The “Irrational” Stage of Grief

10 May by Carrie
This is what I found when I arrived at the cemetery today. Felt like a knife in the heart.

This is what I found when I arrived at the cemetery today. Felt like a knife in the heart.

We always hear about the 5 stages of grief.   I think they  need to add one more – Irrationality.   Seriously.   In my head, I know things are a certain way, but convincing my heart that what I’m thinking is something I haven’t been able to figure out.

Mother’s Day is coming up this weekend.   To say that I’m dreading this day is an understatement.   There are a variety of reasons, but the biggest one is because it reminds me how I failed at Mommyhood with Hannah.

Each holiday has its tough moments.   After 16+ months of her being gone, it still feels like my heart has been freshly ripped out of my chest at times.   These family holidays come up, and I’m so actively aware that she is not part of our celebration.

But Mother’s Day doesn’t just make me miss her.  It makes me feel like I failed her.   Failed to protect her from this world.  Failed to take care of her pain the last few months of her life.  Failed to save her.

Irrationality.  My head says that what I’m feeling isn’t right.  That I did try to do everything I could for Hannah.   But my heart is stronger than my head because all I can think about is how I can avoid Mother’s Day and not having to acknowledge it – but I don’t have that luxury because Ethan and Abby are so excited to do something.

Then today…

After lunch with a friend today, I went to visit the cemetery.   When I got there, I noticed most of Hannah’s decorations were gone.  I looked around and saw all of the other kid’s graves were still decorated, and I lost it.   I called my husband in tears, so incredibly upset.

Who the hell would steal my Hannah’s grave decorations?

Keeping her grave colorful, blingy, and full of brightness with color and knick-knacks is so incredibly important to me.  It is the ONLY thing I can do for her now, and I look forward to changing it out every month with new flowers, new seasonable additions.    So when I saw her decorations gone, with the exception of her pinwheel and Minnie solar light, I lost it.   The empty vases.  The little additions around her marker like a Minnie Mouse figurine, lady bugs, and her two bright bouquets from this month were gone.

Hannah's area after we redecorated tonight. Still need to find some Minnie and Mickey, ladybug, or other little knick-knacks.

Hannah’s area after we redecorated tonight.  Still need to find some Minnie and Mickey, ladybug, or other little knick-knacks.

After I got off the phone with my husband, I went straight to Michael’s to buy new decorations.   It had been two weeks since I had been to the cemetery, longest I have ever been away, and I don’t know how long her area had been like this.  I couldn’t let it stay like that one minute longer.

What happened today threw me into a major funk.  I was so upset, so lost, and felt so violated.    I know that this was just the straw that broke my proverbial back because I have been under a lot of stress these past few weeks including Mother’s Day coming up.

After Michael’s, I went home to get the decorations ready and just went into my bedroom, crawled into bed, sulked, and eventually fell asleep for an hour.

When I woke up, my husband, kids, and I went to the cemetery together and redecorated Hannah’s area.   Missing some knick-knacks, but I will get those this weekend.

Irrationality.  My head says it is just things.  It doesn’t replace our memories.   But my heart is freaking out because I feel like someone took something from her, from me.   I always felt safe visiting Hannah at the cemetery, but now I’m always going to go there afraid of what I might find or what I might not find.  

Irrationality.   Instead of going every couple of weeks to visit, I am going to go more often again.  If this happens again, I can’t let her have empty vases that long.  Empty vases means not caring.   I want Hannah to always know that we are thinking of her, missing her, and still wanting to take care of her.

I am dealing with the hands I have been dealt – some of them great, some of them really crappy, some of them encouraging, some of them destructive.   It is what it is – irrationality and all.

2 Comments ~ Filed Under: Surviving

Little Miss Hannah Continues to Impact our Rare Disease Community

11 Apr by Carrie
Little Miss Hannah and her mom, Carrie Ostrea

Little Miss Hannah and her mom, Carrie Ostrea

Rare Disease Impact Report quantifies patient and caregiver challenges on journey to diagnosis and beyond
(Reposted from My San Antonio media)

(BPT) – Getting a diagnosis is just the first of many challenges patients with rare diseases – and their caregivers – face.

“We went through a number of specialists until we found a team that finally looked at my daughter, Hannah, as a patient with unique needs,” says Carrie Ostrea of Las Vegas, Nev. “The process was filled with huge financial challenges. My husband was laid off from his job of five years and we had to continue to pay for insurance just so Hannah could continue getting treatments. The isolation was also incredibly difficult. Some of our family even stayed away from us because they couldn’t handle the situation of us having a child with a rare illness.”

