Well, it’s been nearly a month since I wrote a real post. We’ve had a lot going on, but I just haven’t been motivated to write. I have a lot on my mind, but not much I can write about here. I’ve been hurt by a few comments in the past few months, and it’s made me a little gun-shy to write about certain things. And I am completely aware and accept that writing a blog opens me up for criticism and people’s opinions, and it’s hard to reconcile the two- wanting (and needing) to write, but also protecting myself and my confidence in our family’s decisions.
The thing about honesty is it sometimes leads to really awkward situations. I’ve been making a conscious effort to be more honest with people, meaning, instead of making an excuse, I will tell the real reason why I can’t do something or am going to do something else. Several times, this has backfired- nothing major, but just some uncomfortable conversations or slightly hurt feelings. And I think that maybe it just would have been better to tell a white lie. Sigh.
Finances are particularly hard to be upfront and honest about. This time of year is SO expensive, and incredibly stressful for me. I dread December. Gift giving is not my love language (neither giving nor receiving) and having little extra money to buy gifts makes the whole thing really hard. And being honest why I can’t attend certain events I think leaves me and the other person kind of embarrassed. I wish “I can’t afford it” didn’t have to be such a shameful statement.
But the holidays aren’t all bad. We’ve been singing Christmas songs in the car (my radio is broken and we can’t afford to replace it, ugh) and it’s so cute to hear Charlotte learning my favorites and singing along. We actually decorated the house a few days before Thanksgiving, and that feels good to actually have done it and to see the ornaments I’ve collected over the past few years. I have A LOT of dog ornaments- ha ha. We have a little nativity and I’ve been talking to Charlotte about the Christmas story. Somehow, she’s got it in her head that both Mommy and Santa were at the birth of Christ- who knew?! We have an Elf on the Shelf but he’s still in his box- do I really want to start that craziness when my kid isn’t even 2 yet? I took Christmas card pictures the other day, and I got a great shot within about 3 minutes. No stress. Instead of trying to pose my crazy toddler and kid that can’t sit up on his own, I threw them in matching Christmas jammies and had them cuddle in the bed. Precious. And done. I can’t wait to show you.
I’m struggling with presents for the kids- with the idea of being fair. I’ve bought Charlotte several things- not a ton, because the last thing we need is more clutter in here, but some things I think she’ll really like a play with. She’s really into coloring right now, so I got her an easel, art supplies, and of course, stickers. I also got her a stroller for her baby dolls, a purse, and I think I’m going to get her a potty seat (yikes, here we go). For Grayson, the only thing I’ve bought him is a little toy electric piano. I’m thinking of getting him a guitar too, because that’s what they tell me he likes the best in music therapy. But after that, I’m out of ideas. I can’t afford to buy him stuff just for the sake of giving him presents, but I feel awful that his Christmas morning pile is going to pale in comparison to his sister’s. Logically, I know it’s just the reality of his situation, but it still hurts, and makes me feel guilty. Did I mention gift giving totally stresses me out? There’s some honesty for you.
Anyway, switching topics, here’s a few other updates…
Grayson had a tube change today. The best thing I did was schedule the procedure before the tube broke on its own and forced us to the ER. He is participating in a research study for Mito patients on anesthesia- so more than likely the drug he got today was something different than his usual protocol. I was a little nervous, but he did great- he was actually awake by the time I got back to the PACU- that has never happened before. I didn’t realize that being in the study requires a follow up with his doctor tomorrow as well as blood draws tomorrow and Saturday- ugh.
He has been on oxygen at night for several weeks now. His nurse reports that he’s sleeping better on it (although on the nights she isn’t here, that doesn’t seem to be the case) and he hasn’t had any seizures since we started, so I guess it’s a positive thing. He hates the nasal cannula though, and even fights me putting it on him in his sleep. Overall, Grayson is doing really well right now. He’s just the sweetest, cuddliest little boy and he loves to laugh. And I do think he’s happy. And we are so excited about a special opportunity he has on Saturday- I will post more about that this weekend!
We got rid of Charlotte’s bottle this week- cold turkey. Eek! Last weekend at the ranch, she refused to drink her bottle because the brand of milk was different than we have at home. So when we got home, after 3 days of no bottle, I asked her if she wanted to say Bye Bye to her bottles. She agreed. She hasn’t made one peep about them until tonight when she requested one. But I told her that remember, we said Bye Bye to the bottle, and that was ok with her. She is having a lot of trouble falling asleep though. We do a story, talk about our day, and prayers and she’s fine until I put her into bed. Then screaming. I’m totally letting her cry it out because the last thing I need to start is bedtime shenanigans. Hopefully this off-and-on screaming for an hour won’t last too long. It’s so weird to me that she is slowly letting go of her “baby” things. She’ll be two next month. Two!
I hope you all are doing well and that these last days of 2014 find you happy, healthy and as stress-free as possible.