Saturday, May 5, 2012

Saturday, May 5, 2012

Tonight's picture was taken in May of 2008. Each May, Mattie's lower school celebrates Grandparents day (in fact this past Friday, Mattie's classmates who are now in fourth grade celebrated this occasion). During this occasion each elementary school class performs a song for the hundreds of grandparents in attendance. As you can see in this picture, Mattie (front row right, red tie) was up on stage with several of his classmates singing. This was Mattie's first and last Grandparents day. On this occasion, my parents flew in from Los Angeles to celebrate the day with Mattie. They attended the school's grandparents breakfast, the concert, and then visited Mattie's classroom and saw some of the things he was working on. I know this first hand, since on that day I volunteered on campus, and as a volunteer, I had the opportunity to see how special the day was for grandparents and the children alike. I am so happy, looking back now, that I took the time to always volunteer and to be heavily involved in Mattie's development. In 2008, I was an educator, and the month of May was one of my busiest seasons, where I had SO much final grading to complete. Yet, despite that, Mattie came first always and fortunately he did, otherwise I would have missed out on the seven short years we had together.  


Quote of the day: Character can not be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, vision cleared, ambition inspired and success achieved. ~ Helen Keller


Today was a busy day for Peter and I. We completed all sort of chores and later in the day, we transported all the raffle baskets from our home to Carolyn's (our raffle chair). I am thrilled to have space back in our home so that I can continue working on walk plans. Carolyn's children loved the raffle baskets and were attracted to them, which in my book means I wrapped them successfully. Carolyn's daughter, Ellie (who attended preschool with Mattie), is one of our kid vendors at the Walk this year. Ellie is only 9 years old, yet I believe that Lauren Chelenza has inspired Ellie. As many of my readers know, Lauren is 14 years old and is the founder of Bows for Hope, a non-profit whose sole mission is to raise funds for Mattie Miracle by designing hand made duct tape hair bows. Lauren was one of our Faces of Hope speakers last year, and at our Walk, she sold MANY of her duct tape hair bows. Ellie was one of Lauren's good customers. This year, Ellie is working on creating her own designs on hairbands and will be selling them at this year's walk. Ellie is determined to raise money for Mattie Miracle, in her friend's honor. Ellie's table at the walk will be entitled, "Bands for Hope." Today, Ellie surprised me with my own hairband creation that she designed with Mattie Miracle themed colors and also dawned on it a beautiful orange butterfly. I am very touched by this gift, a gift that will remind me of Mattie each time I wear it. So for those of you attending the walk, be on the look out for me and my orange butterfly, and of course check out Ellie's Bands of Hope table!

Later this afternoon, we all sat outside, including Patches (our calico cat). We bought new chair cushions and pillows for our outdoor furniture, and Patches was enthralled with these comfy additions! Needless to say, we are all enjoying our deck and having outdoor time. Our deck table now resides where Speedy Red used to sit, but I purposely bought red pillows and things as reminders of the favorite color Mattie and I shared together!

 

I would like to end tonight's posting with a wonderful on-line submission my friend Charlie wrote months ago about "Team Mattie." It was just published today, however, in my mind the essence of Team Mattie is immortal, because it is through this group of committed people do we see what humanity is truly capable of under great adversity! http://www.helpothers.org/story.php?sid=30971

Friday, May 4, 2012

Friday, May 4, 2012

Tonight's picture was taken in May of 2009, at The Mattie March. In this picture Mattie was surrounded by his cousins (the young children near him) and the rest of the people you see were ALL his vital care team at Georgetown University Hospital. On the far left in white is Dr. Aziza Shad. Aziza is the chief of the pediatric hem/onc program at Georgetown and the doctor who has and continues to help me at Georgetown with my own medical issues. Everyone in the picture wearing a beautiful orchid lei were part of our Georgetown team. At the Mattie March ceremony we acknowledged each of these amazing women, because it took this entire team to help us through Mattie's 14 month battle! This group is comprised of Dr. Shad, Mattie's nurses: Jen, Janelle, Katie, Tricia, Nicole, Erin, Kathleen, Jenny, Ellen, Mattie's Physical Therapist: Anna, and Mattie's Child Life Specialist, Linda. Also featured in the picture is Brandon (Mattie's big buddy) and Robbie (one of Mattie's favorite Child Life Volunteers). Both of these fellows played an important role in Mattie's life and were part of our Georgetown family, which is why it was important to have them in the picture.


