Tonight's picture was taken in June of 2002. Mattie was two months old and I would say that Mattie was a great power napper. He would shut down for a few minutes and then perk right back up..... as if he slept for two hours!!!
Quote of the day: Almost everything will work again if you unplug it for a few minutes, including you. ~ Anne Lamott
Tonight's picture was taken in June of 2005. Mattie was three years old. That spring, Peter's mom, mailed this cute whale kiddie pool to Mattie. It was the perfect size to fit on our deck. Mattie enjoyed water play, and typically the pool would be filled with all sorts of toys and creative play schemes would unfold. It is amazing all the fun we had on this deck, and it wasn't a very large space. Therefore the size of something is not what matters, but that connections, love, and memories that are made is what counts. We made plenty of wonderful memories at our townhouse in Washington, DC, and whenever I am in the city and drive by, I look up and remember our years with Mattie.
Quote of the day: As you know, life is an echo; we get what we give. ~ David DeNotaris
If tonight's quote is accurate, then all I can say is I must have done something wrong. The day to day existence of being a caregiver is hard to describe. Of course in my perspective this isn't my first rodeo with caring for someone I love. I would have hoped that I served my time and then some given the heartache of watching Mattie endure cancer treatment and die. But there is so much about life that we have no control over, and despite the exhaustion and at times mixed emotions I manage, I can still see the kindness of those around me.
My exciting news is as of today, I have proceeded all 324 donations we received from the Foundation's Walk 2023. Every donor, sponsor, and raffle contributor has been acknowledged! I feel very proud of this accomplishment given what my days are like! Now I will be turning my attention to creating a Walk video this week. That is no easy task either, but I feel these videos are important for documentation purposes!
Tonight's picture was taken in June of 2007, on Father's Day to be specific. Mattie was five years old, and that day we went for a Duck Tours ride in Washington, DC. The beauty of this tour is it covers both land and water. I thought Mattie would find the vehicle fascinating as how many terrain vehicles can also serve as a boat? The tour company gave us whistles in the shape of a duck's bill and while on the ride, it was a big adventure for all of us.
Quote of the day: Is it possible to have a “Happy” Father’s Day after a loss of a child? Yes, but for very different reasons than most people think. The happiness comes into play when you reflect on the time you spent with your child, although you wished you had more time. You’re happy because it was an honor to be their dad. The love you feel inside for that child makes you smile and hurt at the same time. The happiness for these fathers does not come from a gift that was wrapped up real nice and given to them on this day. The happiness comes from the gift of being their dad. If you know a dad that has experienced the death of a child, don’t be afraid to reach out to him on this day or any day for that matter. As difficult of a day it is, he would love to hear from you. Someone acknowledging that he is a dad, a dad that has experienced the death of a child and is just trying to live a life to make his child proud. ~ Kelly Farley
Since January, Peter has been committed to getting healthier, losing weight, and being more active. To date he has lost 26 pounds and began running each day for the last month.
Tonight's picture was taken in June of 2002. Mattie was two months old. We were sitting outside on our deck in Washington, DC and I snapped a photo of my two boys. I love the facial expressions on both Peter and Mattie. Peter looked happy and in love with the bundle he was holding and Mattie looked focused and in deep concentration.
Quote of the day: The human capacity for burden is like bamboo - far more flexible than you'd ever believe at first glance. ~ Jodi Picoult
I am so glad that Mary Ann sent me this photo because it reminded me of times I spent with my friends, the beauty of our city garden that we created each spring, and what it also helped me see is that I worked hard to find my way out of great devastation from losing Mattie. It took great strength, courage, and determination to want to survive and to get to where I was in 2016.... which was a more stable place than when Mattie died in 2009.
In a way, the photo instills hope. Because I would say I am once again facing a difficult crossroads in my life. Caring for two parents with dementia takes on a life of its own, it consumes me, my energy, my focus, and there are consequences both short and long term on my life and my relationships. I am well aware of things falling apart all around me, and this photo helps to remind me that I do have what it takes to find my way through this too.
