It’s day 4 of my 7 year old son being in the hospital with respiratory failure due to a severe asthma exacerbation coupled with muscular dystrophy. I’ve been there for every second of it. He hasn’t been stable. I couldn’t leave. I wouldn’t leave. Tonight, I came home. I needed to shower. And sleep. And […]
My 7 year old son has been in the hospital since Tuesday afternoon dealing with a “severe asthma exacerbation”. (Picture of my actual life below) His lungs got extremely clamped down, and took their sweet time to make even the smallest amount of progress. It’s been exhausting. He very quickly went from room air, to
Hospital stays and exhaustion. Read More »
You know you’re in a weird place in life when you’re halfway wishing the weekend away so it can be Monday. That’s me today…for a few reasons. First of all…it’s finally a therapy night after a few weeks off while she was on vacation. And in the time she was gone, oh boy did a
Never a dull moment Read More »
We are officially one week away from our big important trip to the NIH. That pretty much means that now is the time to stop procrastinating, and put it into focus. I have to pack. And prepare. Mentally and physically. I’ve never flown with 3 kids before. Actually, I’ve only ever flown with one kid
One week away, and a brain full of feelings Read More »
Today started off rather unexpectedly, but it turned out to be exactly what I needed to happen. Every single week day consists of MULTIPLE appointments for me to take my 3 kids to. Usually, I drop my oldest son off at school, immediately take one or both of the other 2 to therapy (PT or
A “break”, but not really. And the burnout is real. Read More »
It’s that time again…that magical hour I seem to get once or twice a week of complete solitude. When no one is left in the house but me and the dogs. And, oh, is that so very much my favorite hour. No one needs me, no one is talking or making noise or crying or
Self care…wherever you can find it Read More »
If I were to offer you one piece of advice this winter season…it would be that. To absolutely, do not get the flu. My mom tested positive Wednesday morning. I felt like crap when I woke up on Thursday. Had my husband swab me and test me (he works in a lab), and tested positive.
Don’t get the flu, and moms don’t get sick days. Read More »
This morning is another surgery day. This time, for our 5 year old. It isn’t his first, and he’s more upset about having to be hungry (fast) than of being in the hospital. He’s having his adenoids taken out and his nose cauterized. He can literally never breathe, and we’re hoping this helps. His adenoids
Surgery days are hard Read More »
Do you ever create your own holidays? Or special day? This morning, after breakfast, and the kids were asking what we could do today and how I was going to entertain them… I boldly stated that it was “Special Mommy Day”, and the goal is to “spend all day thinking about how to make mommy
Sometimes, you have to force self care Read More »
Yesterday, Phoenix turned 5 years old. I don’t usually recycle words, but I do think I said it best yesterday. To my wild one, the child with more personality than should be allowed to exist in one single body, the most literal and hilarious person I’ve ever met, the child with ZERO filter…and the sweetest