Quote of the day: The law of love could be best understood and learned through little children. ~ Mahatma Ganghi


I received a lovely email from our friend Tim today. Tim is a hospital administrator, but the bottom line is he is foremost our friend. He supports us in incredible ways and though he is super busy at work, he hasn't missed one of our Mattie Miracle events. Tim is also a blog reader. He has told me in the past that when he isn't having a good day or needs perspective, he reads the blog. A high compliment! But today's email from Tim caught my attention and it has been swirling around in my head ever since. He wrote about the incredible raffle baskets we put together for the Walk but specifically said, "all that you do is a labor of love honoring Mattie. What is remarkable is how much caring, dignity, and grace goes into that labor."

Though subconsciously what Tim is saying I must know, but reading it made me pause. The incessant pace I work under, and what I have been able to accomplish these past couple of months is beyond the expectation of what one person could possibly do. One of my friends recently said what I can achieve in one month, most people couldn't possibly do in a year. It was a funny notion, but Tim nailed it today. I do it because I am on a quest. Not sure of what, but the quest is driven by Mattie. The energy some of you see me put toward the Foundation this year, is the typical energy I put into things I care about. So you can imagine what I must have been like living in the PICU 24 hours/7days a week, and even on little sleep, I functioned well enough to get people jumping. If only all this work could bring Mattie back or he could see what his cancer battle has inspired. Needless to say, I found Tim's comments very profound today and they have made me very reflective. In actuality planning and hosting the Walk are emotionally challenging for me, and Tim's kind words made a difference to me today.

I am proud to say that I am DONE with wrapping raffle baskets. All 13 baskets are complete. The last one I did today is shown below with its contents listed next to it. If you would like to purchase raffle tickets please visit our raffle website at (remember you do not need to be present at the walk to win a basket): https://www.mattiemiracle.com/Raffle.html

Collectible Lego Systems                         

1) X-Large LEGO Storage Brick, 2)Creationary LEGO game, 3) City Alarm - Join the Chase LEGO game, 4) $100 Gift Card to LEGO, 5) 2 - 243 piece Fire Truck Kit, 6) 408 piece Mobile Police Unit Kit, 7) 294 piece Marina Kit, 8) 403 piece Off-road Command Center Kit, 9) 243 piece Fire Truck Kit, 10) LEGO City Sticker Storybook, 11) Mini-Figure Ultimate Sticker Collection, 12) LEGO - Built this City! Storybook, 13) 2 LEGO key chains, 14) 32 piece helicopter kit, 15) LEGO wrapping paper

Thursday, May 3, 2012

Thursday, May 3, 2012

Tonight's picture was taken in May of 2009, during the Mattie March. I missed this whole interchange, but apparently each player on the St. Stephen's and St. Agnes baseball team came up to greet Mattie that day. While that was going on in the right hand side of the picture, on the left hand side you can see someone was pushing Mattie's wheelchair. That would be Brandon, Mattie's big buddy. We never asked Brandon to do this, he willingly stayed with Mattie that day and did what best buddies do, stick together. While Mattie was undergoing treatment, he told Toni (Brandon's mom) that Brandon was his best friend. Brandon understood cancer because he lived through it, and also knew what it was like to live in a hospital for weeks on end. Those commonalities helped to bond them together, despite their age differences. Next to Brandon in the picture is Tricia. Tricia, as my faithful readers know, was one of Mattie's extraordinary HEM/ONC nurses. Tricia will always hold a special place in my heart because besides being extremely competent as a nurse, she has a heart of gold, and can hold her own while advocating for a patient. So though this just looks like a simple picture with a teen in uniform knocking fists with Mattie, there was actually a whole lot more going on in this picture.


