NoTube Eating school day 9 (chapter 2)

Elodie was waking up on her own around 08.30, she is used to the new routine now. Just a few more days to go, and we have finished this eating school, time really flies.

This morning she ate a few slices of ham while playing games on my phone. Initially she just sat for 2 minutes. So I was glad she wanted to stay put for a bit longer. Even though she was standing behind the chair, instead of sitting on it.

During one of the mother sessions we discussed the progress our children had made at NoTube during the eating school. It’s good to hear that all the children have made steps.

Another topic we discussed which I relate to is that it’s so difficult to enjoy your child due to all the worries we have about our child. You are so consumed by anxiety and worries, your energy level is low and there is no end in sight.

The worst part is that nobody understands. The comments from other people like, my child didn’t eat much either, my child only eats potatoes, or spaghetti, my child doesn’t eat vegetables. We could only wish our child was like that. There is a big difference between a child who really eats nothing and a child who is picky but gets enough nutrition, and can gain weight on his own.

One of the French mums said that even her own mother didn’t understand the situation, telling her to go in holiday with the family, to relax. But how could she be in the mood for a holiday when her son doesn’t eat. How can you enjoy sunbathing while you know your child hasn’t eaten all day, and he needs to gain weight for an important operation? This really shows that only people in the same situation understand you. We have noticed this last year as well, finally talking to people who have the same problems and worries was strangely soothing.

For instance, we had to travel by plane because our luggage wouldn’t fit in our car. We need to bring so many additional things, like foods and drinks that she likes in case we can’t buy it here, the medical nutrition for an entire month, lots of clothes because we need to change it three times a day sometimes. I even bring along our own nappies, wipes and washing detergent, I really don’t have the headroom to buy it here. When on site I don’t want to think about getting those things.

Also, my mother doesn’t accept that Elodie has an eating disorder. She still feels it’s the parents’ fault, so our fault. Instead of listening to how we approach Elodie’s eating with NoTube’s guidance she still tries to do things her way. She can’t let go. If Elodie doesn’t eat in the morning and afternoon, we are okay, because she gets 300 calories from the medical nutrition drinks. Her obsessive behaviour really triggers me because I am trying to let it go. Not to mention the unsolicited advice we get. Caring for a child with special needs is already challenging enough, it’s draining, and we often feel like we are drowning, we don’t need extra drama. So, it was actually good to hear that I wasn’t alone and that other mothers experience the same.

I could only start to see and enjoy Elodie more with my husband on furlough due to COVID-19 and seeing her weight increase and stabilize. We also have social workers helping us out. They have to point out what they see and like about what she is doing because otherwise it’s still difficult for me to see. We are making little steps here, it’s not easy, but we will get there. As Elodie makes little steps every day trying new foods, I try to make steps to overcome my anxiety and worries.

I just want to point out that the eating disorder is not the only thing that affects a family, there are many other aspects in our lives that are impacted by it. Life is so much different, you live from meal to meal. What will she eat, how much will she eat, she didn’t eat enough, the sadness, the feeling of being powerless it’s so consuming.

Nevertheless, we are lucky that we live in this era, because 200 years ago, maybe even 100 years ago, children with these sorts of eating disorders probably wouldn’t even survive.

One mum said something so true, it really humbled me. Her 4-year-old incredibly cute daughter is Elodie’s best friend here. She heard another mom at school complaining about that her house wasn’t tidy, and she had so much to do. So she said, my daughter had cancer, she is better now, and she might live very long, but you never know if it comes back, there are more important things in life, try to enjoy it the rest is just not that important. Like, wow, just wow. The eating disorder and tube feeding weren’t even mentioned yet. They have been through so much.

This was a great eating school, we have leaned so many new things still. All the families in this eating school were great, everyone was down to earth and so nice. There was a great atmosphere. The kids got along very well and apparently some were missing each other when they weren’t at the eating school. It’s saddening that we will have to say goodbye soon.