Saturday, October 12, 2019

Saturday, October 12, 2019

Tonight's picture was taken on October 26, 2002. Mattie was about to celebrate his first Halloween. Of course he had no idea what it this holiday was about, and we did not take him trick or treating that year either. However, we introduced Mattie to this walker early on in his development. We nicknamed this gadget, "tot wheels." Mattie loved the freedom of independent movement and would zip around in our commons area and inside our home. You would have thought he'd crash into chairs and furniture. But somehow he never did. Mattie had a good understanding for spacial relationships right from the beginning.  

Quote of the day: Cows have a higher body temperature than humans — about 101 degrees Fahrenheit — and their heart rate is slower, both qualities that help people relax. ~ Suzanne Vullers

My lifetime friend, Karen, sent me an article which I posted below about cow cuddling! No you did not misread what I just typed. I am literally talking about people paying $75 to spend time with an 1,000 pound bovine friend! It may sound ridiculous, but it is happening! 

The article even talks about how Michigan State University students pay to brush the school's dairy cows to reduce stress before finals. How do you like that? Apparently cows are smart and pick up on emotional cues. Who would have known. 

I have never had a hug from a cow, but I can imagine it would be soothing, if it is at all similar to petting, brushing, and hugging Sunny. There is something special about bonding with a bigger and warmer animal. No words are necessary, but still communication is happening. 

Now if a cow is too far reaching for you, how do you feel about a cat? Well in DC and Los Angeles, there is a company called Crumbs and Whiskers. Here you can pay $22 to spend 90 minutes petting cats and having coffee. You can even adopt cats from this organization. Here's the bottom line, at the end of the day, interacting with animals is A LOT easier than our fellow humans. Animals are naturally loving, want to interact with you, and accept you however you are! 


Cow cuddling lets people relax with help of friendly bovines:

https://www.today.com/health/cow-cuddling-lets-people-relax-help-friendly-bovines-t163117

In DC and LA:
https://crumbsandwhiskers.com/

Friday, October 11, 2019

Friday, October 11, 2019

Tonight's picture was taken on Halloween of 2003. Mattie was a year and a half old. It was the first year, he had some understanding for the nature of trick or treating. As you can see, Mattie LOVED pumpkins. Actually he gravitated to all things orange. No surprise that year that Mattie was a "pumpkin" for Halloween.


Quote of the day: Everyone thinks of changing the world, but no one thinks of changing himself. ~  Leo Tolstoy


Day one, post root-canal and there was no resting for me! I had a five hour long licensure board meeting. There is always an open session portion of the meeting in which the public can attend, ask questions, and learn about updates. This is then followed by an executive session, in which the public is asked to leave and the board members consult with the board attorney and staff about applications, ethical issues that arise for our licensees, and other matters.

I won't get into specifics, but a visitor at today's meeting, was quite inspirational. He was incarcerated at a young age, and now many years later, has put himself through school and is devoting himself to helping others. His story is quite powerful and what was equally noteworthy is he said he never wanted hand outs, he did not want things given to him, and he felt like the only one who was responsible for turning his life around is him. You can't see or read what I know about this man, but if you did, I think it would give you pause. Because if you just viewed him based on his arrest and conviction, you may conclude..... this person shouldn't be working with anyone. In any capacity! But that would be a loss to our community, because he is actually a great role model for our city. He understands the pressures on the street, he also understands what can happen without support and guidance at a young age. Because with youth sometimes one physically acts before one thinks. I have to say after he spoke, all the board was left with tears in our eyes. I assure you this rarely happens. 

Today's moral message to me was that we may not be able to control our life circumstances, but we most certainly have control over how we react to them and to others in our lives. 

Thursday, October 10, 2019

Thursday, October 10, 2019

Tonight's picture was taken on October 20, 2002. How do you like that face??? Mattie was six months old and other than holding him, he really did not like any other form of transportation. He absolutely hated his stroller. As his face indicated. Eventually we figured out Mattie liked riding in a backpack, but until that point it was trial and error. I just think this photo was a classic. 


