Horrid Week


Laelia and the Heater

Bleckidy bleck week. That’s all I have to say. Here’s the breakdown:  

Sunday: Found out my Uncle Ray had passed away.

Monday: Baby’s accident. And the sell of the Union Tribune (Charley’s job) goes  through.

Tuesday: Late to work because had to make sure baby was not concussed. Hard day for baby  at OT.

Wednesday: Crazy lady at Target. Laelia’s splint doesn’t work right. OT on vacation.

Thursday: We fear for Charley’s job. Massive lay offs at the UT.

Friday: Charley’s job (and subsequently Laelia’s insurance) are safe for now. We decide  we  can’t  fly up for the  funeral.

Saturday: Family emergency pops up here in San Diego. Family comes to us.

Sunday: Mother’s Day. Remembered Mom. Hard day.

Today Monday: My work gave me a bereavement day.  Family comes over.    I finally get to blog. (So sorry it’s gonna  be long.)  

It’s been a hard week. I have really been missing my mom a lot recently. Of course I keep telling myself that she’s having a better Mother’s Day than everyone else, but still, I wish she were here. She died two days after Mother’s Day back  on May 15,  2001. Mother’s Day is always hard for me. Mom’s brother, Ray, died Sunday. That was hard on my family.  Charlotte, Linda and Bud are the three surviving family members of my mom’s nuclear family (parents and siblings). So no wonder this time of  year would have me thinking of family. And I  hate thinking of how my family is getting whittled down to nothing. So by the time Laelia is my age, how many of the people who really made an impact in my life will be in her’s?  

Then there was baby’s accident. It involved my genius idea to put a ceramic bowl filled with drying flower petals on top of the heater so the cats couldn’t get to them. Then Laelia with her new mobility shows up and kicks the heater (which makes  a cool reverberating noise), and that bowl drops down and shatters on her face.

As you can see from the picture above, it fell a long ways. It happened before Charley left for work, but this was the same day that the UT was sold. Not that coming in late would make a bad impression on the new owners, but we just didn’t know. So I left work and rushed home to take her to the doctor. She was bleeding out her mouth and facial bruising was starting. I didn’t know exactly where she was hit or how bad it was so I was relived when the doctor told me it was fine. How scary! It was only  the inside of her lip  that was cut which  caused the bleeding (that didn’t require stitches), and  even though it hit her face pretty hard, it  missed her eye!  (Came REALLY close though!) And it  looks like it  didn’t hit her head, although we still had to watch her for signs of a  concussion. (Which kept us all up all night.) The rim of the bowl left a mark that  went from under her eye, to right  down her lips  all the way to her chin.


Now she is doing a lot better and the bruises are almost totally gone. It’s only when I feed her something salty or try to brush her teeth that I remember she’s hurt. And she let’s me hear about it too! :)


Then the next day we have to go to OT (occupational therapy) and I have to hear, “What happened?”  from everyone we meet. :-/ Not fun. What else was not fun was that it was a crazy appointment because our OT was leaving on vacation, and since she’s the best, all us parents freaked and got last minute appointments. So it was very stressful. We only got one splint made, but it doesn’t work to wear at night (because it cuts off too much circulation) so we have to wait until Jill gets back from vacation to start using it (and of course she still has to make one for the right hand.) We learned that Laelia’s hands are tending to drift  (little finger leads her  hand to the side) so we added a new stretch that pretty much just holds her hand straight while we move the thumb to the side to straighten out the hand. Turns out it’s doing this on  both hands because she’s missing the little muscles in her forearms that would keep  them straight. More muscle loss?! How much muscle can this kid be missing?!

Then the next day is my funny Target story. When checking out, the lady at the counter asked me if Lali could walk yet. I just said, “Not yet.”   The lady looked so confused. “Well why not? Have you tried? Try right now and see if she’ll do it!” Of course I have this internal discussion on the merits of explaining arthrogryposis to a stranger verses dropping my kid to the floor. But the next thing I know, to the floor she goes! I let her down feet first so she of course slides to her tush and starts exploring the dirty floor. “See, she’s not ready yet.” I say and then pack my bags. The lady was mumbling something about me never letting her try  because I  hold her all the time, or some such lecture, but then  let it drop. :)

Thursday began the most stressful part of our week.  We thought Charley had lost his job, but thankfully that’s not the way it turned out. Still, for  half a morning we were sure  Laelia would not be able to go to therapy anymore and we  would have no place to live. Or at least that’s what I was thinking in a panic.  

Then  we had an entirely different issue  down here that  my family has had to deal with. Two of my family members came down which was nice since we couldn’t go up to the funeral, but the  circumstances surrounding their  visit are  of course not good. I just learned a little more about it today, and am  keeping them in my prayers.        

Well now that I’ve  vented about my no good, very bad week, I remember how my mom would always  make me “count my blessings” if ever I complained too much. So here goes:

-We signed up for a CF walk to support the Cystic Fibrosis foundation. It’s happening May 16th. We’re taking Lali in the stroller. To donate to my  team click here. We’re on the team Emma’s Angels. Emma’s mom was very supportive and comforting to me  when Laelia was first diagnosed. Even though Emma’s condition is very different from Laelia’s condition (we even go to different floors of Children’s Hospital), it’s amazing how similar our  struggles are!

-Got to be with friends and family this week.

-Laelia is more mobile than ever before.

-Charley still has a job!!!!!!!!!!!!

-My job has been  flexible.

-Charley gave me an hour massage when I was feeling down. Just because! Then I used the gift certificate that the president of my company gave me for another hour massage, only a professional one this time. But I still liked Charley’s better.  :)

-And best of all (because I’m weird like that) my cousin Charilyn and  Charley and  I got everything done on my housework to-do list!   Hey, that stuff makes me happy. :)



There, happy Mom?! :)

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