Looking for sunshine in the stormy rain clouds
Greetings! I know it's been a while since our last update. We are essentially on house arrest since N cannot go out into public yet. What does this mean? I'm stuck to him like white on rice with nowhere but the next room to roam to. We do have a nanny that comes for several hours a day, so having her here has allowed me the freedom to step out and catch my breath and run errands as needed. Her being here has probably been my sanity saver!
In general, I will say that N has been doing very well. We got confirmation this week that his cells are 100 percent W's at this point. Only his T-cells are 97 percent W's, and we will check progress on that in another month. The team is very happy with how his body is taking the new bone marrow. Little brother did not miss a beat. He was back to normal, roaring and pounding his chest half naked just 4 days after transplant (because that's apparently what the Hulk does). The only evidence of transplant for him are 2 little heroic life giving scars on his lower back. One day, N was feeling ok and he looked over at W and said "I think your cells did a pretty good job." W looked back at him and blinked. "Ok," and took another bite of his dinner. Chomp chomp. Wow how children can gloss over such monumental moments like that.
Since being home, if I step back and look at the big picture, I have much to be grateful for given how phenomenally well he handled his time in the hospital. The list of gratitudes are endless. But the little day to day moments have been a constant yo-yo of emotions for me. Chest pains, stomach aches, stomach cramps, leg cramps, sore throat, finger feels funny, eye is red, this burns, this hurts, not hungry, so hungry... Through the weeks of this, we have gotten sprinkles of perfectly normal days. On those days, I get a surge of energy that makes me feel like I can take anything on and the sun feels gloriously cheery. And then it comes crashing to a halt when my eyes meet his and he says any number of those aforementioned things. And my world comes caving in on me again. Panic sets in, the rooms feels tighter, and I'm walking around with a little rainy storm cloud over my head.
It's tough to know when to be worried and when to shrug it off. I'm constantly keeping my patience in check because for the time being, I need him to tell me everything he feels. I need him to report to me everything that feels off. I'm depending on him to do just that. But I do long for a time in the future that N can sneeze and all that would happen is that I'd glance over and see him reaching for a tissue and I wouldn't give it a second thought, rather than looking over at him wide eyed wondering, "Oh goodness, am I going to the ER tonight?" But it messes with your psyche. Sometimes I wonder if I can ever go back to normal in my way of thinking. It also has messed with N's pysche a little bit. For some reason, when I'm around, things ache just a liiiittle bit more. When I'm next to him, his tummy just needs a liiiiiitle bit more love. So the breaks in the day with the nanny have been good for him too I believe. If I'm still in the house, it doesn't work. But if I leave him completely, he has far less to complain about for some reason. I think we are driving each other bonkers while being completely reliant on one another. A very symbiotic relationship.
I do remember laying in bed 8 years ago, wide awake with terror on the first night I was home with newborn N laying in the same room. I was thinking, "Is he breathing? How come it's quiet? What's he doing now? Still sleeping?" And then my mind went forward to him being 16, and me sitting on the couch wondering if he is ok on the road. And I clearly remember sobbing consumed with worry thinking, "I will NEVER be able to sleep again!" Hormones. I know.
But my point is that life does go on at some point, and normalcy does get restored even though it seems that it may not. It's just a matter of time. It's been 5 months since the day the doctor came into the room with that intense look in his eyes, bracing himself to drop the bad news on a mother earnestly looking at him to say anything but what he was about to say. And here I am today, 5 months has already passed and we are standing on the other side of the daunting process of giving him a forever cure. God has accomplished so much in those 5 months, and has slowly brought to fruition everything he has been planning all along. I think about what life will be like in another 5 months and I am filled with so much hope for just a plain old boring day where we can jump in the car and do something crazy together- like grocery shop!
In general, I will say that N has been doing very well. We got confirmation this week that his cells are 100 percent W's at this point. Only his T-cells are 97 percent W's, and we will check progress on that in another month. The team is very happy with how his body is taking the new bone marrow. Little brother did not miss a beat. He was back to normal, roaring and pounding his chest half naked just 4 days after transplant (because that's apparently what the Hulk does). The only evidence of transplant for him are 2 little heroic life giving scars on his lower back. One day, N was feeling ok and he looked over at W and said "I think your cells did a pretty good job." W looked back at him and blinked. "Ok," and took another bite of his dinner. Chomp chomp. Wow how children can gloss over such monumental moments like that.
Since being home, if I step back and look at the big picture, I have much to be grateful for given how phenomenally well he handled his time in the hospital. The list of gratitudes are endless. But the little day to day moments have been a constant yo-yo of emotions for me. Chest pains, stomach aches, stomach cramps, leg cramps, sore throat, finger feels funny, eye is red, this burns, this hurts, not hungry, so hungry... Through the weeks of this, we have gotten sprinkles of perfectly normal days. On those days, I get a surge of energy that makes me feel like I can take anything on and the sun feels gloriously cheery. And then it comes crashing to a halt when my eyes meet his and he says any number of those aforementioned things. And my world comes caving in on me again. Panic sets in, the rooms feels tighter, and I'm walking around with a little rainy storm cloud over my head.
It's tough to know when to be worried and when to shrug it off. I'm constantly keeping my patience in check because for the time being, I need him to tell me everything he feels. I need him to report to me everything that feels off. I'm depending on him to do just that. But I do long for a time in the future that N can sneeze and all that would happen is that I'd glance over and see him reaching for a tissue and I wouldn't give it a second thought, rather than looking over at him wide eyed wondering, "Oh goodness, am I going to the ER tonight?" But it messes with your psyche. Sometimes I wonder if I can ever go back to normal in my way of thinking. It also has messed with N's pysche a little bit. For some reason, when I'm around, things ache just a liiiittle bit more. When I'm next to him, his tummy just needs a liiiiiitle bit more love. So the breaks in the day with the nanny have been good for him too I believe. If I'm still in the house, it doesn't work. But if I leave him completely, he has far less to complain about for some reason. I think we are driving each other bonkers while being completely reliant on one another. A very symbiotic relationship.
I do remember laying in bed 8 years ago, wide awake with terror on the first night I was home with newborn N laying in the same room. I was thinking, "Is he breathing? How come it's quiet? What's he doing now? Still sleeping?" And then my mind went forward to him being 16, and me sitting on the couch wondering if he is ok on the road. And I clearly remember sobbing consumed with worry thinking, "I will NEVER be able to sleep again!" Hormones. I know.
But my point is that life does go on at some point, and normalcy does get restored even though it seems that it may not. It's just a matter of time. It's been 5 months since the day the doctor came into the room with that intense look in his eyes, bracing himself to drop the bad news on a mother earnestly looking at him to say anything but what he was about to say. And here I am today, 5 months has already passed and we are standing on the other side of the daunting process of giving him a forever cure. God has accomplished so much in those 5 months, and has slowly brought to fruition everything he has been planning all along. I think about what life will be like in another 5 months and I am filled with so much hope for just a plain old boring day where we can jump in the car and do something crazy together- like grocery shop!
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