May 27th, 2017 started out pretty normal, in fact the better side of what our new normal was. By this point every morning that I woke up, having had several straight hours of sleep and no events during the night, was a good day. It took time to wake up feeling somewhat normal knowing what I had to face.
Watching my boy suffer and struggle to get out of bed. He dreaded the night, a big part of it was the pumps, the quiet only magnified the buzzing sound inside his body, also fighting off fear of what all the potential dangers were, it truly was a practice to end the night in a place of peace. Early morning hours is when had his best sleep. This day he woke up fairly early and was out of bed by noon. He had things to do and this was always a bonus. Something to do that was fun and distracting. He recently decided it would be fun to get into RC cars with his dad. The day before he had spread newspaper all over the dining room table and worked on his remote control car. Just a few days earlier in the week he had spent the whole day racing cars with Bill. We actually were shocked that he lasted as long as he did. He came back exhausted and drenched in sweat but happy and that made us happy. Bill was leaving for a two week stint for his job and I wasn’t going to see him for those two weeks. We had originally planned a date, thinking the racing would go max two hours. Two hours turned into seven hours and that was ok. Father son bonding time was needed. Little did we know this was Bill’s last day with Michael. How thankful we are for this. It was as if Michael was saying his goodbyes.
Back to Saturday, Michael was working on his car and waiting on his drum lesson for later that day. He was also taking Jazz drum lessons. He loved playing his new drums but felt stuck and needed to challenge himself. I remember how impressed I was that he chose Jazz. He said he wanted to challenge his brain with something hard and It was very hard for him, not only mentally but physically, the packs on his sides restricted him which made it hard to move not to mention his failing heart, even with the pumps it was still exhausting but the teacher Alex was so patient and this helped Michael continue. We waited for Alex the drum teacher that day and Michael worked on his car. One moment I want to always remember is when I walked into the living room to see him leaning on the back of his big chair he looked at me and smiled. One of those smiles that makes your heart skip a beat. We didn’t see Michael smile much so this made my momma's heart happy.
Alex arrived and the drum lesson was happening but in the middle of the lesson Alex had a phone call so Michael texted me that he was hungry but that he was craving Italian food. I said, “Ok. I can make some”. He said, “No, I want good Italian food from this restaurant and it might be a little expensive”, but he promised to eat all the leftovers!. I am thinking, "Ugh!" This kid is breaking me and making me fat to boot! I was telling myself, “I’m only going to eat salads for the next few days!” Our only entertainment and a way to get out of the house was to go get food. Michael loved to discover new places. Well, unfortunately now he was ruined for Italian food. The week prior his good friend took him out to eat in LA, there they called another friend and they all decided to go to this place owned by Nancy Silverton Osteria Mozza a Michelin Star restaurant. It was a very big splurge, but wisely they chose to live the moment. This was their goodbye, their last meal with Michael and it was so memorable. Michael even texted me pictures and raved. Saying its so expensive but he has to take us there! He couldn’t stop talking about it. So now we have to go to “good” Italian restaurants. He managed to find one here locally. The thought did cross my mind “What if it is our last meal together?” I texted him back, “Ok, but I’m getting a salad!” He said “Yes for sure, but I am going to order for us” I knew what that meant, but I didn’t care. I already decided that our time tighter is invaluable. I just made sure to tell him we could not splurge for awhile after this.
Once his lesson was over we got ready to go. Not remembering it was a Saturday night. It was busy, we pull up to see fancy cars and valet and I’m thinking “oh no, this is going to cost me”, but I was so thankful to have a date night with my son. They sat us right away, which was crazy because it was so busy, but it just worked. We sat in a booth and the waiter attended us. Michael ordered several dishes and we ate and enjoyed.
We had a lot of left overs and usually he didn’t like left overs but he said he was looking forward to eating these leftovers because “Italian food is always better the next day!” Some of these moments were bittersweet I know he loved me but I also know he longed to be normal, maybe to be on a real date or with friends. I know it was hard for him to have his mom as his side kick. I did my best to give him space yet he couldn’t be left alone. It was too risky. Little did I know just a few hours later I would find out how my presence really was not going to make a difference in the end result.
Michael had such a good day but at 1AM he texted me about his terrible headache, then the vomiting. I thought for sure he had food poisoning! I was so mad. The anger at this restaurant turned to fear real quick. I did my best to soothe him and this is where I begin to beat myself up. This is where my work in grief begins. I won’t go into all the details. I’m not supposed to. The Lord told me its like picking at a scab. If you keep picking at it it will never heal right and leave a nasty scar. Anyways about 3:20AM Anthony called 911. Our biggest fears had become a reality.
The details of the rest is our forever nightmare. Better to remember the good memories. I am so thankful we all had our last moments with Michael. Even his siblings Anthony and Deeana as well as many of his friends had special moments with him before he passed. It only serves to reassure me for some reason this was his time. God knew and some how he knew. We said our good byes while he was alive. For this I am thankful.
P.S. Michael did not get to eat his leftovers as he promised but Anthony did. It was hard for him but he had to eat it and he used it as a moment to bond with his brother. To know him. I’m sure he was eating through the tears. I will write about his incredible brother and sister in another blog, so much to say.
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