Tuesday, September 15, 2020

Tuesday, September 15, 2020 -- Mattie died 572 weeks ago today. 

Tonight's picture was taken in September of 2007. Mattie was 5 years old and with his cousins in Boston. I honestly have NO idea why Peter was in Boston at that time of year. I can't even recall where I was. I know Peter took Mattie to Boston in September of 2005, when I was home studying for my licensure exam. But this photo escapes me, so much so, that I have no context around it. Which is unusual for me, because I normally can describe every photo I have of Mattie. What I know for certain (and can see in the photo) was that Mattie wanted ONLY vanilla ice cream! Some things are a given!

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 6,601,337
• number of people who died from the virus: 195,501

This photo was featured in the Washington Post. It shows a very unique SUN over the Washington Monument. In fact, the sun is muted! Why? Because of the brush fires on the West Coast. A neighbor told us this today, and I thought that couldn't be possible. But apparently the smoke from California and Oregon is in our upper atmosphere (20,000 feet up) thereby impacting the brilliance of our sunshine. 

As of late Monday, California’s fires have burned at least 3.2 million acres, an area equivalent to the size of Connecticut. This has sent unfathomable amounts of burned material into the atmosphere. My mom has lung sensitivities and today she had to see her doctor because she was coughing up blood. Thankfully she was given an x-ray and examined and is fine. But what isn't fine in the quality of the air she is breathing. 

Mid-morning, we took Sunny out for a 3 mile walk on Roosevelt Island. It was a beautiful fall day and Sunny's energy and stamina have returned. His knee surgery was a success, and with that, losing some weight, and cooler weather, he is a happy camper. Eager for his walks. 

Sunny was very excited by all the deer on the Island. He was following tracks and scents! Of course we never go anywhere without someone stopping to talk about the beauty of Sunny. He is a beauty and a my gentle giant. 

The deer were everywhere this morning! They ironically aren't intimidated by us, but Sunny is a different story. 

Cattails against the fall sky. 

Wild flowers were everywhere. Our walk was the perfect escape for today. 

Wild jasmine on the Island, which is intoxicating. 

The white heron were also enjoying the Island. 

Not to mention a great blue heron which flew in for a landing on the Island. The Island means a lot to us, and was there for us at different time points in our life. It was there when we were raising Mattie. It was our weekend escape, and a place Mattie loved to float and race his motorized toy boats. After Mattie died, the Island became a refuge to reconnect with nature as we desperately tried to work through the havoc in our minds and hearts. Now it remains our refuge during COVID, it continues to serve as a place of peace to re-connect with Mattie, and let's not forget a place for Sunny to explore and have an adventure in the woods. 

Monday, September 14, 2020

Monday, September 14, 2020

Tonight's picture was taken in September of 2007. It was Mattie's first day of kindergarten. I am not sure who was more nervous! It was a toss up. Mattie wanted to go back to his preschool, and the transition to an elementary school, was challenging. Yet Mattie got up early (which wasn't a problem for him), got into his school uniform, and complied with my request for a photo! I honestly thought I would have MANY years of first day school photos. I would never have guessed that this would be my first and only. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 6,545,948
• number of people who died from the virus: 194,367

It is not unusual for me to receive email questions from the childhood cancer advocacy community and from families themselves. The questions always revolve around psychosocial concerns, treatment, and research. Today's question was about children with cancer who are dying. Specifically how and when should parents tell their children they are dying. It is an excellent question and believe it or not, even in 2020, there are mixed thoughts about this topic. Mixed in the sense that there are parents who feel this information should be kept from the child and then the opposite, parents who feel children should be told. 

Parents maybe all over the map on this question, but the psychosocial community no longer is! The trending thought is children should be told, in a developmentally appropriate manner. Frankly whether I read the research or not, I know first hand from Mattie (my 7 year old), that children are perceptive and they know OUTRIGHT that something is very wrong and they are sick enough to die. They may not understand the concept of death, like you or me, but they get the concept of a separation and the anxiety that can cause. In fact, Mattie told Peter and I that he was dying! I am not sure we processed that feeling, as our goal was always to fight for Mattie and keep him alive. So the notion of him dying, wasn't something we could face, even when our 7 year old asked us! 

