Once again, its been a while since I've made a post on Zoë's website. One reason is that its been overwhelming with her treatments and surgery. Another is that there has been nothing to report. Or we've been too busy with trying to settle in at the house.
And we were settling in fine. It wasn't easy, figuring out her medication schedule and getting ourselves and her on a new rhythm. But we did it. Medications were administered at 8 in the morning and at 8 at night, or otherwise specified. I finally started to transition into that stay-at-home-dad role we've been talking about for months. Zoe was usually asleep by 9pm. I typically took the late shift if she needed it. And Laura was usually good for getting up early when Zoe wanted someone awake, which was common. The first day or two at home without Laura was scary, relying only on myself to find ways to entertain Zoe. But with her help (usually crying or some other way of expressing displeasure) I found a way to entertain her and use up all the time during the days with her, enriching each others lives. It was fun to start her with tummy time and encouraging her to roll over, or take daily walks through our neighborhood. If I was really desperate, I would show her one of her favorite films, Microcosmos -- I highly recommend this for adults and children, or throw her in the car seat and take her for a drive. That usually put her out and allowed me the time to listen to music or one of my Richard Flint tapes or enjoy the silence.
Some major milestones I reached as a stay-at-home daddy were getting her to take the bottle. It was a battle, but once she figured it out, she would even hold the bottle herself. Of course another milestone was introducing the pacifier. She has never taken one for very long unless it was coated in sugar water. And even then it lasted as long as the sugar did and then it got spit out the same way it always had.
Most people pray when they have a problem. It occurs to me that I write the same way. Here I am at 4:30 in the morning on a day I couldn't tell you. I know it is still march, but do not have the foggiest idea what day it is. I'm sitting in a rocking chair beside Zoë's big bed. I told her earlier that she's a big girl now, that she has a big bed. Provided by the hospital for all of our comfort, both Laura and I have slept in Zoe's big bed with her tonight at different times to cuddle and be close. She's in bed alone now. Her monitor's alarm is blaring. It will not pick up her oxygen level. her respiration is low and her heart rate is high enough it would probably give me cardiac arrest before long. Its been consistently in the 160s. For a moment while I have been typing, I got up and held the oxygen mask to her face and it still would not pick up her levels on the monitor. The nurse ran in and we discovered that the sensor had fallen off her foot.
Zoë has been almost in a constant state of discomfort, causing her body to writhe and her to paw at her face. That is caused by a myriad of reasons. High calcium in her body, the morphine causing her body to feel itchy, of course the tumor. Whatever your belief in a higher power, if God really does exist, this disease was created by the devil. I believe it was in her writhing and moving around so much that she probably kicked off the sensor.
I don't know how anyone copes with pain and discomfort. I don't know how Laura and I are coping with having a terminal child. Regardless of this situation, we both want to have more children, but I don't even want to talk about it until after we see this child safely from this world into the next. And then even after that it will still be a while for us to heal and recover from our loss. God bless us. God bless every family with sick and healthy children. Who knows how anyone deals with the harsh realities we face constantly.
Here is my promise...I promise to write here more often, even when there is nothing important to report. The other day I started working in my garden. If at very least, I will let you know how the basil and tomatoes are growing. God bless you! Thank you for reading our blogs.
P.S. One of Laura's best friends made arrangements yesterday with Fenway Park for me to take Zoë into the stadium to show her around. Its clearly for me, since I'm such a huge Red Sox fan, but it would mean so much to stand in front of the green monster where so many great left fielders stood before with Zoë in my arms. A memory I would always cherish.
And we were settling in fine. It wasn't easy, figuring out her medication schedule and getting ourselves and her on a new rhythm. But we did it. Medications were administered at 8 in the morning and at 8 at night, or otherwise specified. I finally started to transition into that stay-at-home-dad role we've been talking about for months. Zoe was usually asleep by 9pm. I typically took the late shift if she needed it. And Laura was usually good for getting up early when Zoe wanted someone awake, which was common. The first day or two at home without Laura was scary, relying only on myself to find ways to entertain Zoe. But with her help (usually crying or some other way of expressing displeasure) I found a way to entertain her and use up all the time during the days with her, enriching each others lives. It was fun to start her with tummy time and encouraging her to roll over, or take daily walks through our neighborhood. If I was really desperate, I would show her one of her favorite films, Microcosmos -- I highly recommend this for adults and children, or throw her in the car seat and take her for a drive. That usually put her out and allowed me the time to listen to music or one of my Richard Flint tapes or enjoy the silence.
Some major milestones I reached as a stay-at-home daddy were getting her to take the bottle. It was a battle, but once she figured it out, she would even hold the bottle herself. Of course another milestone was introducing the pacifier. She has never taken one for very long unless it was coated in sugar water. And even then it lasted as long as the sugar did and then it got spit out the same way it always had.
Most people pray when they have a problem. It occurs to me that I write the same way. Here I am at 4:30 in the morning on a day I couldn't tell you. I know it is still march, but do not have the foggiest idea what day it is. I'm sitting in a rocking chair beside Zoë's big bed. I told her earlier that she's a big girl now, that she has a big bed. Provided by the hospital for all of our comfort, both Laura and I have slept in Zoe's big bed with her tonight at different times to cuddle and be close. She's in bed alone now. Her monitor's alarm is blaring. It will not pick up her oxygen level. her respiration is low and her heart rate is high enough it would probably give me cardiac arrest before long. Its been consistently in the 160s. For a moment while I have been typing, I got up and held the oxygen mask to her face and it still would not pick up her levels on the monitor. The nurse ran in and we discovered that the sensor had fallen off her foot.
Zoë has been almost in a constant state of discomfort, causing her body to writhe and her to paw at her face. That is caused by a myriad of reasons. High calcium in her body, the morphine causing her body to feel itchy, of course the tumor. Whatever your belief in a higher power, if God really does exist, this disease was created by the devil. I believe it was in her writhing and moving around so much that she probably kicked off the sensor.
I don't know how anyone copes with pain and discomfort. I don't know how Laura and I are coping with having a terminal child. Regardless of this situation, we both want to have more children, but I don't even want to talk about it until after we see this child safely from this world into the next. And then even after that it will still be a while for us to heal and recover from our loss. God bless us. God bless every family with sick and healthy children. Who knows how anyone deals with the harsh realities we face constantly.
Here is my promise...I promise to write here more often, even when there is nothing important to report. The other day I started working in my garden. If at very least, I will let you know how the basil and tomatoes are growing. God bless you! Thank you for reading our blogs.
P.S. One of Laura's best friends made arrangements yesterday with Fenway Park for me to take Zoë into the stadium to show her around. Its clearly for me, since I'm such a huge Red Sox fan, but it would mean so much to stand in front of the green monster where so many great left fielders stood before with Zoë in my arms. A memory I would always cherish.
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