Saturday, May 11, 2013

Saturday, May 11, 2013

Tonight's picture was taken in June of 2002. Mattie was two months old. Though Mattie looks like a peaceful lump here, don't be deceived. At best Mattie would take QUICK cat naps but he was never asleep for long during the day or NIGHT for that matter. Teaching Mattie to sleep was something I will never forget. I was under some delusion before having Mattie that children NATURALLY know how to fall and stay sleep. I imagine most do! But Mattie wasn't one of them! After Mattie was born, we naturally had regular pediatrician visits. I would tell the doctor at each visit that I was exhausted and that Mattie wouldn't sleep! Frankly I don't think they believed me. Most of the female doctors in the practice I found patronizing as it came to the issue of sleep. Until one day I saw the male physician in the practice and he confronted me. He asked me if I was eventually going to teach Mattie to brush his teeth? I thought that was an hysterical question, of which I responded, "of course!" So he said that it was also my obligation to teach Mattie how to go to sleep and practically demanded that I read Richard Ferber's book, Solve your child's sleep problems. I was opposed to ferberization until I was desperate one day and broke down and read the book. It was either that or Peter and I weren't going to make it. Sleeplessness is a wonderful method of torture! After reading the book, I shared the philosophy with Peter and together we tackled it. Yes I would admit the first night was horrible and it took great restraint, but the method worked like a charm. It corrected all of our sleep problems within days. What truly motivated me to read the book was when the doctor told me that if I didn't correct the problem early on it would only get worse and then become harder to manage.

Quote of the day: No one is useless in this world who lightens the burdens of another. ~ Charles Dickens

My fellow cat lover, Cassandra, posted a lovely comment to yesterday's blog posting. Cassandra is a family friend of Peter's but I have never met her. Cassandra periodically writes to us along our journey. Each of her emails, as I have told Peter, is usually very insightful, spot on, and sensitive. Yesterday's was no different! Cassandra acknowledged how difficult tomorrow will be for me, but she also brought to my attention another interesting dilemma. Which is if you are a woman and you go out on Mother's Day, people naturally wish you a Happy Mother's Day! Certainly that is nice, but what if you aren't a mother? Certainly some women choose not to become mothers and yet there are many women who are also unable to have children for various reasons. You would be amazed how three simple words when put together have a way of leaving a terrible sting. HAPPY MOTHER'S DAY though innocuous to most is quite painful to a segment of us. This maybe one of the reasons I won't go out to lunch or dinner on Mother's Day. The very first year I went out on Mother's Day after Mattie's death, the restaurant gave me a rose and wished me a wonderful Mother's Day! I naturally accepted the rose but there was a great deal of emotion wrapped up into that whole experience, especially when I saw families all around me.

Today Peter and I did another big Walk preparation push. We delivered six boxes of t-shirts to our registration chair. I am so grateful that Christine takes these boxes from me because my home was beginning to look like a warehouse. Christine is another one of our faithful volunteers who has been overseeing registration for us for four years. No easy task but she does it without even batting an eyelash. Christine's son, Campbell, and Mattie were very close friends in kindergarten and through our sons we spent a lot of time together. Christine and I were reflecting on one of their many playdates just the other day. One day, while Mattie was playing in Christine's backyard, he decided to dig a huge ditch. I mean HUGE. So big that I could have jumped into the hole and gotten lost. Needless to say, filling that ditch back up was no easy feat for Christine, but it is things like this that make Mattie memorable. He was determined and yet creative. 

After visiting Christine, we then headed to visit Carolyn, our raffle chair. Another dedicated soul who has been doing this role for four years straight. This is a picture of a car load of raffle baskets that were deposited in Carolyn's living room. As our home is getting cleaned out, I am definitely transforming my friends' houses!

It turns out that 12 raffle baskets have a way of filling up an entire trunk of an SUV! Totally amazing.

