Mattie Miracle 10th Anniversary Walk was an $119,000 success!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

January 19, 2013

Saturday, January 19, 2013

Saturday, January 19, 2013

Tonight's picture was taken in April of 2005. Peter and I took Mattie every April to the US Arboretum. April is azelea season and I always joked with Mattie that the flowers bloomed in honor of his birth month. As you can see Mattie and I were walking hand in hand through the gardens oblivious to the fact that Peter was photographing us.

Quote of the day: Sometimes the heart sees what is invisible to the eye. ~ H. Jackson Brown, Jr.

Peter and I attended a surprise birthday party today. As my faithful readers know, I tend to shy away from parties and crowds now. Most of the time I feel like I do not fit in and I land up feeling more depressed than when I got there. However today was different. It was different because I got to connect with the former assistant director of Mattie's preschool. Dawnee and I talked non-stop for hours about so many things. We had meaningful conversations and truly connected as people. Something I rarely can do these days. As the event continued I got to sit with several preschool mom friends. Women who have had their own ups and downs and we can relate to each other as women first. Not necessarily focused on our roles as moms. Anycase these women made me feel a part of something and I appreciated their friendship. The irony is I feel they enjoyed talking with me and we had the chance to be able to just talk and be ourselves.

Today's conversations go back to my blog posting from last night about truly listening. When I am with people who listen, engage, and are conversationalists, I can become alive again. It is empowering to feel heard, appreciated, and understood. Certainly no one can fully get the devastation Peter and I live with, but I can see in the eyes and words of others who are deeply motivated to try.
 

January 18, 2013

Friday, January 18, 2013

Friday, January 18, 2013

Tonight's picture was taken in May of 2005. Mattie was three years old and on a weekend adventure with us to the DC Aquatic Gardens. You can't tell what we were staring at but in one of the ponds was a beautiful Great Blue Heron and this caught our attention immediately.




Quote of the day: It is astonishing how elements that seem insoluble become soluble when someone listens. How confusions that seem irremediable become relatively clear flowing streams when one is heard. ~ Carl Rogers


My friend Charlie sent me this quote today, and when I read it I LOVED IT! No surprise since I am a big Carl Rogers fan. Rogers was the founder of humanistic psychology in this country and though his theories to some seem flaky and not great for short term therapy, I highly disagree. The cornerstone of any solid and healthy human interaction, whether in a friendship or a professional relationship, is the ability to LISTEN. Hearing what someone is actually saying is a therapeutic gift in and of itself. I am not simply talking about hearing the words! I am talking about reading between the lines and understanding what the feelings, worries, concerns, and fears are between the words. In fact, I can tell immediately who is a good listener by how they respond to an email or text message. In many ways the written word is much easier to interpret at times than the spoke word. The words are staring you right in the face. But the question is which of your friends and family members will read the words and not just take them at face value? Which ones will dig deeper, ask questions, and try to understand in more detail? These are the people in my opinion who are GOOD listeners. A good listener is NOT about having time on your hands. That is an excuse people give for NOT listening. Time doesn't make one a good listener. The motivation must come from within! The joy of understanding what someone is trying to say and the care, interest, and concern you have for another person provides the ultimate drive to listen.

The beauty of talking with someone who gets you makes even the worst of problems seem more bearable. At the end of the day dealing with grief leads me right back to the same place I started. Yet when I talk with people who really listen to what I am saying, I do feel better. I deeply appreciate those who listen to me and I do try to live my life following Carl Rogers' basic yet human principles.

This afternoon, I had the opportunity to have lunch with my friend and colleague Denise, and her daughter Marisa. Marisa is the young lady who runs our Foundation bake sale every May at our Foundation Walks. Marisa is a senior in college and I was happy I could see her before she returns for her last semester. Marisa had some wonderful ideas for me to consider for this year's Walk and I appreciate all her efforts she made to help us while Mattie was alive and now certainly her thoughtfulness in his memory.  

January 17, 2013

Thursday, January 17, 2013

Thursday, January 17, 2013

Tonight's picture was taken in March of 2005. I entitled this photo.... "have power tools, will travel!" Mattie gravitated to building and creating at a young age. He enjoyed going to Home Depot with Peter and when someone sent him these play Home Depot tools, Mattie LOVED it! It was soon after this that our neighbor gave Mattie a real tool chest with actual tools in it. I still have it and with supervision Mattie could manipulate all these tools.







