“Challenging” is a word I have heard used to describe Hannah more times throughout her life than I can count.  Just once, I wish she could just not be so challenging.

We are still trying to find the right combination of meds to balance her agitation and movement disorder in order to give her body peace yet give her some awake time so she can feel love from all of us.

Saturday was pretty bad, but Sunday was progressively worse.  She would sleep for only a couple of hours (from the chloral hydrate), and then wake up really agitated.  We would then have to watch the clock until that 4-hour mark just so we could knock her down again.  That went on all…day…long.  It was hell.   Finally, I called our nurse coordinator that night begging for help.

She talked to Hannah’s hospice doc, and they agreed to give her an extra shot of phenobarb as well as increasing the haldol from 0.1 mL to 0.25 mL and see how she responded.

What a difference!  She woke up at 8 am (after getting her last chloral at 4:30 am), and she was not agitated!  It was almost bizarre because we were expecting it.  What is even crazier is that she stayed awake until 2 pm – 2 PM!  We gave her benadryl to see if she could sleep around noon because she was really tired, but we don’t know if it took a while to kick in (or just didn’t work), but she actually fell asleep on her own around 1:00 pm!   She slept for about an hour, and then at 2 PM she woke up agitated again, so we had to resort to the chloral.

It was so nice to see her somewhat comfortable for a few hours.  She really doesn’t react to us much anymore, but she seems to respond to our voices on some occasions but trying to turn her head to us.  Sadly, there were no smiles during this time, no matter how hard I tried to get them.  Fortunately, our Monday  nurse (who we had to fight to keep on Mondays) was so loving with her and basically spend the afternoon rocking her and cuddling her (while I slept).

She slept for a few hours, and then she woke up again in a pretty less-agitated state.  Daddy got to spend time with her, holding her, and then she fell asleep on her own (with the help of benadryl) at 7 pm.   Again, ON HER OWN!

She just woke up around 11:15 pm when I am “on duty,” and she was horribly agitated within minutes of waking up.  I gave her midnight meds at 11:30 pm, and I waited desperately for them to go into affect so she could calm down.   She was just too miserable.  Hearing her squirm (the only time we hear sounds from her mouth are when she is upset), I just had to give her the chloral again at 12:30 am.

It seems like she is really getting agitated when she wakes up within a couple of hours of her three-times-a-day meds (8 am, 4 pm, and midnight).  Maybe I’m just trying to find a pattern, and it was just a fluke?

I would give anything for her just to be comfortable and not experience this intense agitation again.  I hope her body lets us comes up with a plan of care that will let us do that.

Hannah was a few days overdue on her Cerezyme treatment.   It was important to us to continue treatments because Hannah’s comfort is always our priority.

Our hospice coordinator had been working to get Hannah’s treatments done at home now that she has the broviac catheter (and doesn’t need an IV anymore).

We just assumed that an RN from our nursing agency would come to our house and do it.

But then I got a call from Dr. Bernstein, Hannah’s specialist, whose office we have been going to every 2 weeks for the past 16 months.   He was sending our favorite nurse, the one who has done Hannah’s IV and taken care of her 90% of our visits, to our house on Friday to administer the Cerezyme herself.

How wonderful was that?  We were so touched that their office cared so much about Hannah to send her out to us — on a work day!   These infusions take 2 to 3 hours, and they were willing to let her come to us.

It was nice being able to sit and chat with her.  We, along with Hannah’s regular nurse, were able to talk about what was going on, joke about ridiculous things, and just hang out.

Really meant so much to us.   Now I don’t know if this was a one-time visit (and then our nursing agency would take over treatments), but I hope not.  Whatever happens, I am just so grateful that she was able to come out for this.

Yesterday was an emotionally draining day.

For the first time in a few weeks, I had the chance to sleep as late as I wanted to after changing with Daddy at 5:00 am.   So what happens?  I couldn’t fall asleep until around 6 am, and then I woke up multiple times until I couldn’t fall back asleep until 10 am.  My mind is just constantly going lately (and no, Ambien is not an option as I want to be able to wake up if there is something going on).

After I woke up at 10 am, I couldn’t get out of bed.  I just started sobbing.  It was like I kept so much pent up from the day before, trying to keep it together, that when I woke up, I just couldn’t stop.  Daddy would come into the room, trying to say some comforting words, but I just couldn’t shake it.   I even heard the nurse with Hannah in the living room, hearing her awake and moving, but I just couldn’t get out there.   I was just so sad.

Finally, after about 2 hours, I was able to get up and out.

We had ANOTHER new nurse training today, and even though she was very sweet, I just didn’t want to deal with it.   She was a much better fit than the one yesterday, but, and this could all be in my head, but she doesn’t have that loving connection with Hannah, and that is what I want for Hannah right now.  I want her to be surrounded only by people who want to love on her, even if it means we don’t use all 80 of our nursing hours.

