rambling

I'll be really honest with you right now: I have no idea what direction this is going or if it will even end up being coherent. There will probably be typos as autocorrect comes up with weird things that I don't catch because my brain is moving faster than my fingers and I just have to get this out. Whatever "this" ends up being. It will probably be oddly formatted as I am writing it on my phone and I'm really not used to the blogger app. But here I go.

For a brief, beautiful two months, Daniel was seizure free. This was the longest stretch since fall of 2018 when we first learned about Lennox Gastaut syndrome. We appreciated every day, but didn't get to excited, because we know how things go.

Last week, we started to see seizures again. Small and subtle, likely unnoticeable to someone who doesn't know what they're looking for, but we know exactly what we're looking for. Even though the movement was little more than a twitch, his eyes gave it away. Calls were made to all the doctors, records were between the hospitals, and the meds are in the process of being adjusted. So here we are again. Hoping that this simple tweak makes the difference. Hoping that, maybe, he gained enough weight in the last two months that he just outgrew the dose and needs more medicine. Knowing that's not likely, but hoping anyway, because we don't know what the next step is going to be if this doesn't work. Again.

Here's another thing about Daniel. He has a weakish immune system. I won't say he's high risk or immunocompromised. He was two years ago when he was on ACTH and steroids, but now he's not, and I don't want to downplay the seriousness of those who are. But he does tend to get sick more often than other children, and it is more serious when he does get sick. This past winter he was hospitalized for pneumonia and bronchiolitis. Watching him struggle to breathe until the nurse injected him with that steroid to open up his airways was one of the scariest things I've seen. And he has taken us on some crazy rides. So when it comes to covid-19? Well, I hope you'll understand why my family is taking all the precautions, and why I'm practically begging you to do the same. If we find out 6 months from now that wearing a mask in public and inducing social distancing made absolutely no difference whatsoever and didn't even prevent the spread by .001%, I will still have no regrets about doing both. Because it was a precaution that was minorly inconvenient that some people thought just might help. This is the time to be overly cautious, because people like Daniel might need it. Is he likely to catch covid-19? Probably not. Does that mean we won't take precautions to make it less likely? Absolutely not.

Another thing about uncontrolled seizures. SUDEP (Sudden Unexpected Death in Epilepsy) is a real thing. Some of the biggest risk factors are early onset of seizures and uncontrolled seizures. I would consider four months of age early onset, wouldn't you? I don't think we're being unreasonable in our thoughts and actions, but I'd be lying if I said that Nate and I weren't concerned. Maybe even freaked out a little. If his seizure movements are so small that the monitor we have in his room doesn't pick them up, how many seizures could we be missing at night? So I'm doing what Danny's parents and Henry's parents wish they would have done: I'm spending my nights on the couch snuggling my baby in hopes that even the most subtle seizure will wake me and we won't lose our baby to SUDEP like they did. Is Daniel likely to die from SUDEP? Statistically, probably not. Does that mean we won't take precautions to make it less likely? Absolutely not.

And through all of this we've been dealing, like many of you, with distance learning and unpredictable Minnesota weather (is it spring? Is it winter? Who even knows anymore?) and increased work hours (because let me tell you, this has NOT made life easier for your pastor. Or their family.) and life as we know it bring turned sideways then upside down and then tilted back the other way. Under normal circumstances we would push to get Daniel admitted to Children's for an overnight EEG so we could track seizure activity during sleep. I'm thinking that's not high on the priority list right now .

So there that is. Somewhat coherent ramblings on covid and SUDEP and the reality of having a baby with uncontrolled epilepsy during a pandemic. I'm not looking for sympathy or pity or a pat on the back. I'm not really sure what I'm looking for if I'm looking for anything at all. Maybe I just needed to get this out because there's someone else out there who needs to read it, too. The spirit is tugging me and I've learned not to say no.

we are in this together

This is something that first struck me several years ago when we had a miscarriage, and now that we have a special needs child, it just keeps coming back.

