Archives for December 2011

Hannah is now laid to rest.

Her service yesterday was beautiful, heartbreaking, and just filled with overwhelming emotion.  Big bouquet of pink and yellow balloons with a big Minnie and Mickey Mouse were on either side of her as well as a bright and colorful huge bouquet of flowers.   The entire chapel was packed with family, friends, and even people we didn’t know.

Hannah was front and center under a beautiful quilt that was handmade for her with everything she loved the most – Minnie mouse, ladybugs, monkeys, music, giraffes… yet, it was still so hard to believe that she was in there.   The casket was just so little.  When we had our private family time at the beginning, it was all I could do not to scoop her up and take her out of there.  All that stood between me and her was just a few inches of wood, that was all.

The rabbi did a wonderful job, infusing a little bit of religion in with a lot of introspection about Hannah’s life journey.  The cantor, who was absolutely amazing, sang some of Hannah’s favorite songs including Hevenu Shalom Aleichem, Twinkle Twinkle Little Star, You Lift Me Up, and the last song I sang to Hannah before she passed, You Are My Sunshine.  Both my good friend and Hannah’s last nurse gave heartwarming emotional tributes.

Then I gave my tribute.  I was blubbering through the whole thing, but I was able to get through it thanks to having Abigail by my side at the podium.

At the end of that part of the service, they showed the video montage of Hannah that we had created.  Even though it was 7 minutes long, to me it wasn’t long enough.  I wanted to see more and more pictures of my baby girl’s beautiful smile.

It was then time to take the long walk from the chapel to Hannah’s final home in the Children’s Garden in the cemetery.   We all followed behind Hannah who was in a bright white hearse.  The pallbearers, who were made up of Hannah’s grandfathers, her uncle Keith, and three very special friends, helped bring Hannah to her area.

As Hannah was lying there in front of me, lifted up above the hole in ground where she would be laid to rest, I couldn’t help but look around this part of the cemetery.  All of these kids, these other fighters like her.   Some a day old, some a few years old.  All with stories likely similar to Hannah, a beautiful life taken away too soon.

Then it came time for the balloon release, which if I had to choose a favorite part (which sounds weird), this was it.  Ethan and Abigail cut the balloons (which were brought out from the chapel), each bouquet with 15 pink and yellow balloons with either a huge Minnie or a huge Mickey balloon.  It was Ethan and Abigail who let the balloons go into the sky and everyone in attendance watch them fly up to Hannah.

It was perfect…I kept picturing my little girl seeing all of these balloons, her favorite colors and characters, coming towards her with love, sent from her brother and sister.   There were streaks of white in the sky, and I knew this had to be a sign that Hannah was there just waiting for them.

Then the hardest part of the service.  They lowered Hannah into the ground, and as is in Jewish tradition, everyone who was there took a shovel of dirt and sprinkled Hannah’s basket.  It is a way for everyone who loved her to help prepare her final resting place for her.  Even our funeral directors, who were so touched by Hannah’s life and story, joined in.

And then it was over.

Everybody left, hopefully holding a piece of Hannah in their hearts forever.

In just thirteen hours, I will be in the same room as my little girl.

Tomorrow is Hannah’s funeral service.   Her “Celebration of Life” service.   All the preparations are ready, well most of them.  The video that was created is done, the photos and memory cards were turned in on Friday.   I have carefully chosen the speakers to give tribute to Hannah and the pallbearers who will walk with Hannah from the chapel to the graveside.

The last thing I need to do is to do MY tribute to Hannah.   I have sat down a number of times to do over the past few days, but I get no farther than the first line.  I know I have to do it.  I mean, I WANT to do it, I just have a hard time writing it down.  Part of me wants to just ‘wing it,’ but I also know that it is going to be such a rough day that I may not be able to get my thoughts out on what I really want to say.

Tonight I had some good friends over.  Just a few of us.  There was pizza, some wine, and sitting around the fire pit making smores.   It was a very relaxing and fun evening.  I was able to be completely myself – laughing hysterically at some points, crying at others.  We all knew that tomorrow is going to be a really rough day, so it was good to be able to allow myself the chance to just ‘be’ for a few hours without having to keep any of my emotions in check.

Thirteen hours until …

I look at the date, and it has been only 4 days since we lost our baby girl.  Why does it seem so much longer?!  I miss her so much.

We have starting cleaning out and throwing away things.

It was so important for me to get rid of all the medical equipment because, to me, that was the one memory that I didn’t need to keep.  All of that equipment, which ended up filling 10 feet of hallway space when piled together, reminded me of how Gaucher Disease destroyed my baby girl and took her away from me.

All the meds are gone and dumped.  The bed that was in the living room is now moved out.  The pounds of equipment like the oxygen, suction, humidifier, nebulizer, and smart vest have been picked up by the med equipment company.  The syringes, extra traches, g-tube formula and supplies…the entire hallway closet filled with medical supplies is now gone.   We donated all of it to our hospice for their use, and what they can’t use will be donated to Doctors without Borders.

It was a huge weight off my chest when the last of the equipment left the house.  I couldn’t get it out of here soon enough, really.

But then the rest of the cleanup started.  I still have the toys and clothes let to go through, and I just am not ready to do that.

