My Home Cookin'

Now that I've broken my blog silence, seems I'm on a roll...2 in 2 days!

A couple months ago, I decided to start taking a picture of what I make/buy/reheat for dinner every night and post it to Instagram. I kicked it off with this message:

My people need to eat. Like every day. And by our family’s most efficient division of labor, that means I am on tap every night right about…5 o’clock…to come up with something relatively healthy for everyone to consume (or repulse, as the case may be).  

I’ve been thinking lately that most of us probably have some easy meals/hacks/tips we take for granted that the rest of us would find helpful. I also think there’s a lot of food advice out there with unrealistic expectations. So… 

I’m running a little experiment: posting (anonymously bc trolls) what I feed my family for dinner each night. I’m hoping this will...  

1. Throw a dart at the myth that every night ought to be a from-scratch organic food symphony, 
2. Provide inspiration when everything you’re making sounds too familiar,
3. Offer tips and suggestions that will hopefully make someone's life a little easier, particularly during the witching hour.

Feel free to follow along – and post helpful suggestions in the comments.

Then I expanded it to Facebook and Tumblr.

I have quickly discovered how useful it is for me to have this record:

1. I'm excited to have a catalog of our dinners - I used to have an excel list because I quickly forget every food but what we've just had.🙄 I'm hoping to keep this up long enough that it'll serve me for years to come whenever I get in a rut - and be much easier to consult than a spreadsheet.....
2. We have some health issues in our family so I've been logging our meals in MS Word for months. This is much more fun and just as useful....
3. It's the only thing I've found that gives me a little nudge to plan ahead (something I need to do more as my people are growing and eating more). I'm still not a detailed planner, but I'm less likely to wait until 5pm now that I know it's gonna go public.....
4. Which is not to say it reaches far, but that's fine with me. There's comfort in knowing the majority of followers are friends and their friends.....

I am hoping to continue this project until I've gone through all the meals I usually make at least once. Someday I could even print it as a book for my kids.

But in the meantime, there is one question I keep getting from friends who are following along: "Do your kids eat it?" And the answer will be in my next post--which I hope to actually complete soon... #staytuned

Settling In

WHERE HAVE I BEEN?

On Facebook and Instagram. If you want regular updates on our little household, get thee to social media! ;)

Still, it's been 6 months since I last posted here, and if you've ever procrastinated on something, you know the longer you're overdue, the harder it gets -- there's just too much unsaid...where to start... But it's past time. So here goes...

2017, THE FIRST HALF

If 2016 was our Year of Drama (new school, new house, new family member, new diagnosis), 2017 has been about settling into the New Normal, getting used to it all.

Believe it or not, Katherine has been the easiest adjustment. She's a joy for all of us, even when she's fussy--and she has 8 teeth so you can imagine... We're all just happy she's here (even if it means the displaced youngest cries more than he used to).

I'm finding veteran mommyhood SO MUCH better than rookie mom-ing. That's good, because she's not been completely uncomplicated. (Who is?) She turned ONE in June (the boys are thrilled she's no longer ZERO), and now she's really starting to interact: pulling up, climbing, babbling, and exploring her world (i.e. my kitchen cabinets).

On the school front, I knew we'd finally arrived this spring when the boys compared their new school to their old school (as they have ALL YEAR) and the new school started winning. #winning

The new house has been great. Not everything is better than the old, but it is better in the areas that count -- the ones that led us to move in the first place. And we're using the new spaces I was unsure about. #bonus

THE ELEPHANT IN THE ROOM

Which leaves us with the diagnosis. We're used to this, too. Aaron has an awesome attitude. Vanderbilt Children's is now familiar, friendly, even fun for him (the trains, toys, Ronald McDonald room, Ben & Jerry's). And Aaron's case is currently manageable. It's complicated -- which is why it's hard for me to give succinct updates -- but now I have more patience, gradually working through issues and not feeling pressure to "fix" everything today.

Here are the key points and prayer requests:

1. He still has 24-hr vomiting episodes every week or two. We've done all the tests without finding a fixable cause -- they seem to be a byproduct of his NF1. We're trying different meds, I'm still looking for patterns/triggers, we're going to see a national specialist in Birmingham in Sept, but if all else fails, I'm praying he will outgrow them. In the meantime, we're figuring out how to make them as unobtrusive as possible. Please pray they would go away.

2. His 6mo MRI came back with no new growth. This was a big relief, and means we can relax for a while on the worst case scenarios. The next hurdle will be puberty, as increased hormone levels can be problematic. But I'm hoping we have a few years to go on that front! In the meantime, please pray for no growth -- and particularly protection for his eyes/sight.

