Rockland Maine

Dearest Readers,

It’s been a bad week. 

No, wait. It’s been a bad month. 

A monster virus entered the house. It took Jude hostage first and Lila, five days later. Jude suffered with high fevers for 6 days straight, croup cough, lost his voice completely and he ended the virus on antibiotics. Lila was a entirely different story. She started off with a frebile seizure’s, from her 105 fevers. After that, it was almost two weeks of suctioning, neb treatments, alternating inhalers, alternating 3 diaper creams, alternating 2 creams for her infected G-Tube site (every four hours), oxygen, vibrating vests every 4 hours, alternating advil and tylenol every four and six hours, diaper changes every 15 minutes (I’m not kidding. It only took a cough, and BAM a blow out diaper), 3 doctor visits, 5 walmart runs for wipes, 3 pharmacy runs, 1 stool sample drop off, and MANY specialist calls. We finally got Lila healthy. Literally, the day she took a turn for the better, Jude broke out with hives. HIVES. Apparently, when he took his last dose of antibiotics, he broke out with hives. Not just regular hives that come and leave in a day or so. No, not us. The universe had bigger plans to watch us all suffer a bit more. These hives grew. GREWWWW. HUGE. 8 inches across. The boy cried. I did benadryl, oatmeal baths, cold compress, cortisone cream. Nothing. The doctor said he didn’t feel comfortable starting steroids and suggested that we should be patient and let it pass. We tried. I can’t even describe the suffering Jude went through for 5 days straight.The hives caused swelling in his belly, butt, thighs, feet and his knee joints. His knees grew 3x the normal size. His butt swelled to the point that he couldn’t fit into his underwear and he walked bow legged. He wouldn’t let me touch him, because his skin hurt. It was around the clock care and the only times I left the house was to run a three miler and I rushed back to continue his care. We eventually started a steroid treatment, and he’s not 100% yet. He had a flare up this morning, to the point that I almost rushed him to the ER (for the third time). He screamed. He cried in pain. The amount of suffering that boy endured this week, hurt my mama heart. Watching him suffer, mentally exhausted me. I probably broke down at least five times this week. A few times while jogging, once of the phone with a nurse, and another time after Penbay Hospital billing department hung up on me.

Today, I woke up confident that today was going to be a good day. It ended up being the cherry on top of this shitty month. I had billing issues with Penbay Hospital (in regards to Lila). I had it out with them. I had it out with Mainecare. I had it out with Lila’s nursing agency. All the while, I was nurse-less and Jude was screaming bloody murder in pain. Jude’s doctor requested that I bring him to the ER, but with Lila’s care, I couldn’t do it by myself. That my friends, is the worst. feeling. ever. I wish I could just throw Lila in the car, rush to the ER and tend to Jude’s needs. Nope. Not even close. I felt stranded. Helpless. Alone. What a horrible day. Probably the worst day ever to be without a nurse. Today, was a reminder that life can be a big fat bitch and that though I wanted to curl up in a dark closet and never come out-I literally had to drag one foot forward. To keep going. I didn’t take it one hour or minute at a time- it was one foot forward at a time. 

Over the last month, I’ve repeated this many times- I don’t care about beautiful houses, fancy cars, vacations around the world, gorgeous jewelry or material items-all I need is a healthy family. For a month. Just a month. I need rest. A month of rest. No pharmacy runs. No doctors visits. No insurance calls. No changing diapers every five minutes. No medications around the clock. No fevers. No suffering. I just want to lay my head down on my pillow at night and not have to worry about keeping my children alive. 

Tomorrow needs to be a better day. 


The life of a mother

ps. A big thanks to our nurses. They’re legit saints. And Daddy.