Friday, May 10, 2013

Friday, May 10, 2013

Tonight's picture was taken in June of 2002. I love this photo because to me Mattie appeared to be very serious and quite focused on something in his periphery. The funny part about Mattie was he had a sense of humor right from day one! When he was less than three months old, I called Peter at work in a panic as well as the pediatrician. Mattie was making this funny wheezing sound. From my perspective it appeared that he was having trouble breathing. The doctor tried to coach me over the phone and said that if the problem worsened or didn't stop within the half an hour, I should take Mattie to the emergency room. By that point Peter came home, and as we continued to observe Mattie we deduced that he wasn't wheezing at all. Instead from Mattie's perspective something he had been observing (probably me getting hysterical) was very FUNNY to him and therefore the sound he was making was a laugh! A day I will never forget, but it illustrated to me that I had a live wire on my hands.

Quote of the day: If you want happiness for an hour, take a nap. If you want happiness for a day, go fishing. If you want happiness for a year, inherit a fortune. If you want happiness for a lifetime, help somebody. ~ Chinese Proverb

I had a marathon licensure board meeting today. Fortunately we only meet once a month. I have served on this board for over a decade, and as chair of the board most people do not talk to me about Mattie or my loss. I have come to accept this which is why today surprised me greatly. After our meeting was over, several board members came up to me to give me a hug and to let me know that they will be thinking of me on Sunday. Frankly this show of concern, compassion, and sensitivity caught me off guard because it was completely unexpected. Nonetheless, I felt very happy that people were verbalizing my reality and the fact that yes Sunday is Mother's Day and I flounder to know how to manage the day. Someone else this evening asked Peter if he was taking me out on Mother's Day. Peter's response was quite accurate. I do not like going out on Mother's Day because I do not like seeing mothers surrounded by their children. I also do not like strangers wishing me a happy mother's day. I am not sure why, but there you have it. It is occasions like this in which I feel very isolated from mainstream society and when I feel like this, I simple retreat.

I have heard non-stop flower commercials on the radio this week. Apparently FTD did this ridiculous poll of moms and the majority of moms feel that flowers and candy DO NOT constitute a mother's day gift. Honestly!!!!!????? To me listening to this, this sounds incredibly ridiculous and selfish. Flowers and candy are gifts, these are not things that should be expected in addition to gifts! I would actually like to get a hold of FTD and let them know that the true gift for any mother is actually a healthy child. The gift doesn't come in a box, with a bow, or a vase!!! 

Tonight I staged and wrapped the 12th and final raffle basket. This is our Lego Collectible Basket! Two out of our 12 baskets this year were able to be created thanks to donations Mattie Miracle received from Girl Scout and Brownie Troops from Mattie's School. The girls raised money through Girl Scout cookie sales and we are honored that they selected our Foundation to benefit from their sale success. Mattie was a huge LEGO fan and therefore in honor of Mattie we always have a LEGO raffle item!

Thursday, May 9, 2013

Thursday, May 9, 2013

Tonight's picture was taken on May 5th of 2002. I remember this day well because Mattie was about one month old and we took him out with Peter's family. While we were in Shirlington, it registered with me that it was cinco de mayo. Not because I was cognizant of the date but because I could see the shops and restaurants were celebrating something! While in Shirlington, Peter's parents bought Mattie this beanie bunny. I loved Mattie's expression as he was trying to track and focus on this bunny! It is as if this moment is frozen in time, because I remember it so well.

