You might be here because you were recently given a diagnosis that scared the shit out of you. You might feel pretty overwhelmed or like you don’t know what to do next.
In 2016, my youngest son was diagnosed with epilepsy (and he had already been diagnosed with asthma and autism). It was scary and overwhelming and I was utterly filled with a mess of emotions that included fear and even rage. What the hell was going on? Why us? Could this be wrong?
Nine months later, my youngest daughter was diagnosed with a rare blood cancer called Essential Thrombocytosis (aka Essential Thrombocythemia). Not only is this a rare condition over all, but it’s what our oncologist called an “old people’s disease.” It was one of the last things she tested my daughter for, because it’s that rare. Batgirl is literally one in ten million.
So I know what you’re feeling right now.
You’re not sure what to do now that you have this shitty diagnosis.
First, you need to give yourself permission to feel however you feel. It doesn’t matter *how* you feel. How ever you feel is the right way to feel, and you should never, ever let anyone tell you that your feelings are invalid. Cry. Rage. Go out into a field and scream. Break something. Just *do not* harm yourself or anyone else. Or break something that you might regret later, like Aunt Jane’s precious vase or, you know, the car. Feel those feelings. It’s okay.
Next, you need to put on your big girl panties (or big boy boxers, whichever you prefer), stand up, and take one step in the right direction. This seems like a small thing. Moving toward acceptance or positivity or action or wherever the right direction is for you seems like it’s pretty easy, once you’ve given yourself a moment to feel your feelings. But I’m going to tell you that the first step is a bitch. You’re going to think you’ve taken it, that you’re moving forward, when all of the sudden you’re knocked on your ass again and you are back at your starting point. The pain, the anger, the fear is real, my love, and the first step is really hard.
At some point, you’re going to need to tell someone that’s not your spouse (or your kiddo’s other parent, no matter your living arrangement). Someone who can be supportive of you. This might be your best friend, or your parent, or your neighbor. Pick carefully. You need support right now, not questioning of your information or motives or choices. Because right now, you may be busy supporting your spouse or your sick kiddo. It’s essential that you tell someone. You need support more than you know. Especially because it’s gonna get a bit tougher for awhile. If you don’t have anyone, start with me.
You will want to lock down your social media. Yoda’s second seizure was at school. People knew what was going on before we made it to the hospital. We left the hospital with our diagnosis and a lot of unanswered questions. Once we were home and had some time to process, I logged into Facebook to tell *my* person and I had a dozen friend requests from people affiliated with our school (either parents or staff). I thought “Wow, these people really care about my kid.” But none of them ever actually said anything. Not even a “Hey, we’re thinking about you.” They just wanted to be nosy.
Be prepared for disappointment. We very quickly learned who our true friends were. We had countless messages in those early days, from people wanting to know how they could help. In the early days, we were too overwhelmed to know how to answer that question. But in the following weeks we began asking for help-and got a lot of silence in return. We were, and remain, grateful for every bit of help we got.
Be prepared for small things to overwhelm you. I went to our local grocery store and the cashier, who we’ve known for ten years or more, said “Oh, hang on, I have something for you.” She walked us out, and grabbed an envelope out of her truck. It was a hand-written note from her elderly mother, letting her know that she was praying for us. I broke down sobbing right there on the sidewalk. In the midst of all of the looky-lous and the crickets resounding from those who had offered to help but backed out when we needed them, the gesture of offering prayer, and taking the time to write me a note, meant everything.
You may want to hide for awhile. For several weeks, we just kind of closed in on ourselves. It gave us time to deal with our feelings, to help the kids deal with theirs, and to find our new definitions of
normal, of ourselves, and of our friends. We made new rituals. Blood draws means ice cream. Emergency room visits mean you get dinner of your choice after release (or when doc clears you for a normal diet). Bone marrow biopsies mean you get a movie of your choice.
Become a dedicated student of your child’s condition. I know more about epilepsy and essential thrombocythemia than I know about Star Wars, and that’s saying something. I’ve read medical journals (Google is your friend when you’re trying to figure out the definition of polycythemia vera or hypotonia), watched YouTube videos, and found parent support groups where I learned even more. While you have to trust your specialist, it’s important that you have basic knowledge. No one will be a better advocate for your child than you will, and for that to happen, you have to know as much as you can.
Find a support group. For epilepsy, it was easy for us to locate our state support group. The only problem is that the closest meeting is about three hours away. So I found some online groups (Facebook is a great source) that gave me the opportunity to ask questions about meds, how to find a great doctor (we’re on our third neurologist), and see if a side effect was a normal expected reaction or something I should be concerned about. For Batgirl’s blood cancer, the condition is so rare that online was my only option for finding support. Thank goodness we have the internet to allow us to have that kind of support.
Tell other people *as you’re ready* to. People will come up to you and ask, and you only have to answer questions to your level of comfort. Let me say that again: you are under no obligation to tell anyone anything about your child’s medical condition if you don’t want to. Some folks ask about one of the kids, and I know they are actually showing support. I share more info with them. Those looky-lous and nosy folks get the bare minimum. I tell them the kids are doing well today and thank them for asking.
Be prepared for everyone to become an expert. I’ve had people tell me about remedies they were certain would work, second-guess our decision to medicate (or not), ask the kids’ vaccination status, and ask if we had considered the possibility that one or both kids were possessed.
Learn your rights. When it comes to your child’s education, your insurance coverage, your ability to have a service animal in your rental, and your ability to medicate your child how you see fit. There are various groups on Facebook that can help with many of these issues. Learn your insurance company’s appeal process in case they turn down a medication or treatment. If your child will need help accessing their education, you may need an IEP (Individualized Education Plan). Work with your school nurse to develop a health plan.
Realize that even after you get past the initial shock, outrage, fear, and whatever else you may be feeling, that you will still have bad days. A health setback, curious questions, or even absolutely nothing can cause you to have an emotional day. And that is totally okay. This is where your support person is important. You will need them way more than you realize in the beginning. I can send my person a message that simply says “fuck epilepsy” and she will not judge or even ask what’s up, because she knows if I need to tell her more, I will. Maybe I just needed to get that little bit off my chest. She has been the one to listen when I cried or yelled or just needed to vent. She was always there. She even came and picked us up once when we got released from the hospital a day earlier than we planned on. But also realize that your person may not be enough. My therapist says that many special needs parents suffer from PTSD. I also have anxiety, and take medication for it. That’s okay, too.
Finally, you need to remember that you are stronger than you realize. I’m not going to give you that bullshit about how God only gives special children to special parents. I heard that so many times in the early days and I just wanted to throw up every time I heard it. It’s an empty platitude to someone who is scared, mad, and second-guessing everything. But you are stronger than you realize. You’re going to feel tested, bent, beaten and bruised many times in the next six to twelve months. But one day you’re going to wake up and realize you’re a little less pissed than you were yesterday. Or you’re going to be able to find joy in something small. Or you’re going to realize that you only cried in the shower once this week. Any of these are victories. Your backbone will strengthen and you will come to realize, at some point, that everything you dread may happen tomorrow, and that you’re going to have to live through that, just as you lived through the diagnosis and the days that followed.
And you will live through these early days. They may feel dark and cold and lonely and so fucking painful. But you will live. Because you must. Because you are who your kiddo has to guide them through this thing that is also scary and confusing to them. You are that light shining through the darkness to them, even if you do have to go hide in your closet to sob for three minutes every afternoon.