Welcome to our journey

My wish is that as you read this blog you can laugh, cry, smile, and enjoy all the stories that I share with you. I am on a journey and I am happy to have you join me.

My name is Rachel, mom to Blaise who is almost 3 (diagnosed with PWS), Maddock 6 months old, and wife to Jona. I have been blessed to be a stay at home mom to my wonderful boys. In September of 2009 my sweet Blaise was diagnosed with PWS. This has forever changed the course of my life. I have spent many years wondering what my purpose in life was, and when it would be revealed to me. I no longer wonder, my purpose is in front of me everyday. I am no part of a club that I didn't choose to join, but wouldn't trade for the world. Along my journey thus far I have met some of the most amazing people. I have come to realize not only has god put special needs individuals on this earth for a reason, but he also put their family members here as well. My two boys teach me so much everyday, I have become the woman I always desired to be. Each day my boys teach me kindness, patience, love, and how to have endless amounts of joy and laughter. Through my journey as their mom I have become a strong and determined woman. My journey has just begun and I am filled with wonder about what the future holds for us.

Sunday, January 10, 2010

A mother's Message to Her Son

I always knew I would love you
I loved you before the universe brought you to me
They all dreamed of you, with your blonde hair and blue eyes
You came to me

I held you in my arms, I saw only perfection
Perfection is all that remains
You are flawless

As I look into your eyes I feel the butterflies in my stomach whirl
every time I hold you in my arms it feels like falling in love for the first time
You are glorious

Overcome with pride when I stand next to you
Filled with joy watching you climb your mountains
You inspire me to greatness
You are extraordinary

With all of your innocence you have changed me
You move mountains with your laugh
With a touch of your small hands you lift me up
You are powerful

You possess great determination and will
Un knowingly teaching us how to hold on
You urge us to keep going, move forward, and stay strong a little longer
You are invincible

Your greatness is unmatched
I will not label you as anything other than my angel
You do not fit into any box
There is no special category for you
You are unique

I will repeat this message to you everyday
I will stand tall in your presence
Hold you hand tight as we walk together on this journey
You will always know that you are my champion
You are brilliant

As the days go on my voice will ring loud and clear
You will never wonder, doubt, or question or who you are
Your brilliance shines bright
Your are miraculous

It's been a busy time

Life has been crazy lately. Always so much to do and so much to get done. Things are looking up, looking good, and moving forward. What a great way to start the new year. I am so proud of how far we have come in such a short time. I will write more this week as I have some time to sit down and get back up to speed. Keep praying for a cure.

Wednesday, December 9, 2009

An unexpected life

When I was a young girl I used to dream of being a mother. I dreamed of endless laughter, scrapped knees and endless kisses. You never dream of your child having special needs, you never dream of them hurting. There is no handbook on being a mom, and there is definitely not a manual for being the mom of a child with special needs. I will say this, I most certainly don't feel like I am missing out, I don't feel disappointment, and I don't feel angry. I do feel joy, pride, and amazement at the wonder that is my amazing angel. I go to sleep every night with anticipation for tomorrow and what the day will bring. I thrive on all the little, and big accomplishments that my angel makes every day. I am still learning and everyday is still a struggle, but I will not be a victim to my circumstances, and I won't let my angel be a victim either. I do wonder what life would be like without all the 7 hour days at the hospital for specialist visits, what it would be like to not have to plan out therapy appointments, and I long for the day that I don't have to lock my fridge. I have found a strength inside me that I didn't even know existed. I have a drive to set an example for both of my children that anything is possible, that you can achieve anything. I am on this life long journey and I know there is a light at the end of the tunnel.

Thursday, November 26, 2009

Today I am grateful

Today I am grateful for the wonderful time I am spending with my family. I am blessed to have my children, my husband and all the grandparents together. Today I am grateful for all the love in my life. I am thankful for the amazing progress that Blaise has made. Today I am thankful for how much Maddock loves his mommy. Today I am thankful for the wonderful doctors who are working hard to save my grandmothers life. I am a blessed individual to have miracles upon me everyday. Please share with me all that you are thankful for as well.

Sunday, November 15, 2009

An Amazing Week

Well all I can say is that is has been an absolutely amazing week. Blaise started his GH therapy this week, and he is already a changed man. The amazing accomplishments he has had over the last 7 days is awe inspiring. He is such an inspiration to me everyday. As I am watching him grow into such an amazing young man. It feels like just yesterday that he was diagnosed and yet I have accomplished so much in the last 8 weeks. Maddock is always right there with Blaise pushing himself further each day, he wants to be a big boy like Blaise. I am so grateful this week for all the amazing people in my life. I am eternally grateful for all the angels in the PWS community who help to give me strength. As I lay my head down tonight I pray that the researches meeting in Maryland this week have promising news for the future. I pray that there is something big on the horizon for our angels.

Tuesday, November 10, 2009

The Wonderful Dr. Miller

Well, we finally made the trip to see the wonderful and amazing Dr. Miller. She was everything I imagined. As I child I remember having doctors who cared, who knew the names of everybody in the family, who returned your phone calls, and made sure you were taken care of. Those days seem far and few between, but those days have ended now that we have Dr. Miller. She gives us hope and she fights the fight with us and our kids. My husband was such a trooper driving 10 hours yesterday to take Blaise to meet her. I know my son is in great hands and together we will find a cure. Today is a good day.

Thursday, November 5, 2009

I Feel So Blessed

I have never felt so blessed before. Although the kids and I have been sick for 3 days I am still able to acknowledge the blessings before me. I wanted to dedicate this post to some my fellow PWS families. Never in my life have I encountered such amazing, strong, and completely selfless individuals. To all the people who have reached their hands out to mine, THANK YOU. I cannot describe how it feels to know that somebody who doesn't even know me cares so much. It gives new meaning to the old saying, "It takes a village to raise a child." I am so happy to be part of this village, this community. I am blessed to be in your presence. Thank you for allowing me to be myself, and thank you for accepting my son just the way he is.