Quote of the day: It is often during the worst of times that we see the best of humanity - awakening within the most ordinary of us that which is most sublime. ~ Richard Paul Evans


This afternoon, I had the opportunity to visit Ann's mom, Mary. I met Mary in December of 2008, at her 80th birthday party. A lot has happened to us in these past three years. Mattie battled cancer and died, Mary and I experienced her husband's death, we are both dealing with grief, and a host of physical ailments. We are very different people and yet cancer and grief connect us. It is most likely this connection which motivates me to visit her and keep her company when her daughter is out of town. Since I have known Mary, I have observed a steady decline in her physical and cognitive states. However, this year alone, Mary's condition seems to have reached an all time low. Mary is for the most part mute and on the rare occasion when she is able to talk, it almost sounds like she is talking to you in another language. It is challenging to see someone like this, especially someone I have gotten to know and who I enjoyed talking with. It would be much easier for me to justify not visiting her and rationalizing it off by saying that she won't remember my presence there. But this is where thankfully emotions trump logic. Caring for someone in a nursing home and making frequent visits are deeply seeded in emotions. If it weren't then I suspect most healthy people would be running the other way from these facilities and not looking back. 

So though Mary and I no longer have two way conversations, I still believe it is important for her to hear me talking and to be stimulated. So I read to her! As I have mentioned already, in March I began reading Richard Paul Evan's Christmas Box Trilogy to Mary. We have completed The Christmas Box and The Timepiece, and today we began the third book in the trilogy, The Letter. As I began reading this book, I quickly surmised that this whole trilogy was meant for me. It is a series that follows a married couple through the loss of their only child, Andrea (who died in a fire at age 3). The first several chapters of this book had me engrossed. Engrossed because it was almost as if Evans wrote it for me. The book illustrates through Mary and David (a couple we have gotten to know from the first two parts of the trilogy) how challenging a child's death is on a marriage. Mary and David grieve differently, need different things, and in the process have migrated apart from each other. So much so, that Mary decides that after months of living estranged lives with each other, she needs to move out and separate from her husband. In true Evans fashion he is weaving a tale to show us how grief and loss can powerfully transform people and relationships. However, as it is true with all loving, committed, and devoted relationships, they are not always rosy. Every relationship has problems, disagreements, major differences, and at times misunderstandings. Some relationships fizzle out, but others take this adversity and grow and change from it. In the tale of The Letter, Mary and I have hundreds of pages to read and absorb in order to learn how through such great heartache, Mary and David can find healing, growth, and each other. If you want to read more about the book, go to: 
http://www.richardpaulevans.com/books/the-letter

Today I wrapped three more raffle baskets. This brings me up to a total of 12 complete and only ONE MORE to go!!! Like the last two nights, I have included pictures of the baskets for you to see along with only a listing of the bigger ticketed items within each basket. I appreciate so many of you going to our on-line raffle ticket website and checking out the items and purchasing tickets!!!

https://www.mattiemiracle.com/Raffle.html

“Cool” Summer Fun

1) Ultrazone Laser Tag Party for 10

2) Shadowland - Up to 12 Player Mega Arcade Birthday Party
3) Luray Caverns – 2 Ticket Admissions
4) Fairfax Ice Arena – 5 passes for a day on the ice and skate rental
5) 20 PEV’s Paintball passes
6) Sportrock Climbing Center – 8 open belay climbs
7) Build-a-Bear (Bear, Birth Certificate, and $10 Gift Certificate)






American Girl Doll “Girl of the Year” Basket     

1) Girl of the Year Doll – McKenna 2) $50 Gift Certificate to American Girl Store/Café 3) Book 4) School Outfit 5) Pajamas 6) Rain boots and Umbrella 7) Brush 8) McKenna's Dog 9) American Girl Tote bag 10) Doll sized tote bag 11) Sporty Wristlet 12) Hairstyle helper (bag with clips and elastic bands) 13) Raspberry colored glasses 14) Sunglasses 15) Casual watch set

Washington Capitals Fan Pack                       

1) 2 Tickets to mutually agreed upon game – seats directly below owner’s box (winner needs to contact donor by August 2012) 2) Autographed Mike Knuble Caps Game Hockey Sticks 3) 2XL Caps T-shirt 4) Washington Capitals Cap 5) Mike Knuble signed Bobblehead

