It’s nearly 2 years since my first post and I’ve been reflecting on where we’ve been to where we are now. That panic and fear that gripped my stomach as I read more and slowly realised what was wrong has not left me. It’s still there everyday and I am so tired of that feeling I can’t even begin to tell you.
When I look back he was so ill, the real him completely overtaken, I couldn’t see my own son anymore. In the hospital for all those weeks, fighting to keep him still, fighting to get calories into him. Then getting him home and those awful months watching the torture he was going through, trying to drag him back to us and get his weight up. All the setbacks we had and the arguments over his swimming and what to do, the IP fiasco, the completely unorthodox methods we finally settled on. Feeling like an absolute failure time and time again, like a bad parent for going against the grain, like I enable his ED instead of fighting it. I feel like the effort and sacrifices we all made should have resulted in something much more than we’ve got. I look at what he weighed this time 2 years ago and what he weighs now - he’s gained 14kg in 2 years - 3.1kg since this time last year. I hadn’t realised how little he’s gained this past year. To put it simply, I feel we are clearly stuck. And whilst I continue to try and see positives over negatives I can’t help but feel sad, tired, frustrated and dare I say it, a little hopeless.
He’s not physically unwell, medically he’s fine, he’s eating a limited range of healthy foods, we’ve managed to increase that range over the past year using a laddering approach, his self awareness and coping mechanisms have improved somewhat though he gives in too easily to his compulsion. He’s not back on his growth curve / weight restored (though CAHMS say he is in normal range and are ok with it), unable to eat “unhealthy” food, exercise compulsion is a barrier to weight gain. He hasn’t grown in height for 2 years. That tells me he definitely isn’t weight restored, his state, although better, is still very much ED, I’d say 70% of the time is ED, 30% is him now.
He turned 17 a couple of weeks ago and now time is really ticking to get him to a much better place. He has managed to get back above his limit for swimming which starts up again next week. I’m hoping this will jump start a renewed motivation to gain more to add that 4th session he’s been aiming for. I have been drumming into him that he’s so close to his limit he’ll fall under as soon as he starts training again if he continues to battle us on the amount of food we’re giving him. I keep trying to introduce higher calorie foods but he insists he doesn’t want to “give in and do it the easy way”. He wants his idea of healthy food and nothing else. That means, no junk food, no processed food, no sugar, no ‘bad’ fats, limited red meat, only water to drink & limited starchy carbs. Then he battles us on the volume of food. It has to be higher volume otherwise he doesn’t get enough calories. This is such a difficult thing to manage because if I push too hard he simply won’t eat and then he loses weight, but I know he will never recover fully if he cant eat a full range of all types of food. It’s harder now he’s older, I have to tread so carefully to keep him on board and I know you’re not supposed to negotiate or give them a choice but it’s so much harder with a 17 year old boy with a mind of his own, on the cusp of adulthood. I need to find that sweet spot to keep his trust, to keep our relationship on an even keel because this is going to take longer a year and I cannot watch him pull away and fall down a hole as soon as he turns 18.
I know they say it takes an average of 7 years to recover but this 3rd year in I feel like for my own sanity I need to see some more progress to be able to keep going. I don’t think I can keep doing this, keep up this same momentum if we stay in this limbo. Stage 1 surely shouldn’t take this long! I just want 4 things this year, just 4.
- To see him achieve weight restoration soon,
- To see him laugh and enjoy physical activity because it’s fun and not because he “needs” it, or feels like he has to do it, or as a punishment for eating something.
- For him to tell me he’s so hungry he could eat a horse after training like he used to when he was younger
- To see him let go of that control and eat something outside his limit
That really isn’t too much to ask is it?