I provided the person who emailed me with these four resources:

1. The Gift of Gerbert’s Feather’s – to help parents open these conversations. (audio version now free): https://www.maginationpressfamily.org/stress-anxiety-in-kids/the-gift-of-gerberts-feathers/?utm_campaign=apa_publishing&utm_medium=direct_social_media&utm_source=books&utm_content=magination_mpfamily_storytime_09102020&utm_term=twitter
2. When your child is sick by Joanna Breyer (particularly chapter 22): https://www.penguinrandomhouse.com/books/318757/when-your-child-is-sick-by-joanna-breyer-phd/
3. The Private Worlds of Dying Children by Myra Bluebond-Langer (landmark work from the 1970s) https://www.amazon.com/Private-Worlds-Dying-Children/dp/0691028206
4. Dying Child’s Awareness of Death by John Spinetta 

Numbers 3 and 4 above, are actually landmark studies in the field addressing this very question! It was previously thought that children did not experience "death anxiety" given their facial expressions and mannerisms. However, this was proven to be short sighted and incorrect, as it was found that children as young as 6 years had a very real awareness of the seriousness of their illness. 

It was a very interesting question posed to me today and I was happy I could provide resources. As I strongly believe children, regardless of their age, are aware of what is happening to them and within them! Which is why top notch treatment teams LISTEN to their children patients and the parents who know them so well. 

The Dying Child's Awareness of Death: A review by John Spinetta

Two benchmark studies discussed within his article:

ONE

Waechter (1968, 1971) used a set of eight pictures, requesting stories about them from each of the 64 children in the study. She used four matched groups from the controversial 6-10 age range (fatally ill children, children with nonfatal chronic illnesses, children with brief illnesses, and normal, non-hospitalized children). Among the fatally ill children in her study, Waechter found a higher number of overtly expressed death themes and concerns than of mutilation or separation concerns and, compared with the other groups, a greater degree of concern with threat to and intrusion into their bodies and interference with normal body functioning. Waechter's findings pointed to the very strong possibility that children aged 6-10 with a fatal prognosis not only are aware that they are dying, but can express that awareness by actual use of words relating to death.

TWO

In the study (Spinetta et al., 1973), 25 children aged 6-10 with a diagnosis of leukemia were matched in age, sex, race, grade in school, seriousness of condition, and amount of medical intervention with 25 children with chronic (but nonfatal) illnesses, such as diabetes, asthma, congenital heart disease, and renal problems. The children were asked to tell stories about each of four pictures of hospital scenes and about each of four figurines (nurse, doctor, mother, and father) placed in a three dimensional replica of a hospital room. Each child was also given a brief anxiety questionnaire sorting out hospital anxiety from home anxiety, based on the Children's State-Trait Anxiety Inventory. The results offered strong support for the hypothesis that fatally ill children show significantly greater awareness of their hospital experience than chronically ill children. The leukemic children related significantly more stories that showed preoccupation with threat to and intrusion into their bodies and interference with their body functioning than did the chronically ill children, both in the stories relating to the pictures and the stories told about the placed figurines. The children with fatal illness also expressed more hospital-related and non-hospital-related anxiety than did the chronically ill children. If, as the parents of the 25 leukemic children maintained, their child did not know that his illness was fatal and if the chronically ill children generally received the same number and duration of hospital-related treatments, there should have been little or no difference between the scores of the fatally ill children and the scores of the chronically ill. Yet there was a significant difference in the level of anxiety that was present from the very first admission to the hospital. It seems that despite efforts to keep the child with a fatal illness from becoming aware of the prognosis, he somehow picks up a sense that his illness is very serious and very threatening. The study established the fact that the fatally ill child is aware that his is no ordinary illness.

Sunday, September 13, 2020

Sunday, September 13, 2020 

Tonight's picture was taken on September 24, 2008. By this point Mattie was in his second month of treatment, but before any of his limb salvaging surgeries occurred. That day, Mattie was invited back to his preschool to play with Alex, a preschool buddy and to see his preschool teachers. The photo shows Mattie and Alex in the sandbox. I can't tell you how many hours Mattie spent in that sandbox when he was in preschool. In fact, practically every day after school, when the weather was nice, Mattie requested to stay on the playground to play with friends. Which was exactly what we did! I am so glad in retrospect that I never rushed Mattie into the car after school to follow my schedule. When I was with Mattie, he was my priority and if he and his friends wanted to get together to play, then I always made that happen. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 6,512,451
• number of people who died from the virus: 193,976

A friend of mine sent me the article below entitled, "Grief doesn't have five stages." In jest she asked if I wrote it! Clearly you can see I didn't, but apparently the thoughts and feelings expressed in the article reminded my friend of what I express often on the blog. Seeing articles like this confirms for me that I am absolutely right..... grief and loss are not something you get over. 

When we think of grieving and loss, our society tends to think of the process in stages. Perhaps in five stages (denial, anger, bargaining, depression, acceptance) according to psychiatrist Elisabeth Kübler-Ross. Kubler-Ross devised these five stages in the 1970's after speaking to terminally ill patients as a way of helping them deal with their own impending deaths. Unfortunately the Kübler-Ross model was taken out of context and instead became the well known framework for all responses to death. This popularization of the stages of grief concerned Kübler-Ross as she felt the steps were “not stops on some linear timeline in grief.” 

