Tag Archives: Blaise
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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

Joys of Motherhood

20 Aug

 

When my oldest son was born there were complications. I however always looking on the bright side believed that he would outgrow them. As time went on it was clear something was not right. When the verdict came in and he was finally diagnosed I was devastated. I don’t say this lightly, let me be totally clear on this.

On September 14th, 2009 at 9am, my world changed forever. I was shattered, heartbroken, and alone. Prader Willi Syndrome, what the heck is that? In reality it wasn’t quite like that because I knew what Prader Willi Syndrome was and I wanted to die knowing my son has this. I was standing in my driveway in my pink robe and I collapsed, I nearly knocked myself out on the pavement. It took every last bit of energy to pick myself up and walk in the door to inform my husband of the news. We sat and cried and cried. These weren’t your old run of the mill tears, these tears came from the deepest of deep spaces in our hearts, we felt as if we were sucked into the abyss.

When I finally collected myself I was filled with questions.

What will my son look like?

Will he be morbidly obese?

Will he fall in love?

Will he have friends?

Will he be bullied in school?

Will he ever talk?

Will he ever play sports or swim in a pool?

Will he live on his own and go to college?

What will his life look like?

This is just some of the things that were teeming through my brain like a swarm of African Honey Bees that have just had their hive destroyed.

I am feeling the tears well up in my eyes as I sit and read back the words I am writing. The emotions of that day still live inside me, they always resurface when I go back to that day in my mind.

It is almost 3 years since that day and life is quite different from what I imagined.  So different from what I imagined.

I need to add that not only does Blaise have Prader Willi Syndrome but he also is on the Autism Spectrum and has Sensory Integration Disorder. My life is never, ever dull.

I am not here to say that my life is easy and that my son’s diagnoses don’t impact our lives, they do, but our lives are good.

I wanted to share a few things with you that have happened to my dear son in the past few weeks. I share them in hopes that all the families who have children with special needs will read this and smile again. I share them as a glimpse of hope of what could be the future for all special children in the world. I share them as a reminder to never give up and let others dictate who our children are. I share them because I see first hand that our world is changing, and it is possible for our kids to live a life full of love, laughter, and happiness.

My sweet boy started kindergarten on August the 6th.

I couldn’t sleep the night before I was terrified. He was going to be in school all day long. I wondered how would he handle this, would he ask for food all day long, would he steal food from the other children? I actually had a nightmare that the parents of the children in his “typical” class wanted him taken out. I dreamed that they were mad that their children could not have treats because my son was in their class. Oy, I can’t begin to tell you how sick I was over all the emotions that were plaguing me.

The first day of school came, not a problem in sight. The second day of school came, even better than the first. This has been the case every school day for the last two weeks. Of course he has had a few major glitches, but so do all kids, ‘typical’ or not. Every time I walk into the school people ask me, “Are you Blaise’s mom? We love him so much.” You have no idea how much that means to me. My heart is over flowing with pride for my son. I had originally wanted Blaise to be in a ‘typical’ class all day long with an aide. It didn’t work out that way and truth be told I am absolutely fine with that. He does most of the day in a self-contained class and 2 hours in a general education class. He is doing great and I will not let my ego get in the way of that(note the hidden lesson here).

Last Monday I picked him up from school for his therapy session. We were walking down the hall and encountered the kids from his general education kindergarten class. They were all calling his name and waving at him in the hall. Then a little boy grabbed him and hugged him. I asked if they were friends and the little boy said, “Blaise is my buddy.” I can’t tell you how I almost fainted because I realized that not only was my son not getting picked on, he is accepted for who he was!!!!!!! Two days later the same thing happened as we left for therapy. This time all the kids were so excited to see him, and a new little boy was hugging him and saying that he was Blaise’s buddy.

How could I have ever imagined such love. I could only go on what I know and have seen in my life. When I was growing up kids were cruel to children with special needs. I am seeing such a difference in our young kids today, or at least the children who go to my son’s school. Just think these beautiful precious children can see my beautiful precious child for who he is inside, and not what he looks like, or what diagnosis he possesses.

As he gets older things might change, and he will probably encounter more unkind people in the world. I see something very special in my child, and I will remind him of that daily. If he encounters people who aren’t as kind to him he will have the strength to shake it off. My hopes are that he knows how loved he is and those folks just don’t matter.

I know this is a much longer post than usual, but I haven’t written in over a week.

I will leave you on this note. Here are some pictures of my beautiful son surfing this past weekend. Blaise and his dad went to Florida to participate in Surfers for Autism in Flagler beach, Florida. It was amazing and there aren’t even words to describe the pride I feel for my child today.

I am in a constant state of wonder at my son. He is determined to prove that he can do it all. It might take him longer, but he will eventually get there. I will be by his side the entire time.

I love you so much Blaise.

 

Successful Summer Days

19 Jun

I was so worried when the summer was approaching about what I would do with the kids. I worried that I would not be able to find things to do with my kids ALL summer long. I worried about the heat, and not being able to take Blaise outside during the day. I was worried that we would have a repeat of last summer. Stuck inside, Blaise and PWS raging up a storm, and then he gained 4 pounds. I was worried that I wouldn’t have the energy or patience to make it through the long summer days. Are you seeing a theme here, yup, I WAS WORRIED!

I am completely amazed at how the last month has flown by. I am amazed at how I have managed to keep my kids active every single day, despite their unique needs. I am amazed at how in love I am with my kids. I am amazed at how patient I have been with my angels every single day. I am amazed at how much energy I have to run around with them all day, literally non-stop. I am amazed that through all of this I am about to finish my 200 hour yoga teacher training.

My life is so much a thing of awe for me. I am full of energy and ready to take on the day everyday with my kids. I am sure there are many people out there who think it is no big deal to have to entertain your kids all summer long. When you have 2 children with very unique needs and medical conditions it makes life way more complicated. Yet, through it all my kids are doing so well and so am I. There is only one more month left before they start school and I am not worried one bit about how it will go.

I will tell you this with absolute certainty. I am smoke free now and I feel the difference in my body, my mood, and my energy level. I believe letting go of this crutch has enabled me to spend more time out in the world again. I am a much happier and healthier mom. Yoga and meditation have also enabled me to have the patient and calm state of mind to handle each day.

I am totally exhausted now, slightly behind on the laundry, but my kids had a great day and the laundry can wait.

I would rather have a messy house for a day, if it meant that my kids were completely happy and living a full and adventurous life.

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