Monday, December 7, 2015

Hospital Ramblings

A warning before I get started.  This isn't really a quilting post...but there may be some pictures of quilts in I think that counts.  This is a late night rambling post, directed to anyone who wants to read it.  Tonight has been a long night, with a lot of waiting and down time.  So I guess I should start off by explaining where I am and why I'm there.  Tonight my family is at a hospital about and hour and a half away from where we live so that my daughter can have a 24 hour EEG.  Really, it's no big deal.  I think if you have to spend the night in the hospital for a test, there are worse things to have done.

So let's jump back about five years ago to when my daughter was in fourth grade.  I started noticing some strange behavior.  Let's face it, kids will be kids, they daydream and ignore you.  It's what they do. We've all done it.  But it happened with her ALL THE TIME.  You could be talking to her, one on one, ask her a questions and it's like you were not even there.  I can remember saying her name. Jen?  Jenny?  Jennifer?!?  She would look at me blankly and ask, what?, like I hadn't even been talking.  How frustrating is that?

Around this same time, her grades in reading started plummeting.  I LOVE to read.  I just love books.  I had built a library for her through the Scholastic Book Club that boarder lined crazy.  She absolutely refused to touch them.  It broke my heart, but I just wrote it off as her hating it because I loved it.  It's a mother/daughter thing.  Her teacher at the time set her up with an online reading program that we could work on at home to try to improve her comprehension, reading time and accuracy.  One evening, we set down to work on a timed reading.  She pressed the button to start the time, and pointed at the words on the screen as she read.  About three or four sentences into the passage, she stopped reading.  She just stared blankly at the screen and slowly petted the word with her finger.  What the??  I remember saying her name.  She stopped and looked at me and said, what?  I asked what she was doing?  It's a timed reading, why would you just stop?  She shrugged her shoulders and started the clock again.  This time she made it to almost the end happened again.

A few days later, while having lunch with a good friend of mine, I told her about the incident.  Then she told me something that I thought sounded crazy.  She said, "it sounds like silent seizures to me."  No, that's silly...or so I thought until I read about them.  Basically, they are staring spells.  I mentioned it to her teacher, who pondered that for a second and said she would get back to me.

Now fast forward to the begging of her fifth grade year.  Luckily for us, she had the same teacher for fifth grade as she did for fourth.  By now, it started becoming apparent something was wrong.  The seizures became more noticeable to anyone that spent large amounts of time with her.  When shopping in the store or crossing a road, she would just stop and stare at her feet.  There was no moving her.  (Needless to say there was ALOT of hand-holding)  She would be having a conversation with you and just stop mid-sentence.  When she came out of it, she would turn around and walk off, having no idea she had been speaking.  For those who knew what was going on, it was heart breaking to watch.

As the frequencies started to increase, we were able to get a referral to a pediatric neurologist.  It was a rough time.  Family members that were not around her as much, didn't want to hear the word seizures.  Nope, has to be stress at home, basically insinuating bad parenting.  Really?  One EEG later, and it was confirmed, that she was having petit mal seizures.  I was not crazy.  It was my GOOD parenting that knew something was wrong.

So we were able to get her on a great medicine that has worked wonders.  And learned that lack of sleep or not enough rest was one of her main triggers.  We had quite a bit of school stuff to re-learn, but really she caught up pretty quickly.  She still struggles with somethings, and I fear she will never really love reading.  But I understand her frustrations with it.

So that brings us to today.  Five years later we are trying to determine if she may still be having them, possibly when she sleeps.  Tonight they want to monitor her to see what they find.   So we checked in and waited around.

Played some cards and some more cards and debated food options.

Ordered some food.

Got hooked to a monitor.

And killed boredom anyway we could.

She couldn't hold electronics that were charging so I held her iPod so she could video chat, while I worked on blog posts.

Hubby played with graph paper and quilt blocks

And napped

She even broke down and did homework...gasp!  Also note, she brought her quilt with her :)

David even volunteered to sleep on the floor so that we could all be together.  He assured me he had slept in worse places while he was in the Navy, but I still felt bad.  But I'm glad he was there with us.  So 24 hours later, after answering questions like, "what is your name and birthday," (twenty million times) Jen was ready to get a shower and head home.  Hopefully, we should know the results sometime later this week.  I think things will be just fine.

So why do I share this?  One, I know that several of the people I have met online have small children or at the least know and love some.  Until petit mal seizures became part of our lives, I had never heard of them before.  I knew what grand mal seizures where, but not of the silent more subtle ones.  No one seems to talk about them, so today, I decided to.  

Two, kind of as a pep talk. Never question your decision making as a parent.  I know I left my how-to-raise-your-kid manual behind at the hospital and regret it all the time.  Oh, wait that book doesn't exist.  Never let someone else, make you feel like you are doing a bad job, when they may not have all the information and know what is going on.  You know your babies, trust your gut.

And third, something that use to bother me, but I have moved on from.  I use to feel horrible, when I thought about the times that I may have punished her by taking something away, or giving her a time out, or just spoke harshly to her, for not listening, following directions or not doing something.  But I just had to forgive myself.  I didn't know.  And she loves me and forgives me.  We move on and try to be the best parents we can.  Life is not perfect and we cannot be either.  If we hang on to those negative emotions, we just breed more negativity.  

It's late at night and I'm watching my kiddo and husband sleep.  I hope you are still with me.  If you are, I'll give you a sneak peek of something that I hope to post later this week to the blog.


Sandra Walker said...

I have tears in my eyes reading this (that's twice today that I have trouble reading because of tears brimming, finished The Storied Life of A. J. Fikry, ahhh terrific). I wish your family well. Thank you for opening your heart here on your blog, Tish, it's a risk, but I know you will feel the love from QBL back atcha. It's flying fast to you from my corner of QBL. Thank you for your wise words on parenting and on harbouring negative feelings. I will remember your words. Forgiving ourselves is often the hardest of all. Hugs to Jen; love seeing her quilt with her, and your husband who passes the time drawing quilt blocks??!! How incredibly lovely is that? Ahh, we share another love, reading! Your flag quilts look wonderful on the line!Looking forward to reading more about those babies. Ha, didn't intend the segue, but I'm using it: and all the best to your baby. :-) and to you mama bear. mwah.

Anja @ Anja Quilts said...

Thanks for sharing. Good luck with the results. All the best. [hugs]

Aunt TC said...

Thanks for writing this post. Hopefully someone will read it and help someone with this info. Several years ago I was a teacher. I noticed that "Susie (not her real name)" would raise her hand to answer a question and I could tell she really wanted to be called upon. I couldn't choose her each time but when I did, there was a pause, a lon enough pause that made me wonder what was going on. Susie was an excellent student, very attentive, kind, and always willing to offer help or answer a question. After this pause which was long enough that some of the other students began to react but not out loud. Then Susie would give the answer. Soon after we had parent-teacher conferences and I mentioned it to her mom. Her mom said they had noticed this, too, when they were playing games and it was Susie's turn. The mother took her to the pediatrician and after testing, Susie was diagnosed with petit mal seizures. The quilts were nice, too. Howlandquilt at gmail.

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