While I have spent the past 6 days emotionally recovering from the bullshit that life can sometimes be…I was handed yet another curveball. As you may or may not know (but you probably do, let’s be honest), me and my 3 kids suffer from an insanely rare, and in fact non existent outside of our […]
Bleeding from…where??! Read More »
Tonight has been one trigger after another, after another. It doesn’t matter what the fuck the cause was. Or the result, or the aftermath. Or even the aftermath of the aftermath. Because it was all wrong. And it was all fucked up. Be it the events of the week (my appointment with my neuromuscular doc
The past few days have been…a lot. Tuesday night I had therapy, which went well. It does kind of feel like it’s maybe a safe place where I can say or think or feel what I want or need to and not have to worry quite so much about being judged or looked down upon
The courage to fight anyway Read More »
There’s a certain desperate loneliness that being in the hospital has to offer. It feels so dark and gloomy and isolating. It seems like I hit this wall with every hospital stay. Around the third day I just feel so…alone. It feels like the entire world suddenly weighs a billion pounds more, and it’s all
A heavy, lonely burden Read More »
Yesterday was a long, long day. We had our regularly scheduled visit with our favorite doctor. Every few months, we go to see the neuromuscular doctor who has been basically in charge of our care for years now and was the one who initiated sending us to the NIH. These visits are always intense, as
It doesn’t matter why. It just is. Read More »
My littlest of loves just got taken back to the OR. We left the house at 4am to get to the hospital by 6. It’s 7:30 now, and they just took him back. It was a smooth and easy morning. The easy part is the before. The rest of our day isn’t promised to be
Surgery days and helpless hearts Read More »
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 »
This entire week has been, if nothing else, a truly unforgettable week. For about a hundred different reasons. While I’m not yet ready to recap it completely, today is our last full day here. It consists of a good bit more testing, labs, EMGSs and EKGs. And who knows what else. Yesterday was hard. Every
Harder than I hoped Read More »
Life is just interesting beyond measure sometimes. Like, traveling to the NIH for myself and my 3 kids to be tested, researched, and hopefully diagnosed. Some words I never thought would ever come out of mouth, yet, here we are. Yesterday was our travel day, and oooh what a shit show it was. We took
Traveling to NIH, days 1 and 2 Read More »
Procrastination has a way of sneaking up on you. You might think you’re good, have plenty of time, ahead of the game…and then you very quickly realize just how wrong you were. I’m flying with all 3 of my kids in 37 hours. So, a day and a half. I only just began packing. Why?
Slowly but surely, we get there. Read More »
