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.

Monday, July 30, 2012

It never ends....

Just when I thought it was a quiet, peaceful weekend.....

Friday July 27 was 7 years that Andrew Limer (NPC) became an angel. 

Wylder James Laffoon (NPA) was laid to rest at sea on Saturday July 28 in a beautiful ceremony.

Today, Monday July 30 is the 8th birthday of Calum Burdon in the UK, who lost his fight with NPC on December 26.

Today is also the 9th month since Gavin Lopez lost his fight with NPC.  During Gavin's final weeks, I read mom Kristen's blog daily, sometimes more frequently, just to know and understand what we were facing.  Little did I know that only 12 days later.....  So Kristen and I share a deep bond. 

Also, Thursday August 2 marks 3 months since Monica Taillefer in Canada grew her angel wings, free from NPC. And her 3rd birthday is Sunday, August 5.

Although rare, this disease is all over and on any given day or week there is probably an angel-versy or birthday.

Kaitlyn's father posted this beautiful verse today:
"He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away." (Revelation 21:4 ESV)Such a gentle reminder that all the pain and discomfort our children have is gone and they can be free to be themselves again.  Thank you Chip!

Friday, July 20, 2012

Warrior Angel

The Laffoon's lost their warrior Wylder this morning to Niemann Pick Type A.

Their touching story is here.

Wylder had recently turned 3 and celebrated around the world with balloon releases.

Please keep the family in your thoughts and prayers.

Thursday, July 19, 2012

Check your Data

During this past week, I read a series of articles about the unfortunate death of Rory Staunton, a 12-year old boy in NYC.  He scraped his arm in school, went to his primary care doctor who sent him to the emergency room.  The doctors there hydrated him and sent him home thinking he had the "stomach bug" that was going around.  After he was discharged, lab values came back showing he was fighting a serious infection.

However those values were not reviewed and not provided to his primary care doctor.  A few days later Rory was admitted into the ICU where he died of septic shock.

A follow-up article in the NY Times talks about the procedures the NYC hospital has put in place to make sure this doesn't happen again.  These procedures include a checklist for the nurse and doctor to make sure all imporant lab tests are received and reviewed and vital signs are checked and verified before discharge.  How simple is this?  It took the death of a child to put something as simple as this in place?

I found these paragraphs from that article interesting:

Joshua Needleman, a specialist in pediatric pulmonology at Weill Cornell Medical Center in New York, said the implications of the Staunton case went beyond ferreting out a specific disease and showed how important it was for doctors to keep open minds.

“The big questions are about how to integrate new information that doesn’t fit with the perception you have formed,” he wrote in an e-mail. “How to listen to the patient when they are telling you something that doesn’t fit with your internal narrative of the case. These are the hardest things to do in medicine and yet the most important.” Dr. Needleman said he planned to use details of the Staunton case to teach those points to medical students and was grateful that the boy’s parents had disclosed the painful details.

I put in red what I think is the most important part of this - ACTUALLY listening to the patient (or the patient's parents) and not being driven by the quickest, easiest diagnosis.

Here are the links to the news articles:

8 Months

It's been a bit past 8 months since we lost Dan.  There isn't a day that goes by that we don't think about him or talk t him and tell him we love him, even though he isn't physically here to hear us.

I think we have more good days than bad, but sometimes the bad ones are tear-filled with no real desire to do anything. You never fully heal.

Tuesday, July 17, 2012


I never really had good friends when I was in school.  I was too smart and kept to myself.  In college I came out of my shell a bit (thanks to those crazy theatre folks in Stage III!).  I never really considered myself as having those "good friends" who I could really talk to.  I had a few during school, and they are still around - thanks Greg, Shannon, Kelli!! - but they were few and far between.

In the past few days I have had two - yes two! - really great afternoons with two totally different people, both of whom I have met only in the past few years, and both of whom I consider good friends.

Given my life, I should have learned to expect the unexpected, but it just dawned on me that I consider these two really good friends.  So thank you Joni and Alison for some wonderful conversations and true relaxing time.

I also count several people who I have only met online or talked to on the phone as good friends too...some who have lost children, others who haven't.  So thank you to you as well - Kristen, Shannon.

Hmmm...looking at this post again....the Shannon from my years growing up is different than the Shannon now...but interesting how the names are the same.

Saturday, July 14, 2012

Life Celebrations

Another tough weekend in the Niemann Pick community.

Today is the memorial celebration for Naomi, who lost her fight about a week ago.

Matty in Australia lost his fight just a few hours prior to this entry.

A celebration of angel Emily's birthday is tomorrow.

I've only been writing this blog for a few weeks, and this is the second (of I'm sure what will be many) entries on our angels.  Please help spread awareness of Niemann Pick diseases.  More information can be found at the links on the left side of the page.

This was posted by NNPDF:
"Here for YOU Always!" This video montage and song was inspired by the sweet and beautiful Naomi Grace Tyrrell. This song written by Rachael Taylor, was inspired by Naomi and all of the children, young adults and families on their journey with Niemann-Pick Disease. As the family of Naomi Grace gather tomorrow to celebrate her precious life ~ please take the time to remember our loved ones, listen to this song, feel the love and know how precious all of our loved ones mean to us ~ and ~ that we will be "Here for YOU Always!" With love to you all ~ Nadine

But on a brighter note, today Johnathan's Dreams, a charity named for a child in California with NPC, is having a charity event to raise funds for NP.

