Most days I get home super exhausted. After work, I brave the long commute as I rush to the market to buy food for Maia for the following day, and when I come home I check her seizure diary (she has around 5 seizures a day), feed her, play with her, make sure she is clean and put her to bed. I then prepare her supplements and medicines for the next day. Motherhood is altruistic.
Having a special child requires more time and attention. Others may wonder why I rarely bring Maia out. Others have so much ‘whys’. It’s really hard to understand when you are not a parent of a special needs child, but I have found comfort in God, my own family and real friends, and of course my PCCS family, no doubt. Apart from the emotional crisis, hubs and I have to work both because all the expenses are not small, if you only knew. Our challenge for now is to determine what’s causing her seizures which would require numerous tests, and it’s not cheap. Maia is diagnosed with seizure disorder(idiopathic), autism, and global developmental delay. At present she is still nonverbal.
There are a lot of factors that can trigger her seizure attacks – noise, no enough sleep, hungry stomach, weariness, diet, and yes even improper dosage of AEDs. I am also careful not to come home with a troubled heart, because they can sense it and it affects them too. Imagine how you can do it! Her fits can go from 3 to 9 minutes per episode. Those are just the basic reasons why she usually just stays at home.
Sometimes..we take her out. I wanted her to feel the grass again. She may not walk straight, but I know by God’s grace and perfect timing, she will get there.
I pray that God will take care of everything. He knows what’s best.
the dreamer mom