Quote of the day: Inside your tooth, beneath the white enamel and a hard layer called dentin, is a soft tissue called pulp. This tissue contains blood vessels, nerves and connective tissue, which help grow the root of your tooth during its development. A fully developed tooth can survive without the pulp because the tooth continues to be nourished by the tissues surrounding it. ~ American Association of Endodontics

After dealing with an issue with my lower molar since April, I finally went to see an endodontist today. I am not sure what I was expecting. I thought he'd say I was fine and would tell me to give myself more time to heal from the partial crown procedure. What I wasn't expecting was to remain in the office for three hours and go through a root canal. 

I have read many website about how root canals are safe and do not hurt, because you are anesthetized. Well, it is true, it wasn't the worst pain I experienced, but it wasn't good either. In fact, I was dealing with so much pain, I landed up getting about 8 shots throughout the procedure. 

Before he concluded I needed a root canal, he did external testing and x-rays. The x-rays showed NOTHING. It looked like everything was fine. However, his external tests showed something different. As he tapped on my teeth, exposed them to something cold like ice, and had me bit down hard, he could tell based on my reactions a root canal was necessary. 

I am still perplexed how my x-rays were fine, but when he opened up my tooth to do the root canal, he could see that my lower molar had two roots. One of the roots was completely dead and the other root was very inflamed. Also despite being numb, I could still feel pain with his drilling. He said that was another indication that a root canal was necessary. Because the periodontal ligament (fibrous connective tissue structure, with neural and vascular component, that connects the root of the tooth to bone) was inflamed. 

During a the procedure, the nerve and pulp are removed and the inside of the tooth is cleaned and sealed. If you want to read more about a root canal and the lengthy process, go to: https://www.dentaly.org/en/root-canal-treatment/. I can see why your average dentist doesn't do this. First of all it is very time consuming, it does involve pain, a blood supply, and nerves in the tooth. I am just hoping to feel better, because now my mouth is very sore from shots, holding it open for hours, drilling, and filing. He estimates it will take me two weeks to fully heal. I am counting...........

Wednesday, October 9, 2019

Wednesday, October 9, 2019

Tonight's picture was taken in October of 2002. Mattie was six months old and checking out this pumpkin place mat  Peter's mom sent him in the mail. I am quite certain Mattie loved the color orange from day one. Which is why Mattie Miracle's signature color is orange. 



Quote of the day: People think grief somehow fades with time. "Time heals," they say. What a crock. There's no cure for this. You can't accept it. You can't absorb it. Grief is a rabid animal you hold at bay. ~ The InBetween, "Made of Stone" 


The saga of the tooth continues. What started out with routine maintenance in April of 2019, has become a LONG journey. I would never have guessed trying to replace my old silver filing with a partial crown could be so disruptive to my life. In the process of this ordeal, I have come to see that I don't LOVE the way my dentist's office is managing me or the whole situation. 

I continue to have nerve pain and my dentist recommended I see an endodontist. A dentist with more training, who specializes in nerve issues and root canals. Given that I call my dentist's office so often, I now know his office staff! I also know my dentist typically refers patients to one or two endodontic practices in DC. Not the one he referred me to! In any case, as soon as my dentist said I need to see a specialist, I was pro-active and found two endodontist offices I really liked and was planning on contacting them. I was until my dentist wrote me a referral to another office. Not one of the two I researched. Naturally if your doctor recommends someone, you take that seriously. So today, I was scheduled to meet the endodontist recommended to me by my dentist. 

Well the appointment never happened. It did not happen because I canceled it. Have you ever gotten a bad vibe from a doctor's office? Well this is the feeling I developed regarding this endodontist practice. I did not like their website (it seemed simplistic and not professional), but their front office staff was down right loopy. I had asked them three times to get notes from my dentist about my issue and recent visits. Needless to say they never did it. Then last night before I went to bed, I decided to look up both endodontists in the practice to see if they were licensed in the District of Columbia. How do I know to do this? I know because I have been a chair of a DC licensure board for years. To me, having licensure is important, as it safeguards the public and also assures a certain level of education, training, and experience from a health care professional. 