3. We're still working through the educational ramifications. He will be back at our local elementary school this fall, where HE LEARNED TO READ last year (Amazing). This summer, he's participating in a program at a private school that feels tailor-made for him. So we've seen some big wins. Please pray that we would continue to know the next right steps.

HOW DOES IT FEEL?

How does it actually feel to live in this "new normal"? Really good but with moments of fear, doubt, and inadequacy scattered throughout. Which sounds a lot like the "old normal," but there are a few differences...

1. Before this year, I knew I should soak up these days with our kids at home. Now, I feel it on a gut level. I sometimes forget, but I'm far more likely to relish time spent together as a family, not running around on a schedule, but relaxing, reading, hiking, joking, eating, swimming, traveling, and building deeper friendships. I don't take these days for granted, and that's a gift in itself.

2. Deeper friendships. I love helping people connect, and particularly as our church has grown quickly in the last 5 years, I've been collecting large groups of people so they can get to know each other and feel like they belong. That's all good, but it's a mile wide and inch deep. The point of these big gatherings is for potential friends to find each other and then go deeper on their own. This year has reminded me to do that myself -- that it's ok to spend a lot of time with a smaller group of people so we know each other well enough to support each other in private or prolonged challenges. That this is not inherently exclusive or cliquish. It's wise.

3. I had never experienced such fear as I have in the past year, and I've found it has created some friction between me and God. I still believe all the same doctrine, but I've struggled with anger that He says not to be afraid when there is so much pain to be afraid of. So we're wrestling a little, but not as strangers -- I just feel more like his teenage daughter some days.

4. While it may sound contradictory to #3, I have found the most comfort in my faith this year: scripture, hymns, worship songs, nature walks, church, doctrine, and the encouragement of fellow Christians have all been the best balm. I've always known I would not want to face life without Christ; this year has been further confirmation. I can cry and be angry with Him at the death of Lazarus, but also feel the hope of His resurrection power (John 11).

5. I really like having 4 kids. I don't have space to talk about all that each one is doing and becoming in this post, but they each bring something essential to our family, and we have a lot of fun together. It certainly takes a village, and we're probably not in the hardest years yet, but today, I'm just thankful God knew better than we did how many kids we should have.

And that's a wrap. If I have to keep going, I'll wind up procrastinating another month...

But for one more update, check out Good News!

A Weary World Rejoices

As you may have noticed (Still in the Dark), December had a rough start. I was disillusioned with medicine, scared for Aaron, overwhelmed by the new demands on me, and discouraged by my own inadequacy. (Sound familiar? see Fighting the Fog). Thank the Lord the last few weeks have been better. Here's how each of those things has evolved...

1. Disillusioned with Medicine - It is still true that doctors can help us far less than I expected and most of the work of diagnosis and treatment seems to be on me. However, we've had some good news lately. For example, we've figured out the culprit behind my headaches: sinuses. Even though I don't have a history of sinus issues and I haven't had any congestion, sinus medicine is the only thing that works, and it's benign, so we're going with it. Yay for no migraine meds and finally being able to think clearly again! Well, except for the momnesia... #clearisrelative

2. Scared for Aaron - His 3-month follow-up MRI looked the same as the original. This was great news. His increasing episodes had me terrified that we would see growth. I am immensely relieved that the scariest scenarios are off the table. He'll have another MRI in 6mo, and if it's the same, just 1/year. Weight lifted. Praise God. 

We're still working on figuring out the episodes, but once we have explored the major causes we can think of, we will just have to move forward with treating the symptoms and praying they go away.

3. Overwhelmed by the New Demands - In preparing this post, I went back and read When We Have to Helicopter again. Startling how often I have to re-learn the same lessons. In this case, it is every time parenting pushes a little further into my personal space. Those seasons when covering the basics (fed, clothed, loved) just isn't enough. All my selfishness, laziness, and fear rear their ugly heads.

Our travel this Christmas actually reminded me why I need to lean in to parenting, again. I was already stressed (see #2) when I started questioning my decision to haul all 6 of us in sub-par health to another state for the holiday. But then it hit me: we weren't going because it's easier or more fun for me. We were going because we love our relatives, we want to see them face-to-face, we want them to bond with our children, and Christmas is one of the few times we can do all of that. We can tell all those relatives we love them from afar, but if we don't sacrifice a little and show up sometimes, it'll be a pretty flimsy sentiment. 

