Saturday, February 2, 2013

Saturday, February 2, 2013

Tonight's picture was taken in January of 2003. This is one of my FAVORITE photos!!! Our commons area was the perfect flat surface for Mattie to run around with his "tot wheels" as well as where he learned to ride a bicycle. In addition, at the end of Mattie's life, he spent some time outside riding "speedy red," (his ride on vehicle). Mattie loved all wheeled vehicles and we had the short pleasure of watching him grow and evolve in our big outdoor area.


Quote of the day: A man who thinks he can live without other people is wrong, and a man who thinks others cannot live without him is even more wrong.

 

It was a grey, frigid, and depressing weather  day. Peter took this wonderful photo of some of our plants today. Some how this looks very tropical to me. MANY of our outdoor plants are inside with us over the winter. All this greenery takes up a lot of our living space, but on a grey day, it can lift our spirits.

 

When it is extremely cold, our resident sparrows come to visit. The feeder was FILLED today!

 

Peter captured the snow tonight falling against our outdoor lights. These lights are a tribute to Mattie and they shine brightly over the winter months.

 

I love Canadian Geese. I appreciate their teamwork, how they stick together regardless of the circumstances, and I admire how even on the coldest of days they are out there in groups finding food. As we were driving home today, I snapped a picture of this wonderful sight on the Washington Mall.  

Friday, February 1, 2013

Friday, February 1, 2013

Tonight's picture was taken in February of 2003. As you can see Mattie was in his good old reliable..... Tot Wheels. What I tried to capture was Mattie on a tear through the first floor of our home! He couldn't walk independently yet but WOW could those legs propel him on wheels!!!



Quote of the day: The true measure of a man is how he treats someone who can do him absolutely no good. ~ Samuel Johnson


I debated for days whether to see a neurologist or an orthopedist for the numbness in my leg. I selected my orthopedist and I made the right decision. I had several xrays taken, a neurological test performed, and naturally an examination. We determined that I twisted my vertebrae in a funny way while setting up for a party two weeks ago. This sharp twist impacted a nerve that runs from my knee down to my foot. I can handle the pain much better knowing that there is a logical explanation for it. I was given medication to manage nerve pain and four weeks of physical therapy 3 times a week! That should be a pip to fit into my schedule especially since I am headed to California soon. I will have to begin this when I return. Going to Virginia Hospital Center however is like returning to the scene of the crime. It was at this Hospital that Mattie was born, diagnosed with Osteosarcoma, and last year where my ct scan revealed questionable masses. It is funny how one place can bring life's greatest joy and life's greatest pain!

After seeing the doctor, I then ventured to Georgetown University Hospital. Believe it or not, I had four more bags of candy people recently donated to the Foundation that I wanted to drop off for the snack cart. Once my drop off was done, I was sitting in my car returning messages when out of the corner of my eye, someone approached my driver's side window. When I looked up, it was Jey. Jey was Mattie's x-ray technician. Jey considered Mattie his "little brother." Jey worked beautifully with Mattie and came to visit him practically daily when Mattie was living in the hospital. Which was OFTEN! When Mattie died, Jey came to Mattie's hospital room and insisted that he had to personally take Mattie's body to the hospital morgue. He reminded everyone that day that "this was my little brother." Jey and I hugged today and we got a chance to catch up. However, Mattie's death impacted Jey too, for Jey is no longer an x-ray tech. He now works hospital security. We shall never forget Jey or the way he looked out for Mattie and us at the hospital. Some people are irreplaceable and unforgettable.

Later this afternoon, I picked up my friend's son from school for her. Out of instinct, I always arrive early. I never like keeping a child waiting. So as I got there I was able to park and watch the kindergarten students outside playing. As school was coming to a close for the day, the teacher led the class back inside for dismissal. However, every student had to pass my car to get back into the building. As they passed my car, I smiled at them. Not only did I get smiles back, but many of them waved at me. A couple even came up to the car because they were intrigued by a flower Mattie made for me that hangs on my rear view mirror. Any case, it was a very precious moment and it reminded me of the days Mattie was in kindergarten. It is hard to believe at that innocent age, Mattie was diagnosed with cancer.

Thursday, January 31, 2013

Thursday, January 31, 2013                     Tonight's picture was taken in February of 2003. Mattie was 10 months old and one of the things that could calm him down instantly and stop him from moving about was a bottle. A glazed look would come over him when having a bottle. It was a feeling of ecstasy I will never forget.

 

Quote of the day: Friendship is a plant which must be often watered. ~ Anonymous

My friend Charlie sent me today's quote. As I told her this sentiment is VERY true. Any quality relationship must be "watered." Not unlike a plant..... bonds between people do not grow, get enriched, and become stronger without nurturing. It is unfortunate in our busy world that sometimes TIME is used as an excuse for the lack of "watering" and investment we make in each other. Once a plant loses its water, it dies. It can't be resurrected, and in a way so it is true about the connections between people. May we all find the "water" necessary in our lives to keep those we care about nurtured and connected to us not only physically but emotionally.

