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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.



The Special Child

7 Aug


Dear my special child,

Today marks your second day of kindergarten, I can’t believe how far you have come. You truly are my special child, but not for the reasons found on your medical records.

You are a shining example of what it means to live from your heart. “He is such a love,” they said to me as you left the bus. Of course this I already know. Your “special-ness” can’t be seen on an x-ray or revealed through a blood test. Your “special-ness” resides somewhere much deeper.

A sense of peace comes now as I think about your future. I know that you walk on a path that was set in place before I ever held you in my arms. You are special in more ways than one.

I am so honored that you have entrusted me to care for you. I am so lucky to have such a special child to call my own.

You have exceeded all of my expectations and more. I am amazed by you every moment of every day. I am in awe of you. I am constantly in a state of wonder at the magnificence you possess.

Thank you for always giving me something to believe in and have faith in.

I love you forever my special child.


It’s Me Again

25 Jul

Over the past two weeks I have not felt at all like myself. As I mentioned in my last post I am waiting for results to see if I have an auto-immune disease that is attacking my thyroid. I have recently, almost 5 months ago, given up meat again and was starting to think I was not getting enough protein. Then the doctor slams me with the order that I am to take ALL gluten out of my diet. There goes all the fake meat I eat. I thought I didn’t eat that much gluten, but when you really start to look it is in EVERYTHING!!!

The last week has been interesting, but here is the cool part. I didn’t go through gluten withdrawal or get sick from not having gluten. I am craving more veggies and loving inventing new salads. To my joy I have also found that my skin is completely clearing up, this is something I have battled for over a year now.

I started to worry could I be a vegetarian and give up gluten, could I have it all? Yes, the answer is yes I can. I have really enjoyed everything I have cooked this week and have plans to get all the protein I need from veggies, nuts, seeds, beans, and fish. I am happy and feel so good about what I am eating.

Here is the crazy thing, I feel a million times better today than last week. I feel like a new person. I feel better than I have felt in years. Yesterday was still a rough day, but today I feel like I got a whole new body. I don’t know if it is from not eating gluten, but I suspect that has a lot to do with it. I feel like a million bucks.

I normally don’t write huge amounts about food, although food is what my life revolves around, but I think this is really something to think about. How much do we really need gluten products in our life? Can we not make food that doesn’t have gluten in it? I give my kids almost all gluten-free products, but occasionally it is okay for them. I have been doing this for years for my son with PWS, but now I am looking at it through new eyes with doing it for myself.

I am here to tell you that there is a whole world out there, and it is just full of non gluten products for you try. I think would think about the possibility of gluten intolerance or sensitivity  if you have any problems such as acne, gastrointestinal problems, lethargy, rashes, and especially if you are anemic. Give it up for just 2 weeks and see what happens.





Here is a recipe from tonight.

Easy mixed green salad:

Mixed baby greens

candied walnuts

dried cranberries

goat cheese

grilled tofu (marinated in Bragg liquid aminos)

red wine vinegar

extra virgin olive oil


Take the salad add the dry ingredients and toss. Lightly add the oil and vinegar and toss again. Then add a few small dollops of goat cheese and top off with the grilled tofu.


I promise this is yummy and gluten free.

One Precious Life

24 Jul


I was in a poetry mood today and decided to read some of Mary Oliver‘s work. I stumbled upon a poem that truly spoke to me at this very moment. Entitled “A Summer’s Day” it is a beautiful piece and the last sentence is my favorite.

Tell me, what is it you plan to do with your one wild and precious life?-Mary Oliver

So I immediately started thinking, what is it that I plan to do with my “one wild and precious life?” This topic has been on my mind all week-long. I have been under the weather and possibly have an auto immune disease, or so my doctor thinks. This of course brings up a ton of stuff for me. I go into a straight panic when I think about not being there for my children, in fact I get physically ill even thinking about it. I decided almost a year ago that it was time to really get healthy, not just “sorta” healthy, but all the way healthy. I did the first thing and that was to give up cigarettes. I started exercising regularly and eating really healthy. I know I can’t prevent lighting from striking me, but I don’t have to do bad things to my body to make me sick. I am preventative!

That takes care of the body conversation, now what about all the other stuff, like living each and every moment authentically. The first part of that journey for me was taking teacher training and doing something that I love. Continuing on the journey to truly live my one precious life is to take risks and have faith in myself. I am not saying that I am going to jump out of an airplane tomorrow, but I am definitely stepping out of my box more.

I read my sister’s blog today on saying “YES” and it really got me thinking. Where in my life can I say yes? I am going to start saying yes to myself, yes to my ability, and yes to reaching for the stars in my life.


I Am Balanced

16 Jul

Here we are less than one month away from my 200 hour yoga teacher training being complete. The last 4 months have flown by.

I knew without a doubt that this training would not only be educational, but also life changing.

Life changing doesn’t always mean pleasant. Life changing can be difficult and very uncomfortable. I have been very introspective over the last 4 months, and this past weekend was particularly tough for me. As my day ended yesterday I realized that I was looking at the darkest parts of myself that I dread the most, the parts that I wish were different. It is challenging for me to examine something about myself that needs adjusting and not tear myself down in the process.

