Grace for Rett » Grace's Life with Rett Syndrome

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.

Mila - May 4, 2012 - 9:32 pm

Sounds to me like a great LOVE between mother and her daughter. Not guilt. And as we all have to go through this life learning as things happen, so do the two of you.
I was wondering why I would always be overwhelmed with emotion when I read about Grace. And I always thought that it was her only. She had so much to offer, I thought. And she does! But this overwhelming feeling is coming from your relationship. You two LOVE each other that much!
Loving mother, loving daughter!
Thank you for sharing Elizabeth.

Teresa - May 5, 2012 - 11:04 pm

You are an amazing Mum with an amazing family..with an ever more amazing God. Thanks so much for putting this in writing…hope you’re keeping notes for the book I’m sure you’re to write eventually. 😉

wanda - May 7, 2012 - 1:43 pm

Thank you for keeping us posted on Grace. You’re an awesome Mom, Elizabeth! You’re more like Superwoman! I too, despise cleaning the blender and I don’t have nearly as much on my plate as you do… have you seen those single serve blenders? They just seem to make so much more sense than having to clean this monster size of a blender for one serving of food. It’s more like cleaning a glass well except for the blade part but wayyyyy more practical for busy mommys. Just something to think about, I’m not even sure if Grace is able to eat right away with a feeding tube? But, if she can this is the way to go. Love you so much and love reading not only about Grace but your journey as a mom, wife, photographer, and woman. Happy Mother’s Day to a Beautiful momma inside and out!

Carey Vorholt - May 8, 2012 - 2:15 pm

Our son just received his PEG at the beginning of April. We could easily have written one another’s story. Thank you for sharing!

Michelle - May 12, 2012 - 7:30 am

Hey what I want to write to you I will pm you lots of love xxxx

Kelly - May 14, 2012 - 12:26 pm

THANK YOU for this post! I know that there are so many moms that can relate – including THIS one! Love and hugs to you and to Grace – you BOTH are AMAZING in my book!

Melissa - June 12, 2012 - 2:08 am

Amazing. Powerful. Transparent. Humbling. Beautiful.

R'ee W - August 1, 2012 - 9:23 pm

Wow, this was close to my heart. I too had a WHOLE lot of guilt when we got our son’s peg put in(his peg was mostly for fluids as he doesn’t drink enough). All the things you wrote are just how I felt…like it was me not doing enough to get fluids into him and that maybe I should just be trying harder, spending more time on it. In the end the PEG was a nightmare for us, and my son fell into that 5% who’s bodies ‘reject’ the PEG, so for 12 months we dealt with infection after infection, and leakage so bad he had to have a cloth nappy across his belly changed constantly all day. It ended up being completely contradictory to its need for him to have extra fluids when it was all leaking straight back out. So at 12 months after many surgeries to try and fix it and trying other size pegs the decision was made to have it removed. Which slammed me with even more guilt; that I had just put my son and our family through even more hell just because I couldn’t get enough fluids into him. The guilt we go through as parents in this journey is incredible, but really we are all just trying to do the best we can. I hope Grace’s PEG is going well, and it has helped make things easier for you all xx

[…] enough already. I quite agree. It’s yucky. And she has been through a lot. For example, the feeding tube surgery because I couldn’t feed her enough. She’ll have to have that over and over again every […]

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