Quote of the day: It’s not enough to have lived. We should be determined to live for something. May I suggest that it be creating joy for others, sharing what we have for the betterment of person-kind, bringing hope to the lost and love to the lonely. ~ Leo Buscaglia

I had an early start to the day. I was at Holton-Arms school in Bethesda, MD at 7:45am. This is Annie, the 12 year old who I have nicknamed our "Mattie Miracle Ambassador." Annie's mom Evelyn took photos of us this morning and though Evelyn and her family have moved to Maryland two years ago, I am thrilled that we have been able to spend time with each other this year. For my faithful readers, Annie's dad is Coach Dave. Dave has been a crucial part of Team Mattie right from the beginning when Mattie was diagnosed. Mind you Dave did not know Mattie directly, but when he heard of our story, he immediately became involved and commandeered the whole School's football team to relay around Mattie. Dave visited us in the Hospital and at home and to this day he still wears his Mattie orange wristband that our care community created for us in 2009, when Mattie was still alive. Dave's whole family is devoted to our cause. This morning Annie addressed the entire lower school in an assembly and then introduced me. I am very proud of her accomplishments and admire her commitment to the Foundation.

I spoke to the girls, their teachers, and administrators for about five minutes or so. The take home message was that the money they raise in their school fundraiser next week is going to a good cause. A cause that directly supports the lives and care of children with cancer and their families. Mattie Miracle is a very unusual non-profit because NO ONE working with us is paid. Including myself! Which is why I am adamant with whatever audience I address that their money helps actual people. By showing this slide behind me today, I gave the girls actual examples of where their money will be going (for example: a free snack cart to in-patient families at Georgetown University Hospital, to support pediatric nurses during a monthly support group luncheon, and toward the salary of a child life specialist at Georgetown University Hospital).

When I got home today, I had a long list ahead of me for the Foundation Walk. However, one very large task, was taken off my plate by my friend Debbie. Debbie has been intimately involved with Team Mattie and the Foundation since 2008. When our care team created the first walk back in 2009 (when Mattie was alive), Debbie coordinated kid activities and games. Now five years later, guess what? Debbie is still coordinating kid activities and games! Each year Debbie adds something new and creative to keep kids of all ages busy and happy. As a former teacher, Debbie and I have similar styles. We both are task oriented and details are important to us. We are the perfect match. When I found out Debbie was doing walk signage for me, I practically wanted to hug her. As I told her today, she is an angel. The notion of doing all these signs was overwhelming to me. The beauty of what Debbie does is she buys materials for the signs and then has a sign making party for a bunch of her children and their friends. She provides them snacks and they provide the designs and creativity. I love the notion of kids helping kids and kids doing something for a cause. So Debbie's poster party is right up my alley.

It is thanks to volunteers like Debbie, that I am able to chair our Walk each year. I can do all the planning possible, but without input and hands on help, I would not be able to execute the event. So tonight, I pause and consider myself fortunate in the sense that I have a core group of volunteers working with me. Not just this year, but throughout the years.
 

Wednesday, May 8, 2013

Wednesday, May 8, 2013

Tonight's picture was taken in May of 2002. Mattie was only a month old, but look at his expression! If this doesn't scream out HELLO, I'm watching you and I'm very alert, I don't know what does!!! Mattie was a force, an energy, and very connected to me. In a way, I feel like I am living out some sort of cruel experiment that is trying to assess the impact of losing someone so important to my existence.  I had the chance to meet with someone else today who also lost a loved one. This person and I really do not know each other well, but guess what...... the perspective that grief will always be a part of us and time doesn't heal all wounds, are deeply shared between us.


Quote of the day: The greatest mistake in the treatment of diseases is that there are physicians for the body and physicians for the soul, although the two cannot be separated. ~ Plato

Tomorrow morning I have been asked to visit the Holton-Arms School in Bethesda, MD. I have been invited to the lower school's morning assembly to address all the girls and share some information with them about Mattie Miracle. I have become connected to this all girls school through Annie, a wonderful sixth grade Holton-Arms student who is a huge Mattie Miracle fan. Or as I call her, our "Mattie Miracle Ambassador." My faithful readers may remember that I went to Annie's school in March to support their Community Service Bazaar, of which Mattie Miracle was represented thanks to Annie. Annie serves on the community service committee of her school and she basically advocated for her School to fundraise for us next week. The School selects one charity per year to support and this year thanks to Annie, we have been selected. So I welcome the opportunity (despite the hour of the morning!!!) to get the word out about Mattie Miracle. Because of the age range of students, I figured a slide that illustrates what we are about would help them. A picture is always worth 1000 words.