I literally lost it last night when I couldn't find the licensure information on these doctors through the DC Department of Health's website. This finding triggered two emails. One to my dentist and the other to my own licensure board staff. As they have access to a more comprehensive database to look up professionals. It turns out after some digging, the staff did find out that the doctors were licensed. However, by that point I felt it was a sign. So I cancelled the appointment and instead called the practice I wanted to see. Mind you my dentist typically sends people to the practice I researched and liked. However, he is trying to expand his network of providers and basically wanted me to try this newer practice. NO THANK YOU! Given I have had a nerve issue since May, I want a professional who has seen these issues for many many years. 

In any case, for my local readers, if you want to look up a health care professional in DC and find out if they are licensed, go to:
https://doh.force.com/ver/s/. I think it is important patients know who they are seeing! DC isn't the only "state" with such a website. Every state has its own department of health which licenses professionals and allows you to "look up" the license of a behavioral health or medical health care professional. 

Perhaps it is my experiences with Mattie, or maybe it is just me. I can get vibes about doctors and their offices, and once I get that bad feeling, there is no way I can turn back. I view this as another lesson I have learned from the Mattie playbook!

Tuesday, October 8, 2019

Tuesday, October 8, 2019 -- Mattie died 523 weeks ago today. 

Tonight's picture was taken on October 26, 2003. Mattie was a year and a half old and very intrigued by Patches, our cat. As you can see, Mattie wanted to touch or grab the cat. Patches was very perceptive and knew how to protect herself without hurting Mattie. Given his noise, running around, and antics, she never tried to scratch Mattie. She never hissed at him either. Somehow she got it, that he was an important member of the family and she had to behave. 





Quote of the day: Generosity isn’t an act. It’s a way of life. ~  Chip Ingram

So you maybe asking yourself, who is this fellow? This is Dr. Ryan Candelora, my parent's dentist. My parents dentist retired and Ryan took over the practice. Keep in mind that my parents asked our long time family dentist (OF MANY MANY YEARS) and I have asked my own dentist in Washington, DC to support the Mattie Miracle Cancer Foundation. Forget it, we have gotten no where with either of them! When my parents met Ryan, they told him our story and his response was he wanted to help. Ryan in my opinion lives out tonight's quote. Generosity for him isn't an act but his way of life. If he were in DC, I would switch dentist's immediately. 

I had the opportunity to talk to Ryan by phone about two months ago. It was a great call and frankly he got Mattie Miracle's psychosocial mission right away. I did not have to do much explaining. On the call I highlighted our free snack and item carts that we fund at local hospitals and told Ryan that we are always in need of toothbrushes. The thing is, if you have to unexpectedly take your child to the hospital, you land up focusing on getting to the hospital and not on items you need to bring with you.... like toiletries and a toothbrush. Which is why these items on our carts are considered true gifts. 

Look at the box Ryan mailed to me this week. It is filled with 432 toothbrushes. But it gets better. He will be sending me 400+ toothbrushes every 6 months! Indefinitely! Leaves you speechless no? I provided the same information and written request to my dentist, and I feel the only thing it accomplished was it took up space in his office's dead letter pile! 

Rather ironic, that I need to get connected to a California dentist to get our East Coast carts stocked with toothbrushes. Needless to say, we are very honored to be working with Ryan and are grateful that he is helping us live out our mission. 

Monday, October 7, 2019

Monday, October 7, 2019

Tonight's picture was taken on October 12, 2003. This was Mattie's first time attending a Fall Festival. This one was held in Leesburg, VA and it had a wonderful petting zoo for young kids. I love this photo I took of Peter introducing Mattie to a goat. Look at his little hand trying to reach out and touch the goat. To me it is priceless. I am so glad we did every fall festival possible with Mattie over the years and got him out and about on the weekends. Exploring and experiencing. 