The same is true for my kids. I can say "I love you" till the cows come home, but if they don't see me willing to go out of my way to do what's best for them, it won't mean much. That said...

This is us, on break, having fun, ignoring the hard stuff. ;)

4. Discouraged by My Inadequacy - I've always had a hard time creating new habits, even when I believe they would be good for me/us. It is embarrassing how little my boys practice piano between lessons or study scouts between meetings. I have old-lady, days-of-the-week pill boxes and still sometimes forget to give/take medicines. And my various attempts to disciple my children in Bible-reading or scripture memory never last beyond a week or two. (Maybe if we string them all together, it'll look like a program?) I can't even imagine what a terrible home-schooler I'd be. How many times have I half-started a gluten-free diet? It is just remarkably hard for me to change our family routines or stick to new plans, to include all the elements of life that might be good for my kids in a regular week. And I feel terrible about it.

But sometimes, enough is enough. Getting them to swim lessons and talking about the Bible and buying them all gloves is already showing them love and there just isn't enough of me to do much more. Reminds me of Facing the Mommy Guilt Head-On (yes, another lesson I'm re-learning). God made us their parents. He gave us these 4 kids. And we have the resources to do what they really need without killing ourselves in the process (I'm channeling Parenting 001 here, one of my favs).

This time around, Christmas brought this lesson home. I found my heavy fears would lift a little when I looked at our beautiful Christmas tree, or turned on some Christmas carols, or made Christmas cookies. It was like a ray of sunshine and joy shining into the darkness. 

And I thought, How perfect. That's exactly what Christmas is supposed to be: a celebration of how God came to free us from our legalistic inadequacy. Of course I am weak and selfish and never all I want to be. The joy of Christianity is that it teaches us God is using even my weakness to do great things, to redeem my family, to make it all work together for good. 

I don't have to be the embodiment of Martha Stewart and Paul Tripp. I cannot be enough to save my family from a broken world. But I can show them what it looks like to be weak and selfish and lean on Jesus and pray for strength and practice selflessness when I remember. Because the fact is, they too will be weak and selfish and they will need to see how to cope with that. Maybe I'm their model for seeing that God really loves sinners. Now that is a job I can do.

What You Can Do

I know you're all busy with your own lists, so just whenever God brings us to mind, please pray...

1. That Aaron's vomiting episodes would stop. 

2. That Josh's hip would heal.

3. That we would know where to spend our time/energies/money on helping our family members thrive.

4. That we would remember and communicate to our kids the grace and redeeming power of God.

Next update? Settling In

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

Now What?

Now that we’ve had some more time to explore what’s going on, I wanted to post an update focused on a few main points: 1. Frequently Asked Questions, 2. The Grace We’ve Seen, and 3. Prayer Requests. (If you're already lost, you might want to read Hard News first.)

FAQ

What’s the latest?

- Chiari 1 malformation – The MRI showed an area of concern that could have required surgery, but the docs have decided it is not necessary right now. 

- Genetic test – Should come back in the next week to confirm the NF1 diagnosis. I have very mixed emotions; I don’t know which is worse – an NF diagnosis or whatever else could be causing the…

- Brain tumor/lesions – With NF they stay local and usually grow slowly if at all, so we’re waiting for the 3- and 6-month MRIs to see if there’s any change. Fast growth—which is unlikely—would signal malignancy and probably lead to chemotherapy.

- Headaches/vomiting - We think they're migraines, and we're working to manage them with medication. Their increasing frequency scares me.

At least it’s not cancer, right?

(Most likely it is not cancer, but we won’t know for sure until early 2017.)

Yes! Metastatic cancer would definitely be worse because it can spread aggressively. NF tumors stay local and usually grow very slowly.

But… Many cancer tumors are treatable (surgery, chemo, radiation) while NF tumors are not treatable. This has been the hardest part for me to swallow.

What’s the plan?

We had a spate of appointments in October to address acute issues. Now we're working on trying to understand and manage his symptoms. We'll have another round of appointments in December. We hope to have clarity on the current situation by the new year.

How are you doing?

The first two weeks I felt shock and grief. The third week I felt overwhelmed and exhausted. With the help of our sweet village, I feel like I’m coming out of that. I’m also starting to feel what I believe – that I can trust God’s plans for us. But I still hate headache days (like today) and feel a bit fragile.

How can we help?

1. Prayer is absolutely my favorite thing and always the best way you can help. If you have a sec to shoot me a text that you’re praying for us, it warms my heart. (Specific requests below.)

