Saturday, July 2, 2016

Saturday, July 2, 2016

Tonight's picture was taken in May of 2005. Mattie was clearly standing on a tractor stool. What you should know about this was Mattie and Peter designed and built this stool together. In fact their initials are on it! Mattie loved anything with wheels and when he needed a stool to reach the sink these two creative guys got together, went to Home Depot, bought some wood and paint, and the rest is history. I love this stool so much that we still have it. It sits in my clothes closet and I use it when I can't reach things. I am sure when Mattie and Peter originally designed it, they never thought I would be the stool's user. I know I never did.


Quote of the day: Maybe you judge what you leave behind by what you inspire in other people. ~ From Kinky Boots, the Musical

This afternoon, Peter and I went to see Kinky Boots, the musical at the Kennedy Center. Despite living in our Nation's capital, I can't say we are lucky enough to have access to numerous Broadway musicals on a regular basis. So when they do come to town, I like to see them, because Peter and I both love musicals. Which should make sense since we met each other in our college's choir. In all reality when I read the synopsis of Kinky Boots, it doesn't resonate with me. Yet we did purchase and donated Kinky Boot tickets for the Mattie Miracle raffle and I figured they would sell since the show has NEVER been to DC! I was right. Yet I felt if I was encouraging others to go, I should purchase tickets for us too. So I got great tickets two days ago at a discounted rate through Goldstar! 

Here is the synopsis of Kinky Boots: 

After his father's demise, Charlie Price inherits the family business, a shoe factory in Northampton, England. He is not interested in shoes, and the factory is in such dire financial straits that he must lay off 15 employees. However a fortuitous encounter with a transvestite cabaret singer inspires Charlie to save the factory from closure by producing women's footwear for men, much to the chagrin of the workers.

Though there are many men on stage dressed as women, this is not an La Cage Aux Folles type of thing. To me this musical has much more substance, meaning and emotion! Also regardless of your gender preference this show has a moral message that isn't gender specific but human being specific! Was the music slightly loud and was the dictation of performers hard to understand.... yes! But you have to look passed that. The dancing and choreography were wonderful, fun, creative, and made you want to get up and dance at the end! But I think what caught my attention is the moral messages throughout the show. The show is all about living up to your potential, discovering who you really are, and to follow your passion in life. At the end of the show there is a musical number entitled, "Raise you up/Just be." This is a segment of the lyrics from that number which I just loved..............

Alright, now we've all heard of the 12 step program, have we not?

Yes, but what you can do in 12, I want you to know that we all can do in 6 now, and it goes like this:

One: Pursue the truth

Two: Learn something new

Three: Accept yourself and you'll accept others too!

Four: Let love shine

Five: Let pride be your guide

Six: Change the world when you change your mind!

Kinky Boots closes at the Kennedy Center on July 10. If you are looking for something fun and uplifting this is worth the ticket price. 

Washington Post Review:

https://www.washingtonpost.com/entertainment/theater_dance/kinky-boots-at-kennedy-center-struts-kicks-and-empowers--just-by-the-book/2016/06/16/9ccec7e2-33d8-11e6-8ff7-7b6c1998b7a0_story.html

Friday, July 1, 2016

Friday, July 1, 2016


Tonight's picture was taken in May of 2004. We took Mattie to the National Arboretum. Outside the visitor's center is this lovely pond, which features koi. They sell fish food and of course we got some so Mattie could experience seeing these huge fish up close and personal. I don't know if you can see this fish looking at us with his mouth WIDE open. But clearly Mattie was intrigued and wasn't sure whether to get closer or to back away. 






Quote of the day: A meow massages the heart.  ~ Stuart McMillan

I am working with City Dogs in DC to also adopt a cat. Their cat division is called.... what else? City Kitty! The volunteers at City Dogs Rescue are super nice, very professional and very responsive. I can't say that for every rescue organization I have contacted since February. Several lost my application, never contacted me back and the list goes on. 

