Special & Determined | A Special Needs Mom Blog

Loving life and all it's special challenges, giving a window into the beautiful world of Down syndrome

Special & Determined | A Special Needs Mom Blog - Loving life and all it's special challenges, giving a window into the beautiful world of Down syndrome

This Is Where I Am Supposed To Be, An Open Letter To My Special Needs Son

An open letter to my “special & determined son,

Last night was a long, dark night. As I sat next to your bed rubbing your back and listening to you whine with every cough you took, I realized this is where I’m supposed to be.

As the same music that we have been listening to since you were two weeks old plays in the background, certain songs bring me back to those long, dark nights sitting next to your bed in the NICU Jacob after heart surgery 300x228 This Is Where I Am Supposed To Be, An Open Letter To My Special Needs Son

Anxiously watching ever monitor that was hooked up to you. Hoping that you didn’t hit certain numbers that would make the alarm blare in my ears, causing me to rush over to your bed, only to see my precious little baby hooked up to tubes and wires.  All those long, dark nights I realized this is where I’m supposed to be.

jacob sitting on chair in field 200x300 This Is Where I Am Supposed To Be, An Open Letter To My Special Needs Son It made me wonder, as you get older will you still want to listen to your favorite bedtime music?  Will you still want me to sit next to your bed and rub your back when you feel sick or scared?

Whether you do or don’t, I pray to God, that as my face gets another wrinkle on it and the circles under my eyes get bigger and darker from the 5 hours of sleep I usually get a night, to give me the strength to care for you when you are in pain and want to be comforted, because this is where I’m supposed to be.

 

me and jacob in field 1 252x300 This Is Where I Am Supposed To Be, An Open Letter To My Special Needs Son Love you buddy, you fill my heart with such joy I am so proud to be your Mommy!  You truly are my greatest miracle in life.

 

 

 

 

 

 

 

This post was written by

 This Is Where I Am Supposed To Be, An Open Letter To My Special Needs SonMarla Murasko - Special Needs Mommy Blogger, Advocate, Mompreneur, Author – who has written posts on Special & Determined | A Special Needs Mom Blog.
I'm a proud Mom, Special Needs Mommy Blogger, passionate Health Activist, Parenting Mentor, Social media enthusiast, mompreneur & author. I am passionate about spreading awareness and acceptance for children with special needs, and to compel others to show compassion for their families who love them I advocate for other causes that are close to my heart. In this blog I give you a window into the beauty of Down Syndrome, celebrate my son's accomplishments and struggles, and share the joys of motherhood and our everyday lives as a typical family with a little something "extra". My son is truly my greatest gift. He has changed my life and has made me a better person. People like my son are making an impact on society one smile at a time!

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  • Tammy Northrup (@yoursnminerours) says:

    What a handsome son you have and what an amazing mommy you are. Not that you need me to tell you that but as a mama to six I know that sometimes it still feels great to hear it from others. I went through the whole NICU experience/trauma with one of my sons and it’s the most helpless feeling. I love reading your story. Thanks for sharing.
    Tammy Northrup (@yoursnminerours) recently posted..Crockpot Wednesday – Slow Cooker Barbacoa With Beans & Rice Recipe

    March 1, 2013 at 1:22 am
  • Duncan Edwards says:

    Hi,

    I hope you will excuse me for this message but I have started a new bookmarking site for parents of disabled children. You can submitany links you like that are relevant to other parents. The site will also automatically bookmark news stories and new posts from fellow bloggers.

    If you want your blog added to the auto bookmarking, just me let me know. I need your RSS feed. For wordpress sites it is [your domain name name]/feed.

    I have set up a special twitter account that will tweet all the bookmarks and news automatically. Follow @forspecialneeds. if you are interested.

    Many thanks

    Duncan
    (Dad to a child with Dravet Syndrome)
    Duncan Edwards recently posted..That’s Not Why I’m Crying

    March 5, 2013 at 10:03 am

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