Happy birthday, Hannah. I miss your smile, your wiggle, and that adorable little laugh of yours. Most of all, I miss your snuggles, cuddles, and just having you are my arms. Not having you hear with me hurts my heart, my soul. Daddy, Ethan, Abigail, and I miss you so much. ♥
Archives for July 2012
Tomorrow’s balloon release
24 Jul by
July 25th ~ Little Miss Hannah’s Rainbows in the Sky Event
If you are unable to make our event on July 25th and would like to have a balloon released with your personal message to someone special, please go to http://littlemisshannah.org/rainbows-event-balloon-release
All proceeds from our balloon release will help us fund services for our Little Miss Hannah Foundation families.
Hallmark Card for me…
20 Jul by
I found this online. Not sure who wrote it, but it brought me to tears…
Dear Mr. Hallmark,
I am writing to you from heaven, and though it must appear
… A rather strange idea, I see everything from here.
I just popped in to visit, your stores to find a card
A card of love for my mother, as this day for her is hard.
There must be some mistake I thought, every card you could imagine
Except I could not find a card, from a child who lives in heaven.
She is still a mother too, no matter where I reside
I had to leave, she understands, but oh the tears she’s cried.
I thought that if I wrote you, that you would come to know
that though I live in heaven now, I still love my mother so.
She talks with me, and dreams with me; we still share laughter too,
Memories our way of speaking now, would you see what you could do?
My mother carries me in her heart, her tears she hides from sight.
She writes poems to honor me, sometimes far into the night
She plants flowers in my garden, there my living memory dwells
She writes to other grieving parents, trying to ease their pain as well.
So you see Mr. Hallmark, though I no longer live on earth
I must find a way, to remind her of her wondrous worth
She needs to be honored, and remembered too
Just as the children of earth will do.
Thank you Mr. Hallmark, I know you’ll do your best
I have done all I can do; to you I’ll leave the rest.
Find a way to tell her, how much she means to me
Until I can do it for myself, when she joins me in eternity.
Weekend away…
19 Jul by
View from the house….ahhhhh
We went away for a long weekend road trip to get together with some friends. One of them had a lakehouse in Northern California, which I swear I could have lived on her deck forever. It was absolutely beautiful.
It was such a nice weekend away. The internet didn’t work that well, and it was actually refreshing not being “connected” all the time. The kids had plenty of new and old friends to play with, and I enjoyed being able to just relax and chat outside of the stress of everything going on. “Decompressing” was the best term I could use for that time. And it just reaffirmed how awesome these friends are.
On the way to the lake house, we stopped in Reno to see some friends. I was able to meet and spend time with Addi and Cassi for the first time in person, and OMG, I just couldn’t stop loving on them. Being able to sit down with Chris Hempel, someone who I have talked to on the phone and emailed with more times than I could count ~ finally spending time face to face, and it was if that meeting in person was just a technicality.
On the way home from the lake house, we stopped in Virginia City, NV, and took a tractor tour of the city. It was a lot of fun seeing the old ghost town and mining town, and the kids were fascinated! We also stopped for dinner at the Mizpah Hotel in Tonopah ~ but we didn’t see any ghosts, kids were bummed!
When we blow out tires, we blow them out big apparently!
We should have known the weekend went too well because we were reminded about 35 miles outside of Vegas at 12:30 am in the desert. Front tire blowout. Daddy had to take everything out of the back of our minivan only to find out that our spare was actually under Ethan’s seat. So picture will you, pitch black desert highway, a car or truck whizzing by every so often, and a minivan pulled over with its entire contents stuffed with suitcases, coolers, books (thanks Mindy!), etc. Fortunately, AAA made it out there in about an hour and had us back on the road.
We got home at 3 am on Tuesday morning. We are STILL recuperating 🙂
This trip came at the perfect time. The stress from our upcoming event in SIX days and then the anxiety about Hannah’s birthday coming up … it was really getting to me.
I realize now that whatever happens at the event, if something goes wrong or gets chaotic, it will be what it is. We are preparing like crazy and have SO many people spreading the word that I hope it is a success. But I can’t stress about the turnout or how it will end up because the most important thing about the event is being able to then focus on what I really want to do – helping families. So whatever we raise at the event will be more than we had before the event, and every dollar will go to doing what our passion is leading us to.
