A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Thursday, March 7, 2024

An award

 It's been many years since I have written a post. I really don't know what to write anymore. Dan would be 17, a junior in high school. Shelby is nearing the end of 5th grade.  Time marches on.

A couple of months ago, I was nominated for a Founder's Day PTA Award. These awards provide a way for each PTA to recognize a volunteer and a staff person for going above and beyond. Tonight was the award ceremony.

The friend who nominated me gave a short speech. My acceptance speech was probably the longest speech of the night.  I've copied it below - but this isn't what I said. I will update the post with the video once I have it. 

This speech was for Dan. It was for Shelby. It is for every kid who has special needs. Parents - I see you, I support you. 


Speech:


I am honored to receive this honorary membership. My experience was special needs started over 20 years ago with my stepson who was placed in a self-contained middle school special education class. While we knew his academic struggles were behavior related, we were powerless to have him moved into general education classes.


5 years later our son was born with significant Medical issues, and we were dropped back into the world of special needs, this time for medical reasons. Over the course of the five years of our son's life, we learned everything we could about his disease and we educated hundreds of physicians, physician assistants, other medical personnel, as well as providers such as occupational therapy, speech therapy, and physical therapy.


It was during these 5 years I realized that parents did not have information available to them to support their children in the way they needed to be supported. Information about what resources were available, what departments to contact, how to obtain information, how to access services, who to turn to when you needed help, all of these things were passed down family to family. There was no one repository of all this information, there was no checklist of things to do. Social media didn't exist.


So my first goal became to learn everything I could about rare diseases, because that is what we were dealing with with our son. Typical therapies did not help, so we had to advocate well outside the normal box a strategies to access things that we thought would provide him with the best life he could have.


My second goal was to connect families of those special needs together, to provide one place where families could share their knowledge with each other. I started a special needs group for parents back on Meetup, many years ago. It started with parents that I had met, locally, in my attempts to obtain services and supports for our son.


After he died from his rare disease I poured my heart into this group. I moved it from Meetup to Facebook, right now this group has over a thousand members and covers an area from the Canadian border down to about Poughkeepsie from Massachusetts / Vermont to about Johnstown. And every day there are questions about how to obtain evaluations for children, how to obtain an IEP, how to access services, where to access services, what providers are available for certain needs. There are parents who respond with their experiences and it provides a community of support for all of us.


About 5 years ago our daughter entered Charlton Heights. It was quickly evident that she had some special needs as well although not Medical needs. With the assistance of Kathy, who was one of the occupational therapists we had with Dan our son, so we have known her many years, we identified her issues and obtained help to get our daughter the services she needed. Just this week we started planning for her transition to Middle School, and what supports she will have going with her, including what they look like, who will help her, where she can turn for assistance.


When most people think of special needs they think of wheelchairs or canes for those who are blind or seeing eye dogs. More and more special needs are the neuro diverse needs of many of the kids. Autism, adhd, trauma responses, obsessive compulsive disorders, speech issues, anxiety, all of these are special needs, and all of them can affect learning.


If you have kids in the buildings I bet you there is at least one student that sits next to your child who has some sort of special need or accommodation. Sometimes it's as simple as having a map, or labeled folders, or a touch strip on their computer that they can rub. Or they may be allowed to stand up and stretch and move around. Or they see a social worker for help with social skills or they see someone to help them with organization, keeping things organized in there notebooks in their binders in their lockers.


Having a child with special needs is a full-time job on top of the full-time job of being a parent and any sort of employment. It's finding that program that's going to give them a typical experience but that is not with typical kids. It's panicking when the school calls because you don't know if your kids behavior has escalated out of control. It's the small victories, getting a gold star in the agenda for having a good day.


When I saw that the district was starting a SEPTA, I knew I had to be there. I knew I had to advocate for all of the kids that are currently in the district that needs support, and for all the kids to follow. I knew I needed to be there to educate others on what it means to have a child with special needs. I knew I needed to be there to ensure that activities were inclusive of all, it's important of his many different challenges as possible.


You don't know what you don't know, and if you don't have experience with special needs, you don't know the challenges and the joys we have. I am honored to receive this membership and I will continue to advocate for my child and all the other children in the district, to have as normal an experience as possible, to not be identified as someone was special needs, but instead to be identified as a peer, as a friend. Maybe I'll take a moment to recognize the differences we all have, and to think about how we can support each other, as parents as friends as educators. Thank you.


Video:  about 5 minutes https://youtu.be/zJaY0M2SL0s?si=Bvr3ZoNTl_TYDnjg




Saturday, April 27, 2019

A letter

Dear Dan,

You were an unexpected blessing. I never saw myself as a mom. You made me see the world in a different way. You taught me what it means to love unconditionally. You wrote on my heart. I watched you grow and learn, as only you could. I watched you struggle. I was scared out of my mind every day that I wouldn't be able to say goodbye.

You taught me so much. I learned to stand up for myself, stand up for what I believed in.