Thursday, July 12, 2012

Talking about Dan

Another quote from the Grief Speaks Facebook page:

Expect that at first some people will fall silent when you enter a room or have trouble making eye contact with you. They are likely at a loss as to what to say and they are not intending to be rude. There may be times when you do not feel like talking, so this reaction might actually be welcome.
If you feel like it bring up the topic of your baby's death with these silent co-workers and let them know where you are at. For many this is all it takes to give them permission to say something- they're only waiting for your lead because they aren't sure if you want to talk about it.
~ A Guide for Fathers: When a Baby Dies by Tim Nelson
I know many who are worried about talking about Dan with me.  Yes, there are times I will cry as we talk, but there are many times when I will laugh and smile as you tell me about your memories of  him.  That is one of the greatest gifts you can give a grieving parent - a happy memory of their child, or an experience that you want to share.  It means that Dan isn't forgotten and made an impact in your life, even for a little bit.

Wednesday, July 11, 2012

The line

I saw this quote on the Grief Speaks Facebook page:

"Around our house, we still categorize events as happening "before the boys died" or "after the boys died." Like most families, we had experienced the predictable deaths of older family members. The deaths of parents and grandparents are expected. They are bound to come. They are part of the natural sequence of life. Some people live long. Others not so long. When you bury the people in the generation ahead of you, it is with sadness and resignation. But, when you bury your own children, life is suddenly and terribly out of proper sequence."
~When There are No Words: Finding your way to cope with loss and grief by Charlie Walton

For us there are two "lines" - the day of diagnosis and the day Dan died.  Life before the first line was normal, doing things as a family, laughing and having a good time.  Life between the two lines was full of medications, doctor appointments and managing feeding tubes.  Life after the last line is just different - something is missing.

But just like any other "line" in our life - first apartment, first home, getting married - there is always a before and an after and life is different.  No necessarily good or bad, just different.

Friday, July 6, 2012


I came across an article about including "complicated grief" as a new diagnosis is the DSM manual.  But the discussion about including it or not wasn't what fascinated me.  This series of paragraphs did:

Bowen says part of the problem is that Americans as a whole simply aren’t comfortable with death. Many try to ignore the fact that it happens. Therefore, when an individual experiences a loss, he or she is often rushed through the grieving process.

“For example, in most corporations, you’re expected to be over the loss and back to work in a very short amount of time,” Bowen says. “Our legal and financial system also make grieving much harder on the individual. In the midst of a death, you have to immediately deal with the Social Security Administration and the Register of Deeds and all sorts of other responsibilities. When you have all of these matters to take care of, you end up putting your emotions in a box and tucking them away instead of dealing with that grief right away. But grief will wait. It doesn’t just go away because you are too busy to attend to it.”

Other cultures, Bowen says, handle grieving much more effectively. They understand the power behind memorializing their loved ones and the fact that grieving is a process. Many Americans typically devote only two or three days to focus on their grieving—maybe a viewing one day and a funeral the next.

“Other cultures and traditions don’t rush things,” Bowen explains. “In the Jewish tradition, there is no headstone placed on the grave until a year later when it’s unveiled in a special ceremony. And at all major holidays, there’s a special candle lit in memorial of the person who has passed. In the Lakota tradition, a year after someone has died, they have a Wiping of the Tears ceremony in which the deceased person is honored. But in the U.S., we don’t do a good job of memorializing. I suggest to clients that a way of grieving without pills is to work on creating a ritual. I’ve had people plant trees or donate money to a playground. It’s a new step in the process, and it often helps.”

(Bowen is Deborah E. Bowen, undergraduate program coordinator and interim associate director of the School of Social Work at the University of North Carolina, Wilmington who authored A Good Friend for Bad Times: Helping Others Through Grief.)


I also had a discussion the other day about grieving the loss of a child.  Although I only know how I feel, it seems like grief for a child lasts alot longer than grief for an adult or other family member.  The conclusion we came to was that, as a parent, you aren't just grieving the loss of the child, you are grieving the loss of what that child would have been and all the things that the child won't see or be a part of or experience.  It's a bigger process, a bigger understanding, a bigger adjustment.

Does "complicated grief" belong as an official diagnosis?  I don't have the answer to that, but I do know that it isn't easy and it lasts forever.  And it will show itself in strange and unexpected ways.

Sunday, July 1, 2012

Tough Weekend

What a weekend!

Every time I turn around there is something else that happened this weekend that makes yet another emotional dent.

Gavin - 8 months as an angel
Kaitlyn - would have been 3 today
Emily - 2 years as an angel
Trek - a flower tribute to a 10 day angel

And earlier this week:
Calum - 6 months as an angel

And this coming week:
Monica - 2 months as an angel on Monday
Faith - would have been 7 on Tuesday

But on a happier note....my Dan is blessing me with new internal strength.

Please send peaceful thoughts to the families of those listed here, as well as all the other families who can use a little boost of comfort.