8-month-old baby Bertrand ~ Extreme cuteness may also be a symptom.

Bertrand is a little boy, near and dear to my heart – so much so that his mom and I arranged he and Hannah’s marriage at our visit to the NIH.  Please, if you know anyone that can help or fits this description, contact Cristina.

REPOST FROM BERTRAND’S BLOG
http://overcomingmovementdisorder.blogspot.com

Since the identification of Bertrand’s NGLY1 mutations, researchers are hoping to find/test previously undiagnosed children for the same condition.

A potential N-glycanase enzyme treatment has been identified.

I need help finding undiagnosed kids fitting this profile. Matching kids may be eligible to receive a test for this newly discovered genetic (NGLY1) disorder.

The salient features are:

• Developmental delays
• Involuntary movements starting in infancy
• Liver dysfunction detected in infancy- elevated transminases and AFP, all normalized at this time
• Myoclonic seizures starting in infancy
• Lack of tears

Thanks for any help you can provide!

Abby's flower for Hannah's Garden

I have been a grief funk for days now.

It started back on May 3rd, knowing that it was coming up on five months since Hannah passed away.  Five months.

It…has…not…become…any…easier…

Seriously, it hasn’t.   We have become more used to this new lifestyle that does not include Hannah’s physical presence with us, but there is an obvious void in our house without her here.  We talk about her all the time, especially Abby and I.

But now with Mother’s Day coming up…what I would give to just be able to avoid this day altogether.    There is no celebration in my heart.

I couldn’t protect Hannah.  I couldn’t protect Ethan and Abby.  Even though my head knows I did all I could, my heart feels so defeated.

It isn’t fair to Abby and Ethan.  Abby is so proud that Mother’s Day is coming up.  She is using her own money to buy flowers from the school fundraiser so we can plant it in “Hannah’s Garden.”

Since Hannah passed, I have wanted to put a memorial garden in our backyard that I can see from my office window.   But I have yet to do it for whatever reason.    Abby has wanted to add a rock garden to it where our family and friends can paint rocks reminding them of Hannah, and we can have them all together.  Last weekend, my in-laws bought us a bougainvillea tree to be a highlight in Hannah’s garden.

I feel horrible for wanting this holiday to just disappear.  It really just reminds me that one of my children is no longer here with me.   I feel like an incomplete and heartbroken mother, and that isn’t something I want to celebrate.

So this weekend, on Mother’s Day, we are finally going to start putting together Hannah’s garden.   I’m so thankful that my mother-in-law and sister-in-law are so willing to “celebrate” this day by being with us as we do it.

Abby snuck $5 of her allowance money in her backpack for school today.   She wants to buy five more plants for me for Hannah’s garden.

I just got to get through this weekend…

Stealing Halloween candy wrappers, 2010 ~ "This works for me!"

I have met some incredible people over the past month or two who have shared their experiences with building a nonprofit here in Las Vegas.  Organizations such as Make a Wish, Cure 4 the Kids, Nathan Adelson Pediatric Hospice, etc., have all opened their arms and have agreed to work with us as partners in mission.  To have this kind of support, so early after our formation, is overwhelmingly positive.

But it doesn’t just stop with those organizations, but other people who we have reached out to have enthusiastically offered their support of Little Miss Hannah by way of hosting events for us, helping reach out to others to help spread our mission, and some incredibly exciting celebrity connections.

It has been so cathartic for me, so uplifting to be able to talk about Hannah, talk about Ethan and Abby, and share why our mission is so important to me.  And to see it responded to SO positively – not just a “oh, okay, that’s nice” but with such genuine acceptance is…it just is amazing.

Yesterday, I found myself needing to visit Hannah at the cemetery.  I still go at least once or twice a week, but yesterday I just HAD to go be with her.  I find that when so much good is going on with LMHF, by talking about her and LMHF so often, that it takes away from my “Me and Hannah” memories and moments.

I still need my “Me and Hannah” moments.  Even though I can’t get them physically, just being able to go to the cemetery and sit there alone with her helps bring things into focus, being able to just let go and cry and tell her how much I miss her, tell her what people are doing to help us spread her story.

My focus on LMHF has to remain on MY Hannah.  With so much excitement and with the foundation coming together as quickly as it is, my heart needs to keep being able to have my “me and Hannah” time.

Butterfly that landed near us after the release

Today was the 9th annual butterfly release that Nathan Adelson Hospice, Hannah’s hospice group, puts together.   We were invited because a butterfly in Hannah’s name was purchased for this event by her social worker and lead nurse.   It touched us so much that they cared about her so much that they wanted her included in this event.

I have to admit that I have never been to a butterfly release before – for weddings, memorials…nothing.  I had an idea of what to expect, but I didn’t realize how beautiful it really was.

Abby (in purple) and Ethan (back to us, wearing blue) - front and center!