Wednesday, May 2, 2012

Wednesday, May 2, 2012

Tonight's picture was taken at the Mattie March in May of 2009. This picture absolutely gets me. You may not be able to see what the focus of attention was, but it was tent caterpillars. Mattie was with his two buddies, Brandon and Robbie, and in his hand, crawling up his arm was a caterpillar. In fact the cup that Brandon was holding did not contain liquid. NO!!! Instead, it contained numerous caterpillars that Mattie planned on taking home with him that day. Mattie's love and fascination with tent caterpillars developed at his preschool, right on the playground. However, this love only grew stronger over time, and perhaps his interest with metamorphosis captured his attention. In any case, what this picture shows me was even though Mattie was battling cancer and confined to a wheelchair, his love and fascination with the world around him never died. In fact, he spread and shared his curiosity of tent caterpillars with many people that day! 


Quote of the day: Constant kindness can accomplish much. As the sun makes ice melt, kindness causes misunderstanding, mistrust and hostility to evaporate. ~ Albert Schweitzer


My friend Charlie sent me this quote, and the sentiments of it are very powerful. Kindness is a magical word, in many ways it makes us smile, or perhaps it causes us to remember a kind gesture, thought, or feeling someone shared with us. Kindness can clear up the worst of misunderstandings and at times mitigate anger. But kindness does not always come easily. There are days we may feel tired, sad, upset, angry, frustrated, and the list of tiring emotions is endless. These emotions work very hard to prevent or squelch kindness and naturally when we feel threatened or even unappreciated by someone, kindness is also unlikely to happen.

I had the opportunity to meet my friend Mary today for tea. Mary and I met at Mattie's preschool and each year around the time of the Walk, Mary distributes on foot about 70 Walk flyers and posts them all over town. We certainly appreciate Mary's efforts, but I greatly value her as a person and friend. We have gotten to know each other while Mattie was battling cancer and now that he is gone, we get together periodically to chat. You should know that Mary has two beautiful daughters who are in elementary school, and for every special holiday or occasion, Mary shares a picture of her girls with me. To let me know that I am remembered. One of her daughters just celebrated her first holy communion, and as Mary was planning this event, she emailed me one day. She discussed the event, but in the next breath said... "I know you will never have this special moment with Mattie." This thought upset her. It was a simple and yet a profound comment that remains with me. Because even though she was planning a special occasion for her family, she was cognizant of how this might impact me. It doesn't change my circumstances, but the verbal acknowledgment let me understand immediately that Mary gets it. I live in constant conflict, wanting to be happy for other parents around me, and yet extremely frustrated that this is no longer a part of my life.

I spent the rest of the day working on Walk plans and by this evening, I went back to wrapping raffle baskets. Yesterday I accomplished 7 baskets, and today only two. That means I only have four more left to do! Below is a description of the two baskets I wrapped today. Keep in mind that my listing only reflects the more significant items in the package, therefore, it is not a comprehensive list of everything in the basket. On line raffle ticket sales is doing quite well this year, and if you want to check out our raffle and purchase tickets before the walk, go to (remember you do not need to be present at the Walk to win!):
https://www.mattiemiracle.com/Raffle.html

Outdoor Summer Family Adventures Basket

1) National Zoo – Private Guided Tour for up to 10 people – tours on weekend mornings

2) Pinecrest Golf Course – 4 rounds – Monday thru Friday – No Holidays
3) Washington Nationals tickets - Nats Tickets – August 5 – 1:35 – vs. Marlins – Diamond Level Seating  + Parking and Dining
4) SSSAS Summer Camp – 1 week of Day Camp + 1 week of Sports Camp + 1 Lacrosse Camp
5) Six Flags – 2 one-day admission tickets
6) Potomac Nationals – 4 Grandstand Tickets (not valid July 4 or play-offs)
7) Mt. Vernon Estate, Museum & Garden – 4  daytime ticket vouchers