Quote of the day: Cats are magical. . .the more you pet them the longer you both live. ~ Unknown


As I implied in last night's blog posting, my friend Tina and I have been working on a project. The project was hosting a surprise luncheon for our friend Ann. Today was a milestone birthday for Ann and I have been brain storming this party for months. Though Ann did not want a party, I just felt that given it was a significant birthday, a gathering with friends was important. I also knew that I wouldn't be happy with myself if I let this day go by without acknowledging her. As many of my faithful blog readers know, Ann coordinated Team Mattie when Mattie was battling cancer. If we or Mattie had a need, she found a way for it to be met and filled. Over time, through Mattie's battle our friendship grew. Ann became the person who sat with us through Mattie's scans, as we awaited Mattie's scan results, and a list of so many other countless things. When Mattie died, her obligation to us as Team Mattie's coordinator clearly ceased, but that did not stop her involvement in my life in particular. For a year after Mattie's death, I practically lived at Ann's house. Her friendship came at a significant time in my life and therefore as I told her today, there was no way I could let the day pass without doing something special. 

In the past couple of months, I have reached out to Ann's relatives and friends and with their help I was able to create over 10 collage type posters of Ann's life, I developed a fun fact list about Ann, and also designed a memory book which captured reflections from key people in her life. Needless to say this was a labor of love and one that I wanted to surprise her with. I want to share some photos with you of today's party.



Some ladies were unable to make it because of illness, but we were a solid group of 19!

Tina, Ann, and Vicki!

Ann is a Dunkin Donuts fanatic. So Tina designed this special display for Ann.

Like me, Tina loves flowers and is very gifted with putting them together. I selected Ann's color theme.... gold, silver, and green (her favorite color). Tina and I discussed flowers and I told her that Ann loves lilies, hydrangeas, and roses. So voila, Tina hand picked amazing flowers at a wholesaler and last night, I helped her create these stunning pieces.

Over the past couple of days, Tina and I transformed her house for the party. Tina was very gracious and generous to give me access to her home and I appreciate her efforts and level of support to make today happen. Together we designed the tables, the centerpieces, and Tina convinced me to use real china and silver. So literally I brought my china that I received from my wedding to Tina's house and I used my grandmother's sterling silver. In fact, I do not think I ever used this silver set in my entire married life! I always thought I would save it for the right occasion. I remember as a child that my grandmother served all holiday dinners with this silverware. So she would have been happy to see her silver in use today.
 
 

Tina and I designed three large table center pieces, and as you can see we staged the buffet table before guests arrived. We gave great thought to the food too and Tina came with me as we met with the caterer in person and talked through food. We are both foodies, so talking food is right up our alley. We picked all food with Ann's preferences in mind!

Instead of a guest book, we captured the occasion on a Pewter Platter. This platter came with an etching pen, and literally each guest etched their name onto the tray. It was a real beauty, that had an engraved inscription on it with our wish for Ann.

There was a lot going on with this cake. However its title was "chocolate dream" and it lived up to its name!



Tina designed an impressive bouquet for her fireplace and to it I added a FUN Fact list Poster I designed for Ann.
At the party were several preschool moms who I knew quite well. With one, we shared cancer stories and I landed up crying. There is something about parties that set me off. Especially when people want to know whether I want to have other children. It is a hard topic to answer especially when surrounded by a group of moms, moms who haven't experienced the death of a child. I am always the outlier. After the party was over, I helped Tina clean up and we debriefed about the party. Tina's parents arrived today from out of town and when Tina's mom saw what we did to the house, she was thoroughly impressed. Her comments, feedback, and insights made me feel good, proud, and happy. I could picture my mom saying the same comments. Moms have a way of calling a spade a spade, and telling the truth. As Tina's mom said to me..... "the attention is in the detail, and clearly we thought of everything." A comment that will stay with me forever.  
 
 

January 16, 2013

Wednesday, January 16, 2013

Wednesday, January 16, 2013


Tonight's picture was taken in October of 2004. Peter and I took Mattie to a fall festival and apparently he snapped a photo of us while we were walking and checking things out. This whole scene caught my attention tonight. When I see moms holding their children's hands, it instantaneously brings me back to the times I used to hold Mattie's hands. Things you take for granted until you no longer have them. It is a hard reality to accept and I long for a moment to recapture that feeling again.




