Tuesday, March 31, 2026

Tuesday, March 31, 2026 -- Mattie died 839 weeks ago today.

Tonight's picture was taken in March of 2004. Mattie was almost three years old. That day I was working outside on our deck and Mattie was right there, along side me. He was my little side kick. Naturally there was a car or toy with us too. It was one of the tell tale Mattie signs.... a car or toy was always in tow and of course his sippy cup was never far behind. It may not have been in the photo, but I assure you, that cup was right next to Mattie.

Quote of the day: The past beats inside me like a second heart. ~ John Banville

Last night was very challenging for me, as I had a horrible migraine. I woke up this morning with a terrible headache, but I was at least able to function. I was on a mission today. I wanted to visit Mattie's memorial tree at his school. Saturday will be Mattie's 24th birthday, and I have never missed visiting his tree on these special milestone days. Given all that I have going on, I won't lie, I thought about not going this year. I miss visiting Mattie's tree with my other half, caring for the tree together, and sharing memories of his life together. Now I am the sole keeper of Mattie's memory and legacy. As such I found the inner strength to visit the campus today. I put together ribbons and ornaments last night and packed the car so we would be ready for today. 

Today was not a memory center day, so I had my dad with me. I should have left both of my parents home, so I could visit the tree alone, but my mom wanted to come. Which meant that I had to take my dad too. I toileted him before I put him in the car. But don't you know 15 minutes into the drive, while I was on the highway, he pooped again. Though I typically would have turned the car around and dealt with him, my primary goal was to focus on Mattie. So I literally let him sit in it for two hours. I went to the Foundation's mailbox and then to the tree. I spent over an hour caring for the tree, removing Christmas ornaments and other debris, and then I tied a sunflower ribbon on the tree as well as placed sunflower and butterfly ornaments on the tree. With the wind blowing, the ornaments were twirling and looking beautiful.

Going to the campus is like a walk down memory lane. I remember dropping and picking Mattie up from school each day, I remember all the special events on the fields, and I of course remember his playdates after school. We were only on that campus for one year before Mattie was diagnosed with cancer, but it was a meaningful and memorable year. Mattie loved his school and made solid friendships. Back then, I thought we would have a lifetime together. I could ask why was Mattie taken from me when he was 7? Why are others lucky enough to have healthy children and see their children go from elementary school, to middle school and then high school? I have many questions, but no answers! Mattie maybe gone 17 years now, but time is irrelevant! IT MEANS NOTHING TO ME! The loss of a child is forever. It is very sobering as a bereaved mom to know that there will be NO PARTIES on Saturday and that I lost the one person in my life who I counted on to be able to share Mattie memories with. What I do know is if Mattie were alive today, he would be disgusted with what happened to our family and I know he would be an incredible ally!

Monday, March 30, 2026

Monday, March 30, 2026

Tonight's picture was taken in March of 2005. Mattie was almost three years old by that point. I took a photo of the living room, because it illustrated what I used to refer to as.... hurricane Mattie. This was a typical afternoon of play, things would be everywhere! After each play session, I would clean up and put things back in place. As Mattie got older, he would help me, because I felt it was an important lesson to learn the art of picking up after one's self, and what one had to do as part of a family system. A life skill!

Quote of the day: For a chronic migraine, there are no triggers, life is my trigger. For chronic migrainers there are no cures, there are only patches that will get you through to the next bout. Have we tried, acupuncture, herbal remedies, diets, standing upside down on our heads? Yes. The answer is if we have gotten diagnosed as chronic migraines then we have tried anything, and if by chance we have been able to get up and put our mask on that day please let us wear it, under our sunglasses and large hats. It took a lot to get there, and ain’t nobody got spoons for that. ~ Emily A

It is 5:45pm, and I have a full blown migraine. I was fine all day, and then I went outside to pick up branches and twigs. Also fine. While doing that, I decided to run a load of laundry.... jackets and fleeces for all three of us. What I did not realize, was that in one of my fleece's I had small burnt out lightbulbs in my pockets. I collected these bulbs from the garden lights over the weekend, as I had to replace 12 lightbulbs. Given all I juggle and how I jump from one task to the other, I forgot to throw the bulbs out, and I did not realize they were in my pockets before I ran the laundry. When I opened up the washing machine after it had run its cycle, I found glass everywhere! I spent two hours cleaning up the glass and the stress of this whole incident was enough to bring about a migraine. I could beat myself up over this, but then I remind myself, I am doing the impossible each and everyday! So this is as much as I can write today. May tomorrow be a better day!

Sunday, March 29, 2026

Sunday, March 29, 2026

Tonight's picture was taken in March of 2009. That day Team Mattie gave him this cute bunny hat for Easter. Mattie put on the hat, but if you can tell it wasn't a good or happy day for him. I think as Mattie's cancer journey continued, he felt more and more debilitated and therefore it isolated him more and more from his friends. Mattie was very aware of the fact that his life looked different from healthy children. For the most part, Mattie did not dwell in these feelings like an adult would, but nonetheless, if you scratched the surface, the issues were very evident. 

Quote of the day: As we advance in life it becomes more and more difficult, but in fighting the difficulties the inmost strength of the heart is developed. ~ Vincent van Gogh

Sunday is the only day of the week where I can sleep past 6:30am. However, at 3:45am, I was awakened by the power going out! Yes I am that sensitive that I can be jolted awake with any sort of noise or changes. While I jumped out of bed, I also heard a firetruck and ambulance. It was so loud that I thought it was on my street! It wasn't. I later found out that there was a car accident blocks from me that took down an electric pole, affecting over 300 customers. We were without power for six hours. Thankfully we have a generator, but today, I got a crash course in understanding when the generator is on and when we are on utility power. Literally you should have seen me, as I was walking around the outside of the house in my pajamas trying to hear whether other neighbors' generators were on! The sound outside was intense, as you could hear generator motors everywhere! The reason I did this, was because I have a Ting app that lets me know about the electrical activity in the house. The Ting app kept telling me that power was restored. However, if that was the case, I was confused as to why the generator was on! Which is why I went outside to see if neighbor generators were running, or just mine. I have now learned how to read the Ting app and I understand when they tell me power is restored, they are basically telling me that the generator is running. What I need to then see is a follow up message about being back on utility power. Honestly the things I am learning, I could write a book! I went from someone who knew nothing about the inner workings of the house, to being almost in full control!

Any case, it was a bad start to the day, and it only got worse with managing my dad's irritable bowel issues. I am quite certain the average person would not take him out. It is just too labor intensive. Literally I changed my dad before leaving the house. As soon as we got to the restaurant, I had to change him again, and yet again while eating. All I can say is my parents are lucky that I have a cast iron stomach!

Today I worked on recovering photos from 2016 (if you have been following my saga, then you will know that something happened to my shared drive, in which I lost photos, files, and other documents for decades). This was one of the precious photos I recovered! Taken in July of 2016. The month and year we rescued Indie. In fact we adopted her over the 4th of July weekend, which is why she is named Indie, for Independence Day! Indie was the queen of the household back then, but that all ended when we brought Sunny home in September of 2016!

I found this photo of our garden fountain! This fountain was created for me by Mattie and my other half. It was my mother's day surprise! This beautiful fountain used to sit on the deck of our Washington, DC apartment. It was filled with shells that we found over the years. I miss this fountain, but I will never forget the love and sentiments behind this meaningful gift. After Mattie died, I used to run the fountain, and the sound was a reminder of the special bond we shared.