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Unconditional and Pure Love

The night before last, I finally took the time to color my hair.  I had to get rid of the “grandma hair,” as Little Girl A calls it, which is ironic since neither of her grandmas have actually gray hair.  (Stereotype at an early age, I guess?)

Anyway, I had to wait 25 minutes for the color to set.  Hannah was pretty fussy and crying in Daddy’s arms.  She gets this way when she doesn’t sleep well during the day, which is another issue we are working on.  I hated watching her cry and even attempted to pick her up, which my husband abruptly stopped me because 1] he wants to take care of her, and 2] the smell of the hair solution was pretty strong and probably not good for Hannah to be leaning against.  I know he was right. 

Even so, it really bothered me to watch her cry and fuss so much.  I even attempted to rinse it out early to take care of her, but my husband said “no.”  We both agree that she needs to learn to be comforted by someone other than me (especially with her daddy), but it is so hard to watch. He tried so hard.  He tried the rocking chair, walked around the house, laid down with her, stroked her face like she likes it…you name it, he tried it.

The 25 minutes finally ended and I took a quick shower and got ready for bed.  As soon as I opened the doors from the bathroom.  She was crying hysterically to the point where her face started to get red and blotchy. 

I picked her up and put her on my shoulder… it couldn’t have been more than 20 seconds, but she was quiet and laying on me.  I looked at her splotchy red and tear-stained face, and she gave me the biggest smile.  I smiled back. I then said “Hannah, you do realize you just broke your daddy’s heart!”  She laid her head right back on my shoulder and took a big breath and relaxed.  We laid down on the bed, and she fell immediately asleep.

THAT was an incredibly “Mommy” moment.  So powerful.  So amazing.

Little freak-out

I had trouble going to sleep last night even though I was exhausted at 9:30 PM.  My husband and I both went to sleep around 10:30 PM, and then I just started thinking and thinking.  I hate when I do that because I end up staying up until early in the morning (3:30 AM this time) and can’t sleep.  It is like my thoughts get progressively more negative and more intense and worrying. 

Last night, I really started to worry about money.  I’m not going to be able to stay home with Hannah indefinitely even though I REALLY want to.  I kept thinking that “what if” we get a horrible diagnosis — I don’t want to go back to work, I just want to take care of her every moment I can.  Then, I deviated to “what if” she has NPC and our insurance company doesn’t cover the experimental miglustat/Zavesca — it only covers up to $8000 a year and this medical alone runs about $100,000 a year (just for this medication!).  How do we find that money?  We have no choice but to find it, you know?  But where would we find that kind of money for that and her other medical treatments not to mention just our life in general?  So, I started really freaking out about money to the point I just started crying at 2:30 AM.   We are already living off our savings right now because I’m not working — but that won’t last forever. 

Until we know something, and if we get a serious diagnosis like NPC, then I want to be the one to take care of Hannah, not someone else.  I’m not against daycare.  Heck, both of my other kids were in daycare at 18 months (part time).  But if Hannah is going to require special care for her special needs, then I want to…I HAVE to be the one to do it (or another family member that I completely trust).

We celebrate Hannukah and Santa in our house, which obviously spoils our three kids tremendously.  We actually didn’t get Hannah any Hannukah presents this year, and my kids were so disappointment with us.  They kept saying that it wasn’t fair and that she should get some too.  We made the excuse that since she can’t open the gifts, she doesn’t need them this year.  They still believe in Santa, so Hannah will get “Santa’s gifts” from us instead.  I was really touched though at how emotional my kids got, especially my 8yo son, because his baby sister wasn’t getting a Hannukah gift.  We promised them next year she will.

Now that the spending for the holiday season is over and all our big expenditures this year, we are going to be extra frugal in our spending just to try and make it so I can stay home as long as possible.  But I know clipping coupons and cutting back a bit isn’t going to bring us the type of money we need if we get the news we fear. 

I really don’t know what we will do if this actually happens.


She took her pacifier out of her mouth and put it back into her mouth — more than once today!!!   That’s my girl!!!  (I’m so proud)

Live like you were dying

I got that Tim McGraw song in my head…

But I realize that is the way I am parenting Hannah now.  She can have as many naps on mommy as she wants, she can have as many cuddles and kisses, and I’m not even going to worry about her getting too attached to me right now.  I do admit, I am spoiling her.  9 times out of 10, she has to fall asleep on me before she will continue sleeping in her bed.  At least now, she is in her pack N play downstairs with me taking a good nap.  Little late, as we were at Little Girl A’s preschool holiday party.   I’m not a co-sleeper, but there have been times when I have taken a little nap downstairs with her on my chest.

You parent a child differently if you fear that you may only have a couple of years with them.   The old rules don’t apply right now.   She can have whatever she wants when she wants it.  She is the most mellow and happy baby as it is, so it doesn’t take much to keep her happy.  Everyone we meet can’t believe how smiley and curious she is — always looking around, happy to be involved in the party, etc. 

 I told my husband, if we find out that she is healthy and (with or without treatment) is going to live a long and happy life, then she is going to be in for a bit of a change!  

Guess who is awake now!

Skin Biopsy update

From Hannah’s geneticist’s nurse…

Per XXX Medical Genetics Lab, Hannah’s cells are growing, but rather slowly. They should be sent out to XXX within the next week (or two because of the holidays) for further testing.  Once received, it will take 2-3 weeks for results.

Slowly… of course, I’m reading into this now.  Is slowly bad?  Or is slowly just “slow”?