when you're in the season of receiving

It's a hard thing, accepting help. It's one I've gotten better at, for sure, but it's still hard. Especially now, when I'm in the season of receiving.

It may seem small to the giver, but it is not. Whether it's a meal (or two meals every week for two months), a grocery run, a text saying "Hey, can I snuggle your crabby baby for an hour so you can go for a run?", a stop at our house-for-sale to shovel off the driveway before a showing, a restaurant gift card, or a store credit set up by friends that leads to these beauties:

It is not small. It is not no big deal. It is wonderful, and it is so, so appreciated. You are so appreciated. We all encounter difficult times in our lives, and I don't know how people get through them without leaning on those around them. My village is the best. That's all there is to it. You. Are. The. Best.

To those who are receiving: It's okay to accept help. It is good to accept help. You are worthy. You deserve it. Don't for a moment think otherwise. (She said, mostly to reassure herself.) Lean on your village and be grateful. And then, when you are out of this season, do what you can to pay it forward.

To those who are giving: Your generosity is more appreciated than us receivers can say. It will not be forgotten. Sometimes you may feel taken advantage of, and sometimes you will be taken advantage of, but please don't stop giving. You are amazing.

another update on the baby

Oh friends. What. A. Trip.

Most of you probably see my updates on Facebook and the like, but I'm feeling the need to do something a little more in depth. Our baby, and our whole family, has been through a lot, and I think I owe it to those who care about us and have helped us to keep you updated. Also, writing is therapeutic. Not quite as therapeutic as running, but until I can work new shoes into the budget, that's not going to happen. So I turn to my keyboard.

When last I left you with a baby update, you know, in January of 2018, we were in the hospital awaiting the arrival of our infant son's medication at our home so we could get out. I'd love to say that things have been all rainbows and unicorns since then, but that would be a lie. For back story part one, read this.

On to part two:

The ACTH injections did the trick. We saw our last spasm on February 7th, 2018 and then everything seemed good. In this case, "good" means the spasms went away. He was getting shots twice a day and a whole slew of oral medications every 8 hours on the dot (as in alarm at 2am), so "good" is a relative word. Also, the hormones, like the steroids, kind of turned the poor baby into a monster. He was so chunky and uncomfortable and miserable that all he wanted to do was eat and snuggle. And sleep a little bit, but only in short chunks and while nursing. Obviously, it was a small price to pay for his health, but it was still a difficult time.

We got a couple clear EEGs and followed our taper plan to a T. One Friday in mid-March, toward the end of the taper, a switch seemed to flip. Baby D started smiling and even laughing again. It was a sight we hadn't seen and sound we hadn't heard since December of 2017, so to say it brought tears to our eyes is not at all an over-dramatization.

We started weekly physical and occupational therapy sessions through the school district. At first, Baby D was so chunky that he couldn't handle tummy time. He couldn't turn his head comfortably and lay on his puffy cheek, so we were taught alternative positions. Within a few weeks, he was not only a tummy time champ, but he was rolling in all directions and holding himself up on his forearms. He had a pretty good amount of mass to hold up, so this is an impressive feat!

Memorial Day weekend, things changed. We started to see the spasms come back. In January, when we received the Infantile Spasms diagnosis, Baby was having 4-6 clusters of spasms per day. Each cluster would consist of 15-20 or more spasms and last around 5 minutes. To see what they look like, check out this video. On Saturday, we saw two clusters of 4 spasms each. We called the clinic right away and spoke with the on call neurologist, who told us to keep a close eye on him and call back on Tuesday when the clinic was open. Long story short, we ended up in the hospital again.

Seven more weeks on meds and we saw another resolution, with baby D getting his last shot the day before his first birthday. It was quite a celebration!

This time, he made it nearly two and a half months spasm- and medication-free before relapsing in the middle of October. He was put on a different schedule this time - a shorter time at a higher dose with a longer taper. Initially, things were going great. Just like the last two times, we stopped seeing spasms within a few days of starting medication. We made it through two weeks of two shots per day and eagerly started to taper - down to just one shot per day.

Things were different this time. Baby D didn't regress like he had before. He didn't completely lose his sweet baby personality. He would still play and smile and giggle. He would roll like crazy, and he even started to sit on his own. (Can I get a HALLELUJAH!)

Following the plan, we gave him one shot per day for seven days. Then we skipped a day. Then I took him on a weekend long retreat with me, where he charmed everyone with his smiles. Then he started having spasms again. I called the on call doctor. Go back to shots every day.

No resolution.

Go back to two shots every day.

