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.

 

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.

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 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.

I was talking to a friend last night about everything that was going on, and he made the comment that I sounded pretty together on the phone.   Being that I hadn’t spoken to him for a few months, I took that to mean he was surprised I wasn’t crying on the phone or being really sad.

Reality is, there is only so much crying one can do, you know?   We are living with this situation 24/7, literally.  That first week, it was chaos, emotional hell, and we thought we only had days left with her.  As horrible as it is to say, it is weeks later now, and you become almost immune to the minute-to-minute happenings with Hannah, especially since she is sleeping 23 hours a day.   Even Ethan and Abby have gotten used to the situation with discussion of Hannah’s changes in condition, her meds, her O2 and humidifier running, and having a nurse here almost 70 hours a week.

Daddy and I are just completely emotionally and physically exhausted at this point.   We are just waiting on every breath Hannah makes to make sure there is a next breath, and we are scared for our hell to begin when she doesn’t take that next breath.

I don’t talk on the phone to people much these days.  Thank goodness for my blog, Facebook, email, and texts so I can keep everyone updated.  I don’t have it in me to talk to those whom I know are going to break down crying.  I don’t know how to comfort other people right now without losing it myself.   I really only text and talk on the phone or in person to those who I know can be strong enough to have the conversations.

Hannah’s bed in the living room which is where the kids, Daddy, and I watch TV, have dinner, and basically live our lives.  She is front and center, and it gives us a lot of opportunity to talk to her, shower kisses on her, and give her attention.   The kids also give her kisses each time they go to school and when they come back.  We don’t know how much she can hear or understand at this point, but if there is a chance she can hear, we want her to here us, the laughing, the yelling at her brother and sister to stop fighting, just hear us around her.  There is always someone with her in this room (including me right now doing my ‘night shift.).   She is never, ever alone.

Even though our days aren’t filled with constant depression (who can live like that when you have two other kids), I have found that we each have certain triggers that will just hit us and we lose it.

I have been trying to work on getting our photobook done from our Make A Wish trip.  We had over 1000 pictures taken during that week, and it is such a huge project.  But it took me months to even start it, which I did about two months before this latest situation changed.  Two weeks ago, I tried to restart the project, wanting to get it done before … well, before something happens.

That first night I tried again, looking at all the pictures… I just lost it.   It was such an amazing time in our lives with Hannah, one of the best weeks really.  The smile on her face on so many occasions was priceless, and seeing Ethan and Abby thoroughly loving their time there … it was just wonderful.

But then I came across this one picture of Hannah.   It isn’t a great photo, but there was just something in her look, something real, something sincere.  She was sleeping, and you could see that she was just peaceful.  I looked over at Hannah sleeping on the bed over here, and she had the same look on her face.   The exact same look.   Argh…just even thinking about that picture makes my stomach queasy and my heart ache.

I almost hit the delete button to get rid of it, but I didn’t.  I just decided I will work on the book later.    I ended up crawling into bed with Hannah, snuggled her into my arms, and just cried for what seemed like hours (which was good that everyone else was asleep).

That was a week ago.  I haven’t gone back to continue working on the book yet.

But life goes on.  It just does.  Even though I have my moments of breakdown (usually when I am alone), I don’t let them consume my life … at this point.  I do live with a constant knot in my stomach wondering the “when will it happen?  will I be there when it does?  what will she look like?  how we will go on afterwards?…” questions … I mean, those rarely go away even though our family still lives our daily lives.