Make a long story short, it is now understood by those who live with grief and grief professionals that mourning and loss are NOT a linear process. In fact, it is rather a life long process and as the article says, the relationship with your deceased loved one continues, "loving them in absence, rather than presence." The bullet points below, I captured from the article, as they resonated with me. 

• Grief is like an impenetrable force field around the person left behind, the person who used to be like you.
• Back then, my head invaded by grief, I couldn’t find the words to explain the shifting size of it: unbearably huge one day, forcing endless crying and dwelling on the past; small and tucked away the next day, freeing me to just live for a little while.
• Grief goes in circles. I think we are slowly coming to realize as a society, that it is okay to grieve your whole life.
• The grieving process is complex, isolating and ongoing — requiring emotional energy to find meaning in the vast unfairness. This goes on under the skin, invisible to the outside world. It’s what you do just to continue living at the same basic level as everyone else. Certainly this involves feelings of denial, anger, and depression. Sometimes all at once, or not at all, and then again.
• Mourning is so much more than an act of endurance. Really, grieving is the task of taking the love that was once shared between two people, and transforming it to fit inside one broken but still-beating heart.

However, the article stated..... “mourning can be one of the most enriching, vivid things you ever do, if you lean into it fully. There’s a feeling of joy that eventually arises.” I have no problem with the first part of the statement, but when you want to lump in feelings of joy from the process, you lose me. Certainly grief forces us to learn, cope, and grow. We don't have a choice if we wish to remain part of the land of the living. But I can't ever see myself saying this has brought me joy, nor do I foresee that happening in the future. Mainly because attaching joy to my loss process, would mean that I am okay with the fact that Mattie died in the first place. Which won't ever happen, I don't care how much time lapses since his death. I also would like to think that I am a self actualizing person and that there are much better and more enriching ways that I could have matured, grown, and developed in my life than having to experience the death of my only child. Yet it's not just this article that discusses this concept. Many of our psychosocial researchers and clinicians we interact with, also use this line of reasoning with me. I get what they are saying, but that doesn't mean it sits well with me. 

Grief doesn't have 5 stages:

https://getpocket.com/explore/item/grief-doesn-t-have-five-stages

Saturday, September 12, 2020

September 12, 2020

Tonight's picture was taken in September of 2008. That week we took Mattie to NYC to consult with a doctor at Memorial Sloan Kettering. That was a difficult visit, mainly because both the doctor and the institution were not a good match for us. In between hospital visits, we tried to give Mattie a NYC adventure. This photo was taken outside the Museum of Natural History. You can see that Mattie was NOT happy at all. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people who were diagnosed with the virus: 6,476,460
• number of people who died from the virus: 193,482

Given my migraine today, I won't be writing much. I think I did too much in terms of chores this week, seeing doctors, and having a six hour licensure board meeting yesterday. I have come back from Los Angeles very tired, and I have yet to get a break since returning home. 

Friday, September 11, 2020

Friday, September 11, 2020

Tonight's picture was taken in September of 2008. As you can see, Mattie was sitting in front of a laptop computer. This computer was given to Mattie by his technology teacher, Mary (of course when Mattie died, we gave the computer back to the school). Mary visited Mattie in the hospital on a weekly basis. This wasn't her assignment from the school. Rather she elected to do this on her own time. This should tell you a lot about Mary. Mattie knew Mary from his kindergarten year at the school. In fact, Mattie was very fond of Mary and he loved her class and her style of teaching. Once Mary found out about Mattie's cancer diagnosis, she took it upon herself to continue teaching Mattie and felt that he needed a computer so they could work more effectively together. Besides these visits being stimulating for Mattie, they also gave me an hour to leave the room and regroup. So Mary was actually helping Mattie and me. Yet Mary somehow understood that Mattie wasn't always in the mood for a lesson. He wasn't shy about that either and would outright tell her. Of course Mary could have said okay and then left, but she didn't. Instead, she would work with Mattie on whatever he wanted to do. Many times that meant that Mary got wrapped up into Mattie's play schemes. Mary was one of the many amazing people who Mattie introduced me to and I will always be grateful to Mary for her visits and treating Mattie with dignity. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 6,435,528
• number of people who died from the virus: 192,792

On the 19th anniversary of 9/11, it is my hope that we all remember this day. As 3,000 people lost their lives, and countless others who have survived are left with long term health consequences. Whether we know someone who died on 9/11 or not, it is a day that should make us all pause and reflect as a Country. I admit I did not lose a family member on that day or a close friend. Though my high school librarian (who we all loved), died in one of the planes which hit world trade center. So I will always remember Mary Lynn Edwards Angell. 