Daddy ended up getting me out of the house for a quick lunch.  On the drive to the restaurant, I just let out exactly what I was feeling, and he did the same.   Once I composed myself, again, we went into the restaurant.  Really it is just a small store in a mini mall with about 7 or 8 tables, and there were only two other sets of customers there.

This nursing thing was also starting to get to me.  Our regular nurse was able to pick up 51 of the 80 hours, which is awesome, which left only Mondays, Wednesdays, and Friday nights open to fill.  For whatever reason, they were taking our regular Monday nurse, whom we really like, away for another case.    She was the one that filled in on an emergency basis this Wednesday because our regular Wednesday nurse called out (she came by the hospice on Saturday in tears, so we are wondering if she can’t handle coming back).

So Daddy called to see what was going on.   Who do we have for Monday?   Abby has her brownies halloween party, but Daddy has to go to work and wouldn’t be available to go.  Taking Hannah to brownie meetings and events is no longer an option, obviously.

Fortunately, they are letting us have our regular Monday nurse one more week.   Daddy was trying to explain that we really need to have nurses we connect with right now and that we wanted them to find out if our Wednesday nurse was ever going to come back.   Daddy, always being respectful, together, and firm on the phone, wasn’t able to get much out of them other than “they are working on it.”

I was getting so frustrated that I asked Daddy to hand me the phone.   I started out fine, but within a few sentences I just lost it on the phone with her, almost hysterical.  I told her that I can’t handle training anyone right now, that I really really want our Monday nurse not to be taken away from us because Hannah needs people who care about her around her, and that please please try to see if our Monday nurse could pick up the Wednesday shift as well.  I’m sure I said some other pleading, bawling requests — yes, in the middle of this small quiet restaurant — but the jist was that we needed to have people around we felt comfortable with.

I could tell I got to her, and she said she would talk to the nursing director.  She understood.   Whether or not it comes to pass, we will see.

After I hung up, Daddy just smiled at me and joked “Well, that got our point across.”  I just started laughing, drying my eyes.   It was the lighthearted feeling that we both needed but didn’t have yet that day

It was not my intention to lose it on the phone, but my heart had other plans.

Thursday was just so busy.   First it was the very long morning at the cemetery making arrangements.

On the way back from the cemetery, we picked the kids up from school.  “Mommy, where did you go?”  Abby asked.  “We had some errands to run,” was how I answered her.  If she only knew what that errand was…

About 30 minutes after the kids got home, the hospice social worker came to our house for some therapeutic art therapy.   She is so good with the kids, and she really knows how to get them to think about their emotions without actually having them come out and say them.  Abby just adores the heck out of her.  Ethan is a bit more reserved, but he thoroughly enjoys the ‘projects’ that she gives them.

Once she left, it was a rush to do homework because our temple’s associate rabbi was coming over for a meet-and-greet.

Back in California, Daddy and I were pretty active in our local temple.  We really enjoyed the social events and getting into the holidays with the kids.  However, when we moved to Texas, the temple was just so small (just a few dozen families), and we never felt the connection.   We have really wanted to get back into temple life, but we just never had the time or ability to do it.

After talking to the cemetery director about the chapel we wanted, we told her our desire to get back into the temple but the timing was wrong.  She immediately texted the rabbi (they are close, it is a jewish funeral home), and the rabbi asked if he could come by our house later this evening to meet us, meet Hannah and the kids, and talk to us.

Abby’s homework was just barely done when at 7 pm, the rabbi knocked on the door.   After he introduced himself to the kids, I sent them off to Ethan’s room to play (his room is the farthest away from the living room).  Then “the talk” began.  He was very honest, blunt, and didn’t candy coat things — he was perfect for us.  It was a good conversation, and we felt very comfortable with having him involved in our situation.

Both Daddy and I felt that he was a bit uncomfortable at times.  Hannah was really agitated and uncomfortable and was squirming in my arms.  The problem, we couldn’t give her the chloral hydrate yet because it was too early.  About 15 minutes into our conversation, we finally were able to give it to her.  Unlike most times it takes 5 to 10 minutes to knock her out, it took over 40 minutes this time!  So the entire conversation with him was me holding this beautiful little girl, clearly suffering and agitated, and us watching the clock like hawks until we could sedate her.

After the rabbi left, it was a quick dinner (thanks to our friends who had dinner for us) and off to bed for the kids.

Daddy crashed at 9 pm, and I was left to my night shift with Hannah.

Just emotionally and physically exhausted.   Really emotionally worn out.

Today was rough, really rough.