2. Childcare can be helpful when I’m trying to work through insurance issues, communicate with doctors and teachers, or go to appointments, but it’s probably best for me to text people specifically as the need arises. Please let me know if you're up for this. Don’t worry – I won’t dump all 4 kids on anyone. ;)

3. Meals are the easiest thing for someone else to do, but we’re covered for now.

The Grace We’ve Seen

Many of you have heard our hard news and felt the accompanying sadness, but you may not have seen the grace that God has planted along our path. So here are a few examples…

1. Josh travels a lot, but the night I found out, he was in the air on his way home for the whole weekend. This may sound small, but as I’ve learned since, being present together and on the same page makes all the difference in how we handle this.

2. On that first Sunday after we found out, Josh called our college friend (who is now a peds oncologist at Vandy Children’s) for advice. Turns out he is the one to manage Aaron's case. He instantly made a web of specialists and appointments accessible and navigable. I don't know how to thank him - or the God who provided him.

3. I cannot imagine walking this road on our own in a new place if we'd moved to DC last spring (as we expected a year ago), so I'm just thanking God again that we are here, near family, our church, and an excellent Children's hospital.

4. Walking through the Children's hospital, there are always reminders that we could have a much harder prognosis. And while it doesn't take away the pain, I do know it could be worse. I am beyond thankful that Aaron is such a beautiful, bright, happy, little boy! I am also incredibly thankful that he has a cheerful disposition that is not prone to fear or worry.

5. When I called the NF nonprofit to find another parent, they said the local chapter's annual walk was THAT Saturday at Warner Park (across the street from our house). I couldn't believe it. It turned out to be a sobering experience, but we did get some valuable information and contacts -- and clearly it seemed like we were supposed to be there.

6. Just this morning I found out an acquaintance is going back to work. Where? Children's Hospital. Oh really, what dept? I know there are hundreds... Pediatric hem/onc. "Our" dept. Which means there will be another familiar face on that floor. #whatweretheodds

7. Katherine is such a little sunshine for our family during this time. I love to see each boy's face light up when he sees her. We all want to hold her, check on her, and make her smile. Not that it was a question, but she is a constant reminder that God absolutely knows what he is doing, even when he surprises us.

Prayer Requests

1. Current tumors would not grow.

2. No new tumors would form, but especially around anything important.

3. That the headaches/vomiting would stop or we would figure out how to stop them.

4. Wisdom in managing his symptoms.
5. That we would know when/who/how to ask for help.

Next Update: Still in the Dark

Hard News

BACKGROUND

In May, soon after he went to bed one night, Aaron threw up a few times. I thought, Ugh! Here we go: stomach bug. But miraculously, no one else got it! (fist pump)

In June, soon after breakfast, Aaron turned white as a sheet, said his head was hurting, and then threw up a few times and slept all day. I thought, another stomach bug? And I cleaned liked crazy. Again, no one got it! (fist pump)

In July, same song, different month.

So while we were at his annual physical, I mentioned it to our pediatrician: How is it no one else is getting sick? Could this be migraines? He prescribed some meds and said, Probably, but let’s do an MRI just to be safe.

Happened again in early August, but nada in September. By October, it had been 6 weeks, so I was about to cancel the MRI when it struck again October 3rd. So we went ahead with the MRI on the morning of Friday, October 7^th. I hardly mentioned it to anyone since it was just a formality. Josh was out-of-town.

I woke up from a nap at 4:15pm that afternoon to a call from our pediatrician. The MRI results were back. Already?? And there was hard news. There was news?? There was news.

DIAGNOSIS

And it’s complicated. Too complicated for this blog. But all I really heard that night through all the reading and conversations was “tumors.” That word was slowly sending shock waves through me, turning me inside out.

It wasn’t until we spent the following Wednesday at the Children’s Hospital that I felt like we were finally getting a handle on what his diagnoses were.

Like I said, it’s complicated, but the headliner seems to be: Aaron has a non-contagious genetic condition called NF1 that causes mostly-benign tumors to develop, mostly in childhood/adolescence. Cases of NF are unpredictable and seem to fall in a very broad spectrum, depending on where the tumors appear and what they affect. 

Two things I have found especially difficult about this:

• Tumors. I hate that word. Even the doctors have all sorts of ways around it: gliomas, hamartomas, lesions, bright spots, etc. But when the fundraising nonprofit for your condition is called the Children’s Tumor Foundation, you know it’s unavoidable. We still don’t know their severity in Aaron’s case – so we wait for future tests and symptoms to bring clarity. And we pray that he doesn’t get any plexiform tumors, because those are the untreatable monsters that keep me up at night.
• Trying to reconcile in my head my beautiful, healthy, happy, intelligent little boy with these terrible realities and possibilities. It feels like a monster is threatening my child, and there’s nothing we can do to stop it. It may not show up in all its ferocity. But I can’t assume that anymore now that I’ve seen its picture and know its name. 