As for Hannah’s birthday, I am still very anxious about it. It is almost as if I don’t want it to pass because I’m not ready for that milestone to hit. All I know is that in the morning, Daddy, the kids and I are going to the cemetery and bringing her balloons. I need some time for her before we head off to The District to prepare for the night’s event.
Las Vegas Review Journal Article on our family
13 Jul by
After losing their daughter to rare disease, a Henderson family has created a foundation in her honor
Make-A-Wish Disney World Trip, April 2011 – Members of the Ostrea family, clockwise from left, Abigail, Carrie, Robert, Ethan and Hannah, are shown at Disney World. Hannah, who suffered from Gaucher disease, died in December. She was 3. Her parents plan to launch the Little Miss Hannah Foundation to offer resources to the families of children who suffer from life-limiting diseases.
Posted: Jul. 10, 2012 | 12:35 a.m.
Even though Hannah Ostrea died when she was 3, her family plans to make sure her name and memory live on through the Little Miss Hannah Foundation, which offers resources to families with children of life-limiting rare diseases.
The foundation’s official launch is scheduled from 5:30 to 9 p.m. July 25 at The District at Green Valley Ranch.
“It would have been Hannah’s fourth birthday,” Ostrea said.
The event, “Rainbows to the Sky,” is scheduled to be a fundraiser. The family also hopes to create awareness for the organization and rare childhood diseases, such as Gaucher disease, from which Hannah suffered.
The family-friendly event is set to include music, activities, raffles and a balloon release to honor the memories of those who have died.
Ostrea’s goal is to raise $10,000, which should be raised through the raffle.
“I think to be comfortable, that’s a good goal,” she said.
When Ostrea and Robert, Hannah’s dad, married 15 years ago, they discovered they were unable to have children.
“We went through fertility treatments,” Carrie said. “Had four or five miscarriages.”
To start their family, the couple decided to adopt – first Ethan, then Abigail. About four years ago, when the family was living in Texas, Carrie started getting sick.
“It was (Abigail) who said maybe I was pregnant,” Carrie said. “(My husband and I) looked at each other and were like, ‘That’s not possible. We are infertile.’ ”
Carrie went to her doctor, and sure enough, she was 10 weeks pregnant.
“We did the (amniocentesis),” Carrie said. “We did genetic testing for Jewish diseases because I’m Jewish. We came back negative for Down syndrome and other chromosomal disorders. We found out we were having a girl.”
Hannah – or Little Miss Hannah as the family called her affectionately – was born July 25, 2008, weighing 6 pounds and 11 ounces.
“We had one good night without any medical issues,” Carrie said.
The next night, Carrie, who was half asleep, heard nurses talking about Hannah.
“She said, ‘This baby doesn’t need her kidney,’ ” Carrie said. “I just started screaming, asking what they were talking about.”
The hospital began to run tests on Hannah and discovered that her spleen was enlarged. Hannah spent the next few weeks in the neonatal intensive care unit as the doctors tried to find answers.
After Hannah was released, still with no clue to her ailment, Carrie met with specialist after specialist until a diagnosis was reached: Hannah suffered from neuronopathic Gaucher disease, a life-limiting genetic metabolic disease.
Hannah was one of about 50 current cases in the country, Carrie said.
“She was either type 2 or type 3, doctors said,” Carrie said. “They said she wouldn’t make it past nine months. She wouldn’t even see her first birthday.”
That answer did not settle well with the Ostreas. They sought every expert, researcher and scientist in the country to find answers and perhaps a cure.
Even after consulting with a top neurosurgeon in Texas who specialized in Gaucher disease, the family sent brain cells to researchers in Canada and Israel.
But all news was bleak.
The one thing the family did learn was that even though the specialists they had contacted were dedicated to researching Gaucher disease, there was little work being put toward the disease and even less funding.
“Parkinson’s gets about $63 million a year (in funding),” Carrie said. “Gaucher has gotten about $1.5 million in 20 years.”
Despite the cruel course the disease would run on her body, Hannah survived past her first birthday and even on to her second and third.
“She reached the development of about 20 months old,” Carrie said. “She would chase after the kids.”
But soon, Hannah started to decline, and most of the progress she had made began to fade.
“She could no longer roll over,” Carrie said. “She couldn’t really interact anymore, which was weird because she loved to laugh and smile and play. The last year was really hard.”
