I'm feeling a little lost these days. I used to be a stay at home mom to a special needs child being kept alive by machines and heart surgeries. Now, I'm the bread winner and my child is gone. When Tommy was alive, my life was a bubble. It had to be for him. I stayed in the same room with him, feet away, constantly watching him and listening to his breathing. I had very few friends, and the ones I had before Tommy was born started to drift away into their own problems and lives, so I turned to the internet.
I joined a few online support groups and forums. My new friends were stay at home moms, homeschooling moms, moms with trached kids, moms with kids with heart defects, blogging moms...you get the idea. I thrived in this online community in the days before Facebook. We posted and emailed several times a day about our kids, supporting each other and offering advice.
Then Tommy died. We moved. I started working outside the home again for the first time in three years. The kids went back to public school.
I'm still struggling to figure out where I fit in. I find myself checking in on the forums less and less. I feel like I have nothing to offer. When I think I have advice to offer to someone about my experience, I feel like they are going to ask me "so how's he doing now?" Umm. He died. Never mind, sorry I bothered you with my advice...ask someone with a living child.
It doesn't matter if it's about our experiences with a trach, tracheal surgeries, feeding trials, speech therapy, heart surgeries, lung issues, sensory issues or any of the other many experiences we went through. I just feel like we've been kicked out of the club. I can no longer post about feeding the bed with the tube feeding the night before. I can no longer talk about waiting for the next heart surgery or how I feel when it's time for a heart cath. There's no need to discuss nursing situations, much less what curriculum I'm going to use for the kids when school starts again.
Don't get me wrong! I still love the friends I have made through all of my experiences and want to keep them a part of my life. I adore Facebook and the ability to stay in touch with everyone I've met. I guess I'm still struggling with finding my place in the world. I've posted about it before. I just don't know my place in the world anymore. I still have a special needs child at home, but his needs are so different from the ones Tommy had. I don't even know if it's correct to call Brandon special needs. He has behavioral issues, but he doesn't require any intervention to keep him alive or improve his quality of life. Medications, yes, and he sees a therapist, but outside of that, he functions just like any other typical kid.
WHO AM I?????
Can I still call myself a heart mom? Can I still say I am the mom to a special needs child, even though he is gone? I feel like I didn't move on from the past, but it let me go. Kicked me out against my will. How do I participate in my own life when I don't know what that life is supposed to be?