Tonight's picture was taken in June of 2003. Mattie was a year old. By this point, we needed to have a big play pen in our living room, because there were times I needed a minute to do something, and I did not want to worry about Mattie hurting himself. Here's the ironic part! Look who was in the play pen with Mattie? Though it was a space for Mattie, Peter and I landed up in it, playing and entertaining Mattie. When I look at this photo now, it makes me laugh. Not sure I was laughing back then, as Mattie was a fellow who wanted us to engage and be with him every minute of the waking day. Maybe he knew something that we didn't, that we would only have 7 years together. Either case, we both devoted our time and attention to Mattie, and we have no regrets about this decision.
Quote of the day: Don't judge each day by the harvest you reap but by the seeds that you plant. ~ Robert Louis Stevenson
Mattie Miracle started a grant program in 2022. The grants award families up to $1,000 for a fun activity, wish list item, or family trip. We started this program in memory of our board member, Margy, who died from her own cancer battle. For twenty years, Margy ran her own childhood cancer non-profit, and granted countless mini-wishes to children in the Northern Virginia area. When Margy died, I suggested to her family that we keep Margy's legacy work alive, and created the M&M (Margy and Mattie) Wishes Program.
To date, we have awarded 12 wishes. The beauty of our Wishes program is if a request needs to be addressed quickly, we do not have a lot of red tape, and can turn around support within days. In addition, unlike other grant programs, we do not have requirements regarding disease trajectory and age. Meaning we will grant wishes to children who are receiving end of life care as well as young adults receiving cancer care, as long as the diagnosis is considered pediatric in origin.
For the most part our grant program has been plugging away and slowly but surely social workers around the country are finding out about our support. I specifically chose not to put our grant application on-line, but instead to require families and social workers to email me first. Based on that electronic conversation, I can determine whether the match and fit makes sense in order to move forward with the completion of a grant application.
In any case, in the last two weeks, I received a request from out of state. However, unlike what typically happens, this mom seemed to have access to our grant application without emailing me first. I naturally read her email and the grant application. But you know when something seems off? Not right? Well throughout the process with this applicant, I have been questioning how legitimate a request this was? I asked the mom to be connected to the child's social worker and unfortunately that connection brought up more questions and red flags.
Fortunate for me, I know a social worker who works at the institution the child is supposedly seeking treatment. So I wrote to my contact. She was kind enough to look up the child's name, the social worker's name, as well as the physician's name supplied to me on the application! NONE of them are within the hospital's record system. Interesting no?
I run a non-profit to help others and truly I try to be as generous as possible with each person seeking support. However, I am glad that I followed my gut instinct and asked more questions about this application. It saddens me that anyone would take advantage of a non-profit, especially one which helps children with cancer, but this week was my first taste of dealing with a fraudulent request and this further confirms that the safeguards I have put in place regarding the application process serve a vital purpose.
Tonight's picture was taken in June of 2003. Mattie was a year old and we took him to Great Falls for an outdoor adventure. Mind you Mattie couldn't walk yet, but he spent a good portion of the trip in a backpack on Peter's back. Peter tried to snap a photo of Mattie and me together, but at that age, Mattie was a wiggler, and I found it almost impossible to hold him still.
Quote of the day: Every story I create, creates me. I write to create myself. ~ Octavia E. Butler
I came across tonight's quote and it immediately jumped out at me. Writing is a big part of my life. It was before Mattie got diagnosed with cancer, but after his diagnosis, my writing went to a completely new level. I am not sure how many other parents write daily on a blog? I should qualify my statement... how many parents who lost a child to cancer write each and every day, for 15 years! No matter where I have been, I haven't missed ONE day. I have taken the blog with me across the country, on vacations, and even on the high seas. But why do I write? Do I write just to write? Do I write because I have nothing better to do?
Of course the answer to these questions is NO! I write because it keeps me connected to Mattie and keeps the memories fresh in my mind. I assure you with time, the mind plays trips on you, and the subtleties of a relationship can become foggy and gray. Unless you work on it! Which is one of the things the blog does for me. The second aspect of the blog that is of great importance to me is the fact that it is an outlet to express myself. I know years ago when my dad was intact, he would argue with me about why I still write the blog! In his opinion it was a waste of time because the audience I had when Mattie was ill, is NOT the audience I have now. I tried to explain to my dad that writing is therapeutic for me. Sometimes I can express feelings and thoughts more easily here than I can actually in person. I am quite sure if I did not have this outlet, I would have lost it a long time ago.