There is no competition. We're not trying to one-up each other or downplay another's pain. We are there with unconditional support, because we know that's the only way any of us will get through.

We've had some rough days on our journey. When we first heard the words "Lennox-Gastaut" we were scared. One of the defining characteristics of this diagnosis is that it is unpredictable and difficult to control. That's not what you want to hear about your child's health!

The summer before the LGS diagnosis, when we were still celebrating a successful second resolution of D's infantile spasms, I met a mama at camp. This mama is a warrior, and so is her medically complex son. We shared stories of triumph and heartbreak, frustrations with our imperfect health care system, and the challenges and joys of having children with seizure disorders. I won't play up our relationship and say we're best friends, or even that I have any idea what she is going through, but I know that, if I need her, she's got my back, and I hope she knows that I've got hers.

Friends, this is a mama who won't see her son survive childhood. Seizures are just part of a long list of health concerns.

I've since connected with other mamas who are on this difficult road with us. Some of us are hopeful that our children will be able to grow up and have fairly normal lives, even if they are lives with daily medication or a strict diet to follow. Some have made the heartbreaking decision to start hospice care for their babies, and are making the most of the precious time they get to hold them in their arms.

And we are all in this together.

Can I tell you some things I have never heard? From the mamas of miscarried babies or the mamas who are preparing to say goodbye to their babies, all while they watch mine learn how to walk and find his voice and discover the world?

You could have it so much worse.

or

At least he's doing well now.

or

You are actually really lucky.

Because we are in this together. It's not a competition, because if it were, no one would win. We are in this together. From the parents watching their child's brain slowly shrink while she continues to have seizures that doctors can't diagnose or stop, to the single mama who somehow manages to be present and joyful (at least most of the time) and make sure that her daughter has good memories of her brother for the few years they get together.

We are in this together.

We advocate for each other, and for each other's babies, because sometimes it is just too hard to do it ourselves, but it needs to be done. So we step up for each other, knowing that when we are down, someone else will have our back.

Even if my child's diagnosis is "worse" than yours, I've got your back. Just like I know Amber and Lindsay and Kelly have mine, even though their kids diagnoses are "worse" than D's.

Because we are in this together.

a convenient tree hugger: who gives a crap? toilet paper

Who Gives a Crap? Yes, that is actually what it is called. How could I not try it?

I was intrigued: 100% recycled toilet paper? Sounded a little disgusting, to be honest. But they also advertised no plastic packaging, and I'm committed to reducing my plastic waste however possible. I'll try anything once, right? I won't go into too much detail about the product, because you can read all about it on their website. Super quick summary: you can either buy bamboo TP or TP that is made from recycled books and office paper.

I went with the slightly more budget-conscious option: 100% recycled. I was a little nervous, because I don't buy junky toilet paper. It has an important job, so I've always said that I will spend a little more money on stuff that is at least decent, if not awesome. But the description claims that the product is as "soft as unicorn kisses," so I went with it. Let me tell you: this stuff is pretty darn great. I'm not going to lie and claim that it's the softest thing I've ever used, but it's actually up there. I was very pleased.

As an added bonus 50% of the profits (over $1 million so far!) are donated to build toilets in developing countries. As someone who has traveled to developing countries and seen what the toilet situation can be (think of an actual, literal hole in the ground), I can tell you that this is significant.

Now for the down-side. Because there is one, and definitely one I have to consider for my family.

I love the name. It's cute, it's catchy, and it's relevant. It's also very visible. And not necessarily something I want my five and seven year olds seeing all over the house.

Each roll comes wrapped in super-cute paper with fun messages. Normally, I would give them to my daughter and let her practice her origami, or I would flatten them out and donate them to the new Maker Space at the elementary school.

But there's this:

Right smack-dab in the middle. So into the recycling it went. Or the bonfire bin if fall ever decides to come back to Minnesota.

