Trigger photo

One of my favorite Hannah pics

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.


The hospice social worker came by for a visit today.  She mostly works with the kids, but it was nice to sit down and talk to her for a while before she spent time with Ethan and Abby.

We started talking about Hannah, our plans we have made, etc.   I shared with her that Daddy and I have started talking about our lives “post Hannah’s situation.”   We talked about me going to get a job, the Little Miss Hannah foundation, how I am going to adjust to no more night nursing, getting rid of all the medical equipment…

Saying the words out loud leashed an overwhelming wave of guilt, and I wished I could have taken those words back as quickly as I said them.   It felt like I was acknowledging that it was okay for us to lose her.

She reassured me that it was okay to start having these discussions with Daddy.   She actually seemed a bit relieved that we were talking about it, as she says we are in the ‘survivor’ mode, which is a better place to be than not talking about it.

She made the comment that 80% of marriages of couples in our situation end in divorce or separation.  That number is just staggering to me.   Usually the mom and dad aren’t on the same page on the decisions being made or, worse yet, they don’t talk about the decisions that need to be made.

Thankfully, Daddy and I are in that 20% because we do talk about everything, and often.   Even though we are handling our emotions and how we approach Hannah’s current situation differently, we do have full respect of the other’s decisions and their reasons for it.   We are just different people wrapped in guilt, sadness, and fear about what is happening to our little girl and how it will affect our other two kids and ourselves.

But I still feel horrible and incredibly guilty for talking how our lives will adjust when she passes away.  She isn’t gone yet, and I feel like this should be a sacred time where all the focus is on her.  But on the other hand, I feel we need to talk about it because it will happen, and Daddy and I want to be prepared so we aren’t blindsided.   It is just the way we are (heck, we made funeral arrangements as soon as we could so we didn’t have to deal with that eventuality when the time came).

I keep thinking back when she called it being in a “survivor” mode.  I never thought about it that way before.    To me, the term “survivor” implies that someone has to experience a traumatic or major event in their lives first in order to reach that ‘status.’

I’m not ready to be a survivor yet.  I would be willing to put all that “after the situation changes” talk on hold indefinitely if it would change things.

I don’t want to think about a life without my little miss Hannah.

Laying the Foundation

I have decided to convert Hannah’s “Hope for our Hannah” cause to what will be the cause page for our Little Miss Hannah Foundation.  (Unfortunately Facebook won’t let me change the name because we have over 10 members).   Please take a moment and join, ask your friends to join.

Over 2400 people have supported our fight to give Hannah a comfortable life, and I hope that you will all continue to support our fight to create this foundation in her honor. No donations will be accepted on this site at this time.

If you can’t see the link below, you can go to here.




So conflicted…

Hannah’s breathing continues to become more shallow each day.   She is starting to tolerate her feeds less so we have started decreasing her caloric intake (down about 15% from her normal – not doing a Terri Shiavo).   She is requiring daily enemas to keep her body moving so her stomach doesn’t continue to become distended and uncomfortable.

She is waking up every couple of hours or so.  Most of the time, she is immediately agitated and her body becomes spastic and her apneic spells become more pronounced.

On a few occasions, her body is calm, which I treasure because I lay down next to her on her bed, cuddle next to her, and just gaze into her eyes while I stroke her hair.  I don’t know if she can see anymore, but I position myself so that if she can see me, she sees me gazing into her eyes like we have done so many times over her short three years.

What gets me is when she is awake, starting to get agitated, and then I see the tears start forming in her eyes.  Kills me.  I don’t know if it is from pain, agitation, or just a involuntary reaction, but that is our cue to re-sedate her.

I can’t believe where I am in my life right now.   I am basically waiting for my daughter to die.   Even seeing the words is so surreal, like it isn’t really happening to me.

But it is.   I am constantly looking over at her and making sure she is still breathing.  Even now, just 10 feet away from me, I am straining to make sure I see the rise and fall of her chest so I know that she is still with us.

When I see the tears and the agitation, I let her know it is okay to let go…that we will always love her…and that it is time for her to be free and out of pain, time for her to explore her world outside of the jail that is her broken body.   I just want her to know that it is okay.

But then  when she is peacefully sleeping, and I get to be with her and cuddle her, smell her, run my fingers through her hair, and massage her body, I tell myself I am not ready to let her go.   Even now, knowing what her condition is, I am so sad because I don’t want to lose her.   I know that she can’t stay like this forever, but I’m just not ready for her to go.

I’m just not ready for her to go.   I know it is selfish.  But I know I’m going to lose her in a short time, whether it is days or weeks.  I don’t think it is fair.

What did we do that was so terrible that she has to suffer like this?   Am I being punished for something I did in my life?  Why after so many years of failed infertility attempts and multiple miscarriages was I blessed to naturally conceive and give birth to her — only to have her so ruthlessly taken away from me?

She never got a break!   From her second day of life, we were dealing with medical issues — ones that seem so benign now but seemed overwhelming even in her first year.   She has brought so much happiness and love into my life, more than I ever thought was possible.  Even through the years, the disabilities, the hospitalizations — she pulled through with such a spirit that was just awe-inspiring.  Why does she have to suffer so much now?