Quote of the day: What you see and what you hear depends a great deal on where you are standing. It also depends on what sort of person you are. ~ C.S. Lewis


Tonight's quote resonates with me. Because to me the quote is talking about perception. I fully admit that in a medical setting, I may see and hear things that the average person doesn't absorb. I am confident in saying that because of living over a year in a hospital caring for Mattie. I learned a great deal and in the process the sheer experience also impacted me emotionally. 

Today Peter had his first colonoscopy. For years I heard people talk about how horrible the experience is, especially the prep! They should make a video of Peter doing the prep, because he handled it like it was just an ordinary day. In fact, I think my anxiety about the prep was making Peter edgy, so I had to dial back my commentary until after this was all over. I am thrilled Peter was able to tolerate the prep and come through the process beautifully. However, while waiting for him in the waiting room today, I was beginning to get edgy because the timing was off. I expected to be called back sooner than I was, so naturally my mind wandered. But I was able to get a hold of myself and rationalize that not every procedure lands up like Mattie's. 

Fortunately it all turned out great and all the medical staff we interacted with were kind, professional, and super efficient. One of Peter's nurses, Debbie, was a peach. She came out to get me and brought me back to Peter, who was recovering from sedation. She got me a chair and while checking Peter, she apparently was checking me out too. I was too distracted to truly pay attention to her. Until she literally put her face into mine to tell me she loved my skin and wanted to know my secret. Any case we got into talking about our mutual Italian heritage and naturally this started a whole conversation about food! Meanwhile, Peter was being patient, listening, and getting his bearings. 

Hearing Peter reflect on being sedated with propofol today was enlightening. I can't tell you how many times Mattie was sedated with propofol to get scans and procedures. Not to mention was given a large dose of it during his dying process. We always saw propofol through Mattie's eyes, but now both of us have experienced it personally. Which enables us to see just how frightening all of this had to be for Mattie. One minute he was up and talking and then next minute he woke up unable to know what happened and where he was.... it was disorienting and also further reminded him of his lack of control. 

Needless to say, I get to spend my Halloween with this gastrointestinal team. However, I have already prepared them that I am not as strong as Peter. Smells, tastes, and no solid food for 24 hours are bad combinations for me. They trigger nausea, vomiting and migraines. The perfect trifecta. 

Sunday, October 6, 2019

Sunday, October 6, 2019

Tonight's picture was taken in October of 2003. On the TV, was a video in the Little Einstein series that I was playing for Mattie. But this was how Mattie watched a lot of things. He could listen and focus on multiple things at one time. So while absorbing the music and the visuals, his little hands were always busy. Mattie loved to take out all of his videos that were stored under the TV, and examined and played with them. He was our ultimate multi-tasker! I would say the only thing on TV that got Mattie's 100% attention was Elmo on Sesame Street. Mattie could be anywhere in our home, but if he heard Elmo, he'd quickly find his way to the TV. 


Quote of the day: When you look into an abyss, the abyss also looks into you. ~ Friedrich Nietzsche


Today my dad sent Peter and I the poem entitled, And Then It Is Winter. I copied it below. The poem was written through the lens of an older adult, looking back at his/her life and wondering where had time gone? How did time fly by so fast? With age, one becomes reflective and develops a certain amount of wisdom. To me this poem is meant to spread the wisdom that comes with age to those who are younger. With the ultimate message of live in the moment and don't wait until tomorrow to do something, do it today! 

When Peter and I read this poem, it evoked similar feelings for both of us. You will read Peter's reaction below. Mind you Peter and I read it on separate computers, and at different times during the day, yet we both felt the same way about the content! In essence, Mattie's diagnosis and death set about our own internal "winter." Though Peter's words may cause you to pause, they are our reality. A reality that we tend to keep to ourselves, because no one wants to hear it. It's too depressing! 