After only about a 4-hour sleep, Daddy and I left for our meeting with the cemetery director.  We had our heart set on having Hannah in the jewish part of the cemetery, so that was our game plan.

The director was incredibly sweet and compassionate.  She walked us around the reformed section of their grounds first.  It was beautiful but very quiet, very solemn.  Looking at the markers, they were all older people – probably grandparents, great-grandparents, and even some parents.  But no kids.  Then we saw the infant section of this part of the grounds.

But Hannah isn’t an infant, so therefore she would have to be laid in an adult-sized space.

She then took us to the jewish part of the main cemetery.  It had more trees, some bench markers scattered around, and it seemed to be more public (more people around).  Very pretty, just like a park.

She showed us what few spots were available, and it was like a maze trying to figure it out from the list of “inventory.”  I looked at some of the spots, trying to find some connection with what would be a neighbor.  I even found an elderly couple whose last name was the same as my maiden name but just spelled differently.  There was a space empty near them, but it turned out it was saved for another pre-need customer.

After 90 minutes of walking around both areas, I felt really defeated.  There was nothing that called out to me as a place I wanted Hannah to be, a place I felt I could come and feel peace when I would come visit.   I couldn’t find any connections, any pull.  I didn’t want to just to resort to what was available, but I felt that was where we were headed.

Then the director mentioned the Children’s Garden, the Garden of Innocence.   It was non-denominational (which is why she didn’t mention it), and it was only for infants and young children.

Daddy and I both longed to see it.

We walked across the cemetery grounds to the other side where the “Garden of Innocence” was located.  There were tons of flowers, balloons, and stuffed animals all over the place.  The spaces were smaller, and there was a mix of newborns, infants, and young kids.   Some of the markers had pictures, and the kids there were so young, so beautiful.

Daddy and I both felt the connection to this area.  We both decided that we wanted Hannah to be with other kids, other fighters like her.  There was such a vibrancy to this area, the colors of all the flowers and balloons.   Knowing that people come to visit this area more regularly.

What cinched it for me was a family that was visiting their son’s grave.  They were putting a fall thanksgiving craft scarecrow in the vase along with some flowers.   They had a little boy, probably around Hannah’s age, running through the cemetery looking at all the balloons and flowers.

That little boy brought life to the area.  This was the place we wanted for Hannah.

Once we made this decision, it was easier to do the rest of the process.  We found a beautiful spot towards the middle of the garden, right next to a little girl who recently passed away.   This space was surrounded by other children, even a 5-year-old girl who apparently loved Disney Princesses and Precious Moments.

After we picked the space, we went back to the office to do the paperwork.  It became more real there, having to choose what type of casket we wanted (traditional pine box, jewish tradition), which chapel we wanted (we took the larger one), type of granite for the marker, and a few other things.  Some of them just seemed so…I just didn’t like to hear some of the items on the list for the contract because I don’t want to think of that part of things right now.

The beginning arrangements are done.

Next thing that we need to have done is to put together a 5-minute-ish video presentation (if we want), get a photograph for the service blown-up to a poster, and we want to find a fun and bright Minnie Mouse blanket to place over the casket during the ceremony since it is just a pine box.

But again, the beginning stuff is done.  I’m so relieved that part is over.

Daddy and I decided that we needed to make Hannah’s final arrangements sooner than later.  It was a lesson that I learned from Cooper’s mom, seeing what a difference it was for their family having everything done so they didn’t have to add that stress when Cooper lost his battle with Mito disease.  It just made sense to us.

Coming to the decision of where to bury Hannah was so terribly hard for me and I struggled with it tremendously.  My great-grandparents and grand parents are all buried in a Jewish cemetery in Los Angeles, which is also where the rest of my family will be when the time comes.   I always thought that is where I would be someday too.

But we are in Las Vegas now, and this is our home.   This is where Daddy, Ethan, Abby, Hannah, and I live.  And I want to be able to visit Hannah whenever I wanted to, and I want Ethan and Abby to be able to visit Hannah whenever they wanted to.  So I had to resign myself to not burying her with the rest of my family.

So we are going later on today to meet with the King David Cemetery director to find out what decisions we have to make in order to get this put in place.  It was very important for me to have Hannah buried in a Jewish cemetery, and Daddy felt strongly about doing this as well.

After reading the email from the director outlining briefly what is involved, my chest started hurting.  These are not the decisions I ever wanted to make for anyone, especially my child.

I glanced briefly at the “Funeral Price List for Children,” and ugh, it just got me how business-like it all is.  I know, it is a business, and I’m sure they will handle everything with thought and care, but just seeing the listing was painful.  It reminded me of a menu of items, like “choose from the following”…

But it needs to be done.  Whether we will need it in a few days, a few weeks, or god-willing many months down the road, I just don’t want to have to think about starting to make these arrangements.