Needless to say, it has been a really hard couple weeks. I almost feel like a wimp saying that, since no tragedy has actually occurred. There was no terrible accident or major surgery. Except for another migraine (post-diagnosis so this time it freaked me out to see him looking sick), Aaron is still as smart and healthy and happy as he was last week or the week before. Nothing has physically changed. So why does it feel like there’s been an earthquake and nothing is quite the same? How could these pictures (from the MRI) and words (from the doctors) have so much power that even writing this now, I have a physical reaction to it? But I do. I just do.

There is much more to say, about the shock we have felt, the ways God has shown grace, and the long road ahead, but I’ll save those for another day. Because this subject doesn’t have a nice little storybook ending. And I think that’s where part of my grief comes from -- the open-endedness of it. So I’m not going to wrap it in a bow here either. There is time for the bright side. Another day.

GOING PUBLIC

One more thing: I have really wrestled with whether to share this diagnosis so publicly. So if you’re concerned, it might help you to know…

Why am I telling you this? Because...

• I am finding the effort to hide what we are experiencing more trouble than it is worth. There’s no better way to become isolated than to hide the biggest thing that’s happening to you. And a wise friend warned me that secrets gain power from being secret.
• I’ve found there is no middle ground between “I’m fine” and “My son has brain tumors.” I’ve tried “It’s been a rough week” or “We’re dealing with some medical issues,” but they just make it obvious to the other person that I’m hiding something from them, they could actually imagine something worse than the reality, and I hate pushing people away. You might think, Who cares if you’re not close anyway? But what if I know her daughter has sickle cell anemia and we could bond over shared experiences in hematology? Or this other acquaintance has good advice on how to talk with the kids about it? But suddenly she knows more than our closer friends? It is remarkably difficult to know where the boundaries fall, who needs to know what. So we’re just doing the best we can.
• I believe that some people are called to live privately; that’s what they value and prefer. I totally respect that. I also believe some people are called to communication, and for better or worse, I am one of them. It kills me not to. Jen Hatmaker gives me hope that this will maybe not have dire consequences on my children. After all, God made me their mother. #blessthem #prayforthem
• I am hoping and praying that sharing this news will not hurt my kids but rather help provide the community and support we all need. I am optimistic that people will not think less of my son because he has this condition, and I am hopeful that it will not limit his future in the least.
• This FB group and my blog only reach people we know pretty well anyway, and I’m getting worn out trying to remember who all to call or email with updates. I considered CaringBridge, but that just creates a whole other thing to check, so why not use the platform I’m already on?
• I am learning and feeling SO much already that I really want to record and share, and I don’t see that letting up for a while. See #3.
• The kids know (out of necessity) and once they know, the cat’s pretty much out of the bag.

So rest easy, knowing that I’m already worrying about it for you, and we can both hope God’s still in control and He (or Josh) won’t let me do anything too dumb.

Next update: Now What?

Books for Elementary Boys

Last year, I posted lists of books our boys have loved (or not). Looking at it today, I realized I need to update with a new category, since our oldest (3rd grade) has exploded onto the early YA book scene. This has been really fun, but it's also hard to keep him stocked! (Thank you, McKay's and the library!)

If you're looking for books that might appeal to a 2nd- and 3rd-grade boy, these have worked for ours (and they're almost all series, which makes life easier). I should mention that my oldest is not easily scared, so you'll of course have to adapt this list to your own child's personality and tolerance...

Ballpark Mysteries by Kelly
39 Clues by Riordan
Hank Zipzer by Winkler
Gregor the Overlander by Collins
baseball books by Mike Lupica
Hardy Boys by Dixon
Artemis Fowl by Colfer
A Series of Unfortunate Events by Snicket
Inkheart Trilogy by Funke
Peter and the Starcatchers by Barry
Percy Jackson by Riordan
Goosebumps by Stine
Diary of a Wimpy Kid by Kinney
The Wingfeather Saga by Peterson
The Mysterious Benedict Society by Stewart
Carole Marsh Mysteries
Guardians of Ga'Hoole by Lasky
Jedi Academy by Brown
I Survived... by Trashes
Harry Potter by Rowling (we just did 1-4 so far)

Suggestions?