Saturday, May 14, 2011

Another little piece of my heart gone again

Today was day two of Emma's saline trial on the pump. She has done amazingly well with it and I could not be more proud of her. I had a moment tonight though that definitely brought tears to my eyes. She was lying in bed...her movie was finished...she was gathering up her special 4 stuffed animals that she cuddles in her arms every night...I was helping her decide what should be on her "cloud" tonight. We came up with this "cloud" thing to help her fall asleep and not worry about having bad dreams. Each night I have to come up with someone to hang out with her on her "cloud" and watch over her while she sleeps. Sometimes it's Shrek...sometimes it's SpongeBob...sometimes it's even me. Well, tonight we decided on Selena loves that show "Wizards of Waverly Place." Anyway, once that was decided, she looked up at me with her big brown eyes almost spilling over with tears and she told me that she kind of wanted to take the pump off tonight. She said that it was annoying to try to sleep with it on and she just was wondering if she could take it off. My heart hurt...I knew exactly what she meant and how she felt because when I wore the pump with saline in it, I remembered that annoying feeling...I remembered how hard it was to find a comfortable position...I remembered thinking in my head that I wanted to just take it off...just take it off and Emma would never know the difference...I could've just reattached it when I woke up and she would've never known. I didn't though...I forced myself to keep it on...I left it on so I would know how she will feel. I wanted to do it for her. I wanted to know how she would feel and how different things would be for her...things as simple as being able to fall asleep and be comfortable.
So, there I stood to her bed...watching the tears fall and seeing her look so disappointed in herself once again. I wanted to help her. I wanted to tell her that yes she could just take it off for tonight and get a good sleep...but I couldn't because once she is hooked up to it for real with insulin really in it....that won't be an option...she won't be able to just take it off whenever she wants to or whenever she is annoyed with it. She will have to wear it ALL THE TIME. It will be with her always...hooked onto her belt or her pants or her will always be there. It may seem silly, but I don't think it really sunk in for me how permanent the word "always" really is until tonight. It hit me like a ton of bricks...this pump will be her pancreas...this pump will be with her and on her all the time. It will be there for every sleep, every school day, every gymnastics and piano lesson, every birthday party, every will be attached to her in every single picture I take of her from here on out. It will be there....attached to my baby girl...ALL the will literally be a part of her.
I found myself once again wishing that I could be the one to take this from her....wishing that I could be the one to wear it all the time. I would wear it every single second of every single day for the rest of my life if I could. I wish I could. I want to take this from her and give her back the golden right of having an option. I want to give her back the ability to choose and decide that if something is annoying her and making her life more difficult...that she can just take it off or just not do it. But I can't....I'm just her Mommy...that's all...
So, instead I explained to her that she could take it off if she wanted...but once she started on it with insulin on Tuesday...that would not be an option ever. I told her that she needed to think about it over the next few days and really make sure that this was what she wanted to do. I told her that whatever decision she makes, I will not be mad...I will be there supporting her and loving her and still being proud of her. Why oh why does a 7 year old little girl have to be thinking of things like this? Her biggest decisions should be what she wants to play that day or if she wants pigtails or braids in her hair.....not if she wants to receive the insulin that her body can no longer make on her own, through a pump or injections.
She kissed me goodnight and told me she loves me. She said that she really wants to keep the pump. She said that she is going to force herself to just get used to it while she's sleeping. She really wants this. I love her and I hugged her extra hard tonight because I am proud of her. If only hugs would bring back a functioning pancreas....what a wonderful thing that would be....


  1. :-(
    Do you have a soft pump pouch for her? Too Sweet Boutique has super cute ones. Tallygear's tummietotes are also great for holding the pump so they don't flop around. She will get used to it. Bryce barely notices his. Though it does suck to think of how they ALWAYS have to be connected to a "machine" But that is a small price to pay for the flexibility and "normalcy" the pump brings.
    You have a sweet, smart should be proud. :-)

  2. Yes, what a wonderful thing it would be if our mommy hugs could make D better! *sigh*
    Bean complains from time to time about her Pod being in the way of her laying in a certain position when it's on her tummy. It's just something she adjusts for and deals with...but I so wish she didn't have to, that's for sure!
    Good for Emma for being committed to making it's an adjustment for sure but I know she can and will make it work!! :)

  3. Oh boy she's such an amazing little girl Amy, I know how proud you are of her and I'm proud of her over here too. Thanks for sharing the ups and the downs with us I really appreciate it.

  4. I remember it being a bit annoying too. In a way, I think we were lucky starting Joe on it when he was three...he never has known any different (sad, but true). Give her a fist bump (is that still cool?) from me and Joe. She is doing great...and you are too...(((HUGS)))

  5. Awww, sweet Emma. It's so sad how this disease forces them to grow up too soon.