“I love my mom so much!” Sarah told her sitter Tuesday night before bed. This is not a usual utterance to come from her. A few hours later she had a seizure, the first since she was 8 weeks old. That made her statement all the more poignant. Later, as she recovered from the seizure and sat up suddenly to tell us “I’m back,” it felt like the most perfect moment in true Sarah style.
I never thought I would pray so hard so often through Sarah’s life from birth through now. There have been at least four times of being deeply scared and praying hard. And that isn’t even counting when she had pneumonia or a concussion!
When you get home from the hospital after having a seizure, you and your sister may be allowed to have a hot dog dinner in mom and dad’s bed while watching a show on an iPad.
I decided to keep Sarah home on Thursday so she could rest and I do think that was important. I just didn’t realize how much I needed to be with her for my own recovery. My cells needed to be reassured of her presence and well-being. We slept and rested all day.
Now, for some more normal moments from the week....At one point Sarah was upset about something, and Amy wanted to help so she set up the Cat in the Hat I Can Do That game that Sarah loves. I was busy and so they decided not to wait for me to play! They were playing together all on their own! They have played games many times before but a grown-up has been there to help.
When Sarah came home from school Tuesday afternoon, Olivia (our cat) was by the door. Sarah said hello to her and started petting her and said Olivia was glad she was home.
How Amy sees herself in her imagination, a self portrait: a black cat with a pink nose and long eye lashes and a pink smile.
Amy can tie her shoes!!
I know now that Sarah doesn’t like clothes that get staticky. I don’t remember her articulating this in the past but twice this week she has talked about it!
We celebrated Christmas early because of our travel plans and we set a new record for early. Last year it was 4:45. This year the girls came in to our room at 4:15am! We made them wait until 5 before we actually got out of bed. I am so grateful that Christmas could be normal. The possibility that it wouldn’t be flashed before my eyes after the seizure, and as I write this I realize how little guarantee there is going forward. Part of me could be scared all the time and yet that is no way to live. Little by little the fear subsides. The fact that Sarah and I get grumpy at each other again seems like a very good sign of things returning to normal!
Normal. Hmm. Or not quite yet. I wrote the above words last night right before Sarah puked voluminously in her sleep. Amazingly enough I heard the beginning warning in time to say “Sarah!” which alerted Carl. As I fumbled for a light switch Carl rushed to her side. I lobbed a clump of washcloths towards her head and it landed just in time for Carl to prevent a more involved clean-up operation. As it was we went through all of the towels because this puking happened twice. What I hadn’t anticipated was how high my adrenaline would spike and how terrified I was to fall asleep afterwards. Our hotel room has a separate room for the bedroom and the girls are in the living room pull-out couch. I wanted to sleep on the floor next to Sarah or to move Amy into my spot so I could take hers. Carl pointed out that then I would wake at every slight movement from Sarah. So I stayed in my bed and eventually sleep won against my fear and vigilance. Reasoning that even if she pukes or has a seizure she won’t die doesn’t seem to help my fear. So I’m not back to normal. I don’t know if or when I will be. What is normal anyway? This may be my new normal for a while.
Lots of love to all of you. Your love and support are incredibly meaningful.
I never thought I would pray so hard so often through Sarah’s life from birth through now. There have been at least four times of being deeply scared and praying hard. And that isn’t even counting when she had pneumonia or a concussion!
When you get home from the hospital after having a seizure, you and your sister may be allowed to have a hot dog dinner in mom and dad’s bed while watching a show on an iPad.
I decided to keep Sarah home on Thursday so she could rest and I do think that was important. I just didn’t realize how much I needed to be with her for my own recovery. My cells needed to be reassured of her presence and well-being. We slept and rested all day.
Now, for some more normal moments from the week....At one point Sarah was upset about something, and Amy wanted to help so she set up the Cat in the Hat I Can Do That game that Sarah loves. I was busy and so they decided not to wait for me to play! They were playing together all on their own! They have played games many times before but a grown-up has been there to help.
When Sarah came home from school Tuesday afternoon, Olivia (our cat) was by the door. Sarah said hello to her and started petting her and said Olivia was glad she was home.
How Amy sees herself in her imagination, a self portrait: a black cat with a pink nose and long eye lashes and a pink smile.
Amy can tie her shoes!!
I know now that Sarah doesn’t like clothes that get staticky. I don’t remember her articulating this in the past but twice this week she has talked about it!
We celebrated Christmas early because of our travel plans and we set a new record for early. Last year it was 4:45. This year the girls came in to our room at 4:15am! We made them wait until 5 before we actually got out of bed. I am so grateful that Christmas could be normal. The possibility that it wouldn’t be flashed before my eyes after the seizure, and as I write this I realize how little guarantee there is going forward. Part of me could be scared all the time and yet that is no way to live. Little by little the fear subsides. The fact that Sarah and I get grumpy at each other again seems like a very good sign of things returning to normal!
Normal. Hmm. Or not quite yet. I wrote the above words last night right before Sarah puked voluminously in her sleep. Amazingly enough I heard the beginning warning in time to say “Sarah!” which alerted Carl. As I fumbled for a light switch Carl rushed to her side. I lobbed a clump of washcloths towards her head and it landed just in time for Carl to prevent a more involved clean-up operation. As it was we went through all of the towels because this puking happened twice. What I hadn’t anticipated was how high my adrenaline would spike and how terrified I was to fall asleep afterwards. Our hotel room has a separate room for the bedroom and the girls are in the living room pull-out couch. I wanted to sleep on the floor next to Sarah or to move Amy into my spot so I could take hers. Carl pointed out that then I would wake at every slight movement from Sarah. So I stayed in my bed and eventually sleep won against my fear and vigilance. Reasoning that even if she pukes or has a seizure she won’t die doesn’t seem to help my fear. So I’m not back to normal. I don’t know if or when I will be. What is normal anyway? This may be my new normal for a while.
Lots of love to all of you. Your love and support are incredibly meaningful.
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