I started my day off by going to zumba. This somehow always brightens my day. Though my heart and left leg weren't into it today, it did perk up my spirits. Since Mattie has died, I feel like I am one big physical ailment. I wish I could say some of my pains are psychosomatic, but my issues are always legitimate.

For the past two weeks I have been dealing with numbness in both arms and my left leg. I have had the arm numbness before in my life. That occurred when I gave birth to Mattie, I was diagnosed with carpal tunnel syndrome. It wasn't from my over use of my arm, it was because of all the fluids I retained which put pressure on my nerves. Most women look somewhat normal after child birth, or at least within a month or two. For me, my swelling lasted for six months. In fact, the running joke was most people thought I was still pregnant when Mattie was six months old. Of course that wasn't too funny to me at the time! But with all of that, I have never had leg numbness. I figured my current pains were a muscle or nerve issue and it would go away, but it hasn't. So tomorrow I am seeing my orthopedist. Post-Mattie's cancer, I literally have a doctor for each day of the week. This is the magnitude of the after math of such a traumatic death.

I had the pleasure of meeting my friend Margaret today. Margaret was Mattie's preschool teacher and in 2005, became an integral part of all our lives. As I told Margaret today, the littlest physical issues now cause my mind to leap to cancer. It takes a great deal of rationalization to understand that every pain I have does mean I have cancer or am dying. I view this disturbed view of the world as a direct result of Mattie's cancer battle and death. I do not live a normal life like other people, for me the fuzz is off the peach. I have been hesitant to go to the doctor because frankly I am just tired of having SO many of them in my life. But not knowing what this is, is also stress producing. So tomorrow morning I head to Virginia Hospital Center to find out what is going on.

Wednesday, January 30, 2013

yWednesday, January 30, 2013

Tonight's picture was taken in February of 2003. Mattie was all dressed up to go to a birthday party. The little girl in question was having a tea party and the kids could get dressed up for the event if they wanted to. I can't quite say that Mattie loved the tea party, but he got into the spirit of it all and certainly looked like a little gentleman.









Quote of the day: We are never so defenseless against suffering as when we love. ~ Sigmund Freud


I had the wonderful opportunity to meet with my friend Carolyn today. Carolyn coordinates our Foundation's Raffle during our annual Walks. This year will be her fourth year with us. What I admire about Carolyn is she works full-time, raises her children, and yet despite being pulled in many directions, she feels compelled to volunteer with us. This is her choice and I am honored by her dedication and commitment to our mission and to Mattie's memory. We had a very productive brainstorming lunch and what Carolyn doesn't know is that prior to meeting her I had an ocular migraine. An ocular migraine is actually quite frightening, because it affects your vision for a good 20 minutes. Thankfully it passed and talking with Carolyn helped. I have a core group of amazing women who help me with the annual walk. I am not sure these women know how much I value them, because in so many ways they share the stress with me. Sharing someone's stress is a great gift of friendship. With this core group of women, I can email them a walk question, and I get immediate and insightful responses. I not only appreciate their friendship, but what it also tells me is that they want to actively keep Mattie's memory and legacy alive. This matters to them.  

I am happy to report that Peter is feeling much better! This evening, when he got home from work, he was greeted by Patches. Patches desperately wanted to go outside onto our deck. We are having 60 degree weather in January, which of course is very unusual. But Patches loved it and hopped right onto our patio table! As you can see our Christmas lights are still up. Peter puts these lights up the day after Thanksgiving, a tradition he used to do with Mattie. We keep these lights up until the spring time. These lights remind us of Mattie and brightens up a very depressing and gray time of year. Our deck looks like such a mess now and barren in the winter months, and in some respects it is amazing how we transform it in the spring. I end tonight's posting with a message from my mom about "nurse Patches!"

A Cat for All Seasons by Virginia R. Sardi

I'm in awe of the devotion that "Nurse Patches" shows to both of you when you are not feeling well. The pictures of her by Peter's side as he recovers from the norovirus are precious and reveal that she has an almost human like attachment to her family and that her presence there is meant to give him all the feline comfort she can from her little but generous heart! She has proven herself to be a cat "for all seasons!"

Tuesday, January 29, 2013

Tuesday, January 29, 2013 -- Mattie died 177 weeks ago today.

Tonight's picture was taken in February of 2003. Mattie was 10 months old and we were trying to encourage him to stand and support himself. This was not one of Mattie's favorite positions. In order to give him a standing incentive, my parents got Mattie this music table. Mattie loved music and he was clever enough to find a way to play with the keys and the table without having to stand!


