Holiday Gifts

Ugh, last year I loved Black Friday shopping.  Granted, I did all of it from the comfort of my jammies and computer, but I was counting down the minutes until the sales started and even had my lists ready to go.  I must have done about 75% of all my shopping that night.

Just a day ago, Black Friday started online at some of my favorite stores.  I had no lists this time.  I had an idea of what to get the kids — well, Abby and Ethan…bought them a few things in between taking care of Hannah, getting her meds, moving her body so she doesn’t get tight, making sure her oxygen and humidification stays on her.  Definitely a different experience than last year.

And that is the hard part.  What do we do about gifts for Hannah this holiday?   Daddy and I have talked and talked and talked about it so much.   You see, my kids are incredibly spoiled — they get Hanukkah AND Santa gifts (and yes, Ethan and Abby both still believe in Santa).

Hanukkah is easier to deal with.  We already explained to the kids that we are just going to get Hannah one special gift instead of the 8 little ones since she can’t really enjoy toys or her iPad anymore.  They understood why.

Santa.  That is a different story.  It stresses me out to think how to deal with the Santa situation.  What does Santa do for kids like Hannah?  He wouldn’t ignore them or forget them…

I asked Abby this question yesterday.   We were talking about Santa, and I was cuddling with Hannah on the couch, and Abby came up to give her kisses.   I didn’t ask it in a serious way, I just asked her matter-of-factly… “What do you think Santa does for kids like Hannah?”   She thought about it for a minute, and she came up with a perfect answer.

She said that because Hannah can’t play with toys anymore, he will probably get her a stuffed animal with a big heart that says ‘love you’ with a special note attached to it.

My heart melted…and then felt crushed.  So many, many different emotions from Abby’s response – so proud of her for really understanding the situation, then so sad because she does understand the situation.

Then I kept thinking … is Hannah even going to make it through the holidays this year?   We thought we were only going to have days with her when we started with hospice…6 weeks ago.

Six long weeks ago.  We have been living like this, this uncertainty, this exhaustion, this sadness, this continuous apprehensive grieving, this just overwhelming situation…six weeks.  Wondering every day if she will be here tomorrow.

Wondering if it is safe to buy her something for the holidays because that is still a long 4 weeks a way.  Four weeks doesn’t seem like a long time, but in this situation, it seems like a lifetime.

I did buy one present for Hannah last night.   It was this cute little personalized rag doll that will be embroidered with Hannah’s name on it.  Daddy and I feel like Santa would get Hannah a lot of personalized and keepsake items — things that we would be able to keep to remind us of her all the time, whether it is Disney, ladybugs, monkeys, music, poems about how special she is, pictures, etc.

Whether or not Hannah is still with us on Christmas Day, this little rag doll with get a lot of loving.  I can just picture this little doll ending up on Abby’s bed every night, making its home with the other beloved stuffed animals and dolls she has.

That is the best gift I can give Hannah.  I hope it comes soon.  I would love to take a picture of Hannah with this doll.

At least I have a direction now to shop for Hannah.  I’m going to stop for things that will remind me of her for the rest of my life.  I just found a cute little Minnie ornament from Disney Store that I just ordered a few minutes ago that I will likely personalize myself when it comes.

Hannah’s Legacy

Hannah, 27 monthsHannah is sleeping peacefully right now.  The combination of Valium-Methadone-Klonopin-Baclofen-Tegretol and chloral hydrate when needed is starting to work to keep her comfortable.  We are down to using the chloral just a few times a day now instead of every 4 hours on the dot.   We may need to up her valium a bit because it is wearing off before the 6 hours are up, but at least that is something that is doable.

I love the way her face looks when she is sleeping.  So sweet, so angelic.  During the night, I spend hours just laying next to her caressing her face and body, combing my fingers through her gorgeous hair.

I think of just how amazing she is and how much beauty and happiness she has brought into my life.   How much she has opened my eyes to some wonderful feelings, insights into life, and how many thousands of times she has warmed my heart and made me smile.

She is the missing piece I didn’t realize I needed to complete our family and makes me understand what pure love is.

