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Broken Heart Syndrome

24 May

Although I am currently in remission I was reminded this morning that I still suffer from Broken Heart Syndrome.

When I logged on Facebook this morning I had read a status update written by a friend taken from another PWS friend.

So thank you Rachel Fink Johnson for putting these beautiful words together.

I changed the name to Blaise as I made it my own:

A small deletion on Blaise’s paternal 15th chromosome wreaks havoc on his body in so many ways, many I have shared in these posts, some I have not and some I have just alluded to. One symptom that I have alluded to but may not have explicitly stated is Broken Heart Syndrome, hopefully not in Blaise, but mommy definitely suffers from this due to this missing piece of DNA. Broken Heart Syndrome is the heart ache experienced whenever your child is not performing at an age appropriate level academically/socially/physically. It also flares up whenever other parents talk about weddings, college or any similar future planning. Some may experience a flare up of Broken Heart Syndrome for unexpected reasons or at unexpected times, like at an amusement park or in the middle of your work day. Broken Heart Syndrome is a very unpredictable disorder and is characterized by sudden and extreme pain in your soul. Broken Heart Syndrome occurs most frequently when mommy realizes that Blaise REALLY does have PWS. Today is the 23rd day of Prader-Willi Syndrome Awareness Month. Thank you Rachel Fink Johnson, you put into words what I have been feeling for a very long time xoxo

We don’t often recognize our own sadness or human-ness because we are too busy being the strong mom or strong dad to these “special children.” We don’t often take the time to acknowledge that we do indeed cry when we are alone and that we sometimes struggle to be happy for our friends with “typical” children. WE ARE HUMAN! I am on an upswing right now feeling great, however when school starts I think I might have a BHS flare up myself. When the reality kicks in that Blaise won’t read or write at the same level as his peers. My BHS flares up when I think of the other kids not understanding him because of his speech delay.

I will always stay strong for him, be strong with him, and walk by his side. I will do this for both of my boys. Tonight we had a conversation about loving speech. How do we practice loving speech towards each other and ourselves. I am raising two boys who see a mommy that loves herself and two boys that are learning to love themselves as well. So when the days come that somebody practices that “not loving” speech with them, they can stay grounded and let it roll right off of them.

I really wanted to post this not only to honor PWS awareness month, but to honor all the “Special” parents and caregivers out there who make it their lives to see these children have the best chance at a “normal” life.

My hat is off to all of you.

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The Pain in My Heart

11 Jan

INTELLECTUAL DIS-ABILITY

There are no words to describe how my heart hurts when those words are used to describe my son.

I feel the sadness take over my soul. The well starts to fill, and if not contained I might very well overflow today.

I listen to all my friends talk and prepare for their child to enter kindergarten. It is all really simple stuff like, what teacher will they have, or will they ride the bus?

I wish it was that simple for us. No, it isn’t. We have to undergo another round of testing, followed IEP meeting after IEP meeting.

We have to fight to get the extra help our kids need. We have to be prepared to go to war for them.

My child is not disabled.

We are all human aren’t we? We aren’t so different inside.

So here are my 3 words for today.

Here are my 3 words to explain how I feel about my son. Here is how I feel it should read.

Today I was informed that the school psychologist is suggesting that Blaise not be completely mainstreamed. Why? She feels that he needs to be labeled as being, “Intellectually Disabled.” God, that just burns me up, it hurts.

Does my son have learning disabilities, of course. I know plenty of “typical” people who have learning disorders as well. I know they are trying to get him the best care possible at school, but my heart is heavy right now.

I want my son to get the best education possible. I want him to have as “normal” a life as possible. I want him to love school and love life. I know that the labels are just there to get “services” for school, but I hate them. I hate labels. I hate it when others label my son.

I hate that I even have to fight for him to get an education. I hate that I have to fight to get him an aid so that he has the best chance at learning. Oh let’s not forget the aid to help him stay away from food, you know because HIS LIFE DEPENDS ON IT!

Why, why is this even a question. Why with all the information you give people they think they know better. They think that your child has an eating disorder that they will grow out of. They think that your child should be able to learn to control themselves around food. They think that sheer will power is all your child with PWS needs. I wish they only knew. I wish they knew what it was like to be on a 24/7 vigil for your child. To wake up in the middle of the night and say, “oh crap I left the fridge unlocked.” To know what it is like to never get a full night sleep because you are always listening, always waiting for the moment your kid gets into the food when your asleep.

Blaise has it tough. He has 3 diagnosis. Prader-Willi Syndrome/PDD-NOS(autism spectrum disorder)/Sensory Processing Disorder. This is a lot for one little man to deal with. In saying all that do I think he can handle school, YES!!! ABSOLUTELY. Do I think he needs an aide full-time, YES! ABSOLUTELY.

I will keep an open mind as I go into this meeting with the school. I will think about what they are offering. I will also be ready to go to battle if I have to, whatever it takes.

This is just a normal day for us. There is always so much, so much to think about, so much that weighs on me. Today though I am in a valley. Feeling sad for my son. Feeling sad for his never-ending fight in life.

As the parent of a child with special needs we already fight so many battles at home. Why, why I ask, should we have to fight for our children to get an education? I will never understand. ;(

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