Daddy and I realized that Hannah really didn’t have much.   After all the medical stuff was gone, all that was left was a few dozen toys and stuffed animals.    Once we moved to Vegas after her hospitalization last summer, she never had her own room again since she stayed in our room so I could take care of her at night.   We have a few keepsakes here and there, but there really isn’t much.

It wasn’t until after all the medical stuff was out of here that it really hit me how medically involved her life was.

I am so thankful for the thousands of pictures and dozens of videos we took during the time she was with us.   But even those aren’t enough to fill the emptiness I feel right now not being able to hold her, cuddle her, and run my fingers through her hair.

I miss you baby girl.

Hannah’s service is just 4 days away.  Seems like it is so far away, but it has given us time to get everything ready.

We met with the funeral director yesterday to go over the final arrangements, choosing flowers and balloons (for the balloon release graveside), verifying our arrangement decisions, deciding on the poem for the memory program.  The hardest part was “reconfirming” our choice of our final resting place for Hannah.  The kids were with us during this long process, and even though it was hard on them to see where she was going to be laid to rest, it was also good because when it comes time for the service, they will already know what is going to happen.

We took the kids to the mall today to get their outfits for the service.  Ethan and Daddy have their Mickey Mouse ties already, so we just got Ethan a nice button-down red shirt and slacks.  He also was excited because he got a nice new pair of dress shoes to go with it!

Abby really wanted to wear something Minnie Mouse, but she only had T-shirts, so we went to the Disney Store last night to find a cute Minnie type of dress.  But they didn’t have anything that would work, so today she ended up with this cute “blingy” pink dress with scattered sequins with white tights and her first pair of black pumps.   She looks so dang adorable!    To make her outfit more Minnie, she is going to wear some of her pins from Disney World.

Daddy already had his slacks and blazer picked out, and I found an outfit tonight.  I broke my “no black” rule because I ended up getting a black skirt to go with this blingy pink blouse (that matches Abby’s dress).  Tomorrow I will go get shoes to match as well.

I realized that we really don’t have a lot of ‘nice’ clothes anymore, everything we own is casual!   So it was a nice treat to be able to get everyone (except Daddy) something a bit dressy and new to wear since Sunday is such a special, special occasion.

We also have the picture framed and ready that we are going to use for the service, picked up the Mickey and Minnie mylars they are going to use to in the chapel, and I’m almost done getting the memory cards ready.

We also hired someone to do the memorium video for the service.  I tried to do it.  It was just too hard.  Eventually I will want to do a real video tribute, but I want to do it at a time when everything is not so fresh and there is not a time crunch.   I saw the rough draft of it tonight, and the guy creating it really is doing a good job.  But I have to admit that watching the rough drafts (all 4 times for different changes) was so incredibly hard.

We have a meeting with the Rabbi tomorrow afternoon to go over the service, and then we have our final wrap-up meeting with the funeral director on Friday morning when we have to turn everything over that we want to use for the service.

I did better today when we kept doing things, running errands, etc.  It is times like now, when I stop, that everything just hits me.    I just want to crawl under the covers and cry because I think about what the meaning of Sunday’s service is for … to bury my little girl.

I keep saying it is a “celebration,” and we are treating the service as a celebration.   But like how a rose by any other name is still a rose, Sunday is the funeral for my Hannah.   No upbeat words really are going to change that.

In my daughter’s eyes,
I am a hero,
I am strong and wise,
And I know no fear,
But the truth is plain to see,
She was sent to rescue me,
I see who I want to be,
In my daughter’s eyes

In my daughter’s eyes,
Everyone is equal,
Darkness turns to light,
And the world is at peace,
This miracle god gave to me,
Gives me strength when I am weak,
I find reason to believe,
In my daughter’s eyes

And when she wraps her hand around my finger,
How it puts a smile in my heart,
Everything becomes a little clearer,
I realize what life is all about,
It’s hanging on when your heart is had enough,
It’s giving more when you feel like giving up,
I’ve seen the light,
It’s in my daughter’s eyes

Hannah Ostrea, born July 25, 2008, passed away peacefully on December 4, 2011, surrounded by her family following a lifelong battle against Neuronopathic Gaucher’s Disease. In our hearts, she is now free from the prison of this disease and is able to run, play, and be able to dance to her favorite song, Ice, Ice, Baby (Glee version!).

She lived for only three short years, yet her beautiful smile, intoxicating charm, and her courageous fighting spirit forever captured the hearts of everyone who had the opportunity to get to know her. Even though she was never able to speak a word, her expressions, her laughs, and her eyes were able to speak volumes.

A celebration of Hannah’s life will be held at the King David Chapel (inside Palm Eastern Cemetery) on December 11th at 12:30 pm. It is open to all who loved her, help care for her, and who have had their lives touched by our Little Miss Hannah.

** We ask that those who join us wear pink, yellow, (her favorites) or other vibrant and bright colors and refrain from black attire. Because of her love of Minnie Mouse, we also encourage Disney attire and accessories. **

In lieu of flowers, please consider a donation to:
Hannah Ostrea Fund
c/o Wells Fargo Bank, Acct #2196312850
640 South Green Valley Parkway
Henderson, NV 89052

These funds will be used towards the creation and development of Hannah’s legacy, the Little Miss Hannah Foundation.