As you can see, in the top row (left) is a photo of Annie and two of her friends at the Holton-Arms Bazaar. Within 45 minutes at the Bazaar these girls sold $200 worth of handcrafted merchandise. The top middle photo was taken at the 2011 Mattie Miracle Walk, the top right photo was Mattie Miracle's visit to the Build-a-Bear store with a local Alexandria Girl Scout troop. This Troop raised funds to build 100 bears and then as the third row (left) photo illustrates, the girls visited Georgetown University Hospital and distributed bears to patients and their siblings.

The second row (left) is a photo I took with Lauren Chelenza, the creator of Bows for Hope, at our 2011 Walk. Lauren is in 9th grade and developed her own non-profit to raise money solely for Mattie Miracle. Lauren is an osteosarcoma survivor and was diagnosed around the same time as Mattie. A week apart! The middle photo in the second row depicts our Hospital snack cart that we helped to establish and that we keep stocked. I think the middle right photo doesn't need much explanation..... that was me sitting with 1000 pounds of candy that the Foundation donated to the Hospital after our successful post-Halloween candy drive.

The third row middle photo illustrates, "Comfort Positioning." This is a technique that child life specialists train parents and other caregivers to provide to the patient. This type of positioning is used by the Child Life Specialist that Mattie Miracle helps to fund. This form of positioning helps comfort the patient during procedures and IVs. Lastly the photo on the bottom right was taken at one of check signing parties that we had at Georgetown University Hospital, funds which are used to endow the Mattie Miracle Child Life Program Fund.

Tomorrow's greeting to the girls has to be short and sweet, yet I want it to be memorable, and capture their attention. I believe it is crucial to energize the younger generation and empower them to participate. Age doesn't matter, kids can help make a difference in the lives of children with cancer. My new motto is..... if I have inspired Annie to want to advocate on behalf of Mattie Miracle, then I am doing something right!

Tuesday, May 7, 2013

Tuesday, May 7, 2013 -- Mattie died 191 weeks ago today.

Tonight's picture was taken in April of 2003. Mattie was a year old at that point and though he was standing, he wasn't walking at all without assistance. The irony of this photo was we printed it out and had it on the refrigerator for the longest time. As Mattie got older, he would come into the kitchen and stare at this particular photo. So one day, we walked him back out to the coffee table and compared his current height to the height he was at in the photo. Mattie got a whole kick out of this exercise because by that point he was towering over the table in comparison to what you see here. Kids love to measure their growth and to see that kind of progress. Nothing shows progress better than a picture!



Quote of the day: Old age is no place for sissies. ~ Bette Davis


In the midst of running around and doing chores today, I went to visit my friend Mary in her assisted living facility. I knew her daughter wasn't feeling well and that her caregiver wasn't working today. So I appeared around lunch time so I could sit with Mary, chat, and feed her lunch. I decided Bette Davis' quote was right on the money given what I observed today. The dining room was filled with residents today and unfortunately many of them are not only physically impaired but also cognitively impaired. Some of them scream, talk to themselves, and from an outsider's perspective just look pathetic. The pathetic part is most of these residents are not as lucky as Mary. Many of them do not have regular visits from family members and friends.

As I sat there feeding Mary, I looked around in a sea of wheelchairs and wondered, what were these people like when they were younger? At one time they were active, moved around like me, conversed, and were members of our society. It is a humbling reality to know what can happen to someone when they age. This reality is not new to me, since I have been around older adults all my life, lived with my maternal grandmother, and also watched her deal with the aftermath of a devastating stroke. Yet it is humbling to stop and think that anyone of these adults in a wheelchair could be me. Despite this sobering environment, there were moments of true comedy. Some of the residents are indeed cognitively intact, and not unlike watching teenagers, these residents also form cliques. The cognitively intact clique has quite a lot of commentary to dish out regarding the residents who are screaming, drooling, and moving their wheelchairs around in repetitive motions. Their intention is not to be mean or to pick on their fellow residents, but I truly believe the critiques and commentary help them normalize their reactions to living in an institution. 