Peter and I are interested in three of the MANY cats they are trying to adopt. The way City Dogs/City Kitty works is that the animals are NOT housed in cages waiting to be adopted. Instead both dogs and cats are rescued from kill shelters and placed in local foster homes. These are people who either own pets or are pet-less. They agree to foster these rescues until they are finally adopted in a forever home. What I love about this concept is you are not seeing animals caged and further traumatized. So we are driving to Maryland to the foster home of Hazel the Cat on Sunday. Her foster mom sounds delightful and we will have the opportunity to learn more about Hazel and interact with her.

This afternoon, I went of a five mile walk. It was super humid, sticky, and hot out. But I did it anyway. You can see that I saw several beautiful things along the way!

Rows of vincas!

Lovely yellows! I am a big black eyed Susan fan! This is the time of year when they start to pop!

The boats are out and celebrations are starting early for the July 4th weekend on the Potomac. 

The Key Bridge! I crossed this bridge twice today. Once going into Arlington, VA and then back over to get into DC. 

Georgetown Canal, which I have to pass on the way to the Key Bridge. 

This sight makes me laugh! These three people are paddle boarding! Literally it looks like they are standing on a surf board. They have a paddle in their hands and use it to propel themselves through the water. They make it look easy, but I am sure it is a balancing act. 

Thursday, June 30, 2016

Thursday, June 30, 2016

Tonight's picture was taken in August of 2002. Mattie was sitting on our couch positioned next to his basket of small stuffed animals. It is funny, when you have a baby, I am quite certain the number one gift to give is a stuffed animal. Yet Mattie for the most part did not gravitate to any of them. But we certainly tried. After I had Mattie, I always thought twice about giving a stuffed animal as a baby gift. Otherwise, prior to raising Mattie, I must admit I was guilty for giving many as gifts.  


Quote of the day: I think dogs are the most amazing creatures; they give unconditional love. For me they are the role model for being alive. ~  Gilda Radner


Since February, I have wanted to rescue a dog. I really wanted a specific breed.... a sheltie or collie. These are hard breeds to come by because they are SO popular... these dogs get snapped up quickly. I filled out numerous adoption applications over the past months, yet nothing panned out. Then a friend of mine of Facebook sent me a link to City Dogs Rescue. I know City Dogs, because it is right next to City Wildlife in DC. The place I brought the injured dove in February, who was cared for and then released back into my neighborhood.  

Today I filled out City Dog Rescues extensive application for a dog and a cat. Within a few hours, I was contacted for the adoption of both! So much for all the collie and sheltie rescue leagues I was dealing with. Of course, those other rescues are dealing with more pure breed rescues. Nonetheless, City Dogs rescues dogs and cats from kill shelters, which I clearly want to support. 

This is specific info about City Dogs.................................. (http://www.citydogsrescuedc.org/about.html#.V3WflvkrJD8)

City Dogs Rescue rescues adoptable dogs and cats in overcrowded and high-kill shelters, where resources are severely limited. We offer a lifeline to as many of these wonderful animals as possible. Sadly, many of the dogs and cats that City Dogs Rescue takes are just days — and sometimes hours — away from being euthanized for no reason other than lack of space. By finding these animals permanent and loving homes in the DC metropolitan area, we can enrich lives of humans and their pets.

We are interested in three different cats. But will need to meet them to make that determination. However, here is the fellow we plan on fostering first for a week to determine if we want to adopt him. How do you like this? The date we have to decide as to whether we want to adopt him is July 23! Very symbolic, since Mattie was diagnosed with cancer on July 23, 2008. Seems like a Mattie sign. 

This is Lenny. Of course if we adopt Lenny, the first thing I will do is change his name. He doesn't look like a Lenny to me. He looks like a "Sunshine."


Lenny is five years old and is a border collie mix. He is coming up to DC from South Carolina. 

The full view of Lenny. We will be attending a training class on July 10th and clearly caring for a dog who is coming out of a kill shelter will have its challenges. Since he could be very anxious, untrusting, and easily upset with his new environment. All of which I get, since if you did this to me, I would be a mess! 

This is the part of South Carolina that Lenny is from, Picken's County. In the upper most west quadrant. 


