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…



  1. Raelynne says:

    DOn’t worry dear Carrie. You are a wonderful mama!! You need to be present for “something” or you will never forgive yourself. Take a deep breath, hold on and know that we’re all here praying for all of you. Please take some comfort in knowing that there is a greater power to give you strength and let Him help you when you need it. God bless all of you!!! XOXO Raelynne

  2. cheri says:

    What can you do and still be there? Do you like to read? Get lost in a book for a few hours. Take a bubble bath? Read IN a bubble bath? You can give your mind and body a break and still be present. And of course, enjoy your cuddle time with Hannah, because that’s good for BOTH of you. 🙂

  3. Hi Carrie:

    I read your posts and it breaks my heart. I am praying for Hannah and for you guys. We are struggling so much too — I don’t know how to take care of myself any more either. It’s 1:20pm and I am still in my bathrobe. It is beyond exhausting dealing with an ultra rare disease of this magnitude. I understand the obsession and also how much you love Hannah.

    Do not feel guilty Carrie — you are an AMAZING Mom and you have done everything humanly possibly for Hannah. There are many people out there who probably should have guilty feelings for how they treat their children. I see these people everyday in the grocery store, airports, on the news, etc. You should feel proud for all you have done for Hannah — you have fought like a warrior and so has Hannah because she is just like her Mommy.

    I believe what you said about “Hannah’s Plan.”

    Trust in Hannah’s Plan Carrie.

    Know there are many people sending you lots of love and strength right now.


  4. Addie says:

    I found your blog a few weeks ago and read it from beginning to end over the next couple of days. My younger brother has a life-limiting disease and it makes holidays that are so joyful for many very difficult for us. I am thinking of you and your family today. I am thankful that you decided to share your story. I am thankful that Hannah, Abby and Ethan have such a wonderful and caring mom. Sending love your way.