Embracing the PEG {and banishing guilt}

Yup. That's it. Still scares me a bit.

Just got home from the hospital. Grace got her PEG this week and I thought if I didn’t blog about it, like, right NOW then I knew I probably would never get around to it.

There were so many feelings to get over leading up to this point. It’s like you know how there’s those 7 stages of grief? Well I think there’s also 7 stages in coming to terms with a feeding tube {disclaimer: these scenarios are completely made up *cough cough* I’ve never done any of these things}:

  1. Guilt – guilt that you haven’t fed her enough.
  2. Guilt – guilt that you let your job get in the way of feeding her enough
  3. Guilt – guilt that you let your marriage get in the way of feeding her enough {date nights are for chumps!}
  4. Guilt – guilt that you slept in 10 extra minutes 3 times last week which meant everything was rushed and she missed those last 3 bites of oatmeal when, added together, equals a whole bowl of oatmeal and, thus, you basically forced her to skip a whole meal for your own selfish gain and THAT’S exactly why she hasn’t gained any weight in 2 whole years!
  5. Guilt – guilt that you let her fall asleep before her bottle sometimes and just tiptoe around thinking “if she wakes up, I’ll give it to her. But I’m going to be so quiet that there’s no way she’ll possibly wake up” to make you feel like it isn’t actually your fault that she’s skipping her bottle tonight.
  6. Guilt – guilt that your kids {who you promised yourself you’d homeschool forever} brought yucky viruses home from school {EVIL SCHOOL!} and she got so sick that she vomited for 4 days and lost weight. And THAT’S exactly why she hasn’t gained weight in 2 years!
  7. Denial – and the last step in the process of coming terms with a feeding tube is denial. Whereby you deny any feelings of guilt because -obviously- this has nothing to do with me and everything to do with evil Rett Syndrome {which is actually true. Although the guilt is very real, too}.

So I guess you can tell I’ve been feeling a little guilty leading up to this point. And as much as I’ve taken comfort in the kind words of people telling me otherwise, it’s still really not possible to stop believing that this is completely my fault. That I haven’t fed her enough. Because let’s face it, there are a couple hours left in the day not devoted to cooking food, blending food, cleaning the blender {I HATE washing the blender!} and then coaxing her to open her mouth wide enough to actually get it in. And when you can’t really chew, there are only so many options in this household unless your mum doesn’t have anything to do other than dream up easy-blend recipes for you to sample.

I was kind of getting to the point of acceptance that it wasn’t my fault when the surgeon’s letter summarizing our first appointment came through stating: “Grace’s mother doesn’t feel she can feed her enough”. Great. Thanks lady. I gave you all kinds of fluffy stories about noodles coming out of her nose and gagging and vomiting when she hates what I’ve made and you had to put it in black and white: “Grace is getting a surgically implanted plastic tube ‘cuz her mother doesn’t want to feed her”.

But you know what? In spite of being wracked with made-up guilt, I really REALLY knew that this was the best thing for Grace. And I knew that my over-thinking and self-guilt-tripping was ridiculous. And I knew deep down that this wasn’t my fault. Because you know what? It IS hard to feed Grace enough. Not because I’m self absorbed or because I hate her cute little guts. Because she has Rett Syndrome. And somehow, accepting this operation was like one step further into accepting Rett Syndrome. And somehow, I’m still pretty good at pretending that Rett doesn’t exist most of the time. Kinda hard to deny it when you see that tube sticking outta her guts though.

The hospital thing was great. By far the most amazing hospital experience I’ve ever had {yes, even in America}. The nurses were flipping unbelievable and I’m determined to write each and every one of them a personal thank you card. And Grace’s surgeon was amazing {in spite of her letter} and it’s got to be said that she’s super gorgeous and looks so much like Juliane Moore.

The couple of days after the surgery -quite frankly- were sucky. Seeing Grace cry for a drink for so many hours, staring me right in the eye and crying “Baaaaa baaaaaa” for her bottle and me desperately trying to tell her that it wasn’t mummy’s fault that she couldn’t have a drink. I can only imaging that she was thinking “why are you doing this to me, evil woman?!”

She was {and still is} in pain when the meds start wearing off. But giving her medicine through her tube is simply a dream. I know that at midnight when it’s time for more, I won’t have to wake her up to squirt it in her mouth and then further wake her up by brushing her teeth because I’m worried about rotting them with gooey syrup. I can just squeeze it in her tube and leave her sleeping.

It’s funny. We were in a recovery room with 6 other kids, 3 of whom had also just had the same surgery. And after the nurses came in and trained us how to use it and left us with everything we needed in order to easily feed them lunch and take a much needed nap, we all sat there instead struggling to feed them hospital food. I can’t help but wonder if we were all playing the same game: proving to one another that it wasn’t really our fault that our girls had just gone through a really hellish couple of days. Because we DO feed our kids, dammit! I wonder…

Grace smiling like a loon after her surgery

Note: I’m quite dramatic as you know. And while all of the above is completely true, it’s also true that everything about the last 3 days has been far better than I could have ever dreamed it would be. For example, it took 2 different Drs 4 attempts to get the IV in her hand. And the whole time they were rooting around in her hand looking for a vein, she was laughing her adorable little head off. When I told Steven this, he said he’d just been praying that she would laugh instead of cry. And when she wasn’t groggy from meds or crying for more, she was a super happy little soul that made everyone come and marvel. And at the end of today, I got to share Jesus with a lady and she cried and said I was the 3rd person God sent to her this week and she decided to go back to church. There are silver linings in every cloud! That is the saying, isn’t it? I dunno…I try to avoid cliches as much as possible.