Exhaustion

I am exhausted. I have had four hours of sleep, so I can imagine that this post is ill advised and out of character. But I've had four hours of sleep and I don't care.

Do you ever feel like the whole world is spinning around you? Life is carrying on while you're just standing still watching and there is nothing you can do about it?

I am so exhausted.

There are many things I am thankful for, but most of all is my family and our home. Our home is our sanctuary. We don't allow conflict or outside stress to affect who we are as people or our relationships with each other. It took years of strife and fighting to get to this place, but it was worth every tear, every fight, every long night, all of it. I would not change anything. I have the absolute best family a person can ask for. The relationships we have built with each other are unbreakable. The web we have surrounded ourselves with hold each of us up even in the hardest of times. And man are times hard.

Did I say I was exhausted?

It's funny. My life feels so contradictory, even from minute to minute. One minute I am so sure that this is the best life ever. We have never ending, unabashed, unconditional love, we have laughter and sarcasm. We have the best kids on the planet. We don't fight or yell, we have learned the art of compromise and grace, like a second language that we speak from the heart. We really don't have a choice. And that's the next minute. The next minute I am overwhelmed, exhausted, stressed beyond relief, sleep deprived, and aching as I watch my kids' teenage years slowly pass them by. Watch as all of the things they love slowly slip away. Sports. Clubs. Friends. We are drowning in school work. Dylan can't walk without a walker or shower without a shower chair. Ali has had a headache every day for nearly 3 years, and is fighting allergic reactions to what we jokingly refer to as the air because we don't always know what she's reacting to. So we carry masks and benadryl and Epi-pens. My purse is full of medicine and my favorite contacts list in my phone include several specialists. The front desk guy at the pediatrician knows me by name, by face, even by voice, because we talk so often. And he is a rock star, as is our pediatrician.

We are blessed. We have people fighting for our kids, trying new things and bending the norms to find things to help them function at their best. But it's slow. It's hours of waiting for a return call from the doctor. It's days of waiting to see if this new medicine is going to make any difference at all. It's walking the fine line between tachycardia and hypotension. It's checking vitals more often than you care to, and hoping your kid doesn't pass out while you do. It's having 4 different doctors tell you something different about a medicine and having to make the decision yourself and hope it's the right call. It's hours on the internet searching for any sliver of information that could explain this new bout of episodes. It's hurry up and wait. Just wait. It's feeling useless and hopeless as you watch your kid wither.

It's also so very exhausting. It's waking up in the middle of the night anxious about push-back from the school. It's trying to remember if you gave everyone the right meds at the right time. It's email after email to teacher and administrator and nurse to try to keep them caught up. It's teaching yourself again so you can teach them. It's tears and anger, and hiding all of it because you cannot for half of a second let them think that it is their fault. It's asking again and again how much they've had to drink, and when their last salty snack was. It's trying to somehow juggle taking care of the house, dealing with the day to day stuff like bills and groceries and laundry, and then simultaneously running from crisis to crisis, trying to keep the little smoldering embers from turning into a forest fire. It's Long days of single parenting as Eric works longer days to keep things going. Lots of phone calls that end in "I have to go, I have a patient" and "yeah, me too." (one of the kids)

And then... It's lots of late night netflix binges and hours long car rides jamming to our favorite music. (Kpop for me and Ali, Hamilton or an 80s playlist for me and Dylan) It's awful, dark, morbid jokes at the dinner table that only our senses of humor could handle. It's video games and DnD and coloring together. It's puppy cuddles and McDonald's runs. It's love and laughter and fun. It's listening to the kids argue, and then say I love you in the next minute when they think we aren't listening. It's love. And laughter. And home.

And it's so very exhausting.