The family went to Disney World as part of a Make-A-Wish Foundation trip.
“She loved Mickey and Minnie.” Carrie said. “She got to meet them three times and just lit up.”
Around September 2011, Hannah’s condition worsened. According to new MRI scans, her brain matter had deteriorated significantly from where it was the previous year.
“The doctors gave us two options,” Carrie said.
Hannah could either undergo brain drilling to help relieve the pain or be put into a medically induced coma. Seeing that Hannah was in pain and that the brain drilling option was experimental, the family decided to take her home.
First, they met with Nathan Adelson Hospice’s pediatric sector. Hannah stayed at the hospice for three days until she was able to come home.
“She stayed with us for seven weeks,” Carrie said. “She made it through all our birthdays and Thanksgiving.”
On Dec. 4, 2011, with all her family in the house, Hannah died.
“You can’t say you have a plan for this,” Carrie said. “But she was home, surrounded by everyone who loved her with no machines. It was the right way for it to happen.”
Organizing the event and creating the foundation has been therapeutic, Carrie said.
“It keeps her at the forefront of our minds,” Robert said.
In addition to offering awareness of rare diseases such as Gaucher disease and connecting families to resources, the foundation plans to offer services for families, in particular siblings of children with life-limiting disorders.
“There are organizations and agencies for the child,” Robert said. “But resources for the siblings or the parents are few and far between.”
The Ostreas’ goal is to get the foundation running in Southern Nevada, start making progress in Northern Nevada and Utah by the end of 2013 and eventually take it nationwide.
“We just want to help,” Carrie said. “We want to do something that makes a difference in Hannah’s name.”
For more information, visit littlemisshannah.org.
Contact Henderson/Anthem View reporter Michael Lyle at mlyle@viewnews.com or 387-5201.
Two weeks and one day….
11 Jul by
Hannah, 9 months old
Two weeks and one day until Hannah should be turning 4.
Two weeks and one day until one of the biggest projects of my life.
Two weeks and one day … yet the anxiety has been building up for weeks. All my anxiety is focused on this day lately it seems.
I feel like I’m on this constant roller coaster between grief, stress, and anxiety.
How am I going to handle that day? My baby girl’s birthday. Is it still considered a birthday? She will forever be three years old in my heart. Three. Can’t really say it is her 4th birthday – or can I? She should BE here … WITH ME!
The anxiety about this event. It has turned from this little event where we hope someone will notice to this huge community event with support from so many people we couldn’t even conceive of just a few months ago. Radio stations, local TV media, popular kids entertainment companies, celebrities, local companies and people with huge hearts.
And the thing is, thanks to my amazing team and board of directors for our foundation, it is actually coming together! There is no way I could have done this by myself.
So then the anxiety about the event begins — will everything work as planned that night? Probably not, but hopefully it will be little. Will people show up? We have so many people spreading the word about the event ~ but people need to come join us that night for it to be a success. Then the stupid things I stress about like not having enough cold water for our volunteers…I know, not a big deal, but yes, that is a stress too.
Then the thing that makes me the most anxious … how will I handle that night? All those people coming to celebrate Hannah, to learn her story, to talk about her and the foundation, saying her name … on her birthday … the day I gave birth to her just four years earlier. Part of me wants to run and hide from it all, but then the other part knows that I need to be there for Hannah, to celebrate Hannah, to show my pride that *I* was Hannah’s mom.
Yes, for way too short of a time, I got to be with my daughter, Hannah. Physically, emotionally… ugh…
Fifteen days from today. It is going to be a very, very emotional day for me. I already know this, and I’m trying to accept it. I just wish I knew what emotions were going to come out. Will I be strong enough to make it through the entire event with a smile? Will I be able to do my “thank you for coming” little speech? Will I get overwhelmed with it all and want to hide? Will I make it through the event just fine and then crash into a heaping pile of mess the next day?
I’m VERY excited about our event. Not for me, but what it will mean to getting our foundation off the ground and actually start being able to help local families. This is our shot — our chance to raise enough money and awareness to make a REAL difference in our community. I need to be ready to tackle it all that night – whatever comes my way.
I’m ready to share the the world how special children like Hannah deserve to be fought for, to be comforted, to be recognized and given every shot for a positive quality of life, no matter their prognosis.
Two weeks and one day …
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