Saturday, October 3, 2020

Saturday, October 3, 2020

Tonight's picture was taken in October of 2002. Mattie was six months old. Trying to get Mattie to sleep was a labor of love. I always thought babies naturally fell asleep on their own! Wow, did I learn the hard way that this isn't the case. As you can see Mattie was wide awake! We tried everything to help Mattie sleep. At the end of the day, I had to read a book detailing the Ferber Method. Which basically trains your child to self sooth by using a series of training sessions. You leave your child alone for strictly-timed intervals, ignoring any protests and cries you might hear. I honestly did not believe this could work, but we followed the Method to a T, and it worked! We resorted to using the Method because Mattie did not sleep for more than a couple of hours, until we Ferberized him. 

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

• number of people diagnosed with the virus: 7,368,452
• number of people who died from the virus: 209,187

You know the kind of day that when you wake up, you realize it isn't going to be a good day? Well today was one of those days. Not for anything specifically, but because of an accumulative of things. Day one after receiving the flu shot, and I am stunned I don't have a fever, aches, or even arm pain. The pharmacist yesterday said this was going to be a different experience for me, and she was right. I have no idea if how she gave me the shot made the difference, but I am thrilled. Of course, taking Tylenol every four hours for 48 hours straight isn't hurting me either. 

One of the research projects Mattie Miracle has funded, was the development of a manual to create an on-line support group for bereaved parents. Naturally a topic near and dear to Peter and me. The manual was created and pilot tested and the researcher of the study has asked for me to write a Forward to be included in the published manual. As I said, it wasn't a good day for me, so I literally sat down and couldn't string two words together. I think the daily non-stop COVID routine gets to me at times and the lack of freedom is sending me over the edge. When this happens, walking is necessary! Sunny benefited today! In any case, after several walks, I went back to the computer and generated this..........................

The Mattie Miracle Cancer Foundation is proud to have supported the research and development of this Manual. The Manual provides a road map to create an on-line support group for bereaved caregivers. Bereavement support is an essential part of quality medical care and this is supported in the evidence-based Psychosocial Standards of Care. Every day, seven children die from cancer, and families are left to cope with this forever loss. Yet in so many cases, families face the unimaginable without the support of their treatment site. Which only compounds the feelings of loss, isolation, and despair. Healthcare teams play a vital role in a child and family’s journey with cancer. The journey does not end when the child dies. Which is why the Foundation stands behind this innovative research which uses technology to support families after the loss of a child. The beauty of the Manual is that it details the ease of creating a follow-up service, without over burdening staff and requiring additional financial resources. On behalf of all families whose child died from cancer, we thank you for your interest in this Manual, and your commitment to meeting the psychosocial needs of bereaved caregivers. 

Friday, October 2, 2020

Friday, October 2, 2020

Tonight's picture was taken in October of 2002. Mattie was 6 months old. By that point, he was too big to eat in his car seat. So we transferred him to a high chair. It wasn't Mattie's favorite place to be, but we always made eating fun in order to entice Mattie to sit still and actually eat. Mattie needed his brain kept busy in order to focus! I learned the art of entertainment.  

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

• number of people diagnosed with the virus: 7,312,444
• number of people who died from the virus: 208,485

Typically each year around this time, I make a choice not to take a flu shot. Me and half the country actually! Mainly because the shot makes me feel ill and every time I have received the shot, I also landed up contracting the flu. So given those experiences, I swore off the shot long ago. This year, given the Pandemic and all the information floating about regarding peaks of the flu and COVID at the same time, I decided to get the shot. 

Around 40 million to 50 million Americans catch the flu, with some 800,000 requiring hospitalization each year. In addition, the flu kills 30,000 to 60,000 Americans every year. Rather staggering if you think about it. Getting the flu shot gives us something we can actively do during this public health crisis. Today we had an appointment at CVS to get our flu shot. Given that pharmacies are giving out the shot for free, I knew making an appointment would be key. So we went to our store and checked in this afternoon. There were others waiting to receive their shot. In fact, the man in front of us was like me, not happy about getting the shot. He conveyed that the pharmacist, who was doling out the shots. 

