We went to do lab tours at Stanford yesterday. I wasn’t feeling so great last night so I went to bed right after the kids. I thought I would have plenty of time to write all about it tonight.. But life and memories stepped in the way. .. So tonight I write for me.
I’ve never been that mom that freaks out over things with my kids. I have a dr thats over 30 mins away because he is awesome and my plan was always to switch over to him after Charlotte was 1, done with the constant well baby check ups, since I knew we would have so few visits. But there are things. Moments really that simply knock me over.
I’ve had two this week.
Jonathan’s newest food avoidance strategy has been to say the food makes his head hurt. And he holds the same spot at the back of his head. But it was always happening when he was eating a food he didn’t really want to eat.. so I thought nothing of it. Until Tuesday night. We sat outside our support group.. About 5 mins away from our destination he started to cry. I talked to him.. tried to soothe him from the front seat. But then realized he was sleeping.
I hurt for him. Wondered how often did he cry in the middle of the night.. just like his Daddy. When we parked he woke up and immediately said his head hurt.
A frightening chill runs through me.
I had him come to me at since I knew I couldn’t get to him calmly. I asked him where. He pointed to that same spot.
freezing from the inside out. memories flashing back.
I wanted to turn the car on and drive to Stanford ER right then. I just gripped the steering wheel as he got his jacket on.. Perhaps my cold had penetrated throughout the whole car. But I knew that didn’t make sense. He wouldn’t get a MRI for a few headaches at the ER because I wanted it.
We each had our group session.. and then our dinner out together. And he seemed totally normal. I called my sister to see if she could talk me down from the ledge. She always has.. except once. A week before Jennifer would turn 6, when the eye doctor said we would need a MRI.. Then she said this is scary and I can’t say for sure it will be ok.
This time she wanted to say it. But she is also ruined by the cancer that stole away Jennifer. So she suggested I call the kids pediatrician and have him looked at tomorrow. Then I realized I would be at Stanford for a lab tour the next day, I would be with Dr.Monje. I did pull her aside and through chocked back tears talked with her about Jonathan. She took time and spoke with me.. as a physician and as a mom who also knows too much.
She alleviated most of my fears in part by reminding me of things I already now know. She also had some other suggestions that helped. Turns out my first thought was right. Jonathan said his head hurt because he didn’t want to eat the food.. and the other time. Well I am not sure what caused it, but I am also not so concerned about it.
These are the changes that have happened for me.. I doubt myself .. in so many ways.. And us.. my sister is scared … she knows bad things really do happen to good people.. to innocent children.
And then last night. Last night Jonathan woke me up crying in the middle of the night. He was convinced his nightmare was true. I couldn’t calm him down.. and he was coughing. That deep barking croupy cough. I carried him outside .. he was still scared though.. but now because he was struggling to get his breath. That feeling.. his weight in my arms clawing at me.. wanting me to fix it. Eventually the cool air did its job and he was able to breathe a little easier. I carried him to my bed and he fell right to sleep.
I did not.
He had a fever. I held him in my arms. I remembered her heat. How hot she got. Hotter until I thought she couldn’t possibly get any hotter.. but she did. As long as I live I will never forget that feeling.. one that I should have been able to do something about.. medicine the hospital .. something .. anything. Instead of just feeling it.. burning itself into my skin. Into my memory and my dreams..
I felt his heat but also his heath. I rubbed his back and felt the fullness and was so grateful for it. He is the same height she was. He is naturally thin like she was. But he is so much fuller than she was. No bones sticking out to stop my fingers path. In that moment I yearned for her so deeply, while also having such gratitude for my son.. my sons and my living daughter. So grateful I still get to hold them.. and that I can help heal them.
Then the noise.
The rattle .. that noise.
So much like her. I felt like I was going to pass out. Like I might hold him so tightly then against me that I would wake him up. I was about to tell Tony I couldn’t do it .. I needed a moment to fall apart when I heard him choking on his pain. The shuddering escape of quiet sobs of the strongest man I know. So I let myself succumb ..
..to a chorus of noises that took me right back.
To the time 9 months ago I held my daughter.. my barely 6 yr old.. for 1 and a half days.
It was often just her and I together most those 36 hours. I worried for a long time that Tony was resentful of me for that.. That he felt I shut him out. Turns out he always worried that I had felt abandoned. Truth is this that we gave each other another gift, a gift in the worst of times that we have had to face thus far.
The rattle she made.. That haunting choking sound … also so beautiful somehow to me because its the last noises I heard from her. It wasn’t I love you.. or mommy. It was that rattle. Her rattle. So similar to what I heard from my son last night, but different too hers still had a twinge of femininity to it.. a girlish quality somehow. .. And underneath it such strength and promise for that moment. . .
The way her body struggled and fought for every single breath .. until her last.
Her last. I was there for my child’s final breath.
you will be the first one i see
i can’t wait for you to show me around
thank you buggers..
for gifting me all of your firsts..
and the most precious of lasts.
…until there is a cure..