Health and Wellness “A thru Z” Basket

1) Serenity Day Spa – Tension Tamer Massage

2) Zumba

3) $200 Elizabeth Arden Gift Certificate

4) Washington Sports Club Guest Membership – 2 week free Trial Membership

5) Moore than Yoga – 30-minute foot massage

6) Mind the Mat Gift Certificate – 3 pilates, yoga or other classes

7) Arbonne Purifying Sea Soak

8) Arbonne Essentials Chocolate Protein Shake Mix

9) Arbonne Essentials Chocolate Protein Shake

10) Arbonne Essentials Antioxidant Immunity Booster

11) Arbonne Aromassentials Awaken Sea Salt Scrub

12) Arbonne Aromassentials Awaken Body Lotion

13) Arbonne Nourishing Daily Conditioner

14) Arbonne Nourishing Daily Shampoo

15) Arbonne Makeover Event for six people with Katherine Edwards

16) Arbonne $100 Gift Certificate toward RE9 anti-aging system

17) Sugar House Spa - $100 Gift Certificate

Tuesday, May 1, 2012

Tuesday, May 1, 2012 -- Mattie died 138 weeks ago today.

Tonight's picture was taken in May of 2009, at the Mattie March. The Mattie March was technically our very first walk. It was a walk planned, coordinated, and hosted by Team Mattie. The event was designed to celebrate Mattie and allow him to see how many people were supporting him. During that event, we also acknowledged Mattie's nurses with flowered leis. A lot was going on in this picture. Next to Mattie is Bob Weiman. Bob is the head of Mattie's lower school and besides an educator and school administrator, he is a gifted magician. A skill his dad taught him, and one that Bob was teaching to Mattie. Bob visited Mattie often in the Hospital. He gave Mattie his own magic bag and filled it with many tricks he taught Mattie. Mattie had many magic shows in the Hospital, and in many ways magic helped people connect with him, because as his treatments continued Mattie became more remote, isolated, and wanted to shut out the world. Magic pulled Mattie back into this world, and caused him to engage with those around him. At the Mattie March, Bob arranged for he and Mattie to perform a magic show for all the attendees. The trick they were demonstrating was called Peanut Butter Booger. Perfect name for my six year old. Though that is the official name of the trick, for Bob and I, we unofficially refer to it as "Mattie's Trick." You may notice too the person holding an umbrella over Mattie's head. That is Brandon, Mattie's big buddy. What are big buddies for? Brandon was the best! So if you wonder why there is always a magic show at our Foundation Walks, it is because Bob and Mattie started this tradition together, and Bob continues it, in Mattie's honor.  


Quote of the day: Happiness lies in the joy of achievement and the thrill of creative effort. ~ Franklin Roosevelt


If happiness lies in the joy of achievement and the thrill of creative effort like President Roosevelt indicated, then I should be beyond happy today. I finally returned to my zumba class, after being gone from it for weeks!!! I have missed the class and if it were around the corner from me, I would go every day. Moving around to music makes me feel better. After class, I headed straight home and was working on Walk Raffle baskets all day long. I have seven out of 13 completed. Though I take on wrapping them, my raffle chair, Carolyn, has been beyond helpful. She and I have walked practically hand in hand with each of these baskets. So I am proud to introduce you to our first seven below! It is with hopes that I will continue wrapping tomorrow.

Before I describe the baskets, I have to tell you that the permit discussion has continued today. In fact, my friend Tina directed me to her facebook page to read the string of messages on her site. Tina connected me with City Councilman, Justin Wilson yesterday, which has caused a cascade effect, and after my emails to various City Hall offices, they are seriously looking into the permit process and trying to revamp it. I not only feel like I was part of a healthy change process, but I am seeing government at its best. When you can reach out to a public official, have your concerns heard and addressed, and then this cause a reassessment and refinement of a process, it doesn't get better than that!

Here are the first seven baskets I wrapped today!!!!!!!!!!!!!!!!!!!!!!!! 

Each of the baskets contains several items, but I will just list the bigger ticket items here for you. The minimum value of each of our baskets is $500, yet many are worth over $1000. 

Miranda Lambert Basket

·        2 Tickets to WMZQ Fest on June 3, 2012 at Jiffy Lube Live; 2 CDs (Revolution and Four the Record)

An All American Dad BasketTW Steel Canteen Men's Watch (model TW-STEEL-TW822)

Washington Nationals Basket

Nationals Stadium – July 31 – first pitch at 7:05pm –  when the Nationals take on the Phillies. Game package includes 4 Diamond Level seats with parking and Diamond Club and/or in-seat dining.