Any case, after he got his shot, he came out and was smiling. So I asked him, "how did it go?" He said it was great! Who says that about a shot? But he explained that the pharmacist is lovely and made it painless. I couldn't get over it. My joke to him was.... "did she give you a lollypop?" 

Peter and I both went into the clinic room together and the pharmacist greeted us. She could visually see that I wasn't thrilled about getting the shot and I told her it always hurts and makes me ill. She literally said, "this time would be different." It wasn't like she sat down to have a therapy session with me. In fact, she was only chatting with us for a couple of minutes. But in that time, she created an atmosphere of ease, trust, and calmness. All I know is I never felt her give me the shot. I even asked Peter..... 'did you see the needle go in?' I know, I am comedy show. The pharmacist told us she has been caring for people since she was 19 years old. She made such a difference to me today because it was clear this pharmacist understood that healthcare IS NOT JUST ABOUT THE MEDICINE. She impressed me so much that I came home and wrote a compliment on the CVS website...............

I went to your Minute Clinic today to receive my flu shot. I had such a positive experience that I would like the pharmacist's supervisor to receive my compliment. Your pharmacist, Arsema, deserves recognition for her amazing work. What a compassionate, kind, competent, and gentle soul. She represents CVS beautifully. In fact, I watched her interacting with other customers prior to my turn, and every person who came out of the clinic (after receiving a shot of all things), was smiling. They were smiling because of Arsema. Arsema understands the psychosocial nature of medical care and the importance of connecting with her patients. Within seconds she understood my apprehension about the vaccine, but she quickly made me feel at ease, I felt heard, and also I felt no pain receiving the shot. Knowing that Arsema works at CVS, would make me want to come back to your store for future health care needs. 

Thursday, October 1, 2020

Thursday, October 1, 2020

Tonight's picture was taken in October of 2003. Mattie was about a year and a half old by that point. It was then that we started to take him to Fall festivals. We practically went to one festival every weekend in the Fall. It was a great activity for Mattie, as it involved being outside, sometimes meeting farm animals, games and of course pumpkins. There of course was always food at the events, but Mattie wasn't motivated at all by food. This was the one area we were totally different! In any case, this photo is priceless. I just love the way Mattie was checking out his encounter with the goat. 

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

• number of people diagnosed with the virus: 7,268,298
• number of people who died from the virus: 207,605

Things are challenging enough in California for my parents, but their landlord is complex. Or plainly put, DIFFICULT. Today I received a text message from the landlord letting me know that my parents broke his dishwasher. That shards of glass were found inside the machine, and broke the motor. I checked with my mom and she reports that she and the caregivers broke nothing. Likewise, Peter and I never broke a glass while visiting. So we are at a standstill, as he feels we owe him a new dishwasher for his property. To me it is a matter of principle and integrity. We would freely admit if we broke something, and we are reporting that this never happened. Of course we have no proof that the machine was broken before we moved in, nor does he have proof that we actually broke it. 

Given my prior interactions with this landlord in both June and August, I feel he is slowly making his case to get my parents to fix every broken thing in his house. I am not sure why he wrote to me. He may have thought I was going to be more reasonable than my mom, or that I could help speed up the disagreement process. However, in all my years of living in DC, anytime I needed something fixed, it was fixed. NO ONE in our complex ever blamed us for breaking something. So I am truly irritated by this landlord's accusations. Since I have lived in our unit, I have had maybe four dishwashers! All replaced the day the washer broke. My mom has been without a dishwasher now for weeks. Which is unfair. 

Needless to say, I wrote a dilly of a message to the landlord. He says he got every appliance inspected before my parents moved in. Great, I said I want to see that documentation, because moving forward we will not be paying anymore for his defective appliances! I wasted more time today with his foolishness and I do not care for people challenging our integrity. 

