The lag in updates is nothing short of just not knowing what else to say…..other than how much I STILL miss my boy. That miss never goes away. Time has allowed us to hide the pain better but hasn’t eased the pain.The hole in my heart is still there, it still aches. I try not to dwell on all Matty is missing out on but some days it’s so difficult not to. He only got 7 ½ years on this earth. I agree he did amazing things in that time but he was supposed to have a lifetime of more. When you lose a child, you also grieve all the hopes and dreams you had for that child. How can you not?
After losing Matty, one of my biggest fears was that he would be forgotten. So, I'm making it my life long goal and job to make sure that doesn't happen!! I have to, I'm his Mama!
I worked hard with Matty’s classmates, who I continue to cherish in the many ways they continue to remember and honor Matty.
I work hard at continuing to host Children’s Hospital blood drives. I now host 6 drives a year. I always have new donors. Someone new to share Matty's story with. This also makes me feel good about 'giving back'. To date, from the blood drives I have hosted, Children's Hospital has collected 1,329 pints of blood. Each pint helps up to 4 patients. We're doing good things!
I also work hard with staying involved with the Dana FarberMarathon Challenge team. I’ve been volunteering in hosting water stops during their marathon training for years, but this year, I decided to volunteer every single weekend, starting in December. I meet the team very early every Saturday morning, stand out in the less than favorable weather conditions, provide them with my fresh baked cookies and gummy bears, along with the snacks that the team provides. I bring a poster of Matty and scatter additional pictures on the snack table. I choose a theme for each weekend and dress up for that theme. I absolutely look foolish but if it helps in getting a runner to smile, it’s so worth it. It’s been such an awful winter to train for a marathon, so if I can do anything to help this team feel good about what they’re doing, I’m all about it. This team allows me to comfortably share Matty and his story. This team knows about Matty, they ask questions, they take pictures, they offer their support. It’s amazing. The majority, if not all, the runners are inspired by someone who’s been touched by cancer, which makes sharing our cancer stories with each other, a little easier. There is SO much love and support given and received, which is why I love volunteering for this awesome team!
So, this is what I’ve been up to the past few months. Johnny and the boys are good. Time passes but stands still. We all miss Matty so much.
I still find it very hard to say how many years it’s been, because not only does it not feel it, it’s so hard to think he’s been gone longer than he got to live. I am still uneasy with the word ‘dead’ or ‘died’. Sounds too definite, even though I’m supposed to realize that he’s not coming back. I still question him, as I look at his picture sometimes, “Really? You’re really not coming back?”. It’s just too hard to accept.
Some ways you can honor Matty on Wednesday, his angelversary: Wear blue, release a balloon, blow bubbles, eat cereal, play a video game, watch Spongebob, tease your sibling, eat your vegetables, have a Kit-Kat, have Skittles, Starburst or Sweettarts, take a big tubby (a bath filled to the rim) with lots of bubble bath, donate blood or any other way that you seem fit to honor the King!
Recalling the very last time I held Matty: We had a very busy March 25th day. Many of his friends and relatives stopped by, which also included some of his nurses from the Jimmy Fund and Children’s Hospital. He even had a private visit from the Easter Bunny. It was a full day and he was a trooper.
Matty’s oncologist made a house call that evening to cath Matty, as he couldn’t release his bladder and was becoming so uncomfortable. Once Matty was made a little more comfortable, I brought him up to my bed. I carried him like he was sitting on the side of a chair. He was hooked up to too many things that I had to be very careful not to pull on a line. As I carried him upstairs, he told me he was THE KING! He tried to get comfortable in my bed. He was not and wanted to go back downstairs to the couch. We went back and forth, up and down stairs 4 times before he settled in my bed. But on the last time carrying him, he was shouting, “Look at me, I’m THE KING, I’m THE KING!”, as I was carrying him to bed! He made me laugh! I never realized that would be the final time carrying my boy as he flew to Heaven only a short time later. It still makes me smile when remembering him shout that he was the King. He most certainly was!