Quote of the day: Greatness is not measured by what a man or woman accomplishes, but by the opposition he or she has overcome to reach his goals. ~ Dorothy Height


Somehow I haven't left our home since Saturday. I have lost track of the days and the hours at the same time. Peter is fortunately on the mend now. He was home today, but had the stamina to work and to eat a few things. So this is a massive improvement. I was busy working on Foundation things. I store all of the Foundation's merchandise in Mattie's room, and today I was pulling out bins of things. In February the Foundation is hosting a psychosocial think tank at the American Psychosocial Oncology Society conference. In addition to getting folders, materials, name tags, and handouts ready for that event, the Association is also giving Mattie Miracle a free exhibit hall table. This is very exciting for us since we have never exhibited before at a professional conference. So I have been strategizing what will be displayed at this table and what kinds of give aways will attendees get from us. I remember my conference days as a mental health professional and I always loved receiving two things..... chocolates and pens. So needless to say both will be available at the Mattie Miracle table!!!

This evening, I went to the George Washington University and gave a guest lecture at a "Children and Loss" graduate counseling class. My last lecture I gave at a University was on trauma and childhood cancer. So tonight's PowerPoint presentation needed to be tweaked accordingly. I haven't taught on GW's campus in years, since the spring of 2008 to be precise. Yet coming into the library (where the classroom was) reminded me of my days researching on campus for my dissertation. Some things don't change! I lectured for about two hours tonight, and when I talk about Mattie and our experiences, I can talk for days! However, my talks integrate research, personal experience, and candor. I have a feeling that is what makes the presentations so intriguing, because I am not talking in theory. At the end of the evening one of the students raised her hand to thank me for being so open and honest. I have learned over the years (as I told her) as an educator (especially a counselor educator) that modeling openness, honesty, and vulnerability inspires students to do the same. I also believe that it is through vulnerability that great learning can take place. Especially emotionally.

In one of my slides tonight, I discussed how the research indicates that children know they are dying, whether their parents tell them or confront the issue. Almost as if children have a sixth sense. I shared a story with the class that caught their attention and illustrated this point. Mattie knew he was dying before I did. In the last several months of Mattie's treatment, he saw a psychiatrist at the hospital on a weekly basis. Mattie related to this therapist, maybe because the therapist was a man, whose name happened to be Matthew. Any case, each time Mattie went for therapy, he played with the therapist's doll house. Of course Mattie retitled the doll house...... "a haunted house." Each week Mattie played with the house and in his play scheme was ALWAYS stick figures of himself, Brandon and Jocelyn. These were Mattie's friends at Georgetown who were battling cancer. Mattie, Brandon, and Jocelyn were always allowed into the haunted house, but the "healthy" kids were not allowed in. They didn't belong! This play scheme went on for weeks, until one week Mattie's psychiatrist pulled me aside. That week, Mattie played with the haunted house, except, ONLY Mattie was allowed inside the house. Brandon and Jocelyn were not allowed entry. Mattie told the therapist that his friends were no longer allowed in because they weren't part of his world. What Mattie was telling us is his friends who battled cancer weren't dying like him. Mattie always amazed me, and through his play therapy scenarios such vividness of emotion and thought were reflected. This story still sends chills up my spine and I think I do a better job of recounting it verbally than in writing. Needless to say, as is typical with me, I always feel more energized after teaching.  


Back on the home front, Patches was absolutely thrilled that her buddy has been around 24 hours a day for the past several days. Prior to Patches cancer diagnosis, she knew she was NOT allowed up on our dining room table. But given her condition, I have let a lot slide. You may notice that the right side of her face is swollen with a tumor and that she can hardly open that eye.

 

Peter thought he was going to have peace at the table and work. Patches had other ideas!

 

If Patches could sit in Peter's lap today she would have. She desperately wanted his attention and loves to curl up next to his computer, which gives off heat!
 

Monday, January 28, 2013

Monday, January 28, 2013

Tonight's picture was taken in February of 2003. Like last night's photo, this one also captured Mattie's curiosity. Mattie was a late walker, but in his "tot wheels" there was nothing he couldn't do. Literally he would fly around our first floor in this thing and had no problem manipulating corners. Any case, in this photo, Mattie was exploring my side board and was fascinated by one of the doors. When Mattie got older and could walk, he literally would open up a side door and try to sit inside. He thought it was a cozy hide out!

Quote of the day: Hope is always available to us. When we feel defeated, we need only take a deep breath and say, “Yes,” and hope will reappear. ~ Monroe Forester

None of us slept well last night. Between Peter and Patches, we were up on the hour. So it was another intense night, which leads to great fatigue. Based on my logical conclusion that Peter is dealing with Norovirus (naturally without a fecal sample, I can't say this for certain), I have turned to three things to help our situation...... Clorox, Lysol, and washing everything in hot soapy water. Yesterday I was so desperate, I opened up the windows to let cold air throughout our home. I learned that trick when Mattie was younger, because some how the cold air seems to kill whatever is floating about. Not sure it works, but I figured it couldn't hurt. My goal is to get Peter better and not catch whatever he has at the same time.    