Improvement, but still no resolution.

After a week and a half of two shots per day, our wonderful neurologist recommended that we get a second opinion. We requested a referral to the Minnesota Epilepsy Group on Wednesday. On Thursday, we were told that there would be a room ready for us at Children's in St Paul on Friday and could we check in between 9:30 and 10?

Of course we could.

Luckily, we have mastered the art of quickly packing for hospital stays of undetermined lengths of time. It's a skill. Not one that I hope any of you ever have the opportunity to perfect, but a skill, nonetheless.

Baby D had a cluster of spasms on Friday morning as we are getting ready to leave, which further cemented that we were doing the right thing and were not, in fact, overreacting.

We got checked in to the hospital, got Baby D hooked up to an EEG, and started to settle in.

I have to insert a little note here to let everyone know that we absolutely loved our doctor at the Noran Clinic. He was wonderful and brilliant and we always felt heard and cared for and knew he was 100% on our side. Should you find yourself in need of a pediatric neurologist, I would be more than happy to give you his information.

But now Baby D has a new neurologist who seems equally awesome. There was something incredibly comforting about being in a hospital with a designated Epilepsy Center. Everyone was on a whole different plane. These were people who worked, full time and then some, only with children with seizure disorders.

We met with the neurologist who told us, among other things, that it looked like Baby D was developing out of infantile spasms and into Lennox-Gastaut Syndrome. Don't Google it. If you do, don't tell me what you find. I know it can be bad.

We (mostly the doctor) came up with a new plan that involved weaning the baby off of the ACTH (yay!) and introducing a new seizure medication with fewer crabby side effects. After a few days in the hospital, we were sent home with a whole new pharmacy to get used to. The spasms went away, the baby continued to progress, and we were so, so happy.

Our next follow up was mid-December, and Baby D looked off the charts amazing. Not at all like a typical LGS kid. It hasn't been perfect or easy since then, but that's the nature of Lennox-Gastaut Syndrome. It's difficult to control, and, with each tweak to the medication, you hope for better. Obviously, you would love to see a complete resolution, but "better" is often all you can ask for.

There have been more hospital stays, more EEGs, more follow ups, more blood draws and labs, more tears, hugs, and all-night snuggle sessions in the last 14 months than I care to count. It has been hard. Sometimes it has just plain old sucked and there is absolutely no other way to describe it. But through it all, we have discovered just how many truly amazing people we know. From meals to hugs to gift cards to afternoons off to sympathetic smiles to prayers and everything else: we have felt the love.

So there you have it. This little chunker is doing amazingly well, and he is raising a mommy who is grateful for every smile, giggle, and crabby snuggle.

From last November when we got our new diagnosis - note the chubby steroid cheeks. While he's still plenty snuggly, he has slimmed down a lot since this was taken!

it's not okay

This morning after I got home from walking my oldest to school, I said to my husband, "I have a bad feeling about today. I just don't like it."

I couldn't explain what the bad feeling was. Or maybe I didn't want to explain what the bad feeling was.

It was completely unfounded.

Except that it wasn't.

How do I know that I won't take my six year old - my beautiful, innocent, intelligent, sometimes sassy baby girl to school one day, kiss her goodbye, and never see her alive again? It happens. Regularly. It's getting to the point that it barely makes the news anymore unless "enough" lives are taken.

Are we okay with that?

And how many is "enough"?

Are we going to continue to think and pray about it? Or is there something else we can do?

an update on the baby

To say that 2018 so far has been a roller coaster would be an understatement. We have all been pushed to our limits, then pushed a little farther, then either reeled back in by a loved one or pushed over the edge and caught by our amazing support network.

I'm going to give you a basic story, because I'm guessing there are people who are curious but don't want to "bother" us with questions. For the record, they're not a bother. I'm happy to answer your questions. And if I need a break from talking about it, I'll tell you that, too.

On January 5th, our five month old was diagnosed with Infantile Spasms, a seizure disorder. We started to notice some odd movements and a regression of his abilities about two weeks before. Following our parental instincts, we took him to the ER on a Tuesday evening. We were referred to a pediatric neurologist, got an appointment for that Friday, and saw a doctor who gave us the preliminary diagnosis within minutes. Then we were admitted to Children's Hospital for more tests.

Infantile spasms shows up in a very distinct way on an EEG. Someone who knows what they're looking at can tell right away if a baby has infantile spasms, even if they don't actually have any spasms while they're hooked up. He got hooked up shortly after we got checked in at Children's and received the official diagnosis shortly after. They continued the EEG with video monitoring overnight, but disconnected him in the morning for an MRI. Something about removing the metal electrodes from his head before sticking him in a giant magnet. You know.