My final call: The name is not necessarily a deal-breaker, at least for me, but it's definitely something to consider. I will absolutely order the toilet paper again, especially if a good deal comes along, and I will take a look at their other products (tissues and paper towels) when I need to replenish my stock of those, too. If you, like me, give a crap, and you are interested in ordering, I hope you'll consider using my referral link! Click here to shop, and you'll get $10 off your order, and I'll get a $10 credit! We both win!

a convenient tree hugger: napkins (but not paper towels)

I made the switch to cloth napkins several years ago, and it was pretty darn easy. I bought several yards of plain gray linen for pennies a yard when Hancock Fabric went out of business (a sad day in my house), I cut it into squares, and I serged the edges. It probably took me an hour to make a whole slew of them. They're nothing fancy, but we use them to wipe our dirty mouths, so they don't need to be.

To be honest with you, we do still have paper napkins, too. Our stash of cloth gets us a few days, but if you think that I always keep up on laundry, well, think again! Sometimes we do resort to paper for a day or two. This is a problem that could easily be solved one of two ways: doing laundry more frequently (not likely) or making more napkins. I'm going to opt for the latter.

And while I'm at it, I might as well make an extra set to give away to one of my lovely readers! Enter below for your chance to win 20 premium ultra deluxe* handmade cloth napkins!

*They're not that fancy. They're fabric with serged edges. But you don't have to throw them away after you use them! I will let you have input in the fabric selection, though. I'd hate to make you a set of red and white checkered napkins and find out that your dining room is blue and green. Or something.

You might be thinking "Yay! Cloth napkins are great! Let's even take it a step farther and add some reusable paper towels to the mix!" I'll be honest, I once thought that myself. I even pinned a couple easy patterns so I could make my own, since I am my mother's daughter! Then I looked at the occasions when I actually use paper towels. They are few and far between. Here are pretty much the only times I use paper towels:

• When cleaning up bodily fluids.
• When wiping out something particularly oily or greasy.
• Other rare occasions when I just want to be done with the thought of the mess forever and not have to deal with it in my laundry.

In these instances, I just want to throw the towel away. I don't want dog-pee soaked rags in with my clothes. Maybe if I went back to cloth diapering, I would consider it, but for now, it goes into the trash. I made the mistake a few times of using a hand towel or other rag to clean up a greasy mess, and no matter how well I thought I rinsed it after, I still ended up with grease stains on the other items in that load of laundry. It's easy enough to get them out with dish soap, but why no avoid that step if I can?

a Rafflecopter giveaway

a convenient tree hugger

Lately I've been aware of just how much waste my family produces, particularly plastic. I know it can be recycled, and it's easy to subscribe to the "out of sight, out of mind" philosophy, but I'm starting to learn that's not good enough. I've read a number of articles that have been pretty sobering. Do a quick search for "What happens to recycled plastic?" and look for some of the newer articles. There have been some developments in the last year that mean big changes, so anything older than late 2018 is likely no longer accurate. This article was particularly startling to me.

So, what can we do about it? I've started a new campaign in my home that I am calling the "convenient tree hugger" campaign. I'm looking for easy ways that I can use to reduce the amount of waste we discard every day. Some things are so easy I regret not doing them years ago, but better late than never, right? While much of my focus has been on reducing waste, particularly plastic, I decided to throw in a little animal love while I'm at it. If I'm already doing the research to find environmentally sustainable products, I might as well spend a few more minutes learning about a company's other ethical beliefs. Usually the companies that are into zero-waste packaging and sustainability are also big on being nice to the animals, so they're pretty up front and I don't have to dig very far!