Sure I may not have the hundreds of people viewing the blog as I did back in 2008, but again that isn't the point. I write because I need to, because it is part of my day, like brushing my teeth. My day wouldn't be complete without it and ironically, I am always amazed who continues to read my words, reaches out to me, and continues to follow my journey. I always wonder what inspires someone to continue this journey with me? I have no answers per se, but I do know that when I hear someone has read my words, it makes me feel like I am not alone, that someone else cares, and that something I am saying may resonate with you.
But as tonight's quote so eloquently points out...... by writing, I create myself. Or in my case, I remind myself WHO I AM. When caregiving non-stop for two people with dementia, it is very easy to lose track of every aspect of yourself.
Tonight's picture was taken in June of 2003. Mattie was a year old and though he wasn't walking or crawling, he was a live wire. I remember this blue whale jumpsuit and what always was noteworthy about Mattie was he looked good in just about every color. I would say the first year of Mattie's life he looked more like Peter. However, soon there after, I would say Mattie looked like me and had my personality.
Quote of the day: If you want to live a happy life, tie it to a goal, not to people or things. ~ Albert Einstein
It was another stressful morning, mainly because I had to get my dad to his memory care center and then quickly turn around and take my mom to physical therapy. I literally got up at 6am, in order to be able to leave the house at ten minutes to 10am, to drive my dad to his center. Yet no matter how early I get up, chaos ensues. After showering and dressing my dad, I got him downstairs for breakfast. It was at that point that I too tried to eat something before jumping to the next task. However, my dad eats super fast and then of course has to go to the bathroom. Which means that once again, I wasn't able to have breakfast.
Given that I had a pounding headache and took migraine medication, I needed to eat. But it didn't happen. My dad is 100% clueless about anything else around him. The only needs that matter are his own. Dementia has transformed his personality completely and in so many ways he is just like caring for a toddler.
After dropping him off, I then got back home to pick my mom up and drive her to the hospital, which is about thirty minutes away from our house. By the time I got her to the therapy session, she was not happy. My dad's decline is wearing on her physically and mentally and she admits that she doesn't like how it is impacting me and my life. My mom does have moments of clarity like this. In any case, this mood followed us into therapy. Her therapist could see that something wasn't right! So I gave her an overview of what we have been contending with at home and why my mom felt frazzled. My mom's therapist is wonderful and takes the time to connect, listen, and be supportive. Which is why I baked her banana chocolate chip bread and gave it to her today!
Peter comes back from Philadelphia tonight, but turns it around on Monday and heads to Portland, Oregon. While Peter is away, it forces me outside and into the backyard. As I feel compelled to keep his beautiful gardens going. I know that Sunny appreciates me being outside and I miss my Sunny walks and time together. As my dad is declining, so is Sunny. Chemo is taking a toll on Sunny's body, and weakening his back legs, affecting his appetite, and he has practically lost all of his hearing. When my mom's therapist asked me today how I manage, my response is.... ONE DAY AT A TIME!
Tonight's picture was taken in June of 2003. Mattie was a year old and though he wasn't walking yet, he was constantly on the go! He was a super multi-tasker. He loved his baskets filled with books. He literally would take every book out, flip through the pages, stack them, and used them like building blocks. Truly unforgettable!
Quote of the day: Make each day your masterpiece. ~ John Wooden
This morning, after my usual morning routine, I decided to bake banana chocolate chip bread for my mom's physical therapist. I absolutely love her therapist and she has been working with both of my parents since June of 2022. She has become an integral part of our lives and like me, she enjoys to eat.
It was a busy day of chores, followed by taking my parents to the eye care store, so we could order a new pair of glasses for my dad. From there, I took them out for frozen yogurt.
When I got home, I had to water the plants in our backyard. I had left my dad in his recliner, and I thought all of his needs were met. Forget it! In between watering, I came back inside and saw that my dad wasn't in his recliner. So I ran to the first floor bathroom, and there he was again. The sight wasn't pleasant, as he had pooped on himself, the floor, and his clothes. He did not know what to do, so he was in the process of spreading it around and making a mess. I honestly can't leave him alone for a second! My mom was upstairs and apparently did not or wasn't listening for my dad's movements. Needless to say, I dropped everything I was doing, ran for the garbage can, a pair of gloves, a change of clothing, and cleaning products. If this only happened once today that would be more than enough, but I had this production four times today alone.
