nothing for my mood or my spirits. In fact, with my migraine the notion of going out of the house and making lively conversation with friends tonight seemed more daunting than happy. But since I know others arranged and planned their schedules around this dinner, I felt compelled to go.

When Ann planned my birthday dinner, I requested that attendees not bring gifts. The only thing I suggested was for my friends to bring chocolate. Not for me, but for the hospital. As many of our readers know, The Mattie Miracle Cancer Foundation last month began funding a snack cart on the inpatient pediatric units that visits families twice a week. The snack cart offers nutritional and fun snacks to families at NO cost to them. When we were deciding on the snacks to place on the cart, I told Linda (Mattie's childlife specialist) that chocolate was a must! I realize that isn't considered nutritional, but for me, chocolate was a food of survival within the hospital. However, the food cart supplier doesn't stock chocolate! So Linda and Alice (a pediatric nurse administrator) have been purchasing chocolate out of their own pockets to stock the cart. I am not happy about this scenario, and I am working with Tamra, our board member, on finding other sources to supply this cart! In any case, in the meantime, I am collecting chocolate so that I can visit the hospital and provide them with a supply for the cart.

But here is the interesting fact about all of this! The snack cart has been a huge success so far. Families are incredibly appreciative of this free service, and feel as if others care about them while they are in the hospital and dealing with their child's crisis and health condition. I remember how impossible it was to leave the inpatient unit even for a second while caring for Mattie, and if I did not have Team Mattie bringing me food, I may never have eaten. So in a way, this cart was created based on my own experiences, needs, and observations. However, guess what the MOST requested item is from parents? If you guessed chocolate, you get a gold star!!! I am happy that the cart is a great addition to the hospital's services and I am also happy that on my birthday, I can find a way to support this service.

Pictured: The snack cart with hospital staff and a grateful pediatric unit parent!

We took some pictures at tonight's dinner which was held at Mattie's favorite restaurant! These are bags and bags filled with chocolate that my friends are donating to the Hospital snack cart. A cart that Mattie Miracle is funding. In my perspective this gift represents mothers helping mothers!

There was a wonderful turnout of friends tonight. From left to right are: Tina, Ann, Jane, Vicki, Rebecca (Clyde's at Mark Center's executive chef), Marisa, Denise, Mary, Christine, Julie, Margaret, and Michelle

Rebecca was kind enough to come out of the kitchen and greet all of us! As many of my readers know, Rebecca is the chef who graciously grilled all the food at this year's Walk! Thanks to Rebecca, food was a very profitable item at the Walk.

My friend Tina captured a picture with Junko and I. My loyal readers most likely remember that Junko was my friend who would visit me in the hospital and massage my hands, neck, and back. Junko is a friend who understands my sadness and is not uncomfortable in the least sitting with me in it. She will cry right along with me. In fact, I cried various times through dinner tonight, and Junko never changes the subject or flinches away from these real feelings. Which is needed. Crying is sometimes needed and it wouldn't be normal from my perspective to survive what I have been through without having these intense emotions now. Birthdays tend to evoke strong feelings, and in so many ways one of the reasons I did not want to go to dinner tonight was to me there was nothing to celebrate.

Tonight I was surrounded by moms. Naturally moms talk about their children. A conversation I clearly can't participate in. Nonetheless I absorb it. Tina took a picture of me with my friend Grace. Grace was the first mom I met at Mattie's preschool. She knew that Mattie had a horrible previous preschool experience and she said one day in front of the rest of the moms in 2005 that things would be different now. That Mattie was in the right place. She was correct. Resurrection Children's Center was a very special place for our whole family. Tonight during dinner, Grace handed me her phone. On the other line was her son, John. John and Mattie went through two years of preschool together. John and I always got along splendidly. However, though Mattie isn't alive, John still feels a connection to me. He wanted to wish me a happy birthday and to tell me he "loves me!" In Mattie's second year of preschool, the children went every monday to the assisted living facility across the street to visit and entertain older adults. I volunteered in the classroom EVERY Monday and assisted the teachers in taking the children on this adventure. Mattie had his buddies and therefore he really wasn't interested in connecting with me. So instead, on EACH trip, I had John on my right hand and my buddy Nora on my left. These children were glued to me each week and it was mutual admiration. I have to imagine that on some level John remembers these special times. Hearing his voice tonight and how sensitive and caring he was on the phone was a special gift!

You may also have observed in the picture that I was wearing a beautiful pink butterfly necklace. Mattie helped me pick out this necklace when we went to butterfly world in Florida. So to me it was appropriate to wear this symbol today.

I would like to end tonight's posting with two messages. The first message is from my friend, Christine. Christine wrote, "I have been thinking of you all weekend. I know this time of year must be among the toughest especially with Mattie's diagnosis so close to your birthday. It's so unfair and unnatural to experience these two extremely different events at the same time. I wonder how can you feel happy or celebrate when you carry such a burden. I think back to July 2008 with very vivid memories; it's hard to believe that it's now 2011---it doesn't seem like that much time has passed. I would love to say Happy Birthday tomorrow and wish you a wonderful year, but it seems disingenuous. Of course, I really do wish you a wonderful year anyway and would do anything for you to help make that happen. Look forward to seeing you tomorrow night."

The second message is from Mattie's oncologist and my friend, Kristen. Kristen wrote, "Just thinking of you today and sending you a hug over the airwaves! Happy Birthday!!! Enjoy the day...I think you will find birthday wishes from Mattie scattered throughout your day!"