So stay tuned for updates on Lenny, who hopefully will be a positive addition to our lives. 

Wednesday, June 29, 2016

Wednesday, June 29, 2016

Tonight's picture was taken in August of 2002. I remember a friend of mine sent me this huge exercise saucer for Mattie when he was a month old. When I first saw the footprint on this toy, my reaction was..... where were we going to put this? I imagine all new parents go through this, because it is hard to believe the amount of space baby items consume! I remember first putting Mattie in this saucer when he was three months old. He absolutely hated it. So I figured he wasn't ready. However, as Mattie wanted more movement and independence at four months of age, I reintroduced Mattie to the saucer. He took to it like a duck to water. He loved the feeling of standing up, of being able to turn around in the seat on his own, and of course to manipulate all the toys at hand height!


Quote of the day: All truly great thoughts are conceived while walking. ~ Friedrich Nietzsche


I agree with Nietzsche's quote. Great thoughts can arise while you are walking. But in addition to thought, I also think walking is very good for one's emotional health. It gets you up, outside, seeing people, the world around you, and of course all those physical things translate into one's emotional well being. 

Some of you may recall that I had a horrible February. I was out of commission and couldn't function. My symptoms ranged from nausea, vomiting, dizziness, a mental fog, numb arms and legs, and a loss of ten pounds. Thankfully my doctor took me seriously and though I felt I was having a bad reaction to an anti-inflammatory medicine (taken for a surgery I had in November), she wanted to rule everything else out. 

This of course led me back to my neurologist. I have been dealing with this fellow for six years now, and though I call him "Mr. Personality" (because his lack of one!), I know he is competent and I really needed him to weigh in on February's problems. Fortunately testing revealed nothing but he wanted me to start physical therapy for the numbness in my extremities. I have been working with a wonderful physical therapy practice since the beginning of March. I have two sessions a week and I am still attending therapy now. So I am four months into it and still going strong. Thankfully Peter has good health insurance, as I learned first hand how important this is when Mattie was battling cancer.

It was my physical therapist who suggested I get evaluated for fibromyalgia, which I will be doing in a few weeks. Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. There are certain areas of the body that people with fibromyalgia tend to have pain, and I fit the bill for each of these locations.

Unfortunately I am not a very medical compliant patient because I do not like taking medications and when I do, I tend to develop side effects that are almost as bad at the original problem. For example, I was taking a migraine medication long term and had to stop because it was giving me kidney stones every three months. This is a rare side effect on this medication, but if it is rare it will happen to me. So if I do have fibromyalgia, I will be looking to deal with it alternatively, and I know exercising and movement helps. So I am on a walking routine, because otherwise with the Foundation work, I could be sitting all day. 

This afternoon I went for a 3.7 mile walk around DC. Along the way I snapped some photos. As you can see Washington Harbor is ready for July 4th!

I saw this pretend pirate ship today. The "Boomerang" leaves from Washington Harbor and takes families on a Potomac River adventure. This would have been right up Mattie's alley. 

The spray ground at Washington Harbor. This was developed after Mattie died, but I know Mattie would have loved it! I took Mattie to two spray grounds in Virginia, and he had a ball.  

I am standing in DC, but across the River is Rosslyn, VA, where Peter works. 

The trees across the river are located on Roosevelt Island. A place we spent a lot of time with Mattie. 

The wildflowers near the Potomac River. 

On Sunday, after the Baptism, Peter and I came home and had to clear our heads. So we literally went out for a five mile walk. We walked over the Key Bridge into Arlington, VA and then walked back over the Roosevelt Bridge to get back into DC. It was a long trek in the heat.

When we crossed over the Key Bridge, this bunny was our welcoming committee. 

This is the view of DC taken while walking over the Key Bridge. 

This is a view of Roosevelt Island's boardwalk taken while we were walking over the Roosevelt Bridge. 

Tuesday, June 28, 2016

Tuesday, June 28, 2016 -- Mattie died 354 weeks ago today.

