Wednesday, September 19, 2012
Confessions of Wonder Woman
Okay I know what you're all thinking, "just what kind of ego trip are we taking now?" Well I am actually here to derail this myth. You see of late I have been hearing a lot of comments directed my way along the lines of, "You are incredible in all that you do." or "I don't know how you do all that you do and so well." or even "no one else could do what you do." Yesterday I had a play date for Alina and when they arrived I had to apologize for the state of my home as I am in the midst of reorganizing, and we all know that means more chaos before the calm. She actually told me it was refreshing to realize I am human too as she has had this perfect picture of me and seeing a perfectly kept house would have been just too much for her.
What I want to know is how I got this reputation? I am far from wonder woman and those who know me well know all my foibles and love me anyways...but they certainly don't think I'm Super Hero status, right? I guess I'm doing a good job of putting my best foot forward for the world.
Here is my problem though, I really wish I were Wonder woman. First of all, I'd look smokin' in a bikini, but more important I'd have the answers. Right now I wish I had x-ray vision to see into my kid's minds to see what was really going on in there. Maybe then I'd have a little patience.
Yesterday, I shared a post that talked about trying for a minute to know what it's like to look good on the outside but be falling apart on the inside, like those with autism, cancer, ADHD etc... I shared it and realized this described my kids. You see they are judged daily on the same bar everyone else is, but both my son and my daughter have to struggle to reach that bar.
As my daughter flipped out over a pretend game, once again, this morning and I felt myself losing my cool, yet again, I realized two things...1) this was becoming an all too familiar pattern and 2) I was not practicing what I posted yesterday on Face Book.
You see, I too judge my kids by what my minds eye sees as "normal" and want to scream "Why can't you be more like_____________" But I realized, in a moment that literally took my breath away; it's not their fault, they have inner chaos that ___________ doesn't have. Alina has demons she battles everyday and even still sees the world in such a positive light. The same world that rolls their eyes and walks away when she throws a fit, or snickers when she counts items repeatedly, or guffaws when she tries to read out loud and freezes for no apparent reason mid stride. This same world is the one which she sees for only it's beauty and prays for all those who have it harder than her daily.
I think God shattered Wonder Woman's steel heart this morning as I realize I have NO IDEA what is going through Alina's mind or how her body is feeling at any given time. What I do know is that right now we are struggling to find balance for her. She grew over the summer and thus a need arose for an increase in medication as she was having a few seizures. But the increase in medication has made it nearly impossible for her to concentrate as she is so tired. She took a nap nearly every day this weekend and she slept an hour longer in the morning, both accommodations are not possible in her normal school day.
How about my son, who I've been exacerbated by lately as he will suddenly say really mean words or physically try to hurt someone? Maybe he is having leg pains and at that moment doesn't want anyone near him, or maybe his tummy hurts. Or maybe he's feeling tired but is three and doesn't want to admit he has to slow down. I know some of these issues are common among three year olds and their parents, what I struggle with is knowing if my son actually has something more going on than the usual.
My son possibly has a disease that we will never for sure have a diagnosis for. What we do know is we have two neurologists saying that he has many things that indicate he does have mitochondrial disease. He has basically tested clean on blood work, but that actually doesn't rule anything out as there is no definitive test for the disease and you can test clean and still have the disease. It is also possible that Alina is more evidence for the disease. It is possible she either also has it (some children don't have symptoms until 10, then there is the adult onset version) or she has "soft signs" indicating it is in the family.
The scary thing is I want to live in this bubble that we have seen the worst we will. That is a possibility, but it is also possible that this disease will progress and my son and/or my daughter will "degenerate" before my eyes. That is a thought I have pushed very far to the back of my mind.
If I truly were Wonder Woman, would I be able to tell when my kids are acting out due to physical or psychological pain versus just misbehaving to get what they want? I would hope so. But this is a striking reminder that I am no Wonder Woman, because for my kids I just don't ever really know the answer to that.