I also associate 9/11 with my pregnancy. As on 9/11/2001, I was scheduled to have my first obstetrician visit. That never happened. Instead, pregnant with Mattie I was glued to the TV, like so many others in the USA and around the world. I can still recall the feeling of fear I had the concern I had for my baby and its (didn't know gender that early on) future. 

Given that we are all faced with the lockdowns associated with COVID, I have been following the controversy about whether or not to have gatherings and particularly whether the names of victims would be allowed to be read at Ground Zero in NYC. I completely understand the health threat and public safety, but I also feel that family, friends and first responders need this outlet to remember and share in their collective and lifelong grief. Which is why I was glad to see the coverage of Ground Zero today, because those who are LEFT BEHIND need to absolutely hear their family members' names. Yes that matters and yes it helps with coping with such a traumatic loss. 

While reading an ABC news article on 9/11, I learned about the "survivor tree." In October 2001, a severely damaged tree was discovered at Ground Zero, with snapped roots and burned and broken branches. The tree was removed from the rubble and placed in the care of the New York City Department of Parks and Recreation. After its recovery and rehabilitation, the tree was returned to the Memorial in 2010. New, smooth limbs extended from the gnarled stumps, creating a visible demarcation between the tree’s past and present. Today, the tree stands as a living reminder of resilience, survival, and rebirth.

Each year, the 9/11 Memorial gives seedlings from the Survivor Tree to three communities that have endured tragedy in recent years. The recipients this year of a sapling were three hospitals within the boroughs of NYC. One being the Montefiore health system, which lost 27 front line workers to the virus. 

Symbols and connecting to nature are crucial to survivors. It helps us feel a continued connection to our loved one, to invest back into our world as we watch this tree grow and thrive, and provides hope that we do have a future (though very different than how we thought or intended it to be). 

Tree that survived 9/11 serves as inspiration for past, future:

https://abc7ny.com/911-never-forget-september-11-attacks-memorial-2020/6417329/

Thursday, September 10, 2020

Thursday, September 10, 2020

Tonight's picture was taken in September of 2008. Mattie was home between cancer treatments. As you can see, by that point in time, we already needed an IV pole and fluids. As cancer impacted Mattie's desire to drink liquids and even eat. So right from the start, we had to learn the art of giving an IV. Naturally, I was always scared that Mattie or us would step on his IV or tug at it. The issue was the IV was connected to a tube dangling out of Mattie's chest. However, over time, we all got used to having IV tubes around us and dangling from Mattie. We learned to live with them and Mattie had a healthy sense of cautiousness about these tubes. Notice our cat, Nurse Patches. Patches was very bright and in tune to family dynamics. Early on in Mattie's treatment we kept Patches at home, however, after those initial months, we boarded Patches at our vet. Because she needed medication administered for her kidneys and also needed more consistent care than we could provide. Patches lived at the vet for a year before she returned home. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• number of people diagnosed with the virus: 6,377,540
• number of people who died from the virus: 191,360

This afternoon, I went for a six month follow up eye exam. In the last exam I had in February, my IntraOcular Pressure (IOP) (the fluid pressure inside the eye) was high. This is a problem as such high pressure can damage the optic nerve. IOP numbers are apparently use to monitor for glaucoma. Glaucoma is a group of eye diseases that cause vision loss and blindness through damage to the optic nerve. 

I have never had eye issues before. I don't wear prescription glasses either. However, everything about today's visit was stressful. So much so that after an hour in that office, it triggered a migraine. I would say the staff and the doctor are insensitive. No wonder that this doctor is retiring. He has lost the art of balancing science and humanity. I found the doctor aloof and cold and was matter of fact with throwing one test after the other at me. I had about five different tests today and during the whole time, he did not explain what on earth he was looking for. He told me he would talk with me after the entire examination. He is lucky I did not flip out, as I could feel my anxiety and anger building. No regard for patients and the daunting nature of being in a dark room, with drops flying into your eyes, not to mention all sorts of lens and machines either near or in my eye. 

Any case, after the ordeal of tests, he started talking to me about angles and glaucoma. In all the years I have been going to this doctor, NOT once did he mention narrow angles. Narrow angles means that the angle between the outer edge of the iris and the cornea is narrower, or more closed, than normal. This can affect fluid flow and thus intraocular pressure. What I think it particularly curious is that I asked for a print out of all the results and his notes today. I want them for my record, as I also plan on finding a new eye doctor. In any case, in his notes, it mentioned that I have a history of cataracts and I am a glaucoma suspect. NEWS to me. I neither have a history of cataracts or currently have this problem. Nonetheless, he scared me enough about narrow angles, that I will definitely have another 6 month follow up, but go to a different ophthalmologist. 

In the normal eye, a fluid called the aqueous humor circulates continuously from behind the iris (the colored part of the eye) to the front, or anterior, chamber of the eye, delivering nourishment to the lens and the cells lining the cornea (the clear part of the eye). The fluid then drains out of the eye through the trabecular meshwork — the eye's filtration system — at the junction of the outer iris and the cornea.

