COMPASSION

I have had the concept of compassion on my mind a lot lately. I wanted to write tonight about how important I believe it is to have compassion.

We live in a crazy world. For so many of us these times are tough times. I know people right now who have lost their home, lost their jobs, have a child who is dying, have a marriage that is failing, are diagnosed with breast cancer and the list goes on. My god, it is overwhelming. I think to myself everyday that I must have compassion, I must have empathy. Why do I do this? I do this because all of these people deserve it. I believe everybody deserves compassion, I do it sometimes even for those that we think are unworthy. Again, some of you may ask why? Here is the nitty gritty of it all. I want others to have compassion for me and compassion for my son.

If you want to see change, then you have to be the change!

I was recently told a story by a friend of mine about his little brother who has Aspergers' Syndrome. Everyday when his little brother goes to school the kids say to him, "What's up Forrest Gump," "Hey Forrest Gump," and then the other slurs begin. I cried when I heard this. I thought to myself are you serious, how could this be in 2011 that our children could have such little empathy and compassion for each other. Well, here is the bottom line, THEY LEARNED IT AT HOME. We have got to start teaching our children young about how to feel for others, how to care for others, and how to really see people for who they are and not what they "can" and "cannot do!"

As the mother of a child who has special needs I am always baffled by the lack of compassion in the world. Often times it is even those who are closest to us who have the least amount of empathy for our situations. As the parent of a child with special needs I spend everyday just trying to get through the day. No, seriously let me repeat myself. I spend everyday just trying to get through the day. It is tough when you have a child with special needs or any medical condition.

Okay, so where am I going with all of this...what is the purpose of this entry...

What can you do?

Compassion and Empathy can make such a difference in the life of a person with special needs or the parent of a child with special needs. When you are out at the store and you see a mom struggling, and you see the child in the midst of a crisis, PLEASE DON'T JUDGE!!!! You know what you can do, is reach out. HAVE COMPASSION. Instead of mumbling to yourself, "oh that kid is such a brat" why not walk by and just smile at the mother. Do you know how much it would me to her, just smile at her, and without even saying anything let her know that its okay, that she is okay.

I was recently at the airport with Blaise. We were waiting to board the plane and he was beginning his meltdown. He was really struggling and I was so tired and just exhausted from running to the gate to make the plane. I just couldn't bring him out of the meltdown. Then all of a sudden an older couple in front of me turned to look at me. The woman must have read Blaise's name on his backpack and so she started talking to him. Low and behold he stopped being upset. We started to board the plane and she turned again and smiled at me. I smiled back and thought to myself, "thank you, thank you sweet stranger, thank you for reaching out!"

Such a small little gesture went such a long way.


How many of you out there have a friend with a child with special needs, or have a family member with special needs? I bet a ton of you answered yes. If you answered yes, then please think about doing this.

• Reach out to your friends or family, send them a message just to say hello. 
• Don't get mad at them if they can't come to all of your parities or get togethers, sometimes it is just too hard. 
• If they seem to disappear sometimes it is not personal, life can be rather tricky for them. 

I only ask this of you, always have empathy, always remember that every family looks different. Please don't judge your friends or family or strangers on how you think they are raising their kids......

PLEASE ALWAYS REMEMBER THIS ONE LAST THING (I said it earlier)

As the parent of a child with special needs we are just trying to get through the day!

HAPPY ANNIVERSARY!

It was 2 years ago today....

Exactly two years ago today my beautiful angel was diagnosed with PRADER-WILLI SYNDROME. It was early in the morning and I was playing in the driveway with Blaise. I remember I was wearing my pink bathrobe and I looked a mess. I hadn't slept in days awaiting the very phone call that would change my life forever. When that call came in and they said, "Rachel, can you hold Wendy is on the phone with another doctor, don't hang up ok?" I knew right then. That was the longest minute of my life, I felt my whole life pass before me. When the words came through the phone I just collapsed right there. I let out a scream that I am sure the whole neighborhood thought was a cat dying.

I spent the next two days crying uncontrollably, sobbing for the loss of what could have been. I was so terrified about what the future held for my son, what his world would look like, who he would become?

Then I realized I had to get it together so I reached out. I was lucky to know two people who had relatives with PWS and we got in touch immediately. It was at that moment that I began to feel hopeful not hopeless.

Fast Forward 2 Years....

Never in my wildest dreams could I have imagined that I celebrate my sons diagnosis. Yes, it is true I am celebrating. Why, because since September 14th, 2009 my sons life really begin. We were finally able to unleash all the potential he had locked inside of him.

When you first receive a diagnosis of PWS it feels like a death sentence. Yes, we still have challenges, and yes, Blaise still struggles everyday, but he is happy. I mean he is really happy. What more could I want for him.

What is life like for Blaise now, well I will tell you. It is amazing, the world is his oyster. He plays the drums, does karate, goes to school, and has many friends he loves dearly. Like any other four-year old he is learning to read and write, he goes to school and rides the bus. His life has truly become all that I hoped for him.

Here is the secret to his happiness, he doesn't know that he is different, and even if he did he wouldn't care. He is strong and confident, his smile can light up a room. He is funny and honest and above all he has the ability to show all those around him love. We could all learn a lot from Blaise. He never judges or discriminates, to him everybody is a worthy human. He truly is a gift.

Two years ago somebody said to me aren't you grateful for the diagnosis. I wanted to kill that person, literally.

But, now I get it, I really do. Thank you!

I am grateful, I am grateful for Blaise, and all that comes with him. He truly is a gift.

I love you Blaise!

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.