So here are the criteria as I've been deciding which products to try and which ones make the final cut:

1. It must fit in my budget. And I work with a pretty tight budget. Dave Ramsey debt snowball type budget. As much as I would love to buy the vegan/cruelty free/stainless steel packaged/refillable mascara, $38 a tube just isn't going to happen right now.
2. It must work as well as the mainstream non-eco product. I used homemade and "green" laundry detergents for years, and eventually our whites were...not so white. I made the switch back to plain old Tide and I haven't regretted it. Though I will, in the near future, continue my search for a better option.
3. I am not opposed to making my own if possible, but it can't be overly time consuming. I have little ones, after all.
4. I'm not going to throw away a perfectly "good" product to make room for a new "better" one. I have a bottle of body wash that I received as a gift. To throw it away without using it would be wasteful and contradict what I am going for here.
5. For now, "better" is good enough. Toms of Maine makes some stuff that I really like, primarily their sensitive toothpaste. They are considered "cruelty free" (manufactured or developed by methods that do not involve experimentation on animals), but they are owned by Colgate-Palmolive, a company that is not. While I am searching for a toothpaste that is in no way associated with animal testing or packaged in a traditional "throw it away" tube, for now, Toms is good enough.

I'm really looking forward to sharing my finds with you all!

If you have a product (one that you make or one that you love) that you think fits the bill, I'd love to chat with you about it!

*Disclaimer: I know you can find absolutely any information you want on the internet, and that everything has to be taken with a grain or more of salt. But even if my latest reads are total BS and there is no plastic crisis in our world, the worst that will come of my efforts is less chance that there will be a crisis in the future. Worth it.

keeping my cool

Throughout this whole ordeal with the baby, and the continued ordeal with the baby, I've heard so many people say something to the effect of: "You're so calm through this". There certainly have been tears, but for the most part, yes, I do think Husband and I have done a pretty remarkable job of keeping our cool. There are two reasons for this:

#1: We have an amazing support system around us.

#2: We don't have a choice.

If you are struggling - with your own diagnosis, with the diagnosis of a loved one, with postpartum depression, with a string of bad days that have you down for no apparent reason - seek help. You do not have to do this alone. Asking for help does not mean that you are weak. It shows how strong you are. Just because some people appear to keep their cool does not mean that you have to, as well.

Here's the deal with my son's Lennox-Gastaut diagnosis and my apparent calmness: I realize that it sucks and I have mourned (and continue to mourn) the fact that my little dude may never have a normal life. But right now? He is doing amazing. He is defying the odds. His last several EEGs have shown remarkable improvement. He is developing socially, physically, verbally, and mentally at a steady rate, roughly a year behind his actual age dictates he "should" be. I realize that this could stop at any moment, he could start having a different type of seizure, or he could stop responding to his meds. Yes, it would be easy to dwell on that. I read stories about LGS children who develop fairly normally until the age of four or six, and then they stop, they regress, and their whole treatment plan has to be reevaluated. Sometimes the doctors just aren't able to get it under control. It doesn't mean they aren't good doctors. That's just the nature of this diagnosis. I am well aware of the fact that could happen to us.

But why would I want to dwell on it? Worrying about the future does nothing but rob me of the joyous present. And friends: there is so much joy to be had right now.

There are mountains to be climbed...

...meals to be eaten...

 ...books to be read...

and love to be shared.

These crazy little munchkins are raising a mommy who is present in today. Go hug a loved one.

lennox-gastaut syndrome: 101

I recently shared some information about infantile spasms, Baby D's first diagnosis. In November of 2018, we learned a scary truth. His infantile spasms had developed into something new: a rare and serious form of epilepsy called Lennox-Gastaut Syndrome (LGS).

The absolute best resource I've found for learning about LGS is this site. It gives you a ton of information in a way that is easy to understand. I really don't even need to write this post at the risk of being redundant, but I figured it might be good to make things a little more personal. When you can put a face with a diagnosis, it gets real. So I'll give you the super abbreviated version and this face to go with the diagnosis:

LGS is a rare seizure disorder, occuring in just 1-4% of all childhood epilepsy cases, or .1-.28 people per 100,000. A person with LGS can experience different kinds of seizures.  While Baby D's have all looked like his infantile spasms did (like this video), that could change at any time. Read about the different kinds of seizures here.