One of my biggest fears has always been that, in time, Hannah will be forgotten.   I know that Daddy, Ethan, Abby, and I will never forget her, but that others in our lives will.  Family  members you don’t see that often, friends you chat with every once in a great while…those that really never got to know Hannah personally.  I don’t want them ever to forget her and how important my little daughter is to me and our family.

I think because of Hannah, I have found what I want to do with the rest of my life.  She has thrown me into this world of rare disease, advocating families, special needs, etc.   Through all of this, I know what I am meant to do.

So these past few weeks, Daddy and I have started to put together the paperwork for our Little Miss Hannah Foundation.  Yes, we are finally going to do it (many of you know we have been talking about it for almost two years).   I have been working on our mission and our general focus which, in summary, is working with directly with families affected by childhood life-limiting rare diseases by providing one-on-one support and guidance, local support groups, as well as a strong emphasis on sibling support and attention services (of which are horribly lacking).

We are so fortunately that Dr. Bernstein’s office manager (who was instrumental in putting together an amazing World Rare Disease Day event in their office this year) is willing to help guide us with the paperwork so we can get our 501c3 nonprofit status.   I have also had the support of some wonderful and talented friends who have offered to help as well.

This also works with my personal plan so when I finish my Masters in Professional Counseling that I could focus on using my experiences towards being a medical family therapist here in town.   When I started my masters earlier this year, I didn’t know what exactly I wanted to do with the degree (which at the time was the generic healthcare administration), but I know I wanted to stay in the medical world.

But this recent turn of events this month really opened my eyes as to what I want…what I need to be doing with my life, and this has given Daddy and I something to focus on these past months instead of just wallowing in our sadness.

I want the world to know that I have a beautiful little girl named Hannah.  She is an amazing fighter, a charming and sweet soul, and she means more than the world to me.  I want the world to know how special she is…I would scream it from the rooftops if I could.

I don’t want her ever to be forgotten…not for a second.   With this legacy we are creating for her, I hope she never will…and that her sweet face will be forever in the minds of our family and friends today and those families we meet in the future.

Hannah deserves it.

Continuing to Advocate

My sleeping beauty on KSNV's 5 pm newscast tonight - our local NBC Channel 3 station

We were given an opportunity a couple of days ago to share Hannah’s story with our local NBC news station and why it is so dang important that there is more research into rare diseases like Gaucher’s disease.   Even though I wasn’t in a good mental place to be interviewed, I knew it was important that I show the world why Hannah deserves to be fought for, every day and minute of her life.

The piece aired yesterday, Thanksgiving, on their 5 pm broadcast.  I will admit, I found it weird seeing myself as the news teaser earlier in the day.  We were sitting watching Judge Judy (knowing the news would be on soon), and there I popped up during the commercials.  Just a weird feeling.

It was a really good piece, I think.  Denise Rosch, the reporter, really hit on many of the key points we talked about.  They also interviewed Hannah’s Cerezyme nurse, whom we love, for the piece as well.  My only disappointment was that they didn’t mention the foundation that we are going to be starting up.   But overall, this was definitely a piece that showed why Hannah deserved to be fought for and why other children, like Hannah, deserve a fighting chance as well.

The news clip hasn’t been put on their website yet, but they do have us listed as one of their useful links.   Hopefully they will get it on today so we can post it.  Otherwise, we will just take a home video of the TV so we can share it with all of you.


Giving Thanks

Made it through another holiday.

And yes, that is exactly how I feel right now.  It is almost like we can cross that page off the calendar and take a breath.

We had a delicious dinner with family here at our house.  I loved having Ethan, Abby, and their cousins all running around the living room where Hannah was because she was right in the middle of all the action.  My younger nieces, younger than Hannah, smothered Hannah with kisses quite a bit through the night.  Some of the grown ups, like me, even ate in the living room so Hannah was never left alone.

To have her on this holiday with us… I am very thankful.

Waiting for “Something”

Me and Hannah - Christmas 2010

I have heard from quite a few friends over the past few weeks that I need to take better care of myself.

Truth is, I don’t do a very good job of it, especially now.   I’m completely exhausted… physically, but mostly emotionally.

