THE THINGS THAT CAN'T BE TAKEN AWAY

Prader-Willi Syndrome or PWS as we know it has changed our lives forever. I have said many times that this syndrome is something out of a science fiction novel. Most people I encounter can't even wrap their brains around the impact it has on Blaise's life and the everyday life of our family. PWS may have taken many things from us, but I won't let it take all of us, I WILL NEVER LET IT DO THAT! That being said let me tell you about all the things that PWS can never and will never take from Blaise, and our family.

PWS will never take away the absolute beauty of Blaise's eyes. Blaise has eyes that can pierce right through you and look into your soul.

PWS can never take away the amazing ability Blaise has to belt out a Lady GaGa tune.

PWS will never stop Blaise from having a heart big enough to swallow Texas. He can love like nobody that I have ever know.

Prader Willi will never stop Blaise from walking to raise money to find a cure

and reaching the finish line

PWS can never ever decrease the love and adoration Blaise has for his daddy

I know this for sure PWS will never stop Blaise from giving his heart to his fellow PWS angels

This syndrome will never stop Blaise from loving the education he gets in school

And most importantly Prader Willi Syndrome can never take away or decrease the overwhelming and all encompassing sense of pride, joy, and love I feel for my son. There is no joy greater than watching him grow and become the incredible super hero that he is to me. I applaud you Blaise for going above and beyond all they said you could ever do.

Lessons from Elijah

Today was another beautiful Saturday in Georgia. I decided to go watch on of my most favorite people in the world play tee-ball. I packed the kids up in the car and they were so excited to go watch Elijah and his teammates. We got there just in time to watch his team go up to bat. It was Elijah's turn and I ran up to get his picture. I almost missed the shot. He swung the bat and hit that ball so hard.

I was so proud of him. Elijah is such an inspiration to me, one day he will realize how much he has meant to me in my life.

I met Elijah when he was almost two and a half years old. He had already been through so much in his little life. This boy is a fighter. By the time I had met him he had already had not one, but two open heart surgeries. He had just started walking and his mommy was so proud. I met Elijah at such a critical time in my life. It was at the same moment I really started to worry about Blaise and his health. Blaise instantly fell in love with Elijah as did I. Even before Blaise was diagnosed I was learning so many lessons from Eli, he was teaching me things. I learned that children who have special needs or are physically handicapped are still just children. From the very first moment I met this amazing young man he changed my life. He taught me a lesson that I would use in the near future when my angel Blaise was diagnosed. He taught me that love is love and it comes in all shapes and sizes. Let me tell you another important lesson I have learned from Mr. Eli, it is quite possibly the most important. He has taught me to laugh, live and have a good time. When I walk into his house and he smiles at me, I remember that I need to let go and have a good time.

I chose to write about my best buddy Elijah today because of that ball he hit in the park. I couldn't help but think of the little boy I met who just learned to walk. Now he is quite an amazing young man in Kindergarten and slamming balls out of the park. I want to hug and kiss him and tell him thank you so much for reminding me that Blaise can do anything he dreams.

I also wanted to add on a little something to his amazing mom, my best friend Melissa.

Melissa is one of the most amazing people I have ever met in my life. She is an amazing mom, friend, daughter, and wife. I can say with certainty that I don't know how I could have made it through the last three years without her. As I watched her today in her role as team mom for the tee ball kids I was in awe of her. I knew what kind of week she has had, trust me it was busy. Never once did she look tired, she did it all with a smile on her face. That is Melissa, I believe Elijah learned that lesson from his mom. I admire my friend so much. I admire her strength, her love for her children, her dedication to all children who have to work a little harder at the little things. She is not just a champion to her own kids, but to ALL the kids she meets. So in honor of mothers day I dedicated my blog to her and Elijah.

There are lessons all around us, it us up to us to see them. Remember everybody in your life is here to teach you something, even the littlest of people ;)

I Love My Bubble

Today was one of those days where I got a rare nap, oh how I enjoyed it. When I woke up from my nap I had a vivid memory of a dream I had while I slept. In my dream I was in some public place that had a large set of stairs. I was trying to walk with my children to our destination, but they ran away from me. The next part of my dream was looking back and seeing that Blaise had taken all of his clothes off and was climbing the stairs with Maddock. In my dream there was a group of people sitting on a bench and they were laughing at Blaise. Of course in my dream I gave them the what for, and they immediately felt bad. Now obviously there is something going on in my real life to mimic this dream. It brought up so many emotions for me, it felt so real. I actually felt the sting in my heart. This is why I say I love my bubble.

