Some days I wish that I were a neurologist. I never grew up thinking, “I can’t wait to go to medical school to become a neurologist!” I was too busy growing up thinking, “I can’t wait to be become a teacher and mom!” Wahoo – goals achieved! Nothing fancy right? …just help the students/children of our future learn and grow into successful, kind, inclusive humans…noooo biggie. Well now that I’m 20 plus years into this career I feel this profession has been almost useless to me! OK, OK, not really. I find working with children absolutely the most rewarding job on this earth, I have done other jobs outside of childcare. It pays diddly squat, you get all the sicknesses and sometimes parents are ungrateful but the reward of working with children who soak up all the goodness you teach and preach is so rewarding! It’s fun and entertaining plus free hugs! I so very much enjoy working with children that I’m not even joking when I say, I prefer children to adults!!! It’s my whole truth. Back on track here though — I wish I were a neurologist, for Chrissa’s sake. She gets these wicked random headaches that quite frankly look so very painful it makes my whole being hurt for her. Why does this happen to my precious girl?
You’ve probably figured out now, if you’ve read a few of my blogs, that Chrissa is the highlight of my universe. I wanted so badly to become a mother at a young age, and I waited, and I waited, and I finally couldn’t wait any longer. At the age of 26 I had a conversation with her dad, my boyfriend of off & on close to 5 years. We were in love and he seemed pretty on board to have a baby!! So, we made it happen, obviously. And you know another thing about me? I never grew up dreaming about a fairytale wedding, or even a wedding. I never really talked about meeting a Prince charming. I always just talked about wanting to become a mom. I wanted 5 kids. Never mention of a husband, HA! Just kids in my daydream. Good thing I landed an outstandingly supportive and compassionate husband! I love you Rudee! In life, you don’t get to pick your immediate family, you’re all just intertwined and placed together in a family unit til death do you part, literally. Unless, unless there’s toxicity in your family then you curse them and try therapy and do all the things etc etc… Well, you don’t get to choose your child’s health condition or disability either. You get what you get and you don’t throw a fit. That’s how this world works. Preschoolers all across the world know this, too.
Chrissa gets these headaches that are just sometimes debilitating, like I said before, and I want to blame them on ONH and her visual impairment. Her nystagmus and her torticollis, sensory processing and executive functions disorder, I believe all of it bundled together is a cause? Maybe? I’m telling you – it is so terrible as a mom to know that your child has these symptoms that just literally knock her off her feet- put her to sleep, and there’s really not a lot in our power that we can do to help alleviate it. Ahhhhhhhhhhh. When she has these episodes, which seem to be more frequent since she hit puberty, it literally comes out of the woodworks. We were enjoying the day having a great time, everything was going well, and then boom! Out of nowhere, it hurts so badly it brings her to tears. And she is one tough ONH warrior….she’s got to be one of the most, if not the most, resilient child I’ve ever worked with. And I’ve worked with hundreds of children. I always get concerned that I should be doing more. Do you ever feel that way? Like you’re just here helping where you can but really you wish you were part of a research team in the neurology Opthalmology department, figuring out the correlation between headaches and ONH? Yeah, me too! And I’m such an over thinker that sometimes I obsessively read medical journals trying to teach myself all about eyes and the brain and how they work together and what causes blindness and why is there still world hunger… ah! Is my ADHD showing? I feel I do a damn good job but I’m definitely no scientist or doctor nor will I ever be. So, what can I do in the meantime as her parent and a mentor to so many? How many times can we go see her pediatric Nero-ophthalmologist complaining of headaches? 6 so far, he’s great always squeezes us in before he opens his practice for the day! BUT – how many times can he do an exam and say that everything is checking out OK when Chrissa isn’t OK at times? That’s when it’s time to stop over thinking and be proactive and practical. The next step is to ask for an MRI. And that is exactly what I’m going to do.
