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.

What do I say now?  I’m sitting here watching the cursor flash waiting for something to be typed.

I’m at a loss for words.

I’m in the living room right now.  Sitting in the same place I have sat for dozens and dozens of nights, just 10 feet away from the bed that Hannah would sleep in while I would be doing my night nursing.   The house is silent, dark while the kids and Daddy still sleep.   My body doesn’t quite know what to do sleep wise yet.

The room is completely quiet.  There is no trach humidifier going, no oxygen pumping.   It just feels so surreal not having the TV or lights on in this room ~ They have been on nonstop for months.   I miss the sounds of Hannah breathing while I sit here.

Just too quiet.

A lot of friends and family have asked me, “how are you holding up?”   The honest response to that answer would really vary from one hour to the next.  I’ve had moments of completely emotional breakdown, periods of numbness as if everything is okay.  A lot of feelings of guilt, most after the periods of numbness.   I am much better at remaining composed when I’m around Ethan and Abby and others than I am when I am by myself.

I’m not going to share much about the details of Hannah’s passing.  Those hours are something that I need to keep safe in my heart and in the heart of those that were here that night.  It was a very, very difficult and emotionally exhausting experience.

I am so thankful that I was the one holding her when she took her lasts breaths.  Even though I had made comments during the weeks prior that I just wanted someone who cared about her to be holding her when it happened, it would have killed me if it was anyone else or if she was sleeping alone when it happened. I had to say that because we still had to live our lives because of our other two kids.

But during the last 4 days or so, I rarely left the house.  I forced myself to run errands with Abby that Friday afternoon just get time to clear my head.  But after we got back, I didn’t leave the house for anything.  Ethan and Abby had their last games of the season on Saturday, and I just couldn’t leave.  I didn’t want to be away from Hannah just in case.

But Hannah was cuddled tight in my arms when she finally let go, with my fingers running through her hair, caressing her fingers and face.  It is where I needed her to be.  I selfishly wanted to be the last person she felt when she let go.

I will forever be grateful for her giving me that one last gift.