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Showing posts from May, 2017

Looking Good

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Looking good on May 26, 2016. Came up on this day on Facebook.....missing him and holding onto the invisible string every single day. Ian I hope you are running around and getting into all sorts of trouble with all of our family and friends in Heaven.

Needs A Haircut

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This popped up on my Facebook time line today....not only does he need a haircut but of course the tongue is out....LOL....Love and missing this little man.

Spinraza - A Treatment for Spinal Muscular Atrophy

December 2016, Spinraza (Nusinersen) became the first approved drug used in treating Spinal Muscular Atrophy (SMA).  Besides keeping everyone updated regarding Ian's journey and our family, one of my goals regarding the blog has been to education. SMA is a hereditary disease that causes weakness and muscle wasting because of the loss of lower motor neurons controlling movement. There is a wide variability in age of onset, symptoms and rate of progression. Spinraza is used only for those with SMA, to be clear this would not of helped Ian, as Spinraza is designed to treat SMA caused by mutations in chromosome 5q that lead to SMN protein deficiency. Ian had an altercation of the VRK1 gene at 14q32.2, meaning he did not have SMA but SMA with PCH.  It is designed to modify SMA.  Spinraza is approved for use across the range of spinal muscular atrophy patients. According to the Spinraza information sheet, in a controlled study, individuals with infantile-onset SMA treated with Spinraza …

Throw Back

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As we all know Facebook shows us memories from that day years ago, these 2 beauties popped up today. They are from their cousin Noah's birthday party. As a way for me to save memories, putting the photos on the blog is my way of doing it.  This is a way to always know where they are. Enjoy!

A Mother's Chorus: Grieving a Child on Mother's Day

The post A Mother's Chorus: Grieving a Child on Mother's Day appeared first on What's Your Grief

Dear Friend,

I miss my child every day. The grief of mine will never leave me, and honestly, why should it? I love my child more than I ever could have imagined, and yes, I do mean present tense "love". It is excruciating knowing that my child will never return to my arms. However, a mother's love for her child doesn't require physical presence; this can be proven by the fact that most mothers love their children well before they are even born. I will love my child forever, and therefore, I will grieve my child forever. This is just how it goes. 

I know it's difficult for some people to understand my ongoing grief, I guess because they want me to "get better" or return to "normal." However, I actually am normal. I'm just different now. I believe those who say they want to support me on difficult days like Mother's Day, but part of …

APPROVED

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Back in January I posted about Becca and her girl scouts sisters doing their Silver Project in a post Silver Award Project. Bronze, Silver, Gold, These represent the highest honors a Girl Scout can earn.In order to achieve the Silver one must be in 6th, 7th or 8th grade; be a registered Girl Scout Cadette, and have completed a Cadette Journey.  This project was a culmination of a years worth of work and over 50 hours of service work. The girls did a disability awareness day. I was not sure how Becca was going to handle the project once Ian passed away but she did an incredible job. The 6 girls decided that they were going to finish the project in memory/honor of Ian, what a wonderful way to remember him.

Cathy Thomas, the girls leader, worked hard with them to have it all come together. Last night, Cathy along with some of the other mom's, had the privilege of letting the girls know that Girl Scouts of Central Maryland APPROVED their project. 

Way to go girls....we couldn't be m…

A Letter To My Daughter

To our beautiful Becca.....over the years we have told you that you will always have a brother, your future spouse will always have a brother-in-law and your future kids will always have an uncle. You will always be a TWIN. Death ends a life, but does not end a relationship. by Robert Woodruff Anderson

I just finished reading OPTION B by Sheryl Sandberg and Adam Grant, telling Sheryl's story of the sudden death of her husband. Her life with her husband was Option A and once he passed away she had no choice but to move into Option B. I know over the years, especially the months since Ian's passing you have struggled with finding your Option B, we all have. For all of us emotions have come, gone and come again; anger has come, gone and come again. as well as tears have come, gone and come again. Daddy and I don't know what it is like to lose a brother but we do know what it is like to lose Ian...to be the only other two people who know what it is like to have constant things …
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A photo sent to me by Ian's hospice nurse, Erin, on May 1, 2017 wishing me a happy belated birthday. I laughed and cried at the same time.