Chrissa just woke up from another episode where she gets a massive headache and she’s super nauseous. It seems like a migraine and hits her like a ton of bricks. These just come on, we haven’t figured out a trigger. I hope we do someday though. She starts getting clammy, head pounds right over her eyes, mainly over her more affected eye, she gets grumpy and almost irritated about everything in sight or smell shot, she gets what she describes as dry mouth. Oh my gosh, has she had these headache spells all of her life but she couldn’t explain it so the pain came out In behaviors??? I recount all that She does do – drinks plenty of water, eats fairly well for a 13 year old so we don’t believe it’s appetite/food issues but who knows, exercises, takes screen breaks, etc. Tonight she left Target (her most favorite place) after complaining of a headache midway thru a shopping spree. Ugh, no fun. Get home and I give her a couple ibuprofen, a couple bites of a banana or an apple to help her belly process the medicine, she lays in her bed with blackout curtains in the dark, turns on her most relaxing sleep music-Norah Jones, curls up into fetal position still crying and usually falls asleep with an ice pack on her forehead, right above her eye. And you guessed folks – I have major amounts of mom guilt over it. Why do I have mom guilt you ask? We all know this is out of our power, and beyond anything that we can control but at the same time because we are pretty great parents to our ONH Warriors, we question ourselves. Well, I do at least. Chrissa wakes up after an hour or two nap and usually feels completely fine! She’ll eat food, drink her water and perk right back up. Still low energy though. It’s bizarre. I worry. I’ve been a parent for 13 years now and I still have no idea what I’m doing. And some days that just doesn’t sit well with me…. I’m a planner and I like to know what’s coming next and with ONH and life in general I suppose, nothing can ever really be planned out. I guess I’ve adjusted well to being more flexible. I mean- I’m a very flexible person in my career, personal friendships and professionally as an advocate; as a voice to those who don’t always have one or need help using theirs. I can do back bends and triple axels now….Not physically cause I’m chubby with a bum knee, but I make transitions and change as fun and as easy I can because I understand that change is hard. Period. Any change is hard. I guess I bring this up because at the drop of a dime we have to change our plans to accommodate Life. Every parent does, ONH, disability or not. And yes, we sacrifice a lot as parents to children with disabilities. There’s one thing for certain that I’m not willing to sacrifice for my child – settling. I won’t settle. I will exhaust all outlets until my child is comfortable and living a pain free life. I don’t want to settle. Please don’t tell me that it’s probably from ONH, but we aren’t sure. I want to be as thorough as possible for the sake of my child and my own over thinking mentality. I want her to know I did everything I could. I won’t stop until I figure out why some of these things are happening. I will not take the, “I’m sorry this is unexplained” answer and go home still over thinking. I’ll create unnecessary anxiety on me, Chrissa and my family. But damnit, how I can help ease the pain faster or even better – prevent this from reoccurring?!
My parental instinct is to seek out an MRI. This has happened 4-6 times now and I want to stop it. Whether it’s an MRI (in my case), a second or third opinion from any medical professional or you feel it’s best to see a specialist – please don’t hesitate! Make the appointment, get on the cancellation lists, you can see more than more doctor and you can fire your doctor! Listen to your gut. Even if no one listens to you. Going out on a limb here….I feel that our parental instincts and gut instincts are heightened a bit more because we have children with disabilities. I feel close with both my kids, extremely, but for some reason I feel very deeply connected with my ONH child. Could it be because she’s my first? Who knows. This may sound completely out of your scope too, but personally for me, I know the universe brought Chrissa Hayden and I together because I was meant to learn to help fight the good fight. Not just for ONH Awareness, but for all people with disabilities. Hi, it’s me, hoping you see me, it’s me. (We are huge Swifties at your house. Yes! We went to the Eras Tour and it was phenomenal!!! That’s another blog, ONH + Music).
One of the hardest things to deal with is trying to explain this headache conundrum and ONH as a whole, to my friends and family. I cannot stand it when people say, “Poor Kid/kiddo”. It’s difficult enough to be living through it as a parent so when I try to explain to Chrissa why it occurs or why she has ONH (cause still unknown) i just try to stay positive. I really try not to apologize because in the end I didn’t cause her ONH. Don’t get me wrong, I appreciate the sympathy and I especially appreciate the friends (my tribe who gets it) and my loved ones who care enough to ask and not be awkward about it. But really? Anything else but those two words….Thanks for acknowledging my kid hurts, oh and! they aren’t poor – k, thanks bye! Clearly I’m getting fired up just thinking of it – “oh they are blind? Oh my gosh you poor thing. Oh wow, I’m so sorry. I don’t know how you do it! I’ll pray for you.” NO. Just NO!!! How about words of encouragement like, “she’s so tough” “you are both brave” or “let me know if I can help” instead of automatically throwing a pity party. “Poor kid” barf. It’s perfectly fine to feel sorry for someone, but you don’t have to tell them that. As my good friend Jeanette says to her son Sam, “Lets keep that thought in your head bubble!” Easy. Stay tuned for my Disability/blind etiquette and ONH + Back to School blogs coming soon. Thanks for reading! I’m hopeful some of you can relate to these topics. I’ll keep y’all posted on the MRI request and results. Fingers crossed we don’t have to jump through too many health insurance hoops to get help.