As I was sitting next to Mary, her table mate started to chat with me. Mary's tablemate was one of the cognitively intact residents. Apparently she had been observing me while helping Mary and she let me know that she thought I had incredible patience and wanted to know who I was. When I told her that Mary is my friend, she said that Mary was lucky to have a friend like me. She said most people do not make the time to come and visit, especially friends. This woman said the keyword, or my hot button..... TIME! We both agreed that we live in such a fast paced world, there is no time for anything. Yet when will the right time be? Tomorrow??? I learned when Mattie was diagnosed with cancer and through his death that time connecting with others is vital. Which is why, if someone asks me for help or to talk, I make the time. It is true that Mary may not remember that I visited today, but the bottom line is, I do.

I learned about this woman's life history today over lunch and then I explained to her that Mary and I met each other in December of 2008. When I told her that Mary lost a son to cancer, and so did I, her response was basically that we all need someone who understands us and fortunately Mary found me. Very sweet!

Later this evening, I had the pleasure of being interviewed by a reporter for The Connection Newspapers. She wanted to do a story on Mattie, Mattie Miracle, and the Walk. We chatted for 40 minutes and she was an absolute delight to share our story with. In fact, she told me she has been reading the blog and what the Foundation is doing, and basically she is tired from just thinking about it. That had me laughing! She wanted to know how we do it? An excellent question, but we both knew the answer is...... MATTIE! When the web link comes out to the article, I will post it on the blog.

Monday, April 6, 2013

Monday, April 6, 2013

Tonight's picture was taken in May of 2004. Mattie was a fellow who loved things with WHEELS. Peter's parents gave Mattie this sit-on fire truck and as you can see Mattie wanted to do two things at once.... he wanted to grab a hold of the truck and also wanted to reach for the camera with its flash! Mattie was the ultimate multi-tasker!!!










Quote of the day: The days of our lives, for all of us, are numbered...We know that. And yes, there are certainly times when we aren't able to muster as much strength and patience as we would like. It's called being human. But I have found that in the simple act of living with hope, and in the daily effort to have a positive impact in the world, the days I do have are made all the more meaningful and precious. And for that I am grateful. ~ Elizabeth Edwards


I never left our home today or actually moved from the computer. The last two weeks before the Foundation Walk are usually super hectic. This year proves to be the same and perhaps slightly worse. I have lost a couple of my steady volunteers this year and as such, I have picked up their tasks. Tasks they typically are working on for me. So it is Monday and I can already feel like I don't know if I am coming or going.

In the midst of working alone, by a computer, and non-stop today, I received this beautiful photo from Peter's mom. She went for a walk today around Horn Pond, a local pond near her home in Massachusetts. She shared this wonderful sighting with me and as soon as I saw it.... I immediately thought of Mattie! Mattie always loved seeing a mama duck with her ducklings. He always said that reminded him of us! If you look closely at this photo you can see the mama duck with 11 of her ducklings in tow. Mattie visited Horn Pond many a time when in Massachusetts and he loved all the wild life in and around the Pond. It is like our Roosevelt Island! Seeing this photo was a wonderful diversion today from the grey, cloudy, cool, and depressing weather Washington, DC is having! Not to mention a welcomed change from staring at words and Walk materials all day.

Sunday, May 5, 2013

Sunday, May 5, 2013

Tonight's picture was taken in April of 2004. Mattie was two years old and on a walk with us through Roosevelt Island. As you can see Mattie collected dandelions along the way. Mattie liked to collect things..... rocks, sticks, leaves, and flowers. We never came home from a walk on the Island without a keepsake. In fact when Mattie was at Georgetown Hospital, on the days he was well enough to go outside with his wheelchair, he would collect things from the Hospital garden. We still have the huge rock he picked up outside the Hospital library. This rock serves as our front doorstop now and whenever I look at that rock, I remember that day strolling outside the Hospital with Mattie.

