Friday, May 26, 2017

Looking Good

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.

Wednesday, May 24, 2017

Needs A Haircut

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.

Monday, May 22, 2017

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 achieved a clinically meaningful improvement in motor function compared to untreated individuals. In open-label, uncontrolled studies in individuals who had or were likely to develop Type 1, 2 or 3 SMA, some individuals treated with Spinraza showed improvements, including:

  • The achievement of milestones such as the ability to sit independently, stand, or walk when they would otherwise be unable to do so.
  • Maintaining milestones at ages when they would be expected to lose them.
  • Surviving longer than expected considering the typical course of their disease (number of SMN2 copies).
This is a wonderful break through for those with SMA and the rare disease community. It gives hope.

Saturday, May 20, 2017

Throw Back

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!

Thursday, May 11, 2017

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 this accepting me as a grieving mother who will always love her deceased child. Again, this is just now it goes. 

My grief is like the weather. Somedays it's calm, quiet, maybe even a little sunny. Other days it's a devastating storm that makes me feel angry, exhausted, raw, and empty. I wake up in the morning and wonder -- "Am I even alive at all? And if so, how am I supposed to make it through this day?" This is why when you ask me how I feel about Mother's Day, all i can say that it depends. Of course, I'm going to try my best to cope with the day, but while you're hoping that your Mother's Day picnic doesn't get spoiled by actual rain, I'll be praying that the grief storms stay at bay.

Like make things in a grieving mother's life, Mother's Day is bittersweet to the nth degree. On the one hand, I feel immense joy because I was blessed with my child and I feel gratitude for every moment I was given with them. On the other hand, the pain of missing my child -- the greatest happiness, my life's purpose, and my best friend -- is intense.

Bereaved mothers live with so many of these confusing contrasts. They are like undercurrents that tug at and toss about our hearts and minds. I am a mother to a child who is not alive. Perhaps a child who you've never met. You can't ask me about their school year, or how they're liking piano lessons, or whether they've chosen a major in college. In my mind, I've imagined my child doing all these things. People don't realize that I grieve each of my child's milestones, knowing they didn't get the opportunity to experience these special days.

Most people don't know how to validate my child's place in the world or my ongoing role as my child's mother. This is a difficult concept for others to grasp. Heck, sometimes even I grapple with the answers to questions like "Do you have children?" and "How many?." I know many bereaved mothers, like me, long for these questions to have straightforward answers. Sadly, mothers who have experienced the death of their only child may even wonder whether they get to call themselves a mother at all in broader society. So, in addition to the pain of grief, these mothers have to cope with a sense of being left out, forgotten, and ignored. Can you imagine how that might feel? I think it must be like being stabbed through the heart and when you turn to others for help they say "What blood?" "What knife?"

Then, for mothers who have surviving children, there is this gem of a comment -- "Don't forget, you're lucky to have other children." Please let me assure you, a mother does not forget any of her children, which is kind of the point. This mother loves each and every one of her unique and special children in unique and special ways, but one of her children has died and so her love for this child looks like a little untraditional. Mothers do not have a finite amount of love to be shifted, divided, and spread around depending on the number of children they have on this Earth. So please be careful with your comments, because this dynamic is difficult enough for grieving mothers who often feel torn between feeling joy and happiness for their living children and grief for the child who has died.

All that said, you asked me what it's like to grieve a child on Mother's Day, so here's what I have to say:

This day will forever be hard for me. I live with an emptiness that no one can fill; so I may be sad, I may be unsocialable, and I may need to take a break to myself in a quiet place. Whatever shape my grief takes on this day, please allow me to feel the way I feel and please follow my lead.

Beyond that, acknowledge me as a mother. It makes me feel forgotten and as though my child has been forgotten when people act as though my child never existed. Also, I can sense that people feel uncomfortable talking about my child and I constantly feel like the elephant in the room, but it doesn't have to be this way. Honestly, I find it really comforting when someone talks about my child. I love hearing their name spoken out loud! I love hearing stories about them. Maybe you know a story I've never heard, or maybe I've heard it a hundred times before, but it really doesn't matter to me. Your acknowledgement alone is one of the greatest Mother's Day gifts you could give me.

I guess while I'm offering my two cents, I also have something to say to bereaved mothers. No one has it all figured out, but I've learned a few lessons along the way. If you're worried about Mother's Day, you're not alone. Try not to get overwhelmed or wrapped up in anxiety. You may actually find that the anticipation of the day is worse than the day itself. You may want to plan a whole day of activities just to stay busy, or you may feel like doing nothing at all. There is no "right" way to handle Mother's Day -- but do try to plan ahead a little. You may want to reach out to others who are struggling with the day and, if you can, it always helps to face the day with people who love and support you.

Whatever you do, believe you will make it through the day. With time, the grief storms show grow smaller and less frequent and you will find a little more balance and room to breathe. Believe you will be okay and have hope that in the future you will find yourself in a place where you can grieve and celebrate on Mother's Day all at the same time.

Let's take care of each other,



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 more proud.

Thursday, May 4, 2017

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 be the only other two people who know what it is like to have constant things going on in the house 24/7 and in a minute for that to be turned upside down. We knew for years this would happen, we prepared as much as possible but to truly prepare is not possible. One does not know how they are going to react when it finally happens. The pain, relief, emptiness, sadness, all comes up. You have put some walls up to help you get through the days, some of those days are easier than others...those days will come and go just as the walls will come and go. You have to let some walls down, cry, share emotions with us as well as with others who have experienced a loss like yours. We hope this has helped you to know and see it is okay to continue loving.

Resilience means the capacity to recover quickly from difficulties; toughness or the ability of a substance or object to spring back into shape; elasticity. Resilience in love means finding strength from within that you can share with others. Finding a way to make love last through the highs and lows. Finding your own way to love when life does not work out as planned. Finding the hope to love and laugh again when love is cruelly taken from you. And finding a way to hang on to love even when the person you love is gone. - From Option B.

You may not realize but with each passing day you are building will come and go over the days, weeks, months and years. Little by little we are seeing joy come back into our lives, we are laughing and reason is because we know Ian would want us to find joy, laughter and smiles again. To continue living. We talk about him, we think about the good and the bad times with him as well as the funny things he did...oh and there were plenty. As we learn to live in our "new normal", know that we see so much in you, know that over the years you will have joy, laughter, good times and bad, sadness, loss, plus much more. There will be hard times as well as easy times. At times the pain is front and center and other times you forget it is even there. The resilience you are building, finding a way to hang on to love even when the person you love is gone, will guide you through so much in life and has and will continue to make you the wonderful, caring person you are.

Monday, May 1, 2017

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.