Over. Whelmed.

Feeling a bit overwhelmed at the moment. I have 5 full time jobs and I’m under performing in each of them. I’ve never broken it down before but I realized that I have to be a mom, wife, employee, nurse and personal chef all at the same time. When you are juggling so many things at the same time, it’s nearly impossible not to drop something.

I have let Oliver’s diet/seizures/medical issues consume me and spend about 23 hours per day thinking about how to fix the problem. It’s so difficult to read advice from other parents on the keto group mailing list, and try to figure out why our keto team never told us these things. Finding the perfect version of the diet for Oliver is proving to be way more difficult than I thought. There are SO many elements. The medications he’s on, the vitamins and supplements he takes, the artificial sweeteners in various products, the carbs in the preservatives in various foods….all contribute to reasons why the diet may not be decreasing his seizures. Then we have wildcards like the antibiotic he’s on now for his ear infection and Jason forgetting the cream part of his breakfast on Saturday morning. It’s a wonder that anyone ever gets seizure free on this diet.

Beyond the diet we still have to deal with Oliver’s lack of development and the fact that we don’t do therapy with him daily like we should. We spend so much time trying to get the food and fluids and medication into him, when he has 5 minutes of downtime we just stick him in his bouncy seat or on his playmat to have a little bit of time to JUST BE A BABY, rather than work him out. It’s very hard leaving him at daycare every day worrying about how his meals are going to go and if he’s going to get enough tummy time and water to drink throughout the day. But if I were home with him I’d be even more overwhelmed with figuring out the exact combination of foods and medications to get him seizure free. He may never even BE seizure free. Maybe we focus so much on the diet and the seizures because facing the facts that he’s 12 months and still developmentally like a newborn is just too hard to face. Last night I stumbled on some videos of Oliver when he was just a couple months old. The way he was moving his arms and his facial expressions are the exact same things he does now….9 months later. He hasn’t changed at all. Except maybe he lost a few of those things and slowly gained them back? Who knows, it’s just really frustrating. At the same time I keep trying to be grateful that my son currently eats on his own, breathes on his own and performs basic life functions without assistance of tubes and machines. Who ever knew that someday I’d just be so grateful that my kid can eat on his own while other parents are sad because their 13 month old only has 3 words! It’s funny what a bit of perspective this whole diagnosis has given me. Though I’d rather be blissfully ignorant of all the bad in the world and would gladly give up my new wisdom for a healthy child.

I read about women who have husbands who are blissfully ignorant about the extreme amount of time that goes into caring for a special needs child and I’m happy that I have a true partner who helps make meals, gives medications and goes to doctor’s appointments and therapy. It’s probably good that he doesn’t spend as much time reading and talking to other people online about the diet and the seizures because he gets to have the mental break of not having constant emails flooding in about seizures and meds and symptoms. I still feel like I would miss too much if I weren’t on the lists so I have to read about it all day long. But it makes me less of a fun person. All I can do is think and talk about Oliver and his issues and the best way to help him. It probably doesn’t make me very fun to hang out with. Maybe someday I will be able to be much more “zen” about this but I think that would require a very large personality overhaul.

Monday night we experienced within just 4 hours what could be considered a prime example of the extreme ups and downs we go through in our lives. I arrived home from work to find Oliver playing on the floor waving his arms around on his playmat. I said hello to him and then was greeted by a big hug from Tobin. Jason was just starting to cook dinner so I started working on Oliver’s meds and keto meal plus the weighing and measuring for all the stuff he needs the next day at school. Tobin was happily playing by himself in his playroom. I walked into the living room because it appeared Oliver had fallen asleep on the floor and when I got closer and started talking I noticed he was peeking out from behind his little arm with a smile on his face. I called everyone in to look at him because it was just so darn cute. He smiled at us some more and then laughed. It’s moments like this that make me think things are going to be ok. Everyone is happy, things are fairly calm and though we have a lot to do, it’s not overwhelming. Oliver did eventually fall asleep so Jason, Tobin and I had a nice dinner. Then, as we were starting the dishes, Oliver woke up. He woke up very sad and upset about something which he does time to time. Usually these fussy periods last for about an hour and we have no idea what’s causing them. He just cries and cries with nothing that can stop him. It’s at this moment that our life goes from fairly enjoyable to chaos. Because Oliver is due for medication Jason starts giving it to him even though he’s really upset. This results in Oliver throwing up within a few minutes of his meds and us stressing about whether to re-dose him or not. In the meantime, we’re reworking our whole idea for a keto dinner because it’s hard to get Oliver to sit and eat a pureed meal when he’s so upset. So I tossed out everything I had just made and got a bottle of the ketocal formula ready for when he finally settled down, then rapidly started trying to do the dishes so we had enough bottles for daycare the next day. Meanwhile Tobin had finished watching a few episodes of Caillou on my laptop and needed a bath but was giving me a hard time about getting in the tub. I was asking him to take a bath first, then settle in to watch his tv show before bed but he wanted to do things in the opposite order. So then I had both boys crying, a sinkful of dishes, a cat that needed water from the bathroom sink and keto meals that still needed prepping. It’s moments like that when I feel as if we can’t go on like this much longer and the medical issues and the diet and everything else just seem to be TOO MUCH. So that’s a typical day in the life of the Saxtons. Some days are more like the first half when everything goes along smoothly and we run like a well oiled machine, everyone contributing happily to the chores and peace in our home. Other days are complete and utter chaos with everyone snapping at each other and lots of tears all around. I can only hope that as time goes by, we start to experience more joyful days and less sorrowful ones.