he’s emerging

I am beginning to remember why I wasn’t writing as often as I wanted for the last few years. Being the mother of a young child is time-consuming and exhausting. Add to that sleepless nights in the hospital and one begins to function on little more than cell memory. I am also realizing just how little of our boy we were seeing for a few weeks there because I had too much time for a three-year-old’s mom–altogether too much. I can happily say that is not the case right now.

Last week, one of our lovely supporters sent Caemon a box of light–flashlights of all different shapes, sizes and colors. It was just around this time that he hit a major turning point, and we began to see more and more of Caemon every day. Each day, he lets us slip a little more when we call him “Caemon.” He told me last week when I asked him directly if he was beginning to feel like Caemon, “I won’t tell you when you can call me that name again.” I’m telling you, he’s a little Buddhist monk. I think we’re finally figuring out this latest bit of wisdom.

This week has been pretty remarkable. Caemon has been eating bits of food every day. Bone marrow transplant patients often enjoy spicy and sour foods because they stimulate their very muted and distorted tastebuds. Yesterday, Jodi brought in a bag of jalapeno flavored Kettle Chips, and he ate them one after another, scooping bites of milkshake into his fiery little mouth in between. We repeatedly heard him delight in these foods with an Mmmmm! after every bite. A few days ago, his oncologist stopped by for a visit with a handful of Tootsie Pops. He immediately unwrapped it and popped it in his mouth. It was the first of these he had ever had. I was thrilled. Those who know us well might be amused, even alarmed, at our boy’s current diet, but I couldn’t be happier to see him eat junk food, to see him put anything in his mouth again. We have ample time to get back to healthy eating. Right now, the simple joy of sitting around and eating anything as a family is something positively precious.

Yes, you read that correctly. We get to eat as a family now. Prior to and during transplant recovery, families cannot eat in the room with the child. We have had to eat all of our meals in the ante-room next to Caemon’s. However, once the child’s neutrophil count is over 500 for three consecutive days, families are allowed to eat in the room together. Caemon’s counts have fairly consistently been climbing, and we are now able to have family meals again. He loves being able to feed us bits of food, and while he is still building confidence with food, he does seem to be enjoying those bites he is having. There are times when food is challenging because his tastebuds are very off right now from the chemotherapy. Some foods just don’t taste right, and he will tell us, “That doesn’t taste like I expected.” That’s hard to hear sometimes, but we know it will return.

Perhaps the best change in our son, though, has been the return of his voice, his smile, and his laughter. Caemon loves to laugh, and once something tickles his keen sense of humor, he completely loses himself in this wonderful rolling laughter that comes all the way from his belly. He has laughed like this a few times lately. I laughed, and then cried, right along with him. Today, Caemon delighted in hearing favorite music he hasn’t heard in some time, in reading books he hasn’t read since before transplant, in dancing around the room with me, and even building a bed fort with a nurse and doctor who couldn’t resist making some magic for a little boy. He didn’t nap today, and he hasn’t wanted to nap on the days he feels well lest he miss something. It’s like he’s soaking every experience in again, remembering what he loves about life. It is hands down the best thing I have seen in ages.

We have a little bit to go still. He still needs his platelets transfused every day, and his counts, while climbing, are a little sluggish to recover completely. It takes time for all of this to happen, but the talk of going home is in the air. Today the doctor predicted a week from Monday. I can buy that. We’re getting there.

Tomorrow, I will go home to lead a crew of generous souls in ripping out old carpet, installing new flooring, then cleaning and cleaning and cleaning more, and beginning the steps toward getting our home ready for the next phase of this journey. I hope we’re done with steep climbs and can just enjoy a steady pace toward wellness for awhile. We are all tired to our cores and ready to have our lives back. Moment by moment, we are getting there.

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11 thoughts on “he’s emerging

  1. triciabertram

    For one so young he knows much about what is right for him. Your “little Buddhist monk” is wise and precious. I hope you three soon get to relearn the peace and normalcy of daily life.
    Thank you for continuing to share your journey.
    Tricia

    Reply
  2. Roger Williamson

    Another case of “No news is good news”. We wondered why no recent updates, and you certainly don’t owe them. Being too busy with returning vitality is a great “excuse”. Tickle our boy for us. And Breathe! Enjoy the view and the wonderful refreshments at this mountaintop. I wish I could come help lay flooring. Or anything. Good Luck.

    Reply
  3. Carol Allison

    Like Caemon, I am soaking in the experience of this post and everything I love about it. Delightful. See you soon! The butterfly is coming out of his cocoon and we will be preparing his palace!

    Reply
  4. Helen

    I am beyond thrilled to hear this good news! The Beatles song “Here Comes the Sun” immediately came to mind while reading this! The lyrics are perfect and you should play it for Caemon and yourselves….wish I lived closer to help with preparing the house. I do have a very good air purifier that we hardly ever used that I would like to send (Austin Air Brand). We got it after 9/11 while living in NYC…truly used it a few times and then it sat in storage….they are supposed to be the best and used in hospitals etc (you can check their website)…it is about the size of a milk crate. I have the Healthmate Jr. in sand (if color matters). How can I get this to you? (We live on the east coast-DC Metro area).

    Reply
  5. Grandma Marks

    So good to hear such wonderful news. The three of you have taught us all to appreciate every single day, every bite of food, every little smile, even the air we breathe. Most of all, the three of you (and your donor) have taught us the power of love!! Keep up the good work! Hope you are home soon.

    Reply

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