Like most women do, as soon as I found out I was pregnant I immediately went into protection mode. I did what I felt was best for this little being I was entrusted to carry for 9 months. I took my vitamins, ate mostly "healthy" foods, I thought about exercising (hey, that's more than I normally do). We decided what tests if any we would have throughout the pregnancy, if we would have ultrasounds, etc. We began the lifelong process of doing what we felt was best for Sonya.
Normally our decisions are the "typical" ones; yes to vaccinations, yes to antibiotics when necessary, yes to doctors....If I have a slightly different view point then the pediatrician, I don't feel the need to voice it, I just take his advice and move on. I don't like confrontation. I don't want to be difficult, so I just go with the flow, even if I am not 100% on board.
Lately we have been faced with making choices for Sonya based on being told that the benefits outweigh the risks. Who are we to argue with a specialist trained in neurological disorders?! They said Sonya has seizures, here's a drug..."what are the side effects?"..."oh just some
Irritability...maybe some tiredness..." "Ok we said...it's what she needs." Then she needed a different medicine, "what are those side effects?"..."cognitive slowing...but it's rare..."..."okay, and the benefits still outweigh the odds?...so let's do it".
I have felt pushed up against the wall, having panic attacks where I can't breathe. Sam and I don't really think it is worth it for Sonya to have all of these side effects when the fact is, she is never going to be seizure free from any of these cocktails. Realistically, the odds of her being seizure free after her "honeymoon" period are rare. That's the fact of CDKL5. It is ugly, there is no cure. It is the cause of refractory (uncontrollable) seizures. So, I am having a difficult time rationalizing that the benefits of some of these drugs we could see in her future outweigh the risks. I can tolerate her sleepiness, even her being cranky...but what benefit is there to blindness, early puberty, heart problems, stomach issues, or death?!
To be the mom I need to be for Sonya, for all of my kids, I can't just cowar in the corner and "go with the flow". If I have an opinion that isn't in the majority, I need to say it. It is my obligation as a mom to be the voice for my kids. It isn't being "difficult" to say "you know what, I don't agree with these medicinal choices", it is actually having strength.
We all as parents need to stand up for our children, we know them best. We are the ones who spend hours upon hours researching activities, schools, bedtime routines, foods, clothing, and life
In general. We wipe away their tears, give them boo-boo bunnies, and brush their teeth. We are the ones they rely on to make the best choices for them.
We are our children's voice.