Thankfully it was in the evening, as I may or may not have had an immediate mini-meltdown to the point that my husband put me to bed.
I'd say most days I do ok, but that's pretty much a lie. It's always there, under the surface. The consuming worry about my son's health and the weight of how the decisions I make for him affect it.
I feel like we are invisible, at best judged without being truly seen. There is compassion afforded to those who have more visible or better known illnesses. Ones that maybe require frequent hospitalizations, surgeries, or medications. And not to say I envy anyone those, not at all. There is simply an undeniable difference in support I've witnessed dependent on the type of illness.
We are caught between a rock and a hard place right now. More is coming out all the time on digestive health and what can all go wrong with it, but it's still so new, not even many doctors understand what it all entails. We saw multiple doctors of various types over the past 2+ years, and all of them said my son was healthy or would grow out of whatever was going on. 'Just look at him, he's alert and active!' Yes! And I'd like to keep it that way! So what does that make me? The crazy, over-reacting mom?
No one else, besides my husband, is around 24/7 to see the changes. Or to have heard the constant pain in his cry those first few years of his 4 1/2 year old life. I'm not crazy. I've taken care of kids of all kinds for almost 20 years. I know the range of normal, and I know that my son is not in that range. But he's also not enough out of it, for it to be so obvious to others who don't see him as often.
But back to the posted piece and the small hole it broke in my carefully constructed dam yesterday.
I've felt so tired lately. Emotionally, mentally, physically. There's been a lot going on the last few years besides the issues with my son's health, which probably just exacerbates everything. After picking my husband up from work, I'd mentioned the tiredness and lack of feeling happy that day, blaming it mostly on hormones. While really silently saying to myself, 'God, I just need a break.'
I remember what it was like to have a healthy child. To trust that the mood swings, night waking, off bowel movement, skin rash, etc. were just temporary and that her healthy body would right whatever was going on. I remember feeling joy to wake up in the morning and see my son snuggled in our bed, to trust that the breastmilk I provided him would make him healthy.
I remember feeling like I was finally doing some things right, after the first-child syndrome of feeling like I was doing everything wrong.
Instead, I have to be hyper-aware of changes in behavior, bowel movements, night waking, skin rashes. I have to try to determine the root cause of my son(or any of the others, for that matter) climbing in bed with us in the middle of the night. I have to carefully weigh and question everything I feed him and them. And wonder what mistakes I've made when something seems off.
I can remember one day in the past year, possibly longer, that I felt a sense of pure joy for an extended period of time.
|The day, but not the moment that I realized I was happy.|
This is what it's like to have a child with an invisible illness few understand but many are quick to judge.
(Although, to be honest, even more 'awareness' doesn't seem to necessarily help- I feel those in the autistic community are so, so poorly treated and served. And they have an entire month dedicated to 'awareness'!)
I do recognize this is no way to live, regardless of what's going on. I am working on shedding the guilt and self-doubt, so I can be happy for myself and model happiness for my children. But I want to convey what it's like for those us in these not-as-obvious trenches. It is hard, and we are tired. We don't need your quick judgments on the decisions we are doing our best to make for our families. Please carefully consider the comments, meme's, etc. you make and share in various places, like facebook. Please be more quick to offer support and encouragement to those you know are struggling, even if you don't understand the struggle.
Don't know how or what they need? Ask. Just ask. The question alone would go a long way, even if we are unable to answer it.