I keep feeling like I should be posting more often but I can't believe how fast time goes by and all of a sudden, bam! it's April.
Anyway, I do enjoy writing blog posts, it's just finding the time to sit down and write is increasingly difficult everyday.I just feel so tired by the end of the day, the last thing I want to do is write. Tonight though, I need to stay up, so writing si the one of the things that will help me not fall asleep. For the nth weekend in a row, we've found ourselves in this same situation, having to take turns on night shifts because either the nursing agency couldn't find any nurses available to work the weekend, or the nurse called in sick at the last minute. Tonight, it was the latter; this nurse came on Wednesday to train with Jill and Betty, but left after an hour because she said she wasn't feeling wel and that the room was too cold. We then had her come yesterday and finish the training, I even asked her before she left, "you're sure you'll be ok for the weekend?" and she said yes. Of course, she called at 6 pm (when her shift was meant to start) saying that she was feeling feverish and she wouldn't make it, which of course means she'll be contagious if she tries to come tomorrow and I can't afford Leah getting sick.
It's not too bad, since my wonderful mommy happened to be here and offered to come over at 3 am and work from 3am-3 pm so that we can sleep and get our laundry and groceries done tomorrow. She's also coming back that night at like midnight to stay with Leah until 6 am when the Monday nurse comes. We're really lucky to have her, she's saved us so many times in this same situation. Sometimes she can't, and we stay up all night, but sometimes she is a huge help.
I don't really mind it too much though, Leah has been having better nights recently, sleeping at least a good chunk of 3-4 hours at night. She's been teething pretty bad since last weekend, so she's been a bit more fussy, but her top molars (left and right) finally broke through and now she just has 2 incisors n the bottom that are coming in. Poor thing, gets 4 teeth at a time, and suffers so much. So, of course she's been drooling like crazy and her nose has been super runny too. At first we thought maybe she got a cold, but then I felt her teeth and knew it was that.
Anyway, as I was saying, I really enjoy spending the night taking care of Leah, we sometimes get so used to the nurses, that it's nice when they're not around because it feels more intimate. Of course, they are a huge help and take care of her so well, so we think they're amazing, but I appreciate the personal quiet time I get with my daughter too. Looking at her now, peacefully sleeping in her bed, I get so inspired by her. She is my hero.
I actually do have some news, although this time it's related to Leah, but not quite about her. It's about me.
I got a call yesterday as I was shopping for final ingredients for our Passover Seder, from the UCLA genetics office. They wanted to let me know that they had received the results back from the blood test that I took the last time she was at the PICU. It looks like I have the same exact mutation that Leah has. I obviously don't have the same symptoms as she does, so it's unlikely that I'll develop it, but there is always that small chance. It was a bit shocking at first, but I've decided that I won't worry about it until there is something to worry about. If there's anything that my daughter has taught me it's to live in the present, and appreciate every minute we have together.
I never really thought I'd be a mother of a child with disabilities, but now that I am, I feel like I'm the luckiest mom in the world. That probably sounds strange. Of course, it is very challenging because you need to learn so much more about caring for your child than before, but it's so incredibly rewarding. The friends that we've made because of her, the community that we are part of now, the truths that I've discovered about myself, they are worth so much more than I can imagine, and it never would have happened, had she been just a regular kid. I know that she'll never be just a regular kid, and it hurts me to see her suffer, but I also see her enduring, fighting, living, despite everything that was said about her.
So, I started writing the above when I was watching her on Saturday night, and got busy with the baby, so I did not get a chance to finish writing. I would like to write more this week though, but now I'm at work and I can't :(
I'll write again soon.
Thanks once again to all of you who have been helping us out, you are amazing