There were a few heartwarming speeches before the release.  Then one of the chaplains for Nathan Adelson brought all the children to the front, had them sit down, and shared a children’s blessing and shared the importance of the butterfly release.

Leave it to Ethan and Abby to be right there in front! (see video of release!)

One the chaplain gave the word to release the butterflies, hundreds of butterflies flew into the air!   I loved seeing Ethan and Abby’s reaction to all the butterflies giving flight into the wind!

After most of the butterflies were released, Daddy and I released the one we had for Hannah.   It was nice having a moment with all of us together with our Nathan Adelson social worker.

Seeing all those butterflies today, all in memory of people who have passed, was just so touching.  I loved that Hannah was flying there, among the others, spreading her wings and flying free.

Our keepsake - filled with seeds

Hannah's name in the program

I keep questioning whether we belong at these type of events now that Hannah is gone.  I mean, Hannah is technically no longer a patient or is she considered forever a patient?  I don’t know what the “etiquette” is on this.

Am I even considered a “special needs” mom anymore?

I left it up to the kids if they wanted to go to the event.  It was a resounding yes, so we went.  It was hosted by Circus Couture, and Abby and Ethan were front and center next to Dawn Marie, the enthusiastic and fun book reader.

Reading "The Giving Tree" to Hannah

After the event, we headed home.  About halfway home, Ethan asked if we could go visit Hannah.  It was a strange request coming from him because 1] he has never initiated and asked to go to the cemetery, and 2] he was so adamant about going.  ”Please, we have to go!”   Of course, Abby joined in pleading us to go as well.  Daddy and I looked at each other, not understanding why they were both begging us to go.

We get to the cemetery right before sunset (closing time), and the kids sat down on either side of Hannah’s grave.  They took turns reading the book to her.   (They had never read a book to her at the cemetery before).

That was their plan.  They worked it out in the car together.  My two kids, who spend most of their waking time annoying the heck out of each other, came together to do this … on their own.

After they finished reading Hannah the story, I asked Ethan casually why it was so important to him that they read the book to her.  He said, “Because it was her doctor’s office, and she should have been there.  Since she couldn’t, I wanted to make sure she heard the story because she really would have liked to have been there and heard it.”

The Giving Tree by Shel Silverstein.  It gave me something very, very special tonight.

We are in the process of creating an online store to be able to offer LMHF Polo shirts and T-shirts in the fall.   Until then, our LMHF Polo shirt distributor has given us the opportunity to do a batch of black and pink LMHF shirts.

If you would like a polo shirt embroidered with the LMHF logo, please place your order by May 4th, 2012.   Adult sizes are $20 each, kids sizes are $17.50 each plus USPS shipping. They will be shipped out mid May.

Men’s Black Polo Shirt

Adult S Adult M Adult L Adult XL Adult XXL Adult XXXL

Ladies Pink Polo Shirt

Adult S Adult M Adult L Adult XL Adult XXL Adult XXXL

Kids Polo Shirt

Black – Youth M Black – Youth L Pink – Youth M Pink – Youth L

Men’s Black Polo shirt with embroidered LMHF logo

Ladies Pink Polo shirt with embroidered LMHF logo

This was the only personalized DVD they had hanging on a display

Before Hannah passed away, I was very skeptical about the world of spirits and interpreting coincidences as “signs.”   But since then, I find myself questioning my skepticism.

There are various signs that I see that make me think that just maybe Hannah’s spirit is truly around me.  The entrails from the fighter planes, the little purple colored hummingbirds that hang out in our backyard that I had never seen before, etc.  Just here and there, but nothing really stood out to me and said “Whoa!”

Until this past Saturday night.  Ethan was at his grandparents that night to spend boy-time with his cousin, so we decided to have a very Abby-centric day.  Just me, Daddy, and Abby.   I coached her volleyball game earlier that day, and then she and Daddy had gone to the movies.  We wanted to do something fun and difference so we decided to go down to the Vegas strip to the Fashion Show Mall and walk around.  You know, play tourist – this mall is HUGE!

She loved it because she was able to spend her birthday money at the Hello Kitty store, and got to walk down the fashion runway and pretend to be a model  (there was no show on, just the walkway was out).

The three of us went to California Pizza Kitchen for dinner.  While there, Daddy posted a check-in on Facebook that he was there for dinner “with his girls.”  Usually, he would say me and Abby specifically, but not this time.  Didn’t think anything of it.   We did end up talking about Hannah a lot during that dinner because Abby kept bringing her up in a lot of conversations.

After dinner, we walked about 200 feet and saw a vendor along the glass balcony.  All three of us stopped in our tracks.  It was a booth that sold personalized gift items.  Most of them were facing the other way towards where the most people are, but the closest one to us faced directly to us.

The name on the CD was “Hannah.”   It was a Mickey and Minnie Disney personalized Disney song CD.

