Blaise woke up promptly at 7am, “I am hungry mom, I need an apple.” Today is our day to sleep in, I was hoping for just 20 more minutes, well nope, not today. I got up and BAM. Holy, you know what, migraine city. I don’t typically get headaches, let alone migraines, up until recently. I think to myself, “I am fine. I have medicine for this, I will rest before work, this shall pass.” Six hours later, 2 pills later, a nap later, and I still think my brains are ready to come out of every possible crevice in my head. Oh did I mention today I decided to start my juice cleanse/fast/feast.
Probably not smart because I am going out-of-town on Friday and well, let’s just say it’s about that time of the month. I went forth with reckless abandon, thinking I made it four days last time, I can definitely do four days this time. Ha! At just around 1:30 I was ready to eat my left arm for lunch. I started thinking. Listen to your body, what is it telling you, it’s telling you to eat. I had some nuts. Headache still here.
7am in my house:
Rachel: “Blaise you need to get on the scale it’s been a while.”
Blaise: “Okay Mommy”
Rachel: “Oh my god you gained 4 lbs. What the heck. I did everything the doctor said. How could this be?
My husband senses a major meltdown and hides under the covers. My heart starts beating. Oh my god. I hate PWS. I hate scales. I hate food. I hadn’t planned on getting on myself, having gorged on some serious Italian last night, and the night before, but of course I did anyway. I stepped on. OH MY GOD I am up another 10 lbs. Panic sets in, sweat beads are forming on my forehead, my voice deepens, every living thing in my path should run for cover. I deal with panic, I ask for help from good friends and move on with my day. Experience and release, I hope.
WHAT YOU SEEK IN LIFE WILL FIND YOU
I am sleeping in my bed when my phone goes off. It is 1:45 headache is still raging, it’s Blaise’s teacher. Shit, do I answer? Is it important? Oh god, I want to sleep. I answer. Conversation goes as follows. “Blaise had an accident, a big one, he wet his pants big time. Oh and there are no clothes here that fit him, they are all too small, oh and by the way he needs bigger pants his butt keeps showing.” Well, after that mouth full I am fully awake. I rub my eyes, put my shoes on and head out the door. I start the car, oh I need to bring clothes, my child is naked in his class. I get to school and he is wrapped in a blanket, naked from the waist down. Conversation from phone continues: “Blaise needs BIGGER pants, his butt crack shows, he is too big for his clothes.” Yes, I get it.
Universe said to me: You wanted to deal with this today. You asked for it. You put it out there. I didn’t say how I would give it to you, but I did. So the universe presented me with this horrible and ugly situation with my son. For the non PWS parent let me explain why such situation is ugly and horrible. Our kids gaining weight is the ultimate enemy, (the bigger PWS kids that is). After leaving the doctor in January and her saying no more weight gain, another four pounds feels like I have an elephant sitting on my chest.
I pulled up my boot straps and drove his little hiney down to the store and got new pants. Situation handled, NOT.
Said voice in my head(in one long breath): You are failing as a PWS mom, this is too much to bare. I have to monitor everything he eats, make sure he gets exercise and therapy, I have to practice reading, writing, and math at home, dole out countless medications everyday, make sure his GI tract is functioning, make sure he is breathing at night, keep him safe from food, help him dress, brush his teeth, use the bathroom properly, give his GH shot every night, drive to Atlanta and Florida for countless doctor appointments, and there is too much more to list. OH AND SHIT HE GAINED 4 LBS, like I need one more thing.
This is the voice inside my head. Sometimes I wonder how I get the courage to wake up in the morning and face another day of battles and victories, or joy and hurt. All I know to do is keep moving forward, connecting with my support system, and write.
My mom was here for 2 months when I got sick, she is an angel from heaven. Just knowing I had somebody to turn to at any point in the day was heavenly. I still have that, via phone, but I have it. PWS can make you feel so alone. I don’t feel alone today, but in the spirit of ABTTT(always be telling the truth) I am admitting that today I am overwhelmed and exhausted. If it was weight issues I wanted this morning I sure got them.
Sometimes I can do all the right things and the outcome still doesn’t fit my plan. This is that such case. I did everything the doctors told me and it still backfired. Time for plan B. I will always turn to plan b, and then c. I will do whatever it takes to get it right for Blaise. I want him to live a happy life, I want him to be healthy and fit, and move with ease. I will tackle this latest monster. I am tired and don’t know if I have the energy for monster slaying, but there is a job to do and so I go forth, with reckless abandon, because I love my son.