I have desperately needed to post this past week.
I.Just.Have.Had.No.Time. To say that things have been crazy around here is a bit of a joke. So this post is going to be a bit all over the place as I try to piece together the posts I’ve been writing in my head the past week.
I’ve mentioned before that my mom has a disease called Arnold Chiari Malformation. There is no cure and it can be debilitating. For the past few years, and big time in the last few months, we have all noticed a steady decline in my mom. 18 years ago she had surgery (two shunts in her head) to help with the most severe symptoms. We’ve been suspecting that the shunts aren’t working, but to be honest we can only really handle one crisis at a time and the accident has pretty much dominated everyone the last two years. Strangely, when she flies her symptoms seem to go away for days to months. It’s like getting my mom back for just a small window. Both my parents have been in denial that anything is wrong. My dad gets frustrated and impatient; my mom just continues to live in a fog.
C and S took it upon themselves a few months ago to do some more research and get to the bottom of ways in which we can help mom. The knowledge has been both empowering and terrifying. My poor mom. She has been suffering in silence without wanting to burden us. Symptoms she’s been experiencing include severe sleep apnea, chronic fatigue, UTI’s , dizziness, trouble swallowing, nausea, hearing loss and bladder control problems. Last week things took a serious turn for the worse and she seemed completely out of it. C finally called the specialist (THE GUY for Arnold Chiari) at Johns Hopkins and had her records sent up. Happily, he accepted her as a patient on Friday morning (her appointment is next Tuesday), but by then she was in a major decline and my dad was paralyzed about what to do. He couldn’t get her out of bed but kept on insisting she was fine. Finally, C drove over there on Friday afternoon and called an ambulance.
That night in the hospital was horrible. She was completely out of it, anxious and uncomfortable. When we told her she was being admitted she had a total anxiety attack—shaking, crying, mumbling. It was awful. She started throwing up. C and I took over for my dad and held her and got her to just breathe while they gave her some Ativan to calm down. Ultimately, they diagnosed her with a severe UTI which had travelled to her kidneys and blood stream. Supposedly her neurological issues could be directly attributed to the UTI.
Meanwhile, back at the ranch….I was supposed to be driving down to VA Beach for a soccer tournament for D, while K was handling the other two soccer tournaments back at home for A and M. E was going to a friend’s sweet 16 party at the beach all weekend. I was able to cancel our Friday night reservation without any penalty and decided to head down in the morning since he didn’t play till noon. Poor D was disappointed (this was his first away tournament), but he understood that I needed to be at the hospital. I got home at 11:15 and still had to pack. I got to bed about midnight and was up at 6:30 to head out to get down there in time. I tried to keep the mood light for D and L, put on new movies for the ride and handed out snacks. We got there with fifteen minutes to spare. I got to the field, found his team, sat down and burst out crying. I had been running on adrenaline and fumes for 48 hours and was just done. Thank God the parents on the team just let me be until I was able to calm down.
The tournament in terms of soccer stunk. They lost 2 out of the 3 games and their coach was pretty negative. They are only 8 and 9 years old. D in particular gets the brunt end of his yelling. I was so emotionally unstable I almost ran across the field and strangled the guy and told him to leave my little boy alone. I tried to make it fun for the my boys and we spent some time on the water at my aunt’s in between games, had fun in the hotel and spent the afternoon in Williamsburg on our way home Sunday…36 holes of mini-golf, cheese shop sandwiches, Wythe candy shop treats, and pictures in front of the W&M football stadium. D needed it. It was nice to just focus on my two little guys.
At the back of my mind I was so worried about my mom, but life still has to go on and my boys needed me right then. I tried to shield them from the upsetting phone calls with my dad and sisters about mom’s discharge and next steps. They didn’t need any more worries.
You may have noticed that my discussion of this crisis only involves my little sisters C and S.
Where was CA? Wait for it, wait for it…you’re not going to believe this…she was in Ukraine.
Yes, you heard that right. She left for Ukraine last Wednesday and comes home today after a few days in Ireland. She didn’t tell any of us she was going, including C who called her on Wednesday to give her a mom update.
My therapist almost didn’t believe me when I told her.
This is the same person who says MG and KT are so traumatized this time of year that they can’t participate in a balloon release about their mom and dad, but she can leave them for a week. Why? Because she got a free trip through her karate club and college and she wanted to go. Without telling any of us.
I am so baffled and annoyed, I don’t even know what to say.
L talked about death for 45 minutes this morning. He continuously asked me if he was going to die. Were we going to die? Was Oreo (our cat) going to die? Can Aunt Jeanne and Uncle Mike see us in heaven? Can they ride bikes in heaven? Can they come back for his birthday party? Is their house in heaven? Was M always in our family? Will she be with us forever?
I tried to answer him without crying…not very successful. I told his pre-school teacher and warned her that he was a bit “off” today. I called my mother-in-law to be prepared to answer heaven questions.
I just wish he didn’t need to talk about these things.
D had nightmares all night on Tuesday night about car accidents and not being able to find us.
I’ve got nothing to say about that. Sigh.
For school, M had to write about what she would do it if she could be a little kid again for just one day.
She said she wanted to watch care bear movies and play with her sister E.
She told me she didn’t want to write about her parents because she might make her teacher cry. She whispered she didn’t want to cry either.
She left the room and I cried.
I miss Jeanne. I want her home. Her girls need her. Her sisters need her. My parents need her.Life sometimes just isn’t fair.