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Tag Archives: FPWR
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It Finds You

4 Mar

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.

juice fast

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.

Rewind:

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?

hate the scale

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.

elephant-on-the-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.

monster slayer

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Feeling Hungry

3 Jan

DO YOU KNOW WHAT IT IS LIKE TO FEEL HUNGRY?

HE DOES!!!!

Today is day 2 of my juice fast. Today is also Blaise’s birthday. I am not going to lie, today was really hard. I was really hungry today. Worse than yesterday. Let’s not forget to add the massive headache and acne breakout in the mix.

Today I really understand what it is like for my son.

Today I understand what it is like to have Prader-Willi Syndrome. I know what it must be like for Blaise when everybody is eating cookies and cake, and hamburgers and fries, and he can’t have any. Or if he does have any it is a teeny tiny amount, while all the other children can eat until they are full.

Today I understand what it is like when the house is filled with smells of food and you are starving, but you can’t eat.

Today I understand what it is like to sit at the table with everybody while they eat a yummy meal, but you can’t eat.

Today I understand what it feels like to have hunger pains that don’t go away, no matter what you do.

Today I understand what it is like to be so hungry that all the rest of your body parts hurt.

There were so many times today that I wanted to eat, that I wanted to give in, but didn’t. I would not let that happen. Today was the most important day of my fast. Today was Blaise’s birthday and so today I honor him by being hungry. Not just a little hungry, but really hungry.

So now I know more than ever that we have to find a cure. I want to release my son from the prison of hunger. I want to free him from pain.

When you are hungry it is all you think about. When you are hungry the hunger pain takes up so much space in your brain. Can you imagine trying to learn in school when you are starving? Can you imagine trying to have fun and play with your friends with a hunger pain gnawing at your insides? Let me tell you, it is really hard.

I know that Blaise has grown up knowing this pain, I know that this is all he knows. For me that is not much comfort. I am dedicated to finding a cure for my son. I will do whatever it takes. I will do everything for him.

If you are reading this and you haven’t eaten dinner yet, don’t. I ask you that one small thing to honor my amazing Blaise on his birthday. Just give up this one meal to know what real hunger feels like. Go to bed hungry tonight, just this once. I promise you it will give you a whole new perspective on my son’s fight.

Through it all he always, always has time for a silly face and a good laugh with mom.

To learn more about PWS please visit:

http://www.fpwr.org

or

http://www.pwsausa.com

What does it mean?

3 Dec

What does it mean to be incredible?

If you need to know what it means to be incredible then you might just want to ask my sister Jennifer.

Tonight my 3 words are dedicated to her.

What does my sister mean to me? Let me tell you just a few reasons.

SHE MAKES ME LAUGH

SHE KICKS ME IN THE BUTT WHEN I NEED IT

SHE IS MY INSPIRATION

SHE IS BEAUTIFUL

SHE IS GIVING

SHE IS MY BEST FRIEND

SHE IS BLAISE’S BEST FRIEND

SHE IS AN AMAZING DAUGHTER

SHE IS AN AMAZING SISTER

Tonight my sister sent in her 1st check to FPWR. She raised this money by the Manifestation T-shirts that she had made herself to raise money for PWS research. She took her hard earned money to make a shirt to raise money to find a cure for her nephew. Does it get better than that? I THINK NOT!

My sister is the most amazing advocate for PWS, and basically all kids with special needs. She is such a special gift to all these kids, especially her Blaise.

There are not enough words in the world to express to my sister how much she means to me. There are not words to express how I COULD NOT HAVE MADE IT THROUGH THE LAST 5 YEARS WITHOUT HER.

There is not a day that goes by where I don’t talk with my sister, at least twice, usually more. No matter how I am feeling that day, I am always in a better mood when I hear her voice.

She is always giving me support, always inspiring me, and always pushing me to be the best I can be.

When she told me tonight that she made the first donation to FPWR it hit me like a ton of bricks. I am so lucky. I am so lucky to be her sister. I am so lucky to have someone like her in my life. She has always championed me in my life, and now she does the same for my kids.

Did I mention that she is donating a portion of her next retreat profits for PWS research? My sister would give you the shirt off her back(she has literally done this for me more than once).

The amazing thing about Jen is this, she does this all because she loves it, she loves me, and she loves my kids. All that she does is out of integrity, she does it because she loves to give. It is never for self gain or to receive something in return.

She is truly one of those rare people left in the world. Her intention is always to inspire, love, and make people laugh.

I AM BLESSED THAT JENNIFER IS MY BIG SISTER. I WAS JUST BORN LUCKY!

(she has been looking out for me since we were just little tots!)

So dear readers, who in your life can do all these things for you? Or as I like to say now, who can you do all these things for?

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