You sent your sister to help me learn more of what you tried teaching me. I see you in her everyday. She sees you and plays with you.

Patience. Creativity. Fun. Presence. Love. Kindness.

Your 11’s are a message. A message to follow my instincts and my gut. A message to be the best person I can be to myself, dad and Shelby. A message to believe in myself.

I love you Dan. You will always be my baby, no matter how “old” you get.

Love, Mom

Sunday, April 7, 2019

April Showers (in the eyes)

Springtime always seems to bring me some tears.  It's an odd time of year to get sentimental and teary-eyed, but that's what grief is.

Unpacking the backyard firepit, cleaning up the yard.  These remind me of the fun times that Dan had in the backyard - driving around on his kid quad, chasing after us with sticks - laughing all the time.  I can't easily find it, but I remember putting him in snow pants because our backyard is usually soggy for most of April and sometimes into May.





Friday, December 7, 2018

December 7

This poem was shared with me today, for Dan's 12th birthday.

Mom to An Angel
Mommy, mommy,

I'm in heaven now,
God is keeping me safe and warm,
just as you did from the day I was born.
We need to cherish the memories,
till the day you're here with me.
Think of all the times you made me laugh,
and smile.

You made me the little boy I am today,
now let God take over he has his ways.
I'm an Angel now Mommy,
watching over you,
Oh I wanted to let you know I have
received my wings,

When we see each other again,
I will teach you how to use these things.
I want you to laugh Mommy,
and I will too.


Some days are tougher than others.  Today was one of those days.  Even our Elf "Love" knew we needed extra hugs.


Sunday, May 6, 2018

Bereaved Mother's

The Mother's Day I was pregnant with Dan, I looked at all the Mother's Day cards and couldn't wait for Dan to pick one out or create one in school.  He would be so proud of what he picked out or created.  

I had 5 Mother's Day's with him.  5 glorious days - with the last one just before his diagnosis of Niemann-Pick.

Then came the Mother's Day after we was gone.  One of the worst days I have had.  I felt like a failed mom - I couldn't keep my child safe, I couldn't protect him - I had failed as a mother.

The Mother's Day I was pregnant with Shelby, I started to look forward to those hand picked or hand created cards.  I was confident that I would have many years of those cards to look forward too.  My job as a mother wasn't complete - I was given a second chance.

The past couple of years, I have seen posts and articles about International Bereaved Mother's Day.  I usually see them the day of, and I never realize when it is coming.  I just realized that it is the 1st Sunday in May.

Anyway, today is that day - International Bereaved Mothers Day (#internationalbereavedmothersday).  Yes, it's a real day.  Would I say "Happy International Bereaved Mother's Day"?  Um, no.  But I have seen that phrase today.  Must be from someone who just didn't realize what it meant.

I found a great article on Huffington Post today.  Click here to read it.  You can visit the official page about this day here and some additional "holiday" information here.



Tuesday, May 1, 2018

Book Review: Beauty in the Broken Places


I  have been fortunte to be on several launch teams.  I joined this book launch team for Beauty in the Broken Places because I could relate to Allison's journey into being an unexpected caregiver.  When I received my copy to read, I kept putting it off because I didn't know if I wanted to re-experience the emotions what I went through with Dan - the sudden earth-shattering news, the loss of the life you expect to have, and your life being changed unexpectedly.

I eventually sat down and got completely immersed into Allison's and Davy's life - from the time they met, through his unlikely stroke, and into recovery.  In reading the words, it felt like an old friend talking to me. Allison has an amazing way with words, an easy conversational style that sucks the reader into the story.

There were times I cried, because I had felt the same feelings.  There were times I smiled and laughed, because, wellw ell just can't make up what happens in life.  It was hard to put the book down, even knowing how it ends.

But, overall, it's about the strength of two people who fight through the challenges that life throw at them.  Their marriage goes through challenges and they, and their marriage, come out stronger in the end.

If you have had marriage challenges, health challenges, or love to read memoirs, this book is definitely for you!

Here are just a few quotes from Lee Woodruff's forward and Allison's text:







Friday, April 20, 2018

Child loss awareness in an unexpected place

I'm sure almost everyone has heard that Barbara Bush died recently.  Have you read her obituary or any stories on her life?  I can tell you that I learned something the other day while reading her obituary.

She lost a daughter at age 3 to leukemia.

Yup.  One of the most respected First Lady's experienced child loss.  One article I read said that she refused to let anyone cry at her daughter's bedside while she was in the hospital.  Another article said they traveled the country looking for treatment.  Guess what?  Many parents of those affected by rare disease do the same.

What really caught my eye this morning was an image of Ms. Bush greeting her daughter Robin in heaven, with both of them running to each other.  Have you seen it? You can see it in this article. There are many other articles with the same image.  I chose this one because of the 2 videos in it - one of Mrs. Bush talking about her daughter and the other a letter.

Although many years have passed, talking about child loss and grief is still a difficult subject.  How many more years will it take to be an acceptable topic of conversation?