In angle-closure glaucoma, the trabecular meshwork is obstructed by the iris, because the angle where the iris meets the cornea (sometimes referred to as the drainage angle) is narrower than normal. This slows or blocks the flow of aqueous humor out of the eye. Pressure from the aqueous humor behind the iris forces it against the trabecular meshwork.

So he started counseling me today on a procedure called Laser Iridotomy. It is a procedure to treat narrow angle glaucoma. Basically it is a procedure done in the office with a laser, in which a hole is made in the iris, so that fluid can more easily flow to the front and out of the eye. Needless to say, no one is touching me with a laser until I have more information and another qualified opinion. 

Certainly one wants to go to a competent doctor, but for me the personal fit has to be right. This office and doctor are a poor match for me, as they don't embrace the patient as part of the treatment team. If you are going to touch my eyes, I have every right to know what you are doing, talking about, and what the plan of care will entail. 

Meanwhile it was non-stop rain in Washington, DC today. More like torrential rain! 

The rain was so heavy, it looked like snowflakes to me. 

Wednesday, September 9, 2020

Wednesday, September 9, 2020

Tonight's picture was taken in September of 2008. That day, one of my friends came to visit us in the hospital. With her, she brought a block of clay, some tools, and goggles. Mattie had to excavate  through the clay to reveal plastic dinosaur bones. These bones then connected together, to form a 3-D dinosaur! Mattie worked on this block of clay for hours. It was the perfect activity for him. As it did not involve gross motor movement, only fine manipulation. Despite all of Mattie's surgeries, his fine motor movement was excellent. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 6,351,623
• number of people who died from the virus: 190,478

Given that yesterday was the 11th anniversary of Mattie's death, we both feel a bit shell shocked today. It is hard to know how to prepare for these milestone moments, and most definitely I have learned over this past decade to have no expectations for others in our life. With time, people forget and it is natural. It is also natural to think that parents heal and the loss isn't as painful as time goes by. 

With that said, I am thankful to have friends who texted, emailed, left messages on Facebook, donated to the Foundation and reached out to us. It makes a huge difference on a hard day, which unfortunately doesn't last for only 24 hours. The day starts another year without Mattie and all that this signifies. I wanted to highlight two messages I received yesterday. One was a poem written by a colleague and long time friend. Nancy has a special way of capturing the sentiments and thoughts associated with an emotional day. The other message is from a child life professional I have had the opportunity of getting to know since 2018. Ironically I haven't worked closely with this professional, but apparently she has followed our story and is touched by Mattie's memory. The beauty of Mattie!

Remembering You

by Nancy Heller Moskowitz

Missed each and every day, Sept. 8th. is etched in our bodies

Achievements through the Foundation continue to remind everyone of your life

Today we visited your Oak Tree, proud and sturdy

The acorns and lady bugs were abundant, nature is your signature, your gift

I feel your presence as does Daddy, loving us back as we cherish you

Each year brings a new challenge, our son forever!

The second message came out of the blue, as I only periodically communicate with Jessica. Jessica wanted me to know about an art exhibit she attended in 2018. At the exhibit she participated by adding a wooden note to the display that reflected upon Mattie's life and his impact on her. Totally stunning for me to hear this, since we don't know each other well, nor has she ever met Mattie. However, I have had the opportunity to watch Jessica interacting with patients and she is very gifted. Not only capable, but she taught herself the Spanish language, and is very at ease working with children in English or Spanish. Her energy is always positive, consistent, and compassionate. The perfect combination for family members when stuck living inside a hospital. 

This is a photo of the art exhibit entitled, David Best's temple. The hand crafted temple was a glowing sanctuary, offering visitors a quiet place to reflect and pay tribute to lost loved ones. This site-specific installation covered the walls with intricately carved raw wood panels that led to an ornate altar. Wooden placards were provided for visitors to write a personal message and leave within the installation. I am so sorry I missed this exhibit, but was thrilled to hear Jessica went, and not only went but placed a wooden card in memory of Mattie at the exhibit. 

A short video about the exhibit: https://americanart.si.edu/exhibitions/david-bests-temple

Here is a photo of the note Jessica inserted into the display back in 2018. I was deeply moved by her entire message to me, but this sentence stays with me........
 "what I didn’t realize is how much I could think of or care about a child who I never even got to meet." 

I did not know until now that Jessica wrote this wooden note, or that Mattie's life has touched her in this way. So this was a very, very special gift to receive on the 11th anniversary of Mattie's death. The gifts that are unsolicited are always the best. But what Jessica's email made me see, is that I must be doing a good job at keeping Mattie's life and memory alive. Otherwise, how would anyone, who hasn't met him, know about his amazing life and legacy. 

