After Mirabel came home from the hospital for the first time she still had to been seen by her doctor every week. My job at that time involved on-call shifts so I worked it out with my boss that I would take extra on-call shifts every week in exchange for only working Mon-Thurs. My co-workers had been very generous, gifting PTO to cover the weeks I took off after the birth but I had run through most of that. Being able to take Mirabel to her appointments without using my time off was invaluable.
After a few months the time between her appointments was extended but having that extra day was extremely helpful. Her regular appointments were with her cardiologist but there were still physical therapy appointments, regular pediatrician appointments, audiologist, dermatologist, dentist, neurologist…
When Mirabel was three and a half I switched jobs, no more on call and more demands on my time. But, my new boss asked if I wanted to keep that schedule and it was so much easier to get to any appointments I kept the 4 ten hours shifts. Sometimes I feel a little disconnected from my projects when something happens on a Friday without me but it's worked out pretty well overall.
As weird as it is to say (or even think) I am looking forward to working an extra day each week. As well as it has worked out for us, Friday's alone with Mirabel and now both girls has always been hard for me. I get very emotional on Fridays, sometimes really depressed. Maybe being away from work and not having an agenda like we usually do on weekends, gives me just enough space to relax and fall apart. In addition to the mental health benefits, I think it will help with work, especially considering the large projects I am starting. As a family we operate better when our routine isn't disrupted; with Mirabel starting Kindergarten next month it makes sense logistically too. Being the pick-up parent, working fewer hours each day will give us more flexibility and time to deal with picking up kids, making dinner, shopping, playing, going to the library and everything else that we try to cram into the two hours between getting home and putting the girls to bed.
I still have an email in my Drafts folder from 2011. I felt like we had hit a milestone and I wanted to update the blog. For the first time in her short life Mirabel went to bed without any tubes or bandages. She wasn't wearing footie pajamas with a hole cut in it so we could feed her overnight; she was wearing a nightgown. It was such a relief to worry less at night. I never sent that update, probably because as relieved as I was, I was still holding in so much.
With a new schedule for all of us and a new school for Mirabel it really seems like the end of an era. Some of the best things that have ever happened to me have been in this era. Cristy and I bought a house, got new jobs, had two amazing children, got two bunnies, a dog and got used to our cat peeing on things because we got a dog.
For all the great things I will not be sad to see this era end. This era has included three open-heart surgeries for Mirabel. I almost used the word "endure" here but I realized that doesn't accurately describe how Mirabel deals with her problems. It's funny because Mirabel can be very dramatic. If you'd seen her cry "I don't like using my legs!" in an attempt to avoid waking three feet to put a cup on the table you might not guess what she's capable of. I was worried that her third surgery would be very hard for her because she would be so much more aware of everything. In the end it seemed like more of an inconvenience for her. In no time she was out of bed and doing laps around the floor, the nurses counting each time we passed, Mirabel pushing a wheelchair that carried her oxygen and the suction for the tubes that were still draining fluid from her chest.
This third surgery was planned before Mirabel was even born and I always thought that would be an end of sorts. In reality, I seem to have stored up all my trauma until I knew the surgeries were done and, over the past year I've been trying to manage the flood gates of fear and anxiety. Only in the past couple months have I felt I'm getting a handle on it, through therapy, medication, managing my sleep issues and lots and lots of support from friends, work and mostly Cristy. I am writing this about me but we've both struggled. We get on each others nerves a lot over smaller stuff but somehow Cristy and I have developed a system where we can look at each other, acknowledge it's a shitty day, that we're both jerks and still know we'll try to do and feel better tomorrow.
So here we are, August 2014, with a 5 year old heading to Kindergarten and a two year old who is as delightful as she is maddening. Our next year will be filled with schedules and work and potty training and all of us crying and yelling at each other and singing Let it Go but it will also be filled with learning and biking and sleepovers and laughing and jujitsu and hopefully learning some new songs!
Saturday, August 16, 2014
Wednesday, January 8, 2014
Luckily no news really is good news. Our hospital stay was a short one and we've only been back for check ups. Our departure was dramatic though. The morning we were to be released Mirabel fell getting out of bed. So, they discharged us and then we went down stairs to the ER where we spent 8 hours having her front two teeth removed. But you know Mirabel, that didn't slow her down. She was home and jumping off things right away.
We had really nice Holidays. Thanksgiving at Cristy's brother's house, Christmas Eve at ours with the her family and then Christmas morning was just us and the girls. On New Year's Eve Cristy and I actually stayed up past midnight (barely).
We haven't changed Mirabel's medications since her last hospital stay just to be on the safe side. and we would just settle back into our regular routines but we decided life wasn't crazy enough so we are bringing home a puppy on Saturday!
Well, take care and have a great 2014.