Tonight's picture was taken in August of 2002. Mattie was four months old and we had just started him on rice cereal. By that point Mattie really needed more sustenance since he was so active! He took to cereal like a duck to water. Mattie's favorite initial foods were the cereal, pureed pears, and baby oatmeal. He couldn't get enough oatmeal. In fact as Mattie got older, he graduated to real oatmeal and ate it practically every morning for breakfast. It was his request and routine! 


Quote of the day: A tree is known by its fruit; a man by his deeds. A good deed is never lost; he who sows courtesy reaps friendship, and he who plants kindness gathers love. ~ St. Basil


For so many, today is just another Tuesday. Yet Tuesdays are not just any day of the week for us. Some of you may notice that at the top of every Tuesday blog posting there is a number in RED. This number notes how many weeks Mattie has been gone from our lives. This is the case because Mattie died on a Tuesday morning at 7:15am. It always amazes me how the world keeps revolving on when your life has been altered so profoundly. You learn to deal with this feeling but there are days when some things just trigger feelings or I should say SET ME OFF.

I find that friends I established prior to Mattie's cancer tend to talk non-stop about children, their children, the ups and downs in their family's lives and so forth. Of course nothing is wrong with that per se, but when you talk to a mom who lost her only child, this conversation can be very one sided. In fact for me it feels more like a therapy session, where I am listening and giving feedback, rather than a friendship in which the dialogue and interests are two ways. I would say there are many things parents who lose a child have to adjust to, and it is not only the sheer and monumental fact that your child died. Every aspect of your life is altered and yet for the most part people neither want to acknowledge it, hear about it, or accept that this is a part of your life and you do need to talk about it. You don't just absorb the loss the first year and things spring back to "normal" or the way they used to be!

To me all of this is a double edged sword, with no one winning because if I should mention how I feel to others, they tend to get upset. Of course on the other end, the alternative is I am upset. So it is one of those days today in which I don't particularly feel like writing, and yet as always I think...... tomorrow is another day and hopefully I will reset myself so I can once again manage the world around me. 

Monday, June 27, 2016

Monday, June 27, 2016

Tonight's picture was taken on July 20, 2002, at Mattie's baptism. After attending Charlotte's baptism yesterday, Peter and I both have Mattie's event on our minds. What you may not be able to tell from this photo was the simple fact that Mattie was in CONSTANT motion. Check out his right hand in the photo flapping around, so much so that the camera can't focus on it. Peter held Mattie for the baptism, which was a good idea, since it took great strength to hold Mattie for long periods of time. Mattie never liked being confined and stimulating environments seemed to trigger off more action and activity on his part.  


Quote of the day: If we will be quiet and ready enough, we shall find compensation in every disappointment. ~ Henry David Thoreau


After the baptism yesterday, Peter and I decided to come home and take a four mile walk. We really needed it to process our thoughts and feelings. It isn't like we are talking throughout the whole walk, but being outside for us is therapeutic in its own right. I feel like I have now become like Mattie. When inside, I feel trapped and confined, but being outside in nature seems freeing and less stressful. 

Thoreau's quote applies to my day. I experienced the disappointment but I have yet to find the compensation that Thoreau referred to. On July 20 and 21st, Mattie Miracle is hosting a strategic planning meeting for our researchers and other key people to discuss the next steps for the Psychosocial Standards project. In specifics, the plan for how we are going to work on getting the Standards implemented at treatment sites around the Country. Which will take years to accomplish!

With researchers coming into town, I have to plan for hotel accommodations, meals, and transportation to get them here. Not to mention the agenda. On Friday, I blocked off rooms at the Key Bridge Marriott. I reserved the rooms but was told to get each researcher's Marriott reward points in order to qualify for a better room rate. So I booked the rooms and then spent the weekend contacting all the researchers for their numbers. Today I called back the hotel to share the numbers with the hotel reservation department and to get the better room rate. I literally was on the phone for an HOUR! Yes an hour, of which 25 minutes they had me ON HOLD! I honestly was livid, especially since between Friday and today, the hotel changed their story. They won't give us a better room rate because the room options I am asking for doesn't have a membership rewards rate attached to it. Despite the fact that I was promised this on Friday! Honestly I felt like screaming today because the information I was given on Friday was misinformation! Yet no one, not even the manager would own up to this mistake or at least acknowledge what I was expressing. I was dealing with attitude and surliness! Two qualities I don't handle well. They should be happy I wasn't there in person! 