Tuesday, September 8, 2020

Tuesday, September 8, 2020 -- Mattie died 571 weeks ago today. 

Today is the 11th anniversary of Mattie's death.

Tonight's picture was taken in April of 2002. He was only days old. Ironically I feel that when Mattie was born, he looked more like Peter. This quickly changed by the time Mattie became a toddler. At that point there was absolutely NO mistaking who his mom was. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 6,321,950
• number of people who died from the virus: 189,538

We visited Mattie's memorial tree today at school! This white swamp oak looks strong, steady, and beautiful. This is memorial tree #4, as the first three had issues. The School's arborist once told me that..... Mattie wanted an oak and was holding out until he got one. 

Mattie loved oak trees. He collected acorns every year and gave them to SPECIAL people in his life. So I know Mattie would have been happy seeing all the acorns on his tree today. Not to mention lady bugs. The tree was filled with them. I view this as a sign from Mattie to me. 

The acorns with their cute caps! Ladybugs all over the tree!

We hung many butterfly ornaments today and changed all the ribbons around each of the trees in our memorial Mattie grove.  While on campus, we chatted with Mattie's school counselor and all the grounds crew who have gotten to know us over the years! They LOOK OUT for Mattie's tree! We are grateful to have this oak tree to turn to every September 8th.

It is hard to believe that today marks the 11th anniversary of Mattie's death. One may think..... wow that is a long time ago, and therefore we must have "gotten over" this loss. Those of you who know me, know I despite certain words like "moving on," "getting over," "the new normal," "every thing happens for a reason," and "he's in a better place." In fact, I strongly dislike most platitudes.

The only thing time does for bereaved parents is it teaches us how to survive the impossible. As grief and loss will always be with us, but how we manage and cope with this life-long journey, our thoughts and feelings, and sometimes the insensitive things people say to us are all we have control over. 

If Mattie were alive today, he would be going to college. I realize going to college now looks different because of the Coronavirus. However, I would take different over, a non-existent child any day. 

Eleven years after Mattie's death, and Peter and I still flounder over how to spend this day, and of course with each year that passes, it takes more energy and concentration to remember the nuances of our son. Something I don't wish upon any parent.  

Below is a message I wrote and posted at Mattie's celebration of life service in 2009. The message discusses the day Mattie was born, a story he loved to hear. He particularly loved hearing this story during challenging and stressful times, such as on August 5th, when we learned Mattie's cancer spread throughout his body, making his prognosis terminal. 

Who was Mattie? Mattie was a force. He was bold, humorous, bright, strong willed, loved animals, was king of the Legos, was fascinated by anything with wheels, was our "little engineer" (at the age of two, he could disassemble and re-assemble his hotwheel cars), and as Peter often said, he was a "mama lover." He is dearly missed and forever loved. He leaves a hole in our hearts and our lives that can never be filled. 

For all our family, friends, and Mattie Miracle supporters out there..... THANK YOU for keeping Mattie's memory alive. 

------------------------------------------------------

My Dearest Mattie,

It is said that parents love their children right from the moment they are born. However, in your case, our love for you began as soon as we learned we were going to have a baby. In fact, right after seeing your sonogram picture, we felt like proud parents. We posted those pictures everywhere. We shared these pictures with practically anyone who would listen or showed interest, and each September when I taught prenatal development in my undergraduate human development class, out would come your sonogram pictures to illustrate my points. Even my students got a sneak peek at our baby, a baby who would have a profound and meaningful impact on not just his parents but also every community he touched. Daddy and I did not only love you, we FELL IN LOVE with you, and that love grew stronger with each day. Your energy, spirit, love for life, intellectual challenges, sense of humor, and loyalty to your friends and family were only some of the wonderful traits we always admired in you.

This video is a tribute to you and your wonderful, yet short life. It seems fitting as we celebrate you, and say good-bye to your physical presence that I share the story about how you entered the world. The story of your birth had to be one of your most favorite stories to hear, and I found during times when you were reflective, overly tired, or in need of hugs and tenderness, the request for this story arose. In fact, I remember on August 5th, the day we found out that your cancer metastasized everywhere, you and I were sitting in the hospital’s rose garden, and you requested the story. It was almost as if you knew this was going to be a bad day, so in essence we might as well brace ourselves, cuddle, and prepare for this together.