Meanwhile, I began a 12 hour continuing education class today entitled, Certified Clinical Trauma Professional (CCTP) Intensive Training Course. I got through the first two hours today and at first, I wasn't sure I was going to relate to the two instructors. But they grew on me, and despite being leaders in their field, I appreciated their humbleness. Within their training, they discussed the neurologist, Viktor Frankl, who was also a holocaust survivor. Under the worst of circumstances Frankl still found joy, peace, love, purpose, and meaning while living in Auschwitz. This speaks to the human spirit and the inherent hope within Frankl. As having this inner hope, provides the courage to evolve from incredible horrors and focus on what we can control in our lives.  

Wednesday, September 30, 2020

Wednesday, September 30, 2020

Tonight's picture was taken in September of 2003. Mattie was a year and a half old and FULL of energy. My joke was that Mattie had two speeds, on and off! From the moment Mattie woke up in the morning, he was alert, engaged, and wanted you to interact with him and participate in his world and play schemes. In many ways, it was as if Mattie knew he wasn't going to be with us long, so he had to pack as much into a day as possible. Mattie, was the boy who did not like napping and and only did it as a baby. 

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

• number of people diagnosed with the virus: 7,221,278
• number of people who died from the virus: 206,693

After 11 years of raising funds for Mattie Miracle and trying to figure out how to do this, we had a zoom call with a professional fundraiser today. Given that my background has NOTHING to do with fundraising, it truly is amazing, I think, that Mattie Miracle has grown to where it is now. Think about this this way, in our first year of operation, we brought in about $12,000 from fundraising. Now over a decade later, we are raising close to $200,000 a year. That may not sound like a big leap, but it is!

We got connected to this professional today from our own philanthropy contact at Mattie's hospital. This is a colleague of our contact, who left working for a hospital system to run her own consulting business. Needless to say this consultant is well versed in health care and cancer to be specific. Hiring someone to work with us is a process. It has to be a good fit. This consultant knew this without us even saying anything! So that to me speaks to her sensitivity and extensive experience helping other non-profits. For Peter and I, Mattie Miracle is very personal and to come into our fold means that first you too must be passionate about enhancing cancer care. In addition, what both of us noticed today on the call was the consultant wasn't jumping to solutions. She wasn't claiming to know what we do, nor was she claiming to know how we should do it better! She is an outstanding listener, but also very adept at understanding the situation, and providing guidance and direction. 

As we move into the next decade of Mattie Miracle's work, it makes sense to work with a professional development executive. I found it fascinating to hear her insights on Mattie Miracle. Because she says many non-profits are waffling in their vision, mission, objectives and goals. Whereas we do not have a lack of content, nor do we ever drift from our mission. I sometimes take that for granted, but she pointed this out, as she finds many organizations hire her for this alone. Peter and I have a vision for the next 5-10 years and we were able to articulate that to her in the meeting. Her initial reaction was that there are individuals and other Foundations within our community who may interested in partnering with us. Which of course is exactly our goal! 

We also want her to assess our current fundraising events. Because we need feedback on their strengths and weaknesses. How they can be tweaked or what we should consider adding. The wonderful part about this was hearing from a professional that some of the frustrations we have experienced with events are not uncommon. She feels the issues aren't us, our message, or our content. The issue is that we are not targeting people (major gift donors) to our events who are truly passionate about the cause. It was very insightful and I look forward to learning how to find these individuals. 

I also asked her for an opinion on working with student interns to help with fundraising and marketing, and she laughed. Which confirmed my thinking all along. As a former educator, I love students, but I am also aware of their competing priorities, their insights, and their limited time to commit to certain tasks that require attention to detail and persistence. I am happy we are now in a position to seek the advice of a professional and of course it is my hope that this will be a good fit, that ultimately benefits the Foundation.  

Tuesday, September 29, 2020

Tuesday, September 29, 2020 -- Mattie died 574 weeks ago today. 

Tonight's picture was taken in September of 2002. Mattie was five months old and beginning to try solid foods. This was Mattie eating rice cereal, which is the first thing most pediatricians tell you to try. Mattie LOVED it! Do note that Mattie ate in his car seat! He preferred it over a high chair. I am not sure what I love more in this photo.... Mattie's grasp on the spoon or how intently he was looking at me. 