AND THEN IT IS WINTER  

To those who are older, and to those who are not quite there yet: This is a beautifully written piece, and so true. Take a couple of minutes to read slowly, then gaze out the window of your mind onto the landscape that is your life and ask the question, “What will you do to cultivate the years that remain?”

You know time has a way of moving quickly and catching you unaware of the passing years.  It seems like yesterday that I was young, just married, and embarking on my new life with my mate. Yet in a way, it seems like eons ago, and I wonder where all those years went. 

I know that I lived them all.  I have glimpses of how it was back then and of all my hopes and dreams.   But, here it is... the winter of my life, and it catches me by surprise... How did I get here so fast? Where did the years go and where did my youth go? I remember well seeing older people through the years and thinking that those "older people" were years away from me and that winter was so far off that I could not fathom it or imagine fully what it would be like.  

But, here it is.. my friends are retired and getting grey... they move slower and I see an older person in myself now.   Some are in better and some worse shape than me... but, I see the great change... Not like the ones that I remember who were young and vibrant...but, like me, their age is beginning to show and we are now those older folks that we used to see and never thought we'd be.

Each day now, I find that just getting a shower is a real target for the day!  And taking a nap is not a treat anymore... it's mandatory!  Cause if I don't on my own free will... I just fall asleep where I sit!

And so... now I enter this new season of my life unprepared for all the aches and pains and the loss of strength and ability to go and do things that I wish I had done but never did!!   But, at least I know, that though the winter has come, and I'm not sure how long it will last... this I know, that when it's over on this earth... it's over.   A new adventure will begin!

Yes, I have regrets.  There are things I wish I hadn't done... things I should have done, but indeed, there are also many things I'm happy to have done.   It's all in a lifetime.

So, if you're not in your winter yet... let me remind you, that it will be here faster than you think.  So, whatever you would like to accomplish in your life, please do it quickly!  Don't put things off too long!!  Life goes by quickly.  So, do what you can TODAY, as you can never be sure whether this is your winter or not!  

You have no promise that you will see all the seasons of your life... so, LIVE FOR TODAY and say all the things that you want your loved ones to remember.. and hope that they appreciate and love you for all the things that you have done for them in all the years past!!  

"Life" is a GIFT to you.  The way you live your life is your gift to those who come after.   Make it a fantastic one.  

Remember:  "It is Health that is real Wealth and not pieces of gold and silver."  

==========================================

Peter's reaction:

Although I am not your age (Peter is talking to my dad), I can easily see how time is moving much faster and has continued to pick up its pace with each year that I grow older. Case in point: Mattie died over 10 years ago (3,680 days ago to be precise). Ten years... just seems like yesterday. It's almost hard to believe that Mattie was born 17 years ago.

I do not want to speak for Vicki, but I feel a particular form of Winter has already descended on myself and Vicki with the loss of Mattie and the loss of all that came with the prospects of having a healthy, smart, growing and developing child that we could enjoy seeing and being a part of watching him grow up and mature.

We will never be able to experience any more of the "firsts" that come with raising a child beyond age 7... no graduations, sleep-overs, soccer games, birthday parties, holidays, family vacations, college graduations, first jobs, higher education, marriage, grandchildren... and the list goes on and on.

We also recognize that we will have no one to grow old with us, to be with us as we age, which is another collection of depressing topics and thoughts. All that has happened to us has deeply affected our lives, and those around us, as we have been permanently and irrevocably changed, and not in a good way.

I cannot think of one positive thing that has resulted for or happened to us because of Mattie's illness and death. Sure, we have helped other people, but I think Vicki and I know that we are forever broken, and while we have found a way to wake up each day and function, I find little joy or happiness in my life anymore. Yes, we have interesting moments, see new things and some fun times, but they are fleeting as we then submerge back into the abyss of what life has done to us.

We will keep on, as we have always done, but reminders to make the most of what we have today are important, as I know we will never be able to "do-over" each day, year or decade or moment.