"Love is space and time measured by the heart." - Marcel Proust
Hi everyone. This is Mattie's Dad, Pete writing the blog. Just to prepare all readers, I will be writing the blog over the next few days since Vicki is attending the national mental health counselor's annual conference (here in DC), and will not be with us for much of the day. So, my apologies to all of the loyal blog readers who are used to reading Vicki's prose each day. Unfortunately, you are stuck with me.
Mattie had an average night of sleep last night, only popping up twice, but he had an accident around 5am, so I scrambled to clean him up and get him back on the path of sleep. I am balancing working each morning and then taking the afternoon off for Mattie's PT and clinic appointments this week, but my day began just after I got Mattie back to sleep this morning. I got on email, then phone calls with some of our Africa and India-based offices, and before I knew, it was 11am and I still had a few hours of phone calls and meetings to go. Fortunately, my parents came over at 9am (they are down from Boston to help us), and were here to help deal with Mattie, who woke up at 10am.
Mattie was very clingy this morning with me, which presented some problems, but my mother captured his interest by offering Mattie waffles and to sit with him and watch a DVD, which he warmed up to and ended-up enjoying immensely. It was a big relief for me to have this coverage as work continued to pile-up on me. Although I had booked each afternoon off from work, I am working for a small, start-up technology company, and the work never really stops (as in there are no boundaries). Having personnel and projects that I am responsible for spread over eleven and a half time zones and on four continents makes for a very long working day. Balancing work and dealing with Mattie's situation has never been easy. I am constantly torn between being there for Mattie and my commitments at work. I do not wish this on anyone.
I finally cleared my work items by 1:30pm and then Mattie, Grandma, Grandad and I piled into the truck and sped to, where else, the Lego store, where Mattie scored a nice Lego. After
securing a individual pizza from Subway for Mattie, we sped to Georgetown for Mattie's PT appointment. We had a great session with Anna, and Mattie accomplished a lot. It was particularly great to actually see the PT session and to see Mattie moving.As many of you know, back in April, Vicki and I changed our approach to coverage with Mattie. Being both burned out, we agreed that where and whenever possible, we would go to single (as in only one of us) coverage with Mattie. Vicki, unfortunately, bears the majority of this burden, but with Vicki on point each day and week night, and me covering Mattie for a few hours each night as well as "taking shift" on the weekend night, we try to spilt some of the burden. Without question, Vicki continues to perform the heavy lifting with Mattie's situation.
We returned home and instantly Mattie wanted to launch into building the new Lego acquisition. I had to check in on work, and although Mattie opened the Lego box, and laid out the instructions and pieces, he refused to build the Lego until I was available. Although my parents tried to engage him, Mattie was clearly defiant and would not budge until I was at hand.
Mattie and I then had a blow-out. The reasons for the blow out are not important, but needless to say it was disturbing. Mattie was clearly confused as to why I was home but not available to play. I think this clearly bothered him all day, which upon reflection could explain a lot of his actions and attitude today. I know I should be flattered that he really wants to spend a lot of time with me, but given all that was going on today, I just could not properly frame all of it.
Vicki arrived home about 9:30 tonight after a full day at the conference and ended up processing the day with Mattie and I, particularly our spats, before she even got a chance to relax. I think Vicki completely understands what I went through today, as she goes through this most days of the week, and it was comforting as she quickly understood my trials and tribulations today.
We want to thank the McCleary family for a delicious meal tonight. I loved the fresh corn on the cob and the tomato salsa was divine. Vicki has already started on one of the cupcakes so thank you!
Mattie headed up to bed around 10:30 tonight and I will stay with him again tonight. We have a PT session at 11am and then MTP tomorrow, so it should prove to be a full day. Once again, sorry this is not Vicki writing, but she will be back shortly.
Vicki's friend Charlie wrote, "Vicki, it's clear that Tues was a really busy day for you as according to the blog it was the second Monday of the week. I often feel that way myself. I was really impressed by Mattie's desire to reconnect with the nurses up on the HEM/ONC ward. It speaks volumes about his newly found self sufficiency and his rebounding self esteem with regard to his body image. I think you have handled this brilliantly. While Mattie is now off all his pain and anxiety medications, his body is still recovering from the ravages of the treatment and he tires pretty easily; thus once he has reached the limits of his tolerance he has a meltdown. As he eats more and gains strength he will be able to go longer and the meltdowns will occur less frequently. I know the tantrums are frustrating but try not to overreact to them as that will give them an importance they don't deserve. I can just imagine how difficult it was for you to go to the conference and feel as if it was the critical place to be. In your heart, what you've put so much time into is no longer of pressing importance. I think we all need to step back occasionally and reevaluate what we feel is important in our lives; you've given us all that opportunity with this blog and you continue to remind us to keep our loved ones close and connected to us as that is what really counts."
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