Saturday, May 4, 2013

Mommyhood: Special Needs Style

Hey everyone. Keeping up on the blog is harder than I thought it was going to be. I think about writing everyday but I'm never sure what to say that constitutes a blog-length post. I'm pretty good at short, Facebook style thoughts :)

First off, the Yeast Beast has been up and down with Elijah. We went through the major die off stage and survived. Now, we are trying to just maintain balance, which is very hard. We are dealing with a pretty major flare up right now and it sucks. The itchy skin, the rash on his face, his legs and his diaper area, the increase in tics and OCD are enough to drive us all mad. I feel so bad for not keeping him balanced.

This leads to my main topic: special needs motherhood. I guess the timing is right with Mother's Day right around the corner. 2 birds, 1 stone.

Whether you have a child with food allergies, seizures, autism, ADHD, ODD, asthma, autoimmune disorders, etc, we all have our moments of feeling like complete failures in our ability to properly care for them. Not taking away a single thing from moms of "typical" children at all; they have their hands full of challenges too! I have a very mildly vaccine injured child, who is really only affected by slower speech development and the mild gut-skin issues, and she is a HANDFUL. However, let's throw in the special needs routine. The constant need to watch them to keep them safe, what they are eating, what they are wearing, the ungodly amount of supplements and medications, the constant verbal reminders and reprimands for things you have already said at least 4,000 times in the past hour, the meltdown control, the IEP meetings, the numerous doctor and therapy appointments, making sure your child has emergency medicine and access to someone trained to assist them at all times, and to be redundant, THE FOOD....and the list goes on and on and on. It's so very stressful and beyond any word to describe the exhaustion. It takes a physical and mental toll on every single one of us.

As mothers, we take on so much burden and worry in the care of our children. It's in our nature, it's what we are supposed to do. And when we drop the ball, even a little, the guilt consumes us. We will even blame ourselves when in all honesty, that seizure in the middle of the grocery store was not your fault at all. Or that meltdown at the restaurant. Or that damn stupid toy he just HAS to have at all times that broke this morning and now the world is just ENDING for him. Or that group of kids at school who refuse to play with him because he is "weird." We take it all. Every bit of pain and heartache our children suffer, we suffer double. And worse, we blame ourselves for it all. If only I had seen the signs of that seizure, if only I had ordered the right kind of chicken nuggets at the restaurant, if only I had bought more than 1 of that damn toy, if only I had put him in a better school with nicer kids. If only. If only I hadn't caused this disorder in the first place. If only I had known better. If only I wasn't such a crappy excuse for a mother. If only I hadn't let them harm my baby.

Moms, I'm not here to tell you to stop the guilt train. That would be hypocritical of me because I know that I ride it every single day and it will never stop until the day I die. If it's not the vaccine injury, it will be something else. It's what we do. But I do want you to remember that YOU ARE A GOOD MOTHER! That yeast flare up? Yep, my fault. I feel terrible for the crap he will have to endure before getting back in balance. But it wasn't malicious. And I want him to feel better. I don't close my eyes to the fact that this is a problem we will be facing forever. I won't just give up and let him just suffer the symptoms of his injuries. I will never stop fighting for his health and recovery. He will get better. If he never completely heals, at least he will be in far better shape than when we started. That, ladies, is good parenting. The blame and guilt will follow us, but we will not let it define us or our kids.

Every single vaccine injury is treatable because they are medical. I will not say they are curable. And every child needs a different set of supplements, meds and therapies to get better. But we are GOOD moms because we strive every single day to research, learn and implement our knowledge the best we can to help our sick children and often, other children and parents as well.

We are our own worst enemies and critics. Even on the good days with new milestones met, we tend to look at everything else that isn't right and feel bad. Let that sadness, guilt and blame drive you, don't let it conquer you. Keep your chin high and your wine glass even higher. Keep fighting the good fight. Happy Mother's Day you amazing women!


Elijah. Photo taken by Dana.

No comments:

Post a Comment