But as tonight's quote points out, today may have been my masterpiece. In between caregiving tasks, I still run Mattie's Foundation. This week, I received a request from a social worker in Kansas. One of her patients is at the end of her journey, no treatment is working, and the family is facing end of life care. This patient wants a last wish..... to visit New York City. Typically our grants are up to $1,000, but given the circumstances and the cost of traveling to NYC, we are awarding this patient $2,500. Many non-profits wouldn't grant this patient a wish, primarily because she was going to die. Not only does Mattie Miracle understand the importance of a last wish, we also turn around a funding decision and provide the actual funds in a very timely manner. As of this Thursday, a check will be on its way to this patient. Here is the note I received from the patient's mom tonight:
'From a mother to a mother...I am so sorry for your loss. Losing a child or knowing you can not do anything more to help your child is beyond what I could ever imagine feeling.
Thank you for taking the time to respond and granting this wish for my daughter. This is a blessing for her and will fulfill her last wish.
May God Bless You with plentiful blessings to enable you to continue helping others.'
Tonight's picture was taken in June of 2003. That weekend we took Mattie to Great Falls Park. While there, we spotted a Canadian Goose. Mattie was intrigued and wanted to get close. In this particular case, I am not sure who was more interested in the other. As the goose practically came right up to Mattie and Peter. Mattie's little hands and fingers were like radar scopes, which honed onto a target to learn more. He had a natural affinity for being outdoors and exploring nature and through parenting Mattie, I too developed an appreciation for the great outdoors.
Quote of the day: Be faithful to that which exists within yourself. ~ André Gide
Tonight's picture was taken in June of 2003. Mattie was a year old and that day we took him to the Reston Zoo. This is a much smaller and hands on experience for young children. We got the chance to have an up close and personal meeting with several goats. At first Mattie wasn't sure if he wanted to pet the goat or run away. In any case, at the end of the day, Mattie was fascinated by farm animals and loved watching, petting, and feeding them.
Quote of the day: In any new situation, you will be viewed in one of three ways. As a minus one: actively harmful, someone who creates problems. As a zero: your impact is neutral and doesn’t tip the balance one way or the other. Or as a plus one: someone who actively adds value. ~ Chris Hadfield, astronaut
Peter travels to Philadelphia tomorrow for a few days. He is very busy with work and of course I am very busy with my parents. It is very easy in my house to feel overwhelmed, under valued, and disconnected. After all when caregiving throughout the day, it doesn't leave much time to be a person, much less a person who used to interact with the outside world. Each day for me is just like the day before. The weekends are no better.
My dad has this preoccupation with going out to eat. When I wake him in the morning, it is the first question out of his mouth.... are we going out to eat!? I have come to accept the question for what it is, his form of conversation. As whether he eats at home or goes out to eat, what I have noticed is that his appetite is rather poor. He seems exhausted and after eating a little, will say that he is full. In fact, I now have to pick out my dad's foods for him, because he no longer knows what he likes to eat or can physically chew and eat. While eating out, my dad truly has no patience for conversations with our servers, and he will interrupt conversation to ask for straws and other items. Of course talking to servers is an outlet for me! It enables me to engage with others who live a life without the impact of Alzheimer's disease. At the end of the day though, I don't know why my dad likes going out to eat! I knew at one time! He used to love food, enjoyed eating, loved to order different things, and enjoyed the experience of being out and about. Now none of these things are applicable to his life.
Typically on the weekends, Peter joins us as we go out to eat. This certainly helps to have another pair of hands and someone else to help provide conversation. Otherwise, it's all me! This morning, Peter told me he couldn't join us because he had to work on his presentations for meetings this week. Understandable and I can appreciate the stress he is under and yet a part of me was disappointed and upset. It is easy for me to get upset and angry about my situation and then it is hard for me to reset my mood. But I eventually do, because what are my options? I am sure my feelings are not unique to me, but more universal to all caregivers. Nonetheless at the end of the day, this blog has been my outlet to share thoughts and feelings since July of 2008. A long time, and a long journey being a caregiver (caregiver of Mattie, caregiver of Mattie's legacy, caregiver of Mattie Miracle, and the caregiver to my parents).