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

• number of people diagnosed with the virus: 7,180,179
• number of people who died from the virus: 205,729

This rainbow was right outside our door last night. We had a shower burst and then the sun came out. The next thing I heard was Peter calling me to look outside. Glad I did! 

I think there are many things that can trigger existential anxiety or crises. We all have them, it is the beauty of being human. These crises leave us questioning our existence and purpose. Today was one of those days for me. Some causes of such a crisis include loss of a loved one, realizing our own mortality, feeling dissatisfied with life, a major life event/change (i.e. moving to a new place), or guilt about something that has happened. In my case, my crisis all revolves around Mattie. 

While walking and chatting today, Peter mentioned the notion of moving out of the city. Since life as we know it no longer exists here, both from the loss of Mattie perspective and the immense changes we see in our neighborhood and community. Now I am sure many people don't react well to change, especially if it involves moving. It is one of those top ten life adjustments. But moving means much more than change to me. It causes an existential crisis. Mainly because it is the people around me and the surroundings that help me keep Mattie's memory alive. My friends knew Mattie and then knew me as a mom. Moving anywhere causes an additional stressor. Because "new" people won't know our story, they won't understand our journey, and truly I believe without these common surroundings, my identity is lost, confused, or non-existent. So as Peter knows, certain topics cause me to shut down or ignore them. Not too mature, but I need to work things through in stages, in order to come to terms with our next chapter.

For Peter and I, we have been dealt a blow that not everyone can understand. Though Mattie died 11 years ago, his loss causes constant waves in our life. Like a pebble thrown in a body of water. We went through child rearing and actively being parents for 7 years, and then with a snap of one's fingers once Mattie died, are lives look more like two retirees. That may sound wonderful to someone reading this, but it isn't! Not when you are younger and had so many years ahead of you to raise and nurture a child. I am dealing with many mixed up emotions and thoughts, but it was good that Peter started the conversation, as he knows I will need time to internally work out my feelings on this. 

As usual, Roosevelt Island did not disappoint today! Three wild turkeys crossed in front of us. 

A preying mantis on the boardwalk!

Sunny chasing a snake!

After a long walk, Sunny loves riding in the car, with the wind going through his fur!

Monday, September 28, 2020

Monday, September 28, 2020

Tonight's picture was taken in September of 2002. Mattie was five months old. At that age, "tummy time" was what all pediatricians were pushing on parents. I certainly tried to encourage Mattie to stay on his tummy to play, but I was never very successful. It wasn't a position Mattie cared for, not even when he was a toddler or preschooler. Nonetheless, I tried music, jumping around, and all sorts of distractions to keep Mattie engaged on his tummy. But Mattie had a mind of his own, and he did not follow the typical developmental milestones. As Mattie did away with tummy time,  crawling, and toddling around. 

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

• number of people diagnosed with the virus: 7,134,874
• number of people who died from the virus: 204,905

Today would have been my maternal grandmother's 113th birthday. She died at the age of 87, on January 20, 1994. She and I were very close. She lived with my parents after her husband died from colon cancer. When I arrived in the world, my grandmother was already living with my parents and I grew up thinking everyone lived with their grandparents!

Naturally I only knew my grandmother as a child and teenager. Never really appreciating all she had been through. She understood and lived with grief and loss as her second child died shortly after birth and her husband died when she was only 53 years old. Back then we never spoke about these losses and as a child, it wouldn't have dawned on me to really ask. Of course now I wish I knew more and would have captured her insights. Yet despite all she survived, she was always happy, loving, bright, and a compassionate woman. I learned a lot from her..... how to cook, how to clean, my love for animals, how to sew, and the patience and energy to be a caregiver. 

My Sunset!