Oh-my-friggin’-you-know-what!   We all just freaked out, and Daddy took this picture.  Looking more closely at the booth, there were no other Disney CD examples.  Just that one – with Hannah’s name on it, spelled our way!

Then, to top it off, Abby wanted Jamba Juice for dessert.  Weird request, all the way at the other side of the mall.  But it was Abby’s night, so we were off for Jamba juice.  We get there, and Abby immediately recognizes a bag of white cheddar Pirate’s Booty – this was Hannah’s favorite snack, favorite flavor even, when she was eating by hand!   Abby wanted a picture with her and the bag.

This one was really hard to believe it was all coincidence.

They share their stories, how they are feeling, how they deal with grief…it is very sobering and honest.  There are those that have a feeling of desperation, not wanting to live anymore even though they have other children, almost like a deep depression sometimes years after their child’s passing.

Then I think that there must be something wrong with me.   Why have I never felt such grief that I felt that I couldn’t continue to live life?  I mean, I never once felt that life wasn’t worth living anymore, even though Hannah was no longer here.

I have felt lost (still do), not sure what to do with myself.   I have been so sad that I would spend a few hours in bed just crying and just missing her like crazy, just like I did yesterday when I heard the new Danny Gokey song.  I still question if there was something different I should have done that maybe could have given us more time with her.   I still get moments of a crushing feeling in my chest because my heart hurts so much.

But I never fallen that deep where I would rather just not be, you know?   I don’t know why this bothers me, why it has me questioning my feelings now.  SHOULD I feel that depressed that I should sometimes feel this way?  Am I subconsciously hiding my grief somehow and now realizing it?

Or perhaps our situation with Hannah was so unique from most moms who lost children in that we knew what was going to happen.  We knew that we were going to lose her, especially once we made the decision to bring her home with hospice care.  We were able to prepare ourselves, as much as we could anyway, that this was our inevitability.   We were able to love on Hannah unconditionally, every moment, until that last breath she took in my arms that night.  We were able to say “goodbye” to her, and she was surrounded by so many people that loved her when she passed.

I can’t imagine how I would feel if her passing was in a different situation – in a hospital, en route in ambulance, while I was asleep and she was being cared for by her nurse who loved her…

Maybe that is the difference.  We were able to say “goodbye” to her when she was still here, and she was loved, cuddled, and kissed until her body finally gave up fighting.

Or maybe my heart (or my head) is just not letting me feel that much pain.  Does this mean that sometime down the line I’m going to get hit really hard?

Ugh…

Abigail and Hannah - Sisters Forever

We are putting together our Abigail’s Angels program, and we need your help! This program is designed to give the brothers and sisters of a child affected with a rare life-limiting disease some extra attention, emotional support, and help the parents while they juggle the special needs of their ill child and trying to keep an active lifestyle for their healthy children.

If you have a child with a rare life-limiting disease who have brothers and sisters under 18 years of age living at home, we would love to talk to you to see what type of programs you would like to see! We also want to speak to those families who have a children living at home with hospice or palliative care who have siblings at home with them.

We appreciate your help! Please send us an email, and we will send you the survey.

You can learn more about our mission at http://littlemisshannah.org/our-mission

I came across this quote on facebook a couple of days ago.   I read it, and it so clearly expresses how I feel.  I LOVE hearing Hannah’s name.  I LOVE when people say things like “Oh, Hannah would have loved this” or “Remember when Hannah would ….”

We had an Easter picnic with family today at the park.  It was an absolutely gorgeous day, and it was fun getting Ethan and Abby together there with their cousins.

My in-laws had all the eggs ready to be found including special eggs with each of the kids’ names on them.   Just a little something specifically for them that the Easter Bunny brought.  Most of the other eggs are filled with treats and toys.

When the kids were out searching out eggs, I heard Abby say “Oh, there is an egg here for Hannah!”  She was so excited!  When we opened it up, it was a cute little Minnie Mouse.

I LOVE that my in-laws still include Hannah in all the holidays.  Christmas, Valentine’s Day, and now Easter…Hannah always had something special there and has always been included even though she is no longer with us.  It really means so much to me that she is still an active part of their thoughts.  I know they loved her tremendously.  No doubt about that.   I just appreciate them so much for loving Hannah so much to keep her spirit alive in all the family holidays.

After the picnic, we went to the cemetery to give Hannah her new Minnie Mouse.  We also found two dyed Easter Eggs that I have no clue where they came from, but I LOVE the fact someone thought about her enough to bring her two eggs.

It just really grabs my heart when I see someone want to remember Hannah.  Some people in my life feel that we should just “move on” and “start a new chapter,” and what they don’t realize is that there is no new chapter that will not include Hannah.

Hannah may not be with us physically anymore, but the amount of my heart that she has captured is immense.   My biggest fear has always been that people will forget about her or choose not to recognize that I have two daughters, three children.

When I see others want to include her even though she has passed, it just means so, so, so much.