Quote of the day: There is something about the presence of a cat...that seems to take the bite out of being alone. ~ Louis Camuti


For weeks now my friend Tina and I have been brainstorming and working on a project. I will reveal the project tomorrow. It has absolutely nothing to do with cancer or the Foundation. This is more of a personal project. In any case, for us it has been an intense week of preparation. Tina and I are both detail oriented and we like to be creative. So putting us together results in a product that is something quite special and beautiful. Or at least this is our intention! I hope to share some pictures with you tomorrow.

Patches continues to hold her own but her illness and being up throughout the night are wearing on both of us. Somehow the stress of Patches being diagnosed with cancer, and not any kind of cancer, bone cancer, has been a real set back for us this January. I look at other people my age and somehow their lives seem SO full. They live in communities with other families, they are caring for their children, involved in their upbringing and school activities, and the list goes on. Yet for Peter and I, we have been dropped into a lifestyle that is typical for people 20 years older than us. I am not sure how we can come to grips with this, but one thing I am quite sure of, and that is it takes a lot of energy to remain focused on not being bitter, jealous, and resentful of others who have what we lost.

January 15, 2013

Tuesday, January 15, 2013

 
Tuesday, January 15, 2013 -- Mattie died 175 weeks ago today.

Tonight's picture was taken in January of 2005. Mattie was almost three years old. By that point, Mattie LOVED baths. I am not sure that he loved the idea of getting clean or the simple joy of playing in the water. Literally with each bath Mattie chose different toys to bring along with him to play with. Usually cars, trucks, rubber animals, and so forth. There was nothing boring about bath time. Mattie went from a toddler who hated water to a preschooler who did not want to get out of the tub even when it was drained of water.


Quote of the day: If animals could speak, the dog would be a blundering outspoken fellow; but the cat would have the rare grace of never saying a word too much. ~ Mark Twain


What a night of sleep or lack there of!!! Patches started howling at 3am and at 4am, she was out of control. A family friend of Peter's wrote to us last night after reading the blog and recommended nightlights throughout our home for Patches. By 4:30am, we had lots of lights on! Tonight we are starting with the lights on and we will see where this gets us. Something has got to give here because it is like living with a newborn. Except we know our furry friend is dying.

I accomplished several chores this morning and though I wasn't planning this I went to visit my friend Mary in her assisted living facility for an hour or so. Mary hasn't been feeling well at all, she is congested and has a cough like SO many people all around us. While visiting with Mary and her caregiver, I had the opportunity to watch her nurse come in and try to administer an antibiotic to her. Since Mary has trouble swallowing, the antibiotic gets crushed up and given to her in apple sauce. It was painful to watch Mary try to ingest this concoction. After about 15 minutes, Mary refused to swallow it and eventually spit it right out of her mouth. Because I know Mary's likes and dislikes, I know she doesn't like applesauce even on a good day. So combining a pill with applesauce is an absolute "no-no" in my world. I love food and eating, and so does Mary. So I happened to acknowledge Mary's feelings and told her if I were her, I would have done the exact same thing. So I asked Mary's caregiver if the nursing staff ever used pudding, specifically chocolate pudding. She said that they will if it is available but it isn't always available. Interesting! Seems like a no brainer for medication administration! Chocolate camouflages LOTS of flavors! Any case, I text messaged Ann and suggested she bring in chocolate pudding this evening for her mom's next antibiotic administration. Sure enough Ann let me know that the pill went right down with chocolate pudding. That news made me very happy! It actually made my day, because I suspected it wasn't that Mary couldn't swallow the medication, she just did not like how it tasted and it made her gag. I relate to my 80+ year old friend all TOO well.

This afternoon, I had the opportunity to have lunch with one of my chapel buddies from Mattie's school. When Mattie was in kindergarten I attended chapel with him each Tuesday. The children sat with their classmates and the parents sat with each other. I always sat between Junko and Luda. Though I no longer attend Mattie's school, my chapel buddies are still part of my life and they are very generous with our Foundation. Luda does all the professional signs and banners for our Foundation Walks each year and she is helping me now with a project for our upcoming psychosocial think tank in February. I appreciate this kindness and this desire to support us on achieving our mission. It is hard to believe however that Mattie is gone and yet all the children I once knew are still growing and developing. At times I feel like I live in an alternate universe. A universe where I need to function around other moms, absorb their content, their highs and lows, and yet knowing I am not one of them.
 