I ran into one of my neighbors today while doing laundry. He could tell that I looked frazzled and asked what was going on. When I told him, he asked me whether I read the article in the Washington Post about the Norovirus outbreak? I said I hadn't, but that I am getting a first hand look into life with the Norovirus. This is a virus we usually hear about in the news as shutting down cruise ships. I can see why! Any case, my neighbor was telling me that he has been feeling queasy and is worried he is getting sick. For the past two days I am washing my hands religiously. Since I am not sure where this virus has come from, my motivation is to stay healthy. Both of us can't be down for the count.

As always "nurse Patches" does not disappoint. Here she is today right along side Peter on the couch! I wish she slept like this at NIGHT!!!


 

Sunday, January 27, 2013

Sunday, January 27, 2013

Tonight's picture was taken in February of 2003. What I love about this photo was I caught Mattie in action. He loved running around our home in his "tot wheels" and that particular day Mattie spied a drawer where I keep silverware. So he walked himself over and literally started pulling at the drawer until it opened as he could explore the contents inside.


Quote of the day: People say that what we're all seeking is a meaning for life. I think that what we're seeking is an experience of being alive, so that our life experiences will have resonances with our own innermost being, so that we actually feel the rapture of being alive. ~ Joseph Campbell


It has been quite a wild 24 hours for us. At 1am this morning, Peter became very ill. It was non-stop vomiting, diarrhea, fever, and intense stomach pains. The amount of fluids he lost between 1am to 5am was overwhelming. He couldn't keep anything down. By 4am, I insisted he take zofran, which is a prescription anti-emetic. I use zofran to combat nausea from migraines, and based on my experiences with it, I know it works. It worked for Mattie temporarily too, until he needed a much stronger anti-emetic for his chemotherapy. Naturally the fear was Peter wouldn't hold down the zofran, but fortunately he did. Nonetheless, he is very weak and my fear is that he will get dehydrated.

This illness hit Peter very quickly and thankfully at the moment I am fine. If we were both hit with this, it would have been awful because Peter is totally out of commission and too weak to care for himself. I know there is an outbreak of Norovirus going around, but I had no idea it would hit our household this week. I went to the CDC website, and copied some information about Norovirus below. The way to avoid Norovirus is to constantly wash your hands. Which is ironic, since Peter is always washing his hands and practices excellent hygiene, another unfortunate skill learned from living 15 months in a PICU. I must say however that any kind of sickness within our home brings back bad memories for me. My natural instinct now is to panic and worry that an illness is more than just a virus. In Peter's case I am able to rationalize that this is indeed a virus and it will go away, but the impact of Mattie's battle remains alive and well within me always!

From the CDC.............................

Norovirus is a very contagious virus. You can get norovirus from an infected person, contaminated food or water, or by touching contaminated surfaces. The virus causes your stomach or intestines or both to get inflamed (acute gastroenteritis). This leads you to have stomach pain, nausea, and diarrhea and to throw up.

Anyone can be infected with norovirus and get sick. Also, you can have norovirus illness many times in your life. Norovirus illness can be serious, especially for young children and older adults.

Norovirus causes inflammation of the stomach or intestines or both. This is called acute gastroenteritis. The most common symptoms—

• diarrhea
• throwing up
• nausea
• stomach pain

Other symptoms—

• fever
• headache
• body aches

If you have norovirus illness, you can feel extremely ill and throw up or have diarrhea many times a day. This can lead to dehydration, especially in young children, older adults, and people with other illnesses. Most people with norovirus illness get better within 1 to 3 days.

Symptoms of dehydration—

• decrease in urination
• dry mouth and throat
• feeling dizzy when standing up

Needless to say, I never left our home today. I am working on little to no sleep, and poor Peter can't get comfortable and rest. In the midst of this depressing day I had a visit from a beautiful cardinal. RARELY do we get cardinal sightings in DC. However the cardinal was one of Mattie's favorite birds. Most likely because it was his favorite color! Any case, when I saw this bird today, I thought I was having a Mattie visit.

As my readers know, Patches is battling cancer. Yet despite her failing health she continues to live up to her well earned title, "Nurse Patches." Patches stays close when you are sick and never leaves you alone. She does this for both Peter and I. I learned this many, many years ago, and I can't tell you how special it is to have such a companion when you aren't feeling well! Today, Patches climbed into bed with Peter and remained by his legs for hours.

 

Later in the day, Peter migrated down to our couch. Again, "Nurse Patches" was on the scene and even as I write this, both the nurse and the patient are lying side by side.