The MRI looked good, which was a huge relief. While it would have been nice to know right away what caused this, it's always good to hear that there is nothing structurally wrong with your child's brain. It's likely genetic, but we won't know exactly until we get the results of those tests back.

We started a high dose steroid treatment the first night we were in the hospital. The nurses gave him the medication, which he then proceeded to throw up all over Dad. We came to the mutual agreement that it should probably be given in two doses, rather than all at once. Dad was a fan of that idea.

We were released from Children's after one night, so we went home on Saturday. We made it home and went about our lives, adjusting to the "new normal" and relying heavily on our fantastic network. In case you don't know how steroids can affect a person, I'll give you a little insight. For our baby, they made him constantly hungry and crabby. Constantly.

It was all worth it, though, because we saw immediate dramatic improvement. When we first went in, we were seeing clusters of spasms - 15 or more in a 5 minute span, 5 or 6 times a day. Before long, we were seeing 1 or 2 individual spasms over the course of the whole day. Our first follow up with the neurologist was a little over a week later, and he was very optimistic. He said things were progressing great and there was a chance we could be done with the steroids completely in a few weeks and never see this again.

We were still seeing some spasms the next week, so we called on Monday at the request of the neurologist and got an EEG scheduled for the next day. The results of the EEG were, again, promising. There was dramatic improvement and it appeared that the infantile spasms were resolving themselves. He noticed some movements still, but called it a myoclonic jerk and said that it was something we most likely would not need to worry about.

On Friday and Saturday, January 26th-27 th we noticed a dramatic increase in the spasms. Instead of two in a day, he went back to having one every hour or two. I was able to talk to the doctor on call who told us to hang tight until Monday and call the clinic then. But if he had more clusters of spasms, then we were told to take him to the ER. It was about 10:00 on Saturday night when we saw five spasms in as many minutes, so I packed a quick overnight bag and we headed off.

We got to Children's hospital shortly after 11 and were taken to a room in the ER. It took awhile for them to get in touch with the neurologist on call again so they could figure out what to do with us, but eventually, around 7:00 Sunday morning, we were admitted to the hospital to get another EEG. This one looked about the same as his previous EEG, so we were presented with two options: we could increase his steroid dose to reflect his weight gain (that's right - our kid got too chunky for his medicine), or we could scrap it and try our next treatment option. Knowing that the next option was an injection that was extremely expensive and would buy us a few more days in the hospital, we opted for the steroids.

We already had another EEG scheduled for the following Friday, February 2nd. We didn't notice much of an improvement this time, so we weren't overly optimistic. The EEG still showed improvement over his first one, but was about the same as his other two. The neurologist suggested that we move on to the next option. We were admitted to Children's again, and that's where we are now.

He started ACTH injections on Friday night and will continue with those twice a day for at least two weeks. This is a hormone treatment that can cause high blood pressure, so he's on medication to combat that. It can cause high glucose levels, so we are monitoring that. It suppresses his immune system, so he's on an antibiotic, we're washing our hands very frequently, and anyone who has been sick or exposed to sickness is being asked to keep their distance. It causes irritability, but Tylenol seems to help with that. A combination of his blood pressure medication, melatonin, and benadryl are being used to help him sleep. Basically, he's consuming a small pharmacy. And lots and lots of breast milk. You probably see "injections" and think "that must be awful - poor baby!" I won't lie and say he loves them, but he actually handles them better than his oral meds. We put some numbing cream on, and after a quick poke, he's done. He absolutely hates taking oral meds. It's to the point where we're not even thinking of trying a bottle or solid food because he's so wary of anything we try to put in his mouth. Dad actually had to plug his nose one time so he would open his mouth enough to get them in. How's that for awful? 

Now baby and I are just hanging out at the hospital until we know the medication is on it's way to our house. I'm hoping we'll be out of here tomorrow, Tuesday, but I'm mentally preparing myself for longer.

I'm going to finish this very lengthy post with one last plea. Please please please make sure you and your children are up to date on your vaccines, including the flu vaccine. Even if it's only 10% effective, it will help 10 out of every 100 people. Our baby can't get vaccines while he's on these meds, so we're relying on everyone else to help us protect him. The flu that seems debilitating for a few days to a normally healthy child could be life threatening to someone like my son. So don't be offended if we don't want to hang out with you for awhile, even if you are up to date!