This is tonight's photo of Patches. Typically I wouldn't allow her on the table but she wants to sit very close to Peter. As you can see if she could sit on his arm, she would have! A lot of heavy purring was going on here and Peter brings her happiness. If you look closely you will see her right eye is smaller than the left. It is getting swollen shut from the tumor in her face.


 

January 14, 2013

Monday, January 14, 2013

Monday, January 14, 2013


Tonight's picture was taken in January of 2005. Mattie was almost three years old and FULL of energy. Mattie
loved staying close to me and if I was working in the kitchen, he wanted to be there too. That particular day, I picked him up and put him on one of my counters so we could work together. It is hard not to have this wonderful helper around on a day to day basis.



Quote of the day: When your cat rubs the side of its face along your leg, it's affectionately marking you with its scent, identifying you as its private property, saying, in effect, 'You belong to me.' ~ Susan McDonough


When I brought Patches to the vet last week, they weighed her. She was a shocking 7 pounds. It is hard to see Patches shrinking before our eyes. Patches spends most of her daytime hours now napping. She is still up throughout the night, some things don't change. However, her howling is more intense and sounds like the crying of a baby. Peter noticed that the pain medication was making her sick to her stomach and therefore couldn't hold down anything she was eating. So we are trying to figure out that balance so she is comfortable. If she can eat, respond to us, and seems to be comfortable then from my perspective it isn't time to put her to sleep yet.

I have noticed after Mattie died that there are times during the year when I just get very tired. Perhaps the tiredness results from projects I take on, and then the accumulative effect occurs, and I get worn down tremendously. But I have noticed I am hitting one of those brick walls now. I am currently involved in multiple projects and the stress associated with them weighs on me. However, I think it is more than just the physical projects that wear me out. They all have an emotional component to them, and somehow post-cancer, it is much harder for me to manage and cope with various tasks. Mattie had the cancer, but his disease impacted both Peter and I in so many ways.



This photo was taken of Patches tonight. It may not seem unusual to you, but to me Patches' face looks sullen, she looks very thin, and doesn't have the life and sparkle she once did. Nonetheless despite her physical condition, she stays close to us and is a beautiful cat.



 

January 13, 2013

Sunday, January 13, 2013

Sunday, January 13, 2013


Tonight's picture was taken in May of 2006. It was memorial day weekend and we took Mattie to Sesame Street Place in Pennsylvania. On our way up to Pennsylvania we stopped at a fantastic aquarium in New Jersey. You can see Philadelphia across the river and to me this made a beautiful backdrop for a photo. It was an exciting weekend for Mattie and therefore for us.


Quote of the day: I take care of my flowers and my cats. And enjoy food. And that's living. ~ Ursula Andress

Weekends for Peter and I are quite different now without Mattie's presence in our lives. When Mattie was alive, Peter would get up early on the weekends to do all sorts of activities with Mattie. It was their "boy" time. They would do all sorts of things that varied from taking a row boat on the Potomac River, to fishing, or buying materials at Home Depot and building something. They were always up to something. On some level I knew this, which is why weekends are particularly challenging for Peter. However, last night as we went out to dinner with another couple who also lost their only child to cancer, I got to hear similar comments from this dad about weekends. What he was saying was exactly what Peter had been referring to these past three years. Some how hearing it in unison made an even bigger impression on me. How I grieve and how Peter grieve is different. We concluded this early on after Mattie's death, and we accepted it, rather than getting angry and frustrated with each other. Peter works full time and being in an environment where he has to pretend that it is business as usual is beyond difficult. I can try to relate, but I don't walk in his shoes. Last night, sharing similar viewpoints, stressors, and grieving reactions with a fellow dad, I believe was very helpful for Peter. It was helpful for me to hear it as well. Sometimes talking about Mattie between Peter and I isn't easy. It can quickly bring us both down, and when we get into a funk it is hard to pull out of it. Yet despite talking about sensitive thoughts and feelings last night, it was helpful knowing we weren't alone in our experiences and reactions.

Peter and I live very different lives by day. I am not implying that one is better or easier than the other, they are just different! Peter works outside our home, has great responsibilities, and contributes to a company which has measurable outcomes. Whereas, I work from home. I have no staff and if something is going to get done, I have to do it myself. At various points throughout the year, I live and breathe Mattie Miracle, and I know that if I stop working, the Foundation's activities and productivity will cease. That provides a certain amount of pressure because in my mind the Foundation is equal to Mattie. That may sound silly, but to those of us who run Foundation's in memory of our children, these Foundations become vehicles to channel our energy from the grief over our child's death, to creating a legacy in our child's name. As we joked last night, the things the four of us have seen and experienced would be enough to kill the average person. We are not sure how we make it day to day, the verdict is still out on this.