Potomac & Chesapeake Sailing Excursions

·       Certificate for Day Sail on the Windemere (a 39 foot sailboat docked in Annapolis) ; Potomac River Boat Company – 4 See Alexandria by Water Seaport Cruise Tickets; Dandy Cruises - $100 Credit valid toward 4 course dinner for 2

Arts and Entertainment Basket

1) Gadsby’s Tavern Museum – 8 Tickets for Museum + 8 Tickets for Sabler-Leadbeater Apothecary Museum

2) Puppet Company Playhouse – 4 tickets to any show

3) Jeff Lubin Portrait Studio – Portrait Sitting & custom 11x14 marquis portrait ($1300 Value!)

4) 2 tickets to Little Theatre of Alexandria

5) Newseum – 4 General Admission Tickets

6) Spy Museum – 2 General Admission Tickets and Spy Store Discount Card

7) Kreeger Museum – 6 Admission Tickets

8) Mount Vernon Estate – Tour and Lunch for four people

Dine around town basket

1) Bittersweet Cafe and Catering - $25

2) Great American Restaurants Gift Certificate - $25

3) Mango Mike’s Restaurant Gift Certificate - $30

4) Bread and chocolate - 8" cake gift certificate

5) Caboose Bakery and Café Gift Certificate - $25

6) Gadsby’s Tavern – Dinner for 2 - $80

7) Season’s 52 Restaurant Gift Certificate - $100

8) PF Chang’s China Bistro Restaurant Gift Certificate - $100

9) Bilbo Baggins – Dinner for 2

Celebrate New Orleans Basket

1) 2 night stay at the Ritz Carlton New Orleans

2) $50 Gift Certificate to Commander’s Palace

3) $15 Gift Certificate for Café Du Monde Merchandise

4) 4 coupons for beignets, coffee, or hot chocolate from Café Du Monde

Monday, April 30, 2012

Monday, April 30, 2012

Tonight's picture was taken in May of 2009. Mattie was home between treatments and sitting on our couch. Sitting on top of Mattie was a cat stuffed animal. However, this stuffed animal was very different from most. First of all it looked real and second the fur on it almost felt like real cat fur. Mattie got this gray cat in the hospital gift store. In fact he eyed it and an orange cat in the gift store during each hospital admission. Each time we passed the store, he begged for the cat. It was hard to say no to a child with cancer, and because of the amount of things coming before Mattie each day while he was battling cancer, it was hard to set parental boundaries. Mattie earned this gray cat and the orange cat however by doing physical therapy. He needed incentives and now that I know in hindsight that his cancer was taking over his body, perhaps I shouldn't have pushed him so hard to do physical therapy. But I did not know that piece of information and at the time I was motivated to help Mattie rehabilitate. These cats remain in Mattie's room today.


Quote of the day: Let us be grateful to people who make us happy; they are the charming gardeners who make our souls blossom. ~ Marcel Proust


Based on tonight's quote, I can say that there were various people who made me happy today. Perhaps it wasn't my personal happiness that makes me take notice as much as I felt people understood my concerns and truly tried hard to help the Foundation secure permits for our Walk on May 20, 2012. Before I tell you about the permits and my visit to Alexandria City Hall, I want to tell you about one of my doctor's offices.

As my faithful readers know, I need to take a follow up MRI in May. Actually the second week of May to be precise. For the past three weeks, I have tried getting a hold of the nurse practitioner of the oncologist I have been seeing at Georgetown. I left her two messages and she never returned my calls nor did I get an MRI script in the mail (like she did previous times). So today, I decided to call the front desk of the Lombardi Cancer Center, and try to deal with a live person directly. I was on hold for 15 minutes and then when someone answered and I told her what the issue was, we then got disconnected. I was NOT happy with this level of attention. Having experienced Mattie's hospital care, I knew today's behavior wasn't personal, it is just the system. So I then decided to call a third time to leave a message with my doctor's nurse practitioner. This time I was more forceful and specified the dates I called her and said that if she wasn't going to call me back and help me, then I was certain I could move up the chain of command and get my needs met. Needless to say she called me back within the hour. Her response was she thought I decided to go with another doctor and seek care with him rather than at Georgetown. At which point, I corrected her and asked where on earth did she get that idea?!!! All my MRIs have been at Georgetown, Mattie was treated there, and we raise money for the Hospital, so unless I directly say that "you are no longer my doctor," one can't make that assumption. Either case, that still doesn't justify her lack of follow up calls. I am entitled to consult with whatever doctor I want to about my health, and would hope that seeking various opinions wouldn't frighten a doctor from working with me. Either case, I have learned the hard way, that you have to be your own advocate and no doctor or hospital can do it better than you can. I have also come to the conclusion that adult oncology is a much different world than child oncology. I like neither world!