Since my procedure last Wednesday, I have had one issue after the other. Besides bleeding and cramping, I have had digestion issues, heartburn, and of course a migraine. I have felt debilitated. Given my experiences at the hospital where the procedure took place, I feel compelled to  write to the administration. They need feedback about their nursing staff and the general overall disregard for the whole patient. The health care providers I was working with had no idea about my previous experience with hospitals, nor did they care. In the age of trauma informed care, none of it was happening there. I also think.... what if the procedure revealed I had cancer? Where was their compassion and understanding for the patient and what fears the patient may have going into a procedure. The answer is none of this was on the forefront of their minds. They were performing their jobs, but forgetting about the importance of the emotional well-being of the patient. In any case, my mission this week is to compose a letter and send it!  

If it's a week day, we try to escape to the Island to walk Sunny. It was a beautiful day today, it felt like summer. Turtles were popping up in the Potomac River. 

The resident Great Blue Heron was on parade, and it makes you forget about the complexities of the world. The fact that we are going into month 8 of being locked down, and the list goes on. 

Seems like no island visit is complete without a deer sighting!

On the Foundation front, we announced today that our annual candy drive is going virtual this year. Prior to announcing this, we conferred with the hospitals we support to find out how they felt about accepting candy. 

Naturally our FREE snack and item carts need to be stocked with candy, and the Carts are more popular than ever! Families are turning to the Carts because it is close to impossible to leave their child's room due to COVID-19. In any case, we have eliminated candy sorting this year and have requested that all candy be donated in its original store bought vacuum sealed bag. No opened bags will be accepted this year. To learn more about our Amazon Wish List or where to drop off candy, go to: https://www.mattiemiracle.com/events

Sunday, September 27, 2020

Sunday, September 27, 2020

Tonight's picture was taken in September of 2003. Mattie was about a year and a half old. I found all sorts of things to keep Mattie busy during the day. He most definitely needed constant stimulation, as he had a very active mind.  We even did computer time together. Back then, I knew all the educational children's links to visit. We would play games to learn words, numbers, and colors. Mattie loved the sites that played music, and we used to sing away to some of the songs we found along the way. Peter and I heard these songs so often, that we probably could still sing some of them today.

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

• number of people diagnosed with the virus: 7,105,604
• number of people who died from the virus: 204,738

Yesterday Peter undertook a project for Sunny. To build a staircase up to our bed. When we first got Sunny, he would jump on our bed every morning. Now that he is older, he stays away from the bed, since it is so high off the ground. 

After Peter constructed the staircase, we introduced it to Sunny. He was not sure about it at first, but eventually went up!

He found his way!

Meanwhile, last night, guess who was sleeping on the newly built stairs? That's right Miss Indie! The beauty of a cat. 

This morning, our neighbor dropped off a Paw Paw fruit! I honestly never heard of such a thing. But he encouraged us to try it, as he bought it at the local farmer's market. 

Pawpaws grow from the Great Lakes down to portions of the Florida Panhandle. They easily bruise, so they have a short shelf life and therefore aren't a good business model of big agriculture. Pawpaw trees are considered the largest edible fruit trees native to North America. They produce greenish-blackish fruit, usually three to six inches long. The flesh is pale to bright yellow and contains a network of glossy, dark brown seeds. A pawpaw's flavor is tropical: a combination of mango-banana-citrus. It is also said that they have a subtle kick of a yeasty, floral aftertaste a bit like unfiltered wheat beer. However, the texture of the fruit reminded me of an avocado. 

The seeds are HUGE! To me it looked like a kidney bean. But the Pawpaw seeds taken in high doses can be toxic, the seeds and bark of the plant reportedly have medicinal properties that make a powerful anti-cancer drug, as well as a natural pesticide. The seeds of the pawpaw contain several biologically active compounds called acetogenins.

The cut fruit! I tasted maybe a pinky nail sized piece of fruit and that was enough for me. I disliked it and spit it right out. Perhaps it is an acquired taste, but I can see why this fruit never became popular. 

We went out for a second long walk with Sunny today, and our neighbor has all these wonderful flowers. Starting with my favorite, the sunflower. 

She has a field of cone flowers!

How about this coleus? A color only found in nature! Like a cranberry, but vibrant and seems to be telling me Fall is here.