I would like to end tonight's posting with a wonderful article my friend Charlie sent me. As counselors, both Charlie and I loved this simple and yet very meaningful acronym ("LOVE") to help guide effective communication. A solid, meaningful, and long lasting relationship with a loved one or friend can only be achieved with good communication! This art form is hard, and in our busy world, it is rarely done effectively which is why there can be great misunderstandings between people. Some misunderstandings can lead to the severing of a relationship. In some ways the "obstacles to listening" are just as important as the four steps to great listening. No matter how good a listener we all are, there is always room for improvement and I have learned that when you listen, validate what someone else is saying, and also empathize with someone else by stepping into their world to try to understand the reasoning for what is being stated, that the connection between two people deepens.

4 Steps to Great Listening

The secret to amazing relationships by Benjamin Rapaport

 
We all want amazing relationships. Every week a bestseller comes out with the latest recipe for how to have them. Let’s consider the faculty of hearing. Every word that is spoken is heard one by one. It is only in the mind of the listener that the words come together and combine into a meaningful whole. This physical reality reflects a spiritual truth: It is through really listening that discrete, separate entities come together and form a greater whole. How we hear determines the quality of our relationships. To experience deep connection we need to develop our listening abilities. Here are four fantastic tips to help us hear better and take our relationships to new levels:
 
1) Listen with your eyes. Look at the other person when they are speaking. 93% of our communication lies beyond the actual words that are said, according to a study by UCLA. 38% is related to voice quality, things like tone and inflection, and 55% is related to non-verbal communication, the physiology we talk with. This means that the way we physically communicate is nearly eight times more impactful than the actual words that are said (at 7%). We’ve all had the experience of talking with someone and they are looking past us or checking their phone. We may have also experienced how wonderful it feels when the person we are with is really listening to us, and really sees us. Next time someone is speaking to us, let us tell them with our eyes that what they have to say matters to us, and even more importantly, that they matter to us.
 
2) Ask open questions. An open question is the type of question that invites the other person to tell their story, to respond with something more than just a yes or a no. These questions often begin with words like “what” or “how” and create a space for an answer that will take longer to listen to. They communicate: I am interested in knowing you more deeply, in connecting with you. Closed questions such as, “Did you like it?” Or, “Was your meeting good?” limit the feedback. They close us in to a short response. Often this all the questioner wants and we respond in kind. When we give others the room necessary to share their story it encourages them to go further with us, to experience a more profound connection in the relationship. It is remarkable how powerful this can be in building better rapport.
 
3) Validate: Even when we disagree with something that has been said, we can express this in a way that is respectful of the other person and their intelligence. Expressing our criticism in a way that validates the value of the other person makes all the difference.
 
4) Empathic listening. Try to get behind the eyeballs of the other and strive to understand what they are thinking and feeling. Ask yourself, what brought them to their position? Who is this person? Where are they from? What have they experienced in life? So often, we think we know what others mean without really having the big picture. So many misunderstandings can be avoided when we sincerely reflect on where others are coming from and consider more fully their point of view.
 
An easy way to remember these four tips is to listen with LOVE:
 
L – Look (at the person you are speaking with)
O – Open (ask open questions)
V – Validate (the person you are speaking with)
E – Empathic (try to see from their eyes)
 