This past weekend I had a birthday party for Maddock. Although typically birthday parties are fun filled events, for me they are a time of great stress. Having a child with Prader Willi Syndrome makes these occasions a more challenging time. I have had a few successes with keeping Blaise safe and happy, this party was not oe of those occasions. Not only were there food issues, but major behavioral meltdowns as well. I remember looking around and seeing people stare and make faces, seeing people looking at my child like he was an alien. Most days I can shrug it off . I have for the most part come to the point where those folks don't matter anymore. On this day they did matter!

On this day they made me feel like shrinking down and climbing into a small hole. I felt so alone, I can't tell you how alone I felt. That is until I looked around and realized that I could climb back into my bubble.

My bubble is the safe little place I have created for myself, my bubble is full of the most amazing people. So as I looked around I realized I could get back to that safe place. How did I do that? All I had to do was look into the faces of my amazing friends who love me and love Blaise. I looked into their eyes and saw acceptance, caring, and trust. Never once did I ever feel alone again that day. When Blaise was diagnosed not once did any of my friends treat him different, in fact quite the opposite. I have people invite us over for dinner and ask what can they do to make it easier for Blaise. I have people who took it upon themselves to research PWS and ask what can they do to help. I am so lucky to have the most amazing family in the world, although my sister, mom, and dad are thousands of miles away they fight this fight with me. I really am never alone in my bubble.

So this leads me to what has really has been on my mind lately. How can we feel safe outside of our bubble. How can we help to educate the general public. How can we help people to see our children for who they are and not what they have. I know that I can't confront all the people who stare at my child, but I want to desperately. I have learned a valuable lesson in life; you shouldn't judge another mother, father, or child. It is impossible for you to ever know what their life is like, the only way for you to do this is to walk in their shoes. If you see a child acting up in public, please don't stare. You have no idea what the back story is for that family. This is not just for parents with children who have special needs this goes for all parents. We are living in very tough times, instead of judging others, lets ask ourselves what can we do to help? What can we do to make someone's life better, even if just for today.

I want to make my bubble bigger. I want my children to feel the love I feel inside my bubble out in the world. That is my wish for today.

I Am Back, Finally!

I have always, always had trouble finishing things. I don't know if you want to call it ADD, procrastination, avoidance or sometimes just plain laziness. I do however plan to complete this, my journey to manifest. Although I did take a short hiatus from writing, I am here again today.

Today, like most days I was up before the sun. It is very quiet in my house in those moments before the sun rises. In those few moments of stillness I have some time to myself to think. So in the midst of my solitude I had a thought, it seemed as if somebody or something was whispering it in my ear. My head was filled with these words; WE ARE BROKEN DOWN ONLY TO BE REBUILT AGAIN...WE ARE BROKEN DOWN ONLY TO BE REBUILT AGAIN...

I know that we have heard these words a million times before, all of the old adages have been repeated countless times. What doesn't kill you makes you stronger...You can only make a real breakthrough once you have had a breakdown....and so on and so forth. I understand that they all sound so cliched, but I guess they are really true. This has been a really rough year for me and I have never been more determined to see it through this storm. So I thought to myself today, it is possible to rebuild, it is possible to rise again, it is possible to have all that I dream.

I am constantly reminded of the miracles that surround me in my life. I look at Blaise and all of his accomplishments and it quickly puts me back into check. So I think if my little 4 year old son can climb any mountain, then so can I.

I have been avoiding, denying, and procrastinating way too much lately. I have made a conscience decision to face all that is in my path, no matter how uncomfortable or stressful. I have convinced myself that if I accept my life and circumstances, face my fears, and handle my business I will succeed. I haven't come this far to quit now.

To All My Sisters Out There

I wanted to dedicate this entry to a very special "sister" out there. I wanted to remind all of my sisters out there how amazing you are.

I have always been fascinated by how we see ourselves versus how others see us.

I wanted to let you all know that I "see" you for the amazing and phenomenal women that you are. I see the fearless champion that you are for your children and all of your loved ones. I see the light that shines in you that at times you can't see.

How could we ever feel lonely when we are so loved and so admired?

Well, I admire all of you. I admire your strength for never giving up and never giving in. I see your passion to make a difference and to make change. I see the love that you show all the new "sisters who arrive into our club. Sure, none of us wanted to be in this club, but we wouldn't change it for the world.

