Written for “Complex Child”

We special needs parents deal with so much emotion in our lives—every day. After you’ve either received or lived with a diagnosis for a certain amount of time, these emotions seem to stabilize. (Thank goodness!) That doesn’t mean that all of those feelings or racing thoughts stop, they just change. We learn to deal with them differently. For whatever reason though, I’ve found I still have emotional triggers that no matter how many times we’ve dealt with a certain situation or been in a certain place, it triggers tears. Cry-me-a-river-style-tears.

For me, one of those triggers is feeding therapy.

FEEDING TUBE AND FEEDING THERAPY

Our daughter is now four years old and is diagnosed with a severe form of epilepsy, which has caused her development to delay at a three- to six-month-old level. During her first year of life I was able to breastfeed and bottlefeed her when I was at work. She began to take pureed foods by mouth around nine months old. She enjoyed eating. She loved it, in fact! (Clearly, my daughter.)

At 15 months old, however, she was no longer swallowing her medications, and was too often becoming dehydrated on days when seizures took over because her body was too tired to stay awake to eat. She had her G-tube placed at this time. Through this, we kept feeding her by mouth as we could and providing additional calorie intake via her tube.

Over the course of the next year, she developed aspiration pneumonia twice from inhaling food into her lungs. And many of you know the drill. Feeding stopped and feeding therapy increased. Then there was the dreaded swallow study.

Fast forward to our last six months. While we’ve participated in feeding therapy since she was a baby, it’s been focused on oral stimulation and dry swallows with the occasional tasting spoon. I’ve stayed on this journey because she enjoyed eating.

But there it is – she enjoyed. Past tense. She no longer enjoys this process. She’s not totally adverse to it all, but I don’t get any positive response either to tell me we should continue. It’s been stressful for her and even more so for me. Almost every session would involve me crying.

Thankfully, our therapist was one I felt open to tearing up in front of, but I hated that this was happening so often. We finally discussed that it may be time for a good break when I was pregnant with our third child. Our therapist was more than supportive and of course encouraged me to do whatever I could with feeding therapy when it made sense.

LIFE WITHOUT FEEDING THERAPY

Our lives are the busiest they’ve been, especially with our new addition, and honestly, I haven’t done a feeding trial since that last appointment. I don’t think my daughter minds at all. I’m doing my best not to feel guilty about stopping, although I barely have time to think about it.

For my daughter, feeding is a health risk and isn’t a space we’ve made gains. So we’ll continue all of her other therapies and check in with our feeding therapist at another time. Maybe at some point we’ll re-engage with this therapy, but for now we’ve made the choice to stop.

Erin
herestomomma@gmail.com
Hi there! I’m Erin and mom to three amazing kids and wife to the best husband around IMHO! We’re doing our best to find joy in our days and love in our hearts even when things are hard. Our middle daughter has a catastrophic form of epilepsy that affects every part of her life and ours. She’s taught us more than we could have ever learned about the importance of life, love and God. Our days aren’t anything glamorous, but I’ve learned to take time for the things I enjoy. As mom, wife, friend and just good ole’ me. I think it’s important for you to take care of yourself too – have fun, remember you’re amazing and be confident in what you wear, what you eat and what you feel. So here’s to you, here’s to us, and here’s to this amazing thing we get to do every day as momma!

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