To start with today, I called the hotel in Arlington, VA, yet over the course of my various conversations, they bounced me around to different representations across the Country! Can you believe this? One representative even had the nerve to tell me that I should be calling the local number not the national number to get my questions addressed. Are you kidding me????!!! I called the local number, but don't ask me how they moved me around the Country to answer my questions! When I got off the phone I wanted to put my complaint in writing and even that wasn't intuitive on their website. But I did it. I am sure this will go no where, but what I am looking for in all of this was an acknowledgment that they have a training issue problem, since NOT all their representatives share the same information with guests! What happened to the philosophy of...... the customer is always right?! This clearly isn't the case at the Marriott, which deeply disappointments me. 

Sunday, June 26, 2016

Sunday, June 26, 2016

Tonight's picture was taken in July of 2002, at Mattie's baptism.  Mattie was baptized by Father Jim Greenfield. I met Jim when I was in graduate school at the George Washington University. Jim has been a part of milestone moments with me...... he gave me my first clinical client, he gave Peter and I pre-cana so we could marry in the Catholic church, he baptized Mattie, and also presided over Mattie's funeral. What I love about this photo was Jim's finger up in the air, to signal "the first time." Jim let our family and friends know that in all his years baptizing babies, Mattie was the first who did not cry when water was poured over his head. Mattie instead smiled. In so many ways, Mattie was an unusual child. It started from the moment he was born. He was ALWAYS very on, engaged, and some would say demanding. But now that we know Mattie had cancer and then died at the age of 7, I believe that Mattie knew his life on earth was going to be short. Therefore, he had to accomplish a lot in a short period of time. Matthew means "a gift from God," and I do believe Mattie was here to do God's work. 


Quote of the day: Each time the world needs an extra touch of love and gentle caring, God creates Godparents. ~ unknown

This afternoon we headed to a church in Arlington, VA, Our Lady Queen of Peace, to attend the baptism of Charlotte. Charlotte's parents asked Peter and I to serve as Charlotte's Godparents. Certainly we are familiar with this process and are even the Godparents for our niece. But we never had friends ask us to serve this important role. 

I would like to think we had our hand in even naming Charlotte. When Peter and I were visiting St. Thomas in December of 2015, we posted a photo from the capital city of the Island.... Charlotte Amalie. Charlotte's parents loved the name of the town and decided when they had their daughter a few months later, she would be called Charlotte Amalie. 

From left to right are:

Gladys (Charlotte's grandmother), Koseth (Charlotte's mom), Cesar (Charlotte's dad), Vicki and Peter

What I should mention is the entire mass and baptism was in Spanish. This was a true cultural experience for us! Fortunately we are familiar with the nature of the Catholic mass, but honestly even so, things were done differently here. It was far more lively and a ton of music throughout the mass. Much more so than in a typical Catholic mass. 

The priest was a charmer. In his 80's and from Boston. However, he served for years in Bolivia and Peru and speaks Spanish like a native. He has a real following at this church. Peter and I tried to follow along as best we could and of course whether in Spanish or English, the baptism process is the same. 

For a good portion of the mass, Charlotte sat on my lap and between Peter and I, we were entertaining her. We learned from the master.... Mattie! Charlotte is a very well behaved baby and was really engaged with her surroundings. But naturally the experience brought us both back in time when Mattie was a baby, when he was baptized and we thought we had a whole life time ahead with each other. It makes NO SENSE to me why some children are selected to have cancer and die and others lead happy and healthy lives. I think I am completely jaded because unlike other people unaffected by childhood cancer, I no longer look at marriages, having a baby, and other happy childhood events the same way! To me I now look at them with the lens of.... you better enjoy this moment, because you are not guaranteed happiness or good fortune in life despite how hard you work, how "good" you may be, or how you feel you have control over your destiny.