Dear Rare Diseases and complex medical issues,
Leave my family, my children, the F**K alone!
I am so tired of not knowing what is wrong with my children. I am tired of knowing more about something that most doctors (even if that is just the name of a disease). I am tired of finding out that the only people that have open doors for my child(ren’s) issues are across the country, or halfway across the country at best.
I am tired of people, including doctors, telling me “But they LOOK so healthy…” Well, yes, they do, thank God for that and I work my butt off to make sure they stay that way. You aren’t here in the middle of the night as my child throws up over and over again. You aren’t there to wipe their bleeding butts. Or there to pace for hours back and forth with a baby that is in so much pain he can’t sleep. Nor are your here to go with me to the grocery store and be frozen in fear…what do I feed my children? What is safe? Then to brush off that fear and go and read label after label knowing that you need to soldier on and find safe food.
Now we are on a new journey. One of the immune compromised. One where masks and obsessive hand washing are going to become our new norm. Am I scared? Heck yes. I feel like I am going to throw up. Before a fever, was just a fever, and as long as it didn’t get too high then it was a helpful and wonderful thing. Now a fever means we head to the ER because Baby Bear’s system may not be able to fight things off on its own (of course that means we are in the hospital and going to be exposed to more germs- so yay all around!).
As I freaked out last night in bed, listening to my son sleep while he lay beside me, I wondered what life would bring, if I would lose him, how I was supposed to treat him…and it hit me. My son was still the same. We have been going through this for over 2 months and not knowing it. Now that we do, we can take precautions. But my son, my dear little Baby Bear was and is still the same. He is still a baby that will smile at the nurse through his tears after she takes his blood. He is still the same baby that wakes me up hour after hour in the middle of the night needing to be fed but right when I am so tired I don’t think I can handle it anymore he will smile up at me and pat my face and then finally fall asleep (or start laughing and crawl to go play). He still amazes me with how fast he is learning things. He is still my baby!
I cried to a friend of mine who also has a complex child, “This gets easier right?!” She replied with a no-nonsense, “It doesn’t get easier, you just get better at it. And so do the kids. You’re going to be ok. I promise” It made me cry, but in a good way. She was right. This isn’t easier. But I have gotten better at things. And I will keep getting better at them, our whole family will, because we have to!
I know we will fall into a new normal. Because it happens every time we get a new diagnosis. We WILL find our new normal. And that is ok.
I am the mother two wonderful and Rare children and am honored to be the step mama to two awesome teenagers.