Hannah Ostrea was diagnosed with Gaucher Disease type 2/3, a fatal rare genetic disorder characterized by brainstem dysfunction, loss of primitive functions such as breathing and swallowing, low blood platelets, and enlargement of the liver and spleen. She passed away at age three.

Carrie Ostrea is just one of the 350 million people worldwide who are affected by rare diseases. While Carrie’s experience caring for her daughter – from diagnosis to treatment – was unique, the challenges she faced resonate with many patients and caregivers facing a rare disease. Specific challenges and new insights are featured in a first-of-its-kind Rare Disease Impact Report, commissioned by Shire Human Genetic Therapies. This Impact Report identifies and quantifies the health, psycho-social, and economic impacts of rare diseases on patients, families, and the medical community.

Rare Disease Impact Report

Click to read the 2013 Rare Disease Impact Report

According to more than 1,000 survey responses from patients, caregivers, physicians, and payors who handle reimbursements for healthcare plans and governments/institutions in the United States and United Kingdom:

* It takes more than seven years in the U.S. and five years in the U.K. for a patient with a rare disease to receive a proper diagnosis

* On the journey to diagnosis, a patient typically visits up to eight physicians (four primary care and four specialists) and receives two to three misdiagnoses

* Physicians (both primary care and specialists) often don’t have the time, resources and information to properly diagnose/manage patients with rare diseases, compared to more common diseases seen

* Due to the uncertainty, the lack of available information, resources, and economic strains, rare diseases take a major emotional toll on patients and their caregivers

Rare diseases are conditions that affect a small portion of the population, but are often chronic, progressive, degenerative, life-threatening and disabling. While individual rare diseases are uncommon and disparate, collectively there are about 7,000 different types of rare diseases and disorders that have been identified.

“The new insights featured in the Rare Disease Impact Report reinforce some of the major issues we see in the rare disease space, particularly the obstacles in getting adequate information and ongoing care,” says Nicole Boice, founder and CEO of Global Genes | RARE Project, and advisory board member for the Rare Disease Impact Report. “My hope is that these gaps identified in the report inspire the rare disease community to work together to create a better outlook for patients and their families.”

Visit www.RareDiseaseImpact.com to get more information and view the full Impact Report.

~ Filed Under: LMH Foundation

Little Miss Hannah Goes to Washington!

2 Mar by Carrie
Hannah's 1st visit to the NIH in July 2009 (her second one was March 2010)

It has been an absolutely crazy, wonderful, inspiring, and emotional week! I won’t go into detail about what we did because my husband has been doing an awesome job blogging about it.  (Definitely recommend reading these). It was my first time “lobbying” and being able to share Hannah’s story personally with Senator Dean Heller and [...]

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~ Filed Under: LMH Foundation, Surviving

Little Miss Hannah Foundation is Heading to Washington D.C. to Advocate for Childhood Rare Disease Awareness

25 Feb by Carrie

Written by Robert Ostrea This year, I will be representing the Little Miss Hannah Foundation at the Legislative Conference & Lobby Day, organized by the Rare Disease Legislative Advocates (RDLA), located in Washington, D.C. This will be a fantastic opportunity to join forces with other rare disease groups and parent advocates to meet with members of [...]

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~ Filed Under: LMH Foundation

Scentsy Fundraiser for Little Miss Hannah Foundation

17 Feb by Carrie
Scentsy Fundraiser for Little Miss Hannah Foundation

Marie-Luise Smith, the generous woman who donated 20 Scentsy buddies to our organization last month, is hosting a Scentsy Party for our Little Miss Hannah Foundation! She has offered to donate her entire commission to our organization for each purchase at our LMHF Party. Order here! The money raised through this fundraiser will go directly [...]

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~ Filed Under: LMH Foundation

I’ve Had a Magic Spell Cast Over Me

14 Feb by Carrie
My Valentine's gift from my hubby

I was never a huge Disney fan growing up.  Disneyland was fun every once in a while, but I never really understood the “magic” of Disney until Hannah.   She seemed to embrace Mickey and Minnie when she was less than a year old and never wavered from that love of Disney magic. Today, on Valentine’s Day, [...]

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~ Filed Under: Surviving
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