Class of 2025

 The past few weeks we've been receiving mail from places called College Way. I've been throwing them in the garbage.

It was today when I realized these are arriving because Dan would be entering his Senior year in High School. He would be in the Class of 2025.

Oof. That hit hard this morning.

I picked up this statue this morning that someone was giving away. It's on Shelby's dresser, as a reminder that we will let her fly, but always be there to support her.

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

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

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.

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.

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.

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:

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?

Another Rare Disease Day is done

Usually I post quite a few items related to Rare Disease Day, held on the last day of February.

I obviously didn't this year.  It wasn't for lack of wanting, it was for lack of knowing what to write.

One year I focused on those with Niemann-Pick Disease.  Another year, I focused on a bunch of rare diseases.  I've even included a list of some of the rare disease statistics.  Some of these articles are still some of my most popular.

Other than losing quite a few of the people I featured, not much has changed in the rare disease world.  I've been blogging for about 6 years, and not much has changed. Yes, there are now some treatments and some clinical trials for some of these rare diseases.  Yes, awareness has increased.

Rare Disease isn't just an awareness campaign once a year - it is a daily struggle for so many.  And so many are dealing with ultra rare conditions, they don't have a name yet.

The 2018 theme was Show Your Rare, Show You Care.  We all need to be a bit more caring to others, no matter if they have a rate disease or not.

I've Been Thinking book

I've been fortunate to be asked to be part of a book launch team for Maria Shriver's new book, I've Been Thinking, due out February 27, 2018.

In one section she talks about grief and grieving.

Grief is not linear or time bound.  Sometimes the unexpected causes grief to bubble to the surface.  It never goes away, it is always under the surface.

And it is a subject that needs some talking about.

Get Over It

Thankfully I have never actually heard the words "Get over it".  There have been many people, by their actions, who have made me feel like I should be "over it".

Well, here's the news flash - there is no "getting over" the loss of a child.

I read a great article about "getting over it" the other day.  I encourage everyone, especially those who have never lost someone close to them, to read this article.

The loss of a parent is similar to the loss of a child.  There is one significant difference - a parent had a lifetime of experiences - including going to school, getting married, having kids, etc.  Losing a child also means losing all those experiences.  It's a very different grief process, one that you never "get over".

Melancholy

This time of year always makes me think about the past year and I always get a bit melancholy.

This year it's hitting a bit harder.  I was going through some "On This Day" posts this week.  I think I realize why.

2011: I spent almost 24 hours editing videos and saving them to CDs to bring to Dan's doctors.

2014: Dan's urn arrived and we were finally able to give him is permanent resting place.  I remember ordering it as soon as my Jamberry bonus arrived and Shelby kissing the bag of ashes (at 16 months) and saying "I love you".

This meteor shower last night also didn't help with the emotional balance.  Plus the frigid weather is keeping me huddled up with comfort clothes and food.

Shelby doesn't quite understand why mommy locks herself in the bathroom at times.  Sometimes a deep cry is healing.

Time to slow down

Have you ever looked at your day or week and said "where did the week go?" and your to-do list was never touched?


Yeah, well I did that today.  And I realized that most of that busyness was created by others and we were just reacting to it. 

It wasn't due to things that we were planning on doing, it was all the extras that everyone else decided were important for us.

Well, after this realization, it's time to make what my daughter and husband and I want to do the priority.  We get so little time together as a family, we need to make the most of it.

So last night we went to a kids Polar Express party where Shelby created ornaments and a mug.  Today was breakfast with Santa (to benefit a local non profit) with a bounce house and putting our own tree up.  Tomorrow is a kids Christmas party for most of the afternoon.

Yes, we are busy.  To see the joy on her face as she experiences new things, and remembers things from past years, is priceless.

The end of October

The end of October Awareness Month is here.  That doesn't mean that I stop talking about Niemann-Pick Disease or my experience or asking for financial support for the families being helped by the NNPDF like we were.  Here are the final quick facts for this year:

October Awareness continues

If you have followed this blog enough, you know that October has a push for Niemann-Pick Disease Awareness.

If you are new, you can read the detailed story as to why this is so important to me.

For the short version, grab a tissue.  My son was diagnosed with Niemann-Pick Type C at age 4 1/2.  He died from disease complications before he turned 5.

Well before I knew this rare disease existed, and well before we were personally affected, October was designated as Niemann-Pick Disease Awareness Month.  We have an uphill battle each year, against some other more well known diseases. 

But the underdog has continued to rise - with your help.  By sharing my blog posts, sharing from the National Niemann-Pick Disease Foundation Facebook page, and donating, the disease is being identified earlier and treatments are becoming available.

So thank you.  If you are an affected family, please reach out to me.  I am happy to listen, talk, share my experience, and help you find resources to support you.

October Awareness - Vision of Hope

The National Niemann-Pick Disease Foundation has been around for 25 years, providing support to families and funding promising research.

In recognition of that, the Vision of Hope Campaign is encouraging donations of $25 in recognition of the 25 years.

In addition, I am giving 25% of all Jamberry sales during October to the NNPDF.

And I can't forget about the information squares for this week:

October Awareness has begun

Every October I post information about Niemann-Pick Disease.  October is the month selected to share Awareness.  Yes, we are in an uphill battle against some other awareness months.  But we persevere.

This month, I am donating 25% of all sales from my Jamberry business to the NNPDF.  In addition, my entire commission is donated for my Niemann-Pick nail wrap and a coordinating lacquer, So Presh.  Go check them out.

Here are the first 5 facts for October. Share them from new new NNPDF Facebook page

Diapers

Dan was in diapers from the day he was born (premmie) to the day he died (size 5/6).  I was fortunate to have family help pay for them for many years and then NYS Medicaid reimbursed me for some as well. 

Those families with children who have special needs have to find a way to pay for them until at least age 3, sometimes longer. 

 

The need is there for more  than just those with special needs. Can you believe that 1 in 3 families have to make a choice between buying diapers and buying necessities like food or electricity.

Let's make sure all babies have enough diapers.  Order some holiday gifts at http://jillflinton.jamberry.com and help support No Bottom Left Behind Diaper Bank!

School days

Well, it's happening again.  It's the first day of school.  Something we never had a chance to experience with Dan.  And every year, it hurts seeing all the kids going back to school.  I feel my heart break when I see pictures of kids that are Dan's age - knowing what grade he would be in, what he would be doing.

For some reason, the start of the school year is a trigger point for me.  Maybe it is seeing the kids get a year older.  Maybe it is seeing what they are going.  It makes me realize how much I have missed. Don't get me wrong, I love seeing the pictures. It's just something we never had the chance to experience.

Shelby is starting Kindergarten next year.  I wonder if some of these feelings will ease. 

Conference is over... Our work is just beginning

During May, June, July and early August, I spent countless hours organizing materials, helping with Conference logistics and making sure families were well supported.

One major aspect of the conference is our memorial table.  This year there were 9 frames.  Still 9 too many.

Progress is being made, slowly.  In the 5 years we have been going to the NNPDF Conferences, we have gone from 0 clinical trials to 4.  There is still much that needs to be done.

The other big highlight of the weekend is the Gala dance.  And a little girl enjoyed every minute of it!

October is coming.  That means awareness and a campaign: $25 for 25 years of support to families. Please watch for ways to contribute.