Why does she have to suffer like this?   Why do I have to lose her?   How are Ethan and Abby going to handle all of this?   Daddy?   How am I going to survive this?    My body is physically aching right now just thinking about this.

Pain-free and happy.   That was always our goal for her life.   But I feel like we have failed miserably with this over the past couple of months.  Yet, I know the only way for her to get back to that state is for her to let go and for us to have to say goodbye.

Even though I told her it is okay to let go, I don’t want to say good-bye.   I’m not ready.   I’m not.

Pink and Yellow and Minnie

Hannah has had a pretty mellow day.   We were given the option of going up on the valium from every 6 hours and using it every 4 hours if she needed it.  Because of this, we were able to keep her from getting agitated for a good 24 hours.   As a matter of fact, we didn’t use chloral hydrate for 18 hours, which is a record.   Of course, that record ended this evening when we had to use it just 4 hours after the previous dose.

I don’t know if it was the timing of the meds or if she is developing more of a tolerance to the valium.

My sister-in-law came over to hang out last night.   She wanted to get some lovey time with Hannah while she was sleeping.    What I love about her is that she asks questions that people are afraid to ask and makes comments that people are afraid to make (reminds me of my friend, Heather).

One of the questions she asked was about the funeral.  She wanted to know basically if it was going to be a mourning or celebration service.  Black or colorful.

Months after losing most of her fine motor skills, she used all of her energy and enthusiasm to reach out and touch Mickey Mouse! I cried with happiness right then and there. Best moment ever!

I told her that Daddy and I actually had already discussed this when we met with the funeral director a few weeks ago (has it already been a few weeks?!).    We want the service to be a huge celebration, lots of pink and yellow (the colors that remind us most of Hannah), and lots of Mickey and Minnie Mouses, music, ladybugs, and monkeys.  No black mourning dresses or suits.   A true celebration of Hannah’s life.

It is surreal and bizarre to think about stuff like this when Hannah is sleeping only 10 feet away from me.    She is sleeping on her Minnie Mouse pillow that was made for her for her Make-A-Wish trip back in the spring.  She is surrounded by lots of Minnie Mouses actually – from a big 3 foot one to various adorable little ones.   She is snuggled in her bed, covered by her Minnie blanket given to her by some good friends.  Her balloon Minnie is also near her, watching over her.

Minnie and Mickey have made her so incredibly happy ever since she could recognize them.  Watching the Mickey Mouse Clubhouse for hours on end.   Spending the best time of our lives (literally) at Walt Disney World and seeing Hannah reach out to Mickey with the biggest grin ever on her face.  I love seeing her surrounded by them now.  I think Minnie will always have a soft spot in my heart forever.

Her breathing is more shallow than it was a few days ago, but right now she is comfortable.

Time for me to crawl into bed with her and get my snuggle time on.

Fear and apnea

For the past 36 hours, Hannah has had these weird mini episodes when she was awake.  Up until this afternoon, I just chalked it up to a weird form of agitation, but after thinking about it more (and having her nurse and Daddy notice it to), we now think it is more.

She would wake up and be somewhat agitated.  She was fuss, her movements would be going, and you could see the stress in her face.  Then for a few seconds at a time, she would completely stop – body stops moving completely, eyes wide open and straight ahead, and she would stop breathing.  Then as quickly as it came, it was gone again and she would be back to being agitated again.

It started happening more this evening, to the point these episodes were happening every 10 to 20 seconds and lasting a few seconds at a time.  At first, I thought it could be absence seizures (knowing that uncontrollable seizures are common at this stage of the disease).   But then I looked up absence seizures on youtube (thank goodness for youtube), and I realize that those are not the same thing as what we are seeing.

I called Dr. Goker-Alpan this evening on her cell to get her advice.  I explained what was happening, and she said that this was likely apneic episodes.   She made the comment that “we need to decide what we want to do with regards to a vent,” because this was the time that if we were going to put her on a breathing machine to do it.   I told her Daddy and I already made the decision not to hook her up to a vent.

She then explained that this is the advanced end-stage of the disease process.   That the apneic spells would likely be longer in duration.  Eventually, she will likely have an apneic spell and just not come out of it.

She made the comment that it would be peaceful and not painful when it happens.

After I got off the phone with her, I left Hannah with Daddy and our nurse and just went into our bedroom and lost it.   A million thoughts went through my mind so quickly …

  • Were we making the right decision to not vent her?   But she has so little quality of life now that I feel it would just be selfish — but at least she would still be here longer for me to love on her.  But that is not fair to her.
  • How much more time do we have left with her?
  • Will I be home when it happens?
  • Do I need to stay home every moment now just to be sure I am here when it happens?
  • What will it look like when it happens?   Will she have one of these apneic spells when she is awake or will she pass in her sleep?
  • Why the hell is this happening to her?   Could someone have made a mistake?
  • How will our family survive?   How will *I* survive?

I will admit it.  I am scared.  I am scared of seeing her pass away in front of me, but I also want to be here when she does.  I want to be holding her when it happens.

I am scared to lose her.  I can’t imagine my life without her now.  Three years is just not long enough.

Why do I have to lose her after fighting so hard for her?

How will I live without her?