Here is the story I always shared with you. A story Daddy and I will never forget. On April 2, 2002, at 11pm, I decided to head to bed. I was anxiously awaiting your birth, and as your due date approached, I couldn’t help but wonder, when will “the baby” be coming? I was restless and uncomfortable, so while in bed, I began to watch television. I was having trouble concentrating on what I was hearing, mainly because you were kicking up a storm inside of me. At which point, the kicking became so intense, that I literally felt something pop. You clearly wanted OUT, and you were going to kick your way into the world on your terms. Naturally after feeling this pop, I looked down at my tummy, and when I jumped out of bed, I realized my water had broken. This only happens to 25% of moms, and in retrospect, I should have guessed that this was just the beginning of how different our lives were going to be together. I immediately called the doctor and told her what happened. She asked if I was in pain, which I wasn’t, and she instead told me to get a good night’s rest, because my baby was going to be born the following day. Well I can assure you after hearing this news, sleeping was the farthest thing from our minds.

So on April 3, 2002, Daddy and I headed to the hospital and we were admitted to the maternity unit at 8am. The labor process began, but it was a VERY slow process for me, and at times as you moved inside my tummy, Daddy could see your head pushing against my backbone. Needless to say Dr. Mike, the anesthesiologist, became my favorite doctor that day. The hours kept rolling by, and still there was NO sign of our baby! I was getting weaker, I developed an 102 fever, and by 11pm I really had no energy to give birth to you. In addition, to how I was feeling, your oxygen supply was getting cut off, and your chin was positioned in such a way that would make the birthing process almost impossible. So it was at that point that the doctor recommended an emergency c-section. Things began to happen very quickly around me. I was signing paperwork for surgery and Daddy was being transformed by putting on a bunny suit so he could enter the operating room.

I had never been in an operating room before in my life, but I really wasn’t concerned at that point about myself. I was solely focused upon you. I was wide-awake for the c-section, but unable to see the process, which as you know, was probably a good thing. Daddy on the other hand found the whole thing very exciting, and began to videotape and take pictures of the surgery. Literally a team of people surrounded me and I will never forget Dr. Mike, the anesthesiologist who sat by my side, and talked with me and did whatever he could to keep me pain free.

When you have a c-section, your arms are strapped to the operating table, so I couldn’t move, and directly over my head was what appeared to be a rope with a clamp that was holding open my abdominal cavity. Normally by this point I would have passed out, but when it came to you, I developed strength I never knew I had. As the doctor began cutting, and finally got to you, the first thing she said was, “what is this?” That is NOT what you typically hope to hear when having a c-section. The doctor let me know that I had a grapefruit sized tumor on my bladder, and my immediate thought was, did this affect the baby? The next thing I knew, I felt her tugging, and I heard the loudest cry ever. Now here is the part of the story that I know was always your FAVORITE! I would always try to replicate the sound I heard coming from you that day, a sound that will always remain in a parent’s ear. It was a very large WAAHHH! WAAHHH! At which point the doctor told us two things: first, that you were one of the most beautiful babies she had ever seen, and second, that you had quite a set of lungs on you! I concurred with both statements.

The doctor then brought you over to me, and she felt that I needed to be the first person to touch you. So despite my arms strapped to the table, my right hand miraculously reached out and grabbed your tiny, soft, and cute foot. It was a moment I will always cherish, a moment in which I will never forget, and a moment I am so happy you too enjoyed hearing about. Each time I retold the story I felt as if it further bonded us together, and I always enjoyed hearing your comments, thoughts, and reactions to your story.

Seeing you made Daddy very happy! Though he was worried about me, since after the c-section, I had to have bladder surgery to remove the tumor, we both agreed that Daddy should stay with you and accompany you to the nursery. It is there that Daddy got to see you cleaned up, he learned that you weighed 6 pounds and 13 ounces, and that you had high Apgar scores of 8 and 9. Within an instant, Daddy became one of your fiercest protectors, and he cared for you for five days straight while we were in the hospital together. In fact, Daddy is the first person who changed your diaper, and though those were five very challenging days in the hospital, they were days that helped us form our strong family ties. Ties that were imperative and that we relied on for seven years of your life!

Your presence is so greatly missed. Nothing seems the same, is the same, looks, feels, or tastes the same without you in our lives. May you always know that Mommy and Daddy love you, cherish you, and that feeling will remain with us forever and always. Good-bye my Mooshi Moo angel and goodbye Daddy’s best buddy. With love from Una Moon and Daddy!

Monday, September 7, 2020

Monday, September 7, 2020

Tonight's picture was taken in September of 2008. Mattie was two months into treatment and was home between infusions. That day, Mattie's very close preschool buddy, Zachary, came over. Zachary brought Mattie this Indiana Jones hat. As you can see they were having a good time together acting out their own adventures  in our living room. Zachary and Mattie were inseparable in preschool. They met each other on the first day of school back in 2005, and practically every day after school, they either played in the school's playground or had a play date. Their play involved running around, climbing things, and so forth. However, once Mattie developed bone cancer, his ability to do the physical things he once did ended. That could have impacted their friendship, but it didn't. Zachary found a way to play with Mattie in a new way, and frankly I learned a lot about friendship from watching these two boys together. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• number of people diagnoses with the virus: 6,292,206
• number of people who died from the virus: 189,095

This is the photo of my dad's leg today. Though it looks red and inflamed, I can see the improvement. It gives me confidence that we are moving in the right direction. Thankfully my parents sought out a second opinion about this on Friday before the long weekend. 