Quote of the day: Remember no man is a failure who has friends. ~ From the movie, A Wonderful Life

A Wonderful Life is not only a classic holiday movie, but it is a movie which portrays and celebrates values, convictions, and the meaning of one's honor, loyalty, and word. I suppose from time to time, just like George Bailey, we all need someone to tell us our life matters or what we are doing is important. I may not have a "Clarence" in my life, but someone who I recently have become acquainted with wanted me to know that he feels I am special and an angel. Clearly I am no angel, but the notion made me smile. This quote was sent to me today and I decided to post it. At the end of the day, it is our human connections that matter the most and what truly determines our success. We forget that from time to time and with today's fast pace world, few people make the time or have the energy to listen, slow down, and connect with someone on a deeper level. Without such connections however, life is hollow and meaningless.

It was another BUSY day in our home. I can happily report that 11 out of 12 raffle baskets for the Foundation are not only staged but wrapped. I would have wrapped all 12, but the items for the twelfth basket haven't been donated yet. They are on their way! Below are photos to help you see what has kept me busy this weekend! However, what you can't see is the months of work that went into soliciting and accumulating these items! To see the content of these baskets in more detail, please go to: https://www.mattiemiracle.com/Raffle.html

A new raffle item this year is a T-shirt Quilt Basket. I am friends with a mom whose child is a cancer survivor. This mom started her own quilt making business. She makes beautiful pieces of art! Terri has offered to make one of our raffle winners a t-shirt quilt. Literally this is a quilt made out of t-shirts that the winner will give to Terri. Usually people select t-shirts that have meaning and importance to them which they want to capture within a quilt. In terms of our raffle basket, we are getting people in a t-shirt mood by adding three of our Walk t-shirts (walks 2010, 2011, and 2012) as a memento.

Sometimes people ask me how Carolyn (our Raffle chair) and I come up with the basket ideas! Well at times the ideas just present themselves to us. Kathleen Kinsolving wrote to me one day and told me she was going to send me a signed copy of her book, Dogs of War. Thanks to Kathleen's contribution, we decided to create a Furry Friends Basket.

I have had the good fortune of being connected to a Brownie Troop at Mattie's school. This Brownie Troop donated all their sale proceeds from selling girl scout cookies to Mattie Miracle. The donation was specifically to help us generate this cute Money Tree Basket. Hanging from our tree are all sorts of wonderful gift cards to stores like Macy's, Target, Starbucks, and Amazon (to name a few!).

Our International Dining Basket may be hard to see through a photograph, but the structure of this basket isn't a box or basket. It is a metal Eiffel Tower Keurig Coffee Cup holder. Attached to the Eiffel Tower are many wonderful gift cards to local restaurants!

Back by popular demand is our Sailing Excursion Basket. It is always a top seller!

This Father's Day Basket has a very patriotic theme and I thought it wouldn't be complete without a beautiful butterfly.  

This is our Washington Capitals Basket! I may put these baskets together but I do not brainstorm these creations alone. My friend Carolyn and I have been working together on the Mattie Miracle raffle for four years now. It is a labor of love and Carolyn helps me accumulate and shop for all these items. Carolyn also keeps us organized and has ticket sales, quantities, and selling data down to a science.

This is our Las Vegas Basket. However, Caesars entertainment has 38 other properties (most of which are not gambling related) around the Country that this gift certificate would also cover.

This is our Spa basket! Filled with all sorts of goodies.

Our Nats Basket just screams... take me out to the ball game! Not only does this item feature amazing tickets but the Nats gear inside the basket will make any fan happy.

The ABBA Basket celebrates the dancing queen within all of us. Mattie was a huge ABBA fan and I know if he knew we were featuring this basket he would be thrilled!