This little guy is one tough cookie!

i'm done being quiet

Here are some of the reasons I've been quiet so far:

1. I don't know as much as I should. I will admit that there are a lot of things about which I am ignorant. I'm afraid of sharing my opinion and having someone shoot it down and make me look silly. No more. If I share something that is just outright ridiculous or wrong, I want you to call me out on it, preferably gently and with tact. I will never intentionally share incorrect information, but I gladly welcome intelligent conversation in which all sides (because there aren't just two) can not only be heard, but also listen.
2. I've been trying to figure out how to play the middle ground. I have a lot of friends and family members who are extremely conservative, and I have a gift (I think) for being able to see multiple perspectives. I've been taming down what I want to say about a lot of things in hopes that I can still reach some of those who are turned off by the abrasiveness with which people like my little brother sometimes share their opinions. (All the respect in the world to you, Adam! Keep fighting the good fight!) Does that make sense? If I come out and say "The president is a moron." I'm going to lose my ability to reach people. And that's not something I want to say anyway. I will say, "The president does a lot of things with which I disagree."
3. I've thought I don't have a voice that reaches enough people to make it worthwhile. On average, roughly 50-100 people have read each blog I've posted. There have been others that have been bigger (miscarriage, mental health, and my lament on what it's like to be a woman in a society that does little to control rape culture), but for the most part, I reach my friends, my family members, and a few random strangers if I happen to chose the right hashtag.

I am done with all of these. I do not want to look back 50 years from now and say "I could have done more." I'm not okay with that. I want to look back and say "I used my voice and it made a difference." I want to be able to say that there are people who are alive now because I stopped caring about offending those who didn't value my opinion anyway. Because I used my voice to fight for the rights of the oppressed. I'm done being quiet, and I'm looking forward to it.

God will forgive us for being quiet, but history will not.

ignorance is not bliss

It is dangerous. And choosing to remain ignorant is not an option. Ignorance is not bliss. One more time in color with a fancy background?

But here's the good news: ignorance is treatable and often costs nothing but a little bit of your time. Don't know where to start? Here are a few suggestions:

• Mental health
• Racism
• Immigration
• Infertility and miscarriage
• Religion
• Child brides
• Forced prostitution/sex trafficking
• Modern day slavery

Reach out to someone who can teach you. Find someone with a mental health issue and ask them how if affects their daily life. I can almost guarantee there is someone closer than you think.

Walk into a place of worship that is unfamiliar and set up a meeting to talk to their leader. You will likely find that you have more in common than you thought.

Google a cause you know nothing about, find a phone number, and ask to speak to someone who can tell you what they do. Please. I have never heard of a scenario in which someone was upset or offended by another person admitting they know very little about a cause, condition, organization, or issue. The absolute worst thing that could happen is that you waste a little bit of time and are no longer ignorant.

If you have a cause and are willing to share your knowledge or passion, please leave a comment below or share this post so people can reach out to you. If you are even mildly interested in any of the above or any other cause but don't know where to start, leave a comment below, reach out to me personally, or share this post and ask for suggestions.

You may decide, after learning a little bit, that you passions lie elsewhere. That is absolutely fine. But continue to search for your passion. There is no shortage of injustices in need of a champion. You don't have to go into it with the goal of changing the world, but how cool is it that that could be the accidental byproduct?

I came across a quote that reads "Ignorance is the single greatest tool of oppression."

Don't want to be oppressed? Don't be ignorant.

How about one final time, really big?

grandpa

I'm thinking about my grandpa today.

He passed away last June. I only saw him and my grandma a couple times a year, so his passing has done very little to change my day-to-day life. But every now and then I stop and remember, especially lately.

My grandparents have been into social justice since before there was a name for it. They're the ones who, when the alcoholic deadbeat they hired to help around the farm came to collect his pay, refused to give it to him and instead gave it to his wife so she could use it to feed and cloth their family before it got lost at the bar. They have always the the quiet fighters for what is right. They care for the poor. Not just with a couple dollars in the collection plate on Sunday, though they knew that was important, too, but with their literally countless hours of volunteer work in their church, their community, and their world.

So today I'm thinking about my grandpa. And I'm crying, just a little, but I'm inspired. He left an 84 year legacy of service, discipleship, and all those other cliches that go along with an amazing man like him. Now it's up to us: his wife, his 9 children, his 21 grandkids, his 6 (and counting) great grandkids, and everyone they touch to carry on that work.

Please, in memory of my grandpa and all those who have gone before us trying to leave the world a better place than they found it, do something today that will make someone smile.