Someone asked me the other day, "What does being a mom of a special-needs child look like? What do you do differently? What do you watch out for?"
I thought I would try to summarize in a blog post, but that will probably be difficult. I like to talk, and summaries aren't my strong points. ;)
As most everyone knows, Brooklyn has seizures fairly often (1 every 6-8 weeks). As a result, we have to always be prepared for an emergency. She has a syringe preloaded with an injection that we can use to stop a seizure that we carry in her diaper bag. She also has one I keep in her room. Anyone that keeps Brooklyn has to know how to use that. We also know how to check for breathing issues and her pulse, etc (most people know to do that anyway, I hope!). Her doctors are all programmed into my cell phone and know Brooklyn's case pretty well. I have the number memorized to page a doctor on call at the hospital. And blood doesn't gross me out anymore.
One thing I've had to learn, that doesn't come easy for me, is that nothing can be a set plan when you have a special-needs child. If Brooklyn has a seizure, everything for the day gets dropped and rearranged. She usually has to go to the pediatrician or the hospital for a neurological exam following a seizure. Sometimes she has to have testing done afterward. I am a planner, and as petty as it sounds, it is really hard for me to live life knowing that it all can change in the blink of an eye. For example, the last time that Brooklyn had a seizure, I had her out with me running errands. She was in the shopping cart while I was looking for summer shorts. She went limp, unconscious, and bit her tongue. Blood went everywhere (your mouth bleeds a lot, even if it isn't serious) and people started staring. A nice lady went and got me paper towels. About the time I got all of the blood cleaned up, Brooklyn threw up all over the floor, and then fell into a deep sleep fairly instantly (seizures make you very tired). In 5 minutes, the day had gone from shopping and running errands to driving to the hospital, jeans spotted with blood and puke stains, while having the physician on call paged. They have a flag on Brooklyn's chart that she is a seizure patient, so she is taken right back when we arrive at the hospital, and the security guard parks my car. How quickly a few minutes can change everything.
And all of this for a mom who doesn't even like to have to white-out things in my daily planner. ;)Another thing that I've had to do with Brooklyn is make a notebook of her complete medical history, phone numbers of doctors, instructions to administer an injection, copies of insurance cards, etc. This way, if she is ever away from me and has an emergency, her caregiver has everything he/she needs to communicate her special needs to medical personnel. It is also helpful when she is sick after a seizure and crying to just be able to hand her history over to the
physician on call and let them read through it.
Brooklyn also has a special tag on her car seat in case of an accident that alerts paramedics to her special medical conditions in case I am unable to explain.
Since Brooklyn is unable to drink liquids at a normal consistency, I take her cup with her places with thickened liquids in it. It helps her to swallow them without aspirating.
Those are the major things. There are also minor things, like watching for her left-sided weakness and correcting it when she is sitting incorrectly, etc. I am a physical therapist in training. ;) When she is playing in the floor, and she tucks her left leg out to her side, everyone else thinks she is just sitting sideways. I know that her left side muscles are weaker and she is using that leg to prop herself up. So, I tell her to "fix your leg" and move it back out to normal position.
There are other small things too. Since she is having trouble hearing, I make sure she is looking at me when I say something, and I use gestures whenever possible. When she does make noises on her own, we cheer and make a big production out of it so that it will encourage her to do it more. She still has a little trouble sitting in the bathtub, so we have a sticky mat on the floor and someone has to keep their hands on her so that she doesn't slip.
I have file folders of her progress in speech and PT, and talk with her therapists and doctors frequently.
Any mom would do these things for her children, anytime. That is what makes us mothers.
I've been blessed to be on this journey with other moms as well, and have drawn inspiration from their strength.Another thing that special-needs moms have to worry about is their other children and their reactions to the whole situation. I never want Savannah to feel neglected because she doesn't need as much attention, the therapy, the doctors visits, etc.
She is every bit as important to me.
Being the mom of a special-needs child isn't easy. That being said, I've been so blessed to see what a fighter that little girl is. She has to work so much harder at everything, but she does it. She doesn't have a lazy bone in her body. And the accomplishments are so sweet, because they are fought for. And she is doing remarkably well. Doctors didn't expect her to be walking already or to progress so much in PT. Her speech still lags behind by almost a year, but she has surgery scheduled at the end of this month that may speed that up a bit. We shall see. But even with all of Brooklyn's adjustments, I wouldn't trade her for the most perfect, normally developed child in the world.
Because to me, she is perfect. She is just on her own little timetable.
And she always has been.