Now to what made me happy..... This morning I received a text message from my friend Tina. In the message she told me she read about my frustrations with City Hall on the blog and wanted to know if it would be okay to connect me with a former City Council Member she has gotten to know through her own advocacy work in the City. I never turn down help if you approach me. So Tina began working her magic and the next thing I knew, I received an email from former City Council Member, Justin Wilson (http://www.justin.net/bio). Within a matter of an hour, Justin made all sorts of things happen. First of all, he allowed me the opportunity to be heard and to express my feelings of disapproval for the multiple permits and their various fees that I would need to apply for in order to make our Walk compliant with Alexandria code. I explained that as a non-profit, asking us to pay almost $1000 in fees for multiple permits was unfair and not a good or fair way for us to spend our money. Money that people entrust me with to help children and families battling childhood cancer. Justin understood my feelings and within 30 minutes connected me with people all over the City.

One of the two key people Justin connected me with was John Catlett, the Director of the Alexandria Department of Code Administration. John was literally at the airport going on business travel when he received this email from Justin. However, John wrote back to me directly and told me exactly who I needed to work with in his office and assured me that the process would be streamlined for me. John contacted all his people and by the time I walked into the Permit Center door, several people knew I was coming. I assure you this made a huge difference to have directors overseeing the Foundation's applications today. You need to understand that Mattie's school recently had to file permit applications for a spring event. So I consulted with the mom who handled the permit application process on Friday. By the time she and I finished talking, I deduced I needed around 8 permit applications. I knew enough from speaking to this mom to realize that if someone was willing from City Council to connect me to the right people who make decisions, then I would be a fool not to follow through. 

After two hours visiting City Hall, I left having completed TWO applications, NOT 8! That is because I had the right oversight today and the directors working in the office were able to guide the staff appropriately and consolidate what could have been a nightmare of a process. At the end of the day, instead of spending $1000, the Foundation spent a total of $293. Big difference!

The second person I was introduced today to by email was Bob Custard, the   Environmental Health Manager, who works for the Department of Health in Alexandria. The health department application and process is much more straight forward and all their documents are on-line. So I came to the office with my paper work already complete. But I had a ton of questions especially as it related to homemade products. In the past, we have had a bake sale at our Walk, however, the City will not allowed home made items to be sold at a public event. So this changes the nature of our bake sale this year. When it is all said and done, on the day of the event, three inspectors will check out our site and event before it can open. One is the fire marshal, the second is a building inspector who will check the safety of the moon bounce and rock wall, and third is a health inspector to inspect the food and food areas.

I came home today and I wrote myself detailed notes so that I have a better understanding of what I am doing next year. However, I could never have accomplished today's adventure without Tina, Justin, John, and Bob. To them I am very thankful and grateful. They saved me hours of work and the Foundation money! Also on this journey to City Hall, I was accompanied by Johnny. Johnny works at Mattie's school, and he happens to be the husband of Mattie's technology teacher, Mary. Mattie loved Mary and Mary actually visited Mattie every week while he was in the hospital and gave him a technology lesson. When Mattie did not feel like learning, Mary played with him. Mary and Johnny are very kind, compassion, and caring individuals. Without Johnny, we wouldn't be able to have a successful walk. He is my logistic person extraordinaire, who can literally get anything accomplished. He was the person who gave me a heads up about the permit compliance and he also works behind the scenes at every Walk to make sure everything goes well.

So today, I pause and am thankful for knowing people who are moved by the memory of my son, so much so, that they would take the time out of their day to help me and to help the Foundation. People like this do not go unnoticed for they have a special place in my heart and their kind gestures are priceless.

