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.

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.

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.

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.

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.

Requirements of a mom

I am still struggling with my new reality. I have spent moments alone wondering if I am capable, if I am strong enough, if I have enough to give? I want to believe that I do, but right now I feel so defeated. My physical state of exhaustation has officially taken a toll on my emotional state. I want so desperately to feel like I am part of a team but right now I feel like I am on an island. I wonder how some people can take and take so much from you. How are they so completely ignorant to the fact that you are depleted and have nothing left to give. I wonder how it is that some of us find it so easy to have empathy for others, while some people no matter the circumstance put themselves first. I wonder if this is a test of my will, or a test of my strength. Whatever it is, I don't know how much more I can take. I need support, I NEED HELP!

Another day that has begun before the sun

So it begins, yet another day of rising with Blaise at 5am. Oh how I am not enjoying this. I was up all night with the little one and have entered the realm of complete delerium. Today we are off for one more trip up to Children's for Blaise eye exam. I am hoping the doctor says he does not need glasses. I am not sure where I am going to find the energy for the hour + drive up there with both kids, I am sure I will be making a stop at Starbucks. It has been a rough day thus far, Blaise's mood this morning is less than stellar. I am finding it hard some days not to cry when he has the all out temper tantrums. Sometimes I want to run and find a hiding spot, is that mean to say. I think he must be going through a growth spurt, he is cranky and his food seeking is at an all time high. I have learned that as a parent of a child with PWS, YOU MUST BE STRONG. I find nothing harder than telling my angel he can't eat. Oh I pray for strength for today.So great news Blaise has no eye problems,as of yet haha. Although the doctor visit took 3 hours and I had both kids by myself. It was worth it to check one more thing off the list.

Fall

I have decided to enter the wonderful world of blogging. I want to share my angels with the world. I am the mother to two wonderful boys Blaise(who has PWS) and Maddock. They are my sunshine and my world. A blessing to me each and every day.