This morning, Peter suggested we have breakfast outside on our balcony. It was the perfect weather day, so we did it. Sunny was thrilled by the prospect, as he got a scrambled egg and even tried a piece of an English muffin with jam that Peter's mom made. Sunny loved it!

It is hard to believe that tomorrow will be the 11th anniversary of Mattie's death. Our goal is to visit Mattie's trees tomorrow and to hang butterfly ornaments on them. My mom sent me 20 butterflies two years ago, and I just got to converting them into ornaments today!

Meanwhile, I snapped some photographs of our neighborhood. We live in an area that is supported by the George Washington University, the State Department and the Kennedy Center. Yet the amount of graffiti and homelessness is running rampant. Tents are everywhere as our city gives out tents to the homeless. I think they should use the money they spend on tents and instead invest it into programs that actually work. As the filth, garbage, and hygiene issues around us are sickening. 

This is our neighborhood CVS. If you look to the left, you will see a homeless man sleeping out front. The homeless are in front of this store throughout the day. 

This is our park near where we live. It is filled with tents. We are absolutely surrounded and residents in the city have no recourse or options. 

For Peter and I, this is a very sad week. As we face another year without Mattie. Yet we are further influenced by our surroundings. Which are equally sad and depressed. 

Sunday, September 6, 2020

Sunday, September 6, 2020

Tonight's picture was taken in September of 2008. My mother in law, sent Mattie this foam puzzle of the map of the world. Mattie loved puzzles and as soon as he opened the package, he started to assemble the puzzle. After the puzzle was fully constructed, Mattie sat on it, because the foam was comfortable. I got a kick out of this photo and entitled it, "Mattie sitting on top of the world." 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 6,268,757
• number of people who died from the virus: 188,791

Peter has been under enormous amounts of stress. Taking any one of the issues he faces could make anyone anxious, but altogether it is like the perfect storm. As Peter is dealing with a job search (during the horrors of COVID-19), he is managing the estate and paperwork of our deceased neighbor as well as dealing with the complex dynamics and personalities of our neighbor's family and friends, he lives with daily concerns about our personal safety living in Washington, DC and of course this Tuesday is the 11th anniversary of Mattie's death. 

This morning I found that Peter couldn't sit still and seemed very agitated. Not to mention nauseous. Symptoms I know all too well! Not because of Peter, but because of myself. Since Mattie's death, I have dealt with anxiety and panic attacks. So much so that I thought I was having heart issues and my doctor sent me to a cardiologist. The only thing the cardiologist did for me was cause more anxiety, at which point, I ripped off all heart monitors and stopped the 24 hour heart test. I live with anxiety, therefore, I knew what Peter was experiencing today. I think having someone normalize your intense feelings and thoughts helps. 

I also know that the best medicine for anxiety with nausea (besides my good friend Zofran) is movement. Sitting still and being confined at home doesn't work. Or it doesn't work for me, nor does it work for Peter. So I told Peter to go outside and walk. He walked two miles and he came back and we sat outside with Sunny for a while. Our brains can get overloaded, and stress can manifest in a physical way. It is said that the stress you feel from the havoc in your brain sends signals throughout your whole body, eventually reaching your stomach. Anxiety with nausea is real, and for anyone with severe anxiety, they know just how frustrating it can be to add sickness to emotional distress. While nausea is more common than getting sick, it's a sign your body is under stress. While not everyone experiences anxiety on a regular basis, when it gets severe enough, the body is programmed to make you feel nauseous. 

Mid-day, we took Sunny for a walk at Turkey Run park. Sunny honed into a sound! When we looked, it was this cute chipmunk. Mattie absolutely LOVED chipmunks and he even wrote about them in kindergarten. Mattie called them "chippys."

Sunny staring at the chipmunk!

The beauty of Turkey Run. I love the greenery, peacefulness, and little to no people. 

I stopped Peter and Sunny from stepping on this toad! Do you see him?

This evening, we have been invited over to a friend's house. I think this will be a positive diversion for Peter. To the dinner, we are bringing a homemade Blueberry Pie. When Peter was in Boston, he went blueberry picking with him parents. So when I returned home from Los Angeles, I found several bags of blueberries in my freezer.  

I am also bringing a Corn and Tomato Salad. This has to be one of my favorite salads to make in the summer months. It is very easy to do and very tasty! It goes with just about any kind of meat or fish.