Sunday, April 29, 2012

Sunday, April 29, 2012

Tonight's picture was taken in May of 2009 in Mattie's hospital room. Mattie's friends Louise and Meredith gave him this wonderful sea turtle mood ring. Mattie was partial to turtles, especially after his preschool adopted him one named Roxana. Mattie would track Roxana's migration   patterns on the Internet. This turtle ring was the first mood ring Mattie had ever seen, and he liked it very much. As he was holding my hand, I snapped a picture of us together. This turtle ring remains with me today in my jewelry box.


Quote of the day: Action is the foundational key to all success. ~ Pablo Picasso


Picasso's quote speaks to the day Peter and I had today.  It was a day of ACTION! I woke up early and felt compelled to plant our garden. I credit Peter for the fact that we have a garden and a repainted deck this spring. He was the motivating factor here. If he left it up to me, everything would have remained as it was. A mess! But Peter has been working on me for weeks now. First cleaning the deck, then buying paint, then encouraging us to paint the deck, and finally slowly buying flowers. In fact after we painted the deck two weekends ago, he began buying flowers and left them for me stacked on the deck. It was a subtle hint that it was planting season. I am happy he was persistent and dealt with all of these major tasks in stages. Cleaning and painting the deck was monumental, especially when you consider Speedy Red needed to be disassembled. But the planting today took me about 4 hours, and Peter was helping throughout the process. I could describe what I did, but I figured showing you would be much better.

In my parsley flower pot, Peter stuck this wonderful solar powered butterfly. Our friend, Tad, gave us this butterfly at Christmas time. What you may not be able to see is that the sunlight causes this beautiful yellow butterfly to flutter around in a circle. You can even hear the sound of the fluttering. It is an absolutely fantastic addition to our garden and as soon as Peter assembled it I sent a picture of it in motion to my friend Junko (Tad's wife).

The next six pictures are of our deck. I really should have taken a before and  after shot. But imagine the paint peeling terribly, a large ride-on car sitting where our table now stands, and NO flowers. That is what our deck looked like.

We have been working hard at incorporating the sun and the moon into our garden. So you may see these elements on the walls and in wind chimes. Also notice in the center of the plants is one of the fountains Mattie made me for my birthday in July of 2008.

I am so thrilled to see our deck clean and painted. The improvement is tremendous, and as you can see, we have a big Mattie sunshine hanging on the wall. We bought this beautiful metal piece in Bethany Beach last year. As soon as we saw it, we both knew we had to get it.

In addition, our garden also features butterflies. On our deck door is a painted metal butterfly we purchased in Bethany Beach last year. It is one of the many symbols we associate with Mattie. In fact, Peter planted a box full of butterfly friendly plant seeds today. So I can't wait to see what actually grows from this and whether it will attract our fluttering friends.

Another view!

This is the view of our deck from Mattie's Room. Mattie loved looking outside, especially since his bed was right by the window. He had a bird's eye view, and at night time, he would always check for Mattie Moon before going to bed.

If all of this wasn't enough activity, I also decided to go through our filing cabinets today. I am the queen of saving paper, and a lot of things needed to be cleaned out so I could make room for Foundation papers. Papers which I had piled all over the place. Organized chaos, as I call it, because I know exactly where everything is in my pile system. We literally threw four large garbage bags full of paper out. I thought going through files would be easy, but I had many folders dedicated to Mattie. I came across the following: Mattie's "healthy" health records, sonogram pictures of Mattie, information about his school acceptances, and even files about my baby shower, and how we picked Mattie's name. Going through these files wasn't easy, and most of the items I saved and reorganized them back into folders. In one of the folders, was a detailed account of Mattie's hospitalization in October of 2006. Mattie had an undiagnosed ear infection that led to sepsis, and hospitalization. He celebrated Halloween in a hospital bed that year! While in the hospital, the only thing the floor had to entertain Mattie was blank paper and a pencil. There was NO Child Life Specialist at this hospital. This is a hospital really geared toward adults. In any case, in the file folder were all the pictures Mattie drew that day while in the hospital. I remember it well and naturally couldn't part with a single drawing!