When Daddy and I switch at 5 am, I usually take my melatonin and go to sleep until the kids get home from school.   For the past two days, even though my body is completely exhausted, I just can’t fall asleep.   Today, I didn’t fall asleep until 9:30 am even though I just laid in bed those 4+ hours.

And no, I’m not going to take sleeping pills because I want to be able to be present if something were to happen.

That is how our life is now.  Waiting for “something” to happen.  Waiting for our next stage of hell to begin.  Not wanting it to happen, but in a way, I want her to be at peace already and not in a drugged up state 24 hours a day.

I always fought for the best quality of life for her, and now she is very little quality of life.  I have worked so hard over the past three years to achieve something only to fail at the time when it counts the most.  I know, I know – my friends are going to say I didn’t fail.   But my heart feels differently at this point.

I don’t know how to take care of myself these days.  I mean, I do the basic stuff, but I can’t remember when I had some ‘me’ focus.

For the past 3-1/2 years, it has been me and Hannah every single day – whether it was playing at home, taking her to doc and therapy appointments, or the hundreds of hours of research and communication with specialists.  But the thing is, I didn’t mind doing it at all.  I absolutely love my baby girl, and giving her the best quality of life and fight for survival was incredibly worth every second.   It all came down to that smile – that sweet, charming, little smile that she gave me so many, many times a day – pure love.

I have become even more obsessed with Hannah’s condition now that we are so close to losing her as well as dealing with Abby and Ethan (which is a major handful these days too and emotionally exhausting) that I’ve just fallen by the wayside.  What is worse is that I know that I am doing it.

I feel like crap.  I am at my highest weight ever, which as a big mama anyway is hard to admit.  If it wasn’t for the graciousness of friends or in-laws getting and making us dinner for the past couple of weeks, we would still be eating fast food because I just have no energy or desire to cook.   My home is not at its neatest because it just isn’t a priority right now (although by no means does it look like we should be on the TV show Hoarders).

I keep thinking how different life would be once this “something” happens.  But then major, major guilt kicks in for me even thinking like this.

Truth is, I would rather go through this hell and get my few hours a day of cuddle time with Hannah, even if she is asleep 24/7, than have my life easier and figure out who I am.   I don’t want this “something” to happen any time soon, but I know I can’t keep going like this either because I can’t afford to end up in the hospital again for exhaustion like I did just a few months ago.

I just don’t know what to think anymore…


Hannah’s Plan

Hannah, sleeping in her chair (which we let her do multiple times a day just to keep her body moving) with our dog, Kenny, keeping an eye on her

Hannah’s breathing is more shallow tonight.   Her respirations are much quicker, and it is almost as if she is only taking quick little in-out breaths now.  We can barely see her chest move up and down when I am a few feet away.

Yet, what is really strange, her oxygenation is in the low 90s (where it had been in the mid 70s and low 80s when we last checked a week or so ago), and her heart rate is around 80.   We don’t check her O2 sats or pulse rate much anymore, what is the point?   But we had to do it three or four times tonight because we were shocked with the results.  Very weird…no explanation for it.

When Daddy and I talk about the inevitability, we always seem to refer to it as Hannah’s plan.  We wish we knew what kind of timing we are dealing with — days, weeks?   So we say, “I wish we knew what Hannah’s plan is.”   After all, she is the one who knows best at this point.

Her meds combination seem to be working better to keep her sedated, and when she does wake up, the agitation is not anywhere near as violent or distressing as it was a few weeks ago.  Maybe because her body is more at peace now with less waking up (and in turn, less agitation)?

At our hospice team’s suggestion, we cut back on her free water.  Her body (especially her face) was becoming quite swollen since she is retaining a lot of the water, so we are just going to rely on the water in her formula along with the water flushes with her meds (which is still quite a bit since she gets meds every 2 to 4 hours plus what we used for her twice a day miralax).   But no more free water – we used to do 8 to 10 ounces a day at one point.  I think we are down to maybe 3 to 4 ounces a day now not including formula.

Right now, she is lying on her bed facing me.  She doesn’t look sick, for which I am so grateful.   Her color is good.  She just looks like she is peacefully sleeping.  You would never realize how ill she is right now if you didn’t know what was going on.

But we do know what is going on.  We are just waiting to see what Hannah’s plan is.