It's been a long time since I last blogged and lots has changed. First off, we had a second baby! Little E has been amazingly typical and we are so grateful. Not so Little C just turned 4 and she's been keeping us so unbelievably busy. To give you an idea of how busy we are and why I am burnt out, here's a snapshot of last week and this week. 10 weekdays, 12 appointments. That's right. TWELVE. And not all appointments are just "show up and the work is done" type of appointments either. Oh no folks. Most of these appointments are "here's your homework" appointments. Little C has both private and publicly funded speech therapy sessions, all 1 hour long. It was also time to visit the pediatrician, dentist, non-invasive ventilation clinic, and the multidisciplinary team (OT/PT/SLP/psychologist). That doesn't include the half day camps that Little C was in last week either. I've been running on fumes for a while now but today the camel's back broke a bit. Actually it broke last week when I completely lost it on my poor child after she repeatedly bit me while trying to floss her teeth. Because our first dental visit made me feel like crap. Never mind the 3+ years that we fought and fought to brush Little C's teeth only to have finally gotten to a decent place with brushing the past few months. Let's add that to the never ending list of things to work on.
Fast forward to today. A simple visit with the non-invasive ventilation clinic to talk about how the CPAP is working for Little C. It was a new respirologist who immediately rubbed me the wrong way when she couldn't wait 5 damn seconds for Little C to attempt saying hi. Saying hi is a really new thing for us. It's not quite a hi, but more of a "haauh..." Everyone, and I mean everyone that we have stopped to say hi to was able to read my social cues (me cuing Charlotte for the practice, modeling how to say hi, and waiting beside her) and would patiently wait for Little C to say "hi". This includes random strangers on walks, in the grocery store, you name it! This physician comes rolling in, talks over us and Little C in her greetings and cuts off our poor girl who started to say hi but then stopped. Then it was 30 minutes of her telling us that we need to sleep train our child so that she can self soothe at night because we had mentioned that she was waking up more often than normal this past month. She tried to hide her cringe when she realized we stay in the room with Little C until she falls asleep, but I saw it. She asked about parenting courses and lectured us on how we really need to have her learn how to self-soothe. Nothing she told us I didn't already know. So we left the appointment having gained nothing but to wait 6 months for another sleep study.
On the drive home, it finally dawned on me why I was so irritated and defensive with this physician. She doesn't know our journey or Little C's struggles. We have worked so damn hard to be where we are at today. She doesn't fight us to put on her CPAP mask. She happily reads books with it on and will sleep the entire night with it blasting air up her nose. I'm not sure how many of you have tried a CPAP, but it EFFING SUCKS. So if I choose to sit in my child's room until she falls asleep because she's got a CPAP on and crying with it is not at all enjoyable, let alone vomiting with it on, then you better stand the eff down.
So I was angry. And with anger always comes tears. And the tears weren't all angry tears. They were "I'm exhausted, frustrated, and I have so little left to give" tears. Our days are filled with appointments and constant work. I don't even know how to juggle all this and still keep our sanity. If we aren't teaching Little C a new ASL sign that we just learned, we are modelling and teaching her how to use her augmented and alternative communication device, or getting to her to try to turn on her voice. Fit in some strengthening activities, a heck of a lot of crying (because she can't communicate what she really thinks), and your "normal" day to day activities and I'm pretty sure we have negative time left in the day.
So that's the rant. Ironic that I have no time but made time to blog. I told the hubs that I need an outlet. I need somewhere to rant about how hard it is to have a child with a disability. How all consuming and isolating it is. I am thankful for the support and love that we have because we would never survive without it, but on days like today, when all it takes are some mindless words of a physician who has not walked 1 second in our shoes to make me feel like I'm not being a good enough parent for my child, I need to remind myself that we are freakin' ROCK STARS.