I sit and wonder do you know how much I admire you all? Do you know how I look to you and say, "she is amazing and I have so much to learn from her?" You all are a force to be reckoned with! I have learned so many things from all my sisters, each has something beautiful to teach me. All my sisters have had such a profound impact on my life, you all have touched my soul. I have learned patience and persistence to keep myself grounded. You have taught me tolerance and action to make the change I want in the world. Most of all you have all taught me how to love and accept, the two most important things I need to have a life filled with hope and beauty.

So to all my sisters out there during this holiday time when we are to be thankful, I want to say this to you. I am thankful for you. I am grateful for you. You are the warriors and the champions. Please remember this in your quiet moments when you feel like you can't see yourself. Remember that we all see you, all of your sisters see you. You are a gift so precious. You were chosen.

Staying Strong in Tough Times

I look around everyday and see people struggling in these tough times. As I look as these people I see they fall into two very different groups. There are those that always keep their heads up and keep moving forward, and there are those that are eaten alive by their conditions. I don't want to fall into the latter group. Everyday I wake up and continue to remind myself that we are going to make it, we are going to see the other side. I have to be strong. I learned as a young child that just because I was a woman doesn't mean that I can't be strong, that I can't lead my family to success. I try everyday to possess the type of strength that I want my children to possess. I want my children to always feel safe and secure, even if the world is falling in around us. I am blessed to have family members who teach this to me all the time. I believe that if I keep my head up and keep smiling that I can overcome whatever challenges arise in my life. I know these times are hard, but I refuse to let it take me down. I am committed to staying calm and staying focused. I will take it day by day, hour by hour, and minute by minute. If I get to far ahead of myself I know disaster is waiting on the other side. I continually find strength in myself that I never knew existed. I have decided to be the rock in my family. I will be the one to hold us up and push us through, and I will do so with a smile on my face. How will I do this? I will live in a constant state of gratitude. I am grateful, I am grateful, I am grateful. I am grateful for all that I have in my life. What are you grateful for today?

The Playground

My Breakthrough at the Playground

My life is fairly routine, in fact almost ritualistic. The last seven days are part in parcel of what a typical week looks like in my life. I did the same thing every night for the last seven days, exactly the same thing. There was one big difference about these last seven days. The "same thing" we did every night, was a different something than usual. I spent every night this week at the playground with my two amazing boys. This was not a special playground, in fact it was pretty ordinary. It wasn't the playground that was so special, it was the moments we had inside those metal frames and plastic slides. I had some of the best moments of my life in the past week with my children at this playground, our playground.

You have to understand that I have spent the last two years, at least, trying to get Blaise to enjoy the playground. Nothing I did made a difference, he really could have cared less. Well times have certainly changed and his world is the playground, or as he calls it, "the grey ground!" I love hearing him say that word in all its mixed up glory. When he looks at me with those big beautiful blue eyes and asks me to go play with him, I just melt.

It is not just how much he loves to play there, it is that he is actually playing. How could it get better than this? He not only wants to play, but he wants to play with his brother. They run and laugh and chase each other up and down the slide. This is all that I could have ever asked for in life. These are things I think way to many of you take for granted. Please no offense to all you moms out there with "typically" developing children. I just know that as the mom of a child with special needs I rejoice in all that my children do, even the smallest and simplest of things. Every situation allows me the opportunity to learn, grow and find joy. I have never been more aware of how much I have to be thankful for in this life.

Swinging

I had one of those spiritual experiences tonight, the kind that only happens a few times in your life. I was swinging on the swings with my kids. Everything about this night was perfect. The sky was perfectly blue and clear, there was a light breeze blowing and the sun was just about to set. I started swinging and I was going really fast and really high in no time. I thought for a second that I might go over the top, it made my heart race. All of a sudden I forgot where I was, or really who I was. I was zipping through the air I lost all feeling of sadness or stress, it was as if all the heaviness of my life just went away. I was so taken over by just being in that moment. I couldn't hear anything except my breath. It was the most peaceful I have been in the last decade, at least. I love that feeling, I want to recreate that feeling in my life.

This journey of manifestation that I have embarked on has not been easy. I still struggle everyday, but I am making great progress. I have never been more aware of my mind, my thoughts, my actions and so on. I felt joy again this last week. I really am loving finding my joy.