Four Obstacles to Listening
In order to really raise the bar in our relationships, we also need to understand the four foes of listening and how to overcome them. They are:
  1. Too busy to listen. Life is busier than ever and we are multitasking like never before. There are emails to answer, meetings to make, and deadlines to reach. As a result, anything that does not seem so urgent takes a backseat. Sadly, listening in a meaningful way to the people in our lives usually falls into that category. The problem with this pattern is that not listening usually translates into not understanding. Over time this ends up costing far more at work and at home, in terms of both time and often money, than if we had invested the time up front in better listening. So, be a smart investor and invest in better listening up front. The dividends will surpass your expectations.
  2. Jumping to conclusions. It is natural to jump to conclusions about what others mean or want without really understanding. This can often send us, with the best of intentions, in the wrong direction. As a general rule, it is helpful to ask for clarification whenever there is room for confusion. This small step can take us far in improving our interpersonal effectiveness.
  3. Not aware. We often undervalue the difference that we are capable of making with good listening. When we consider our own experience of what it feels like to be heard and seen, or not heard and seen, we can appreciate how meaningful our hearing and seeing can be to others. This awareness awakens us to uplift others with the way we are present as they speak.
  4. Rehearsing our lines. How often have we rehearsed in our minds what we were going to say next as the other person was speaking? Maimonides taught that it is impossible to hold two thoughts in our mind simultaneously. As a result, when we are rehearsing our lines we are going to miss partly or completely what the other person is saying. The realization that our response will be far more to the point when we understand what has been said, helps us to tune in better. A notable benefit of doing this is that others are much more interested in what we have to say, once they feel that they have been heard.
Great listening lies at the heart of connection. When we hear more fully, with our eyes, ears, and words, this communicates how much we care and opens a channel for deep bonding to occur. Make a commitment to listen with LOVE and enjoy better relationships today.

Saturday, January 12, 2013

Saturday, January 12, 2013


Tonight's picture was taken in June of 2003 on our weekend nature trip to Great Falls, VA. This was one of Mattie's favorite forms of transportation. Mattie strongly disliked his stroller and though he was over one year old, he wasn't walking at that point. When we got this back pack, it changed our lives immensely. Mattie loved the height and the bouncing around on Peter's back!


Quote of the day: Who can believe that there is no soul behind those luminous eyes! ~ Theophile Gautier


Peter and I went for a walk today. We went to Potomac Overlook Park. I had no recollection of being to this park before, despite Peter telling me that I had. As we kept on walking, we passed several gardens and then instantly I remembered coming to these gardens with Mattie. After walking at that park, we then drove to Windy Run park, where this picture was taken. This walk was quite rocky and hilly but provided a wonderful view of the Potomac River. While on our walking journey, we passed a family who had their son in a backpack, not unlike the picture above with Mattie on Peter's back. It brought back memories to me!

Patches is having a rough time. She can't hold down any food today without throwing it back up. We are watching her closely, but it is clear to us that she isn't happy or feeling well. So unfortunately we have big decisions to make soon about her life.
This evening Peter and I had the opportunity to go out to dinner with a couple we met a two years ago at a cancer event. This couple lost their 7 year old son to cancer in 2010. We share that in common, but we also share the fact that our sons were our only children. It is rare to find a couple who lost an only child to cancer. When we met at other events prior to tonight, we seemed to connect, and in fact the father in this couple served on our parent panel during the Mattie Miracle Cancer Foundation Psychosocial Symposium in March of 2012.
 
We had over a four hour dinner tonight and in many ways it was like having our own support group meeting. In so many ways, looking and listening to this couple is like looking and listening to Peter and I. I know sometimes people I come across view Peter and I as having issues, that we are unable to move on, and that we have a problem! However, the reality is this is NOT true! When you interact with other parents who have lost a child to cancer, you will see that Peter and I are NOT unique. We survived things, horrific things that can't be erased, nor can they be brushed aside. They are within us, and no matter how much someone wants us to move on, it isn't going to happen. It can't happen, and it can't happen because our lives have been permanently altered. I suspect until you survive months of harrowing cancer treatment, watch your child in excruciating pain, see your child flat line, and die being unable to breath, you will never get us 100%. Thankfully of course!!! I am thankful for all of you who have healthy children, but at the same time, it pains me that I can no longer live your life.
 
Talking to this couple tonight was not only validating but normalizing. Peter and this dad have a lot in common and I am so glad they can emote these feelings with one another. It is rare to find men who can do this, much less a man who can handle talking about the death of his child! I sometimes feel like no one can understand why it is hard for me to be around other moms. When you put a group of moms together, the natural thing for them to talk about is their children. However, at times it is hard to hear about other children, when we know we are no longer moms. One comment stuck with me tonight. This mom said to me that people can see us smiling and therefore think we are fine. But what they don't understand is we are still thinking about our children always. We see our children in everything we experience and do, and we carry this memory and loss with us in every interaction during every hour and minute of the day. 
 
What tonight's dinner illustrated to me is that we are not alone. Other parents who lost a child to cancer feel, think, and experience the world and those around us in similar ways. I would say the analogy of what this feels like is equivalent to visiting a foreign country where NO one speaks your language. Then by happenstance you run into a fellow American, a person who gets everything you are saying! That was what dinner was like tonight.... we were understood!