Still in the Dark

I'm getting a lot of questions, so I guess it's time for another update... (If you don't know what I'm talking about, you might want to start with Hard News.)

I've put it off because there's not much new information, and I don't feel like I'm handling it very well (as you will see). We had a particularly bad doc appointment Friday, so I finally came home and wrote something up. I've debated whether to share it, especially when I reread my last update and it sounds so composed and succinct. But lest you think that's always how we're doing, I've decided to go ahead and share some #reallife, starting with...

A LITTLE VENTING

I've always thought of us as a healthy family. My kids rarely get sick, and our family histories are simple. I've also assumed healthcare is amazing. After all, my husband is leading the charge to make all sorts of breakthroughs, my interactions with healthcare have had happy endings, and we have friends and family members who were diagnosed with cancer years ago but are still tickin'. Modern medicine is miraculous.

So I thought. This fall has been a culture shock. Josh has a bum hip that may need surgery, Isaac has mysterious bumps on his face, Katherine has had little interest in motor milestones, I've had a headache off/on for about a month, and Aaron's headache/vomiting episodes are coming fast and strong. Our only completely uncomplicated family member is the one most likely to think he's ill.

And what does modern medicine have to offer each of us? Zilch. But what do we have to do to make sure we haven't missed anything helpful? A TON. 

Ok maybe not zilch, but it's close! I'm just so...disappointed. How can they really not know what causes headaches or how to stop them? or what causes developmental delays and how to fix them? How can they not be able to remove a tumor? And are we really basing these diagnoses and "treatment" decisions on how good my notes are??

I didn't expect to get so sick of it in just 8 weeks. I've been spoiled. Many of you learned these lessons long ago. ALS, dementia, Autism, CF...to name a few. There are still oceans of mystery in healthcare. On some level, I knew that. But right now, I'm angry that all these great systems and experts need us to do so much so they can tell us how little they can do but how much more we will need to do going forward.

It's exhausting. Sometimes I wonder if we'd be better off if we'd never done all these consultations and tests. Possibly.

Yet how can we not pursue it? Josh needs to be able to walk. Katherine too. I don't want to live with headaches. And most of all, Aaron needs help. Not a medicine to shorten 6-hour episodes to 3 hours, but a solution that prevents any more episodes. Or at least an understanding of their cause. And if a few months of writing down everything we eat or do and spending oodles of time on appointments and prescriptions and "treatments" and therapies and payments will solve these problems, it's not such a big price to pay. 

But maybe what I'm really trying to say is that I'm scared for Aaron. I know the other stuff is going to be fine. We know how to deal with it. I don't know how to help Aaron. And I'm surprised and frustrated that the experts I thought would give us solutions haven't. There are just a lot of things...

I DIDN'T KNOW

1. I've discovered at least 3 different levels of stress:

        1. Something might be wrong (last summer)
        2. Something is wrong (i.e. we have a diagnosis, October)
        3. Something looks wrong (i.e. he looks sick, November).
     I can imagine there are additional levels, but I don't want to find them.

2. How hard it is to know who to tell what. When someone asks for an update, how much do they want? Which parts should I say? For a communications professional, I am finding this shockingly difficult.

3. Diagnosis is not fun. It is looking for a needle in a haystack, requiring lots of time and attention to detail, without any assurance of success. What's significant? What should we be tracking? For example, my headaches could be caused by: stress/tension, nursing, postpartum hormones, eye/vision problems, allergies, my daily meds, caffeine, high/low blood pressure, infection, a certain food, environmental toxins (??), sinuses, etc. So step by step, we work our way through the list...It's like a never-ending episode of House.

4. How time consuming it all is. I spend a good portion of every day on tracking symptoms, calls and emails with nurses and doctors and teachers, trips to the drug store and doctors offices and school, talking to insurance and paying bills, and of course caring for Aaron when he's unwell. I had no idea even the doctor visits could take so long: Friday, we left for an appointment at 9am and we didn't get home until 2pm.

5. Metacognition takes additional time. As our situation evolves, I find it difficult to process it all, to get perspective, or remember how I'm supposed to think about it. With each appointment or change in symptoms, I feel like I'm re-constructing my expectations, but I don't have quite enough time or tools to do it properly. This may explain why it's so hard for me to simplify our situation to others. Writing helps, so maybe this post will be therapeutic.

6. Sometimes the things you chose still overwhelm you. I've been realizing how often I judge others as if we should be able to perfectly calibrate our responsibilities to our capacities. But what if God has deliberately given you--or me--more than we can handle NOT as a sign that we've made bad choices but to humble us and force us into community -- with himself and others? Yes, we chose to have 4 kids. And I chose to teach/write this fall. And Josh chose a job with a lot of travel. And it has all overwhelmed me lately. But maybe for the first time in my life, I've realized that doesn't always mean those were bad decisions. Sometimes--I'm hoping rarely, but sometimes--we're supposed to bite off more than we can chew.

But enough about me. Let's get down to brass tacks...

WHAT WE DO KNOW

- Genetic testing confirmed Aaron's NF1 diagnosis. I've met a few stellar adults with NF that have helped me make peace with this.

- I think we are starting to feel like we have a handle on what the NF1 and chiari malformation diagnoses mean. There's more to do, but we generally know what needs to be done, except...

- Aaron's episodes (headache/vomiting) have accelerated at what I consider an alarming rate: from 1/month in Sept to 1-2/week in Nov. To my mind, that seems like his body is trying to tell us something, but so far we haven't figured out what (hence all the time on diagnosis).

- If we can't figure out a cause, we may end up just treating the episodes as migraines and wait to see if any other symptoms reveal the cause. This bothers me because:

     1) I worry we're missing something we need to address, 

     2) he could be on migraine meds indefinitely (he's only 7, and they have side effects), 

     3) he could still have these episodes even with the meds.

- The 3-month MRI of his head is Dec 29th. It should look the same as before.

BLESSINGS

Some days I lose sight of these things, so I need to keep lists of them...all around me... #countyourblessings

1. The nurse at our boys' elementary school is an old friend. She's probably the only school nurse I know, and she's at our school. #whataretheodds I am so thankful that she knows our family and understands the context for the various scenarios we are dealing with.

2. Now that we're trying to analyze these episodes, it's become very important that Aaron only tell us true information about what hurts where, etc. I am incredibly thankful that he's not one to embellish or malinger. In fact, in every case so far, what he has reported has proven to be true. 

3. I felt overwhelmed when trying to think how to set up childcare for weekday appointments. Then a friend set up a care calendar that did it all for me. What a weight lifted!

4. We just had a lovely week away at Thanksgiving, Katherine's baptism is coming up Sunday, and Christmas is around the corner -- all really wonderful and deserving diversions for us right now.

5. Each of our kids is doing well in school right now. I'm almost afraid to say it out loud. #dontjinxit

6. We are working with some great doctors, including our pediatrician and oncologist.
7. Katherine is eating solid food! Translation: I can be away from her for >3hrs! I love being with her dearly, but this is good news for both of us.
8. We know that God loves us and is at work in our lives, growing and stretching us. The #1 reason I have kept teaching and writing is to force myself to remember these truths every. day.

PLEASE PRAY for...

1. Aaron's episodes to stop. 

2. The MRI Dec 29 to show no change.

3. Josh's hip to heal without surgery.

4. Me not to have any more headaches.

Next Update: A Weary World Rejoices