That is what lead to me write this post. My life is completely new. It’s a new ride and I am enjoying the scenery. The major lesson that I am taking away from this experience of personal growth, is that I am always changing. I am an always evolving being. It is okay to have things that need some improvement, and I don’t have to make it mean something is inherently “WRONG” with me. We all have so many facets to our personalities and I am striving to live a life that is BALANCED.

I am seeking balance in my life.

Every day I get closer and closer to having that balance, and as I get closer so do all those in my life, especially  my children. Being a balanced parent is the biggest gift I can think to give them in life.  I want them to grow up knowing that they were heard and loved, that they had the freedom to be creative in life. I want them to dance to the music that lives within them. I can help them create a limitless life, just by making sure I look into their eyes every time they speak to me. I want them to always know that they are important and that they matter in this world.

That is the beauty of being a parent, as I shift in life I can help my children be the most amazing beings they were born to be.

I’m Not Alone!

7 Jul

I typically don’t vent on my blog, and am definitely not in a place where I need a pity party. I am at a place where I need complete honesty with somebody other than just my family and super close friends.

I need to say it out loud and just declare it. I AM A GOOD MOTHER, but I don’t know how to parent my youngest child. I feel so alone. I know there will definitely be lots of people who read this and feel like I am speaking their thoughts as well.

Many of you already know that my oldest child has a rare genetic disorder called Prader Willi Syndrome. I read it described recently as the starvation syndrome. He also has sensory processing disorder and autism.

What many of you don’t know is that my youngest son has most recently been diagnosed with ADHD, a mood disorder (bi-polar) but they won’t call it that for his age group, and he is definitely exhibiting behaviors of Aspbergers.

I have spent the last 3 years wrapping my brain around PWS and Autism. I get it. I can work through it. I even get the ADHD even though it is so overwhelming and he is so frantic all day that I am worn out. What I don’t get, what I am struggling with, what I feel so alone with is the mood disorder.

I joined a support group for parents of bi-polar children. It has been amazing. What an amazing group of people. One of them suggested that I read a book entitled, “The Explosive Child  by Ross W. Greene. I want to cry as I read word for word what is a description of life with my youngest son.

In the book one of the mothers says, “Can you imagine being scared of your own child?” She then said, “I am!” My youngest son is only 3 years old and there are more days than not where I am scared of him, scared of his rages, scared of his violent temper. I am able to ignore now but I have had more than enough of people telling me how to parent him, spank him, discipline or reward him and so on.

Let me just get this out in the air. Children who suffer from mood or psychiatric disorders DO NOT RESPOND TO NORMAL CONSEQUENCES. I am not a bad mother and my son is not just a brat who doesn’t get spanked enough.

I love my son more than anything in this universe. I sleep with him every night and we cuddle and he tells me I am beautiful. His intelligence is unbelievable, and I love having unique conversations with him. I am however am emotionally drained. I feel in my heart that with my continued meditation and yoga that I can handle it, as devastatingly draining as it is. It is him that I feel for, I can’t imagine his soul feels good in such turmoil all day long. It’s almost like he is a prisoner in his little adorable body. When the rages come on, he just can’t stop.

I have decided to do is keep our house as organized as possible. I am on a mission to keep as few distractions for him and my older son. Today I went full force. I packed up almost the entire playroom. I have 4 huge bags for donation and the rest of unused but usable later in life are packed up and put away. I kept the swing in the room and some books and a few cars. This room will now be our quiet space. I will have a quiet space to meditate and they will have a quiet space to decompress as well. I am even thinking of adding some black out lights for a sensory experience. I am feeling really hopeful that this might be helping us move in the right direction.

I am writing this post for all the other parents of “Explosive Children” whatever your diagnosis may be. I am writing this to say you are not alone. I am writing this to say you are a GOOD PARENT. I am writing to say that it is absolutely ok to say that you need help. I am writing this to say it is ok to say you are depleted and need a recharge.

Through all of this I will keep researching and keep loving my son until I find what works for him. In the meantime for all the parents out there who know a family or a child like this, I ask that you have compassion in your heart when you are in your dealings with them. They are lovable and want to do well if they can.

I will not give up on either of my sons.

Pack o’ Weirdos

3 Jul

I am graciously accepting my invitation into the lovely pack of weirdos.

Who are we?

We are those that believe love can heal anything.

Thanks JoEllen for reminding me of this.

I am here to wave my weirdo flag and raise it high. I too believe in a conscious way of living. I believe in a world where people are kind and honest with each other.

I believe in loving your children, looking at them in the eyes when you speak to them, and laughing with them lots and lots throughout the day. I believe in standing by your family, and loving your parents no matter how “imperfect” you think they may be.

Remember we all are “perfectly imperfect!”

I love my parents. Now that I am a mother myself, I respect my mother so much more for all the sacrifices and love she gave to me and my sister. I believe if you have a sister, and you are lucky like me, then she shall be your best friend forever.

I believe in friends that don’t quit on you when times get tough, and I believe in not quitting on yourself either.

I say this as a reminder I am 162 days smoke free. Yes, 162 of committing to living the best life ever.

I just wanted to remind all of you on this Tuesday morning to remember to love. Love yourself, love your family, and then take it out into the world.

I have a practice I do every single place I go. Whenever somebody is helping me in a store,hospital, etc..I always ask their name, say hello and ask how they are? ALWAYS. This is a rule of thumb for me. I want to make connections everywhere.

So go out in the world today and make a connection, make it authentically, and make it with integrity.


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