Because there are several different types of seizures and because they can change, treatment is challenging. One medication can be working really well for awhile, and then it can suddenly stop. We were warned of this the first time we spoke with his neurologist. He explained it by saying that treatment of LGS isn't necessarily a straight path. You don't try one medication because that's "the best" one and the move along a defined path from there. You aim for better each time. It's basically a very educated game of trial and error.

So what does treatment look like now? For us, at the time I am publishing this, Baby D takes a small pharmacy of medications each day: three that are specifically seizure meds, two dietary supplements, a multivitamin, and melatonin because he has trouble sleeping. I don't know that it actually does anything, but if Baby D with no melatonin sleeps even worse, that is not something I want to experience. Also, fluoride drops, because his teeth are in rough shape. I'm pretty sure this is an indirect result of the pharmacy that he ingests on a daily basis. I put so much awful stuff in his mouth, that he doesn't trust me with something like a toothbrush. It's a battle, and one that I am not winning at the moment.

In addition to the medication, we have physical and occupational therapists who come to our house each month to work with Baby D. We are so fortunate right now that he is progressing as well as he is. He's definitely still behind where a typical child his age would be, but he is catching up and gaining new skills very quickly.

So what's the prognosis?
That's a loaded question. The short answer is that we have no idea, so we're enjoying these days of progress. The long answer: he will likely have delays, possibly significant ones. He could be doing very well, and then suddenly stop responding to his meds. He could start having different kinds of seizures and we could have trouble finding the right combination of meds to control them.

"With LGS, some children have no developmental problems at first. But, with time, these problems may begin to appear."

"Unfortunately, there is no cure for LGS, so freedom from seizures and normal development is very unusual."

So...we don't know. Drop seizures are very common, so he may need to wear a helmet to protect himself if he starts having those. Emotional, behavioral, social, physical, and academic delays, to some degree, are likely. Again, the website above does a great job of spelling out the different possible outcomes. We're just taking it day by day and enjoying the good ones, knowing that they are not guaranteed.

What about non-pharmaceutical treatments? Wouldn't you like to try something more natural?
I would love to, but this is my kid's brain we're talking about, so I'm going to trust his treatment to those who have devoted their lives to studying it. I addressed this in my infantile spasms: 101 post, so I will refer you to that.

So what now?
Now I publish this post, go read in bed, and thank God for another wonderful day. Then I wake up in the morning (and several times in between, because Baby D does. Not. Sleep) and continue to love on my little ones. I know it could take a horribly challenging turn at any moment, but dwelling on that is unproductive. One day at a time.

Good night, friends.

infantile spasms: 101

In January of 2018, our little dude was diagnosed with a rare seizure disorder called infantile spasms. Since then, our journey has been, to use the appropriate cliche, quite a roller coaster.

For some basic information about infantile spasms from at actual doctor, I would encourage you to check out this 25:00 video. It's a bit long, but it covers everything. The more awareness there is, the easier it will be to get babies diagnosed quickly. It wasn't easy for us to get the diagnosis for our little guy, and I learned that you really do have to advocate for your child. As a parent, you need to trust your gut and push a little bit, even if a doctor tells you she doesn't think it's seizures and you're fine to just keep your normal appointment with your family provider in two weeks. We weren't satisfied with that, so we called a couple of places and found a neurologist who would see us in two days. He watched five seconds of video I'd taken before giving the preliminary diagnosis, which was confirmed with an EEG that afternoon. But I had to push a little bit.

Here are some of the most common questions I've been asked with their answers:
Spasms? Seizures? Which is it? Because it doesn't look like a seizure to me!
Me either! In fact, when we were first trying to figure out what was going on, I called my insurance's 24 hour nurse line looking for help. One of the questions she asked was, "Does it look like a seizure?" Of course I answered no, because my picture of a seizure was eyes rolled to the back of his head and limbs thrashing. Her question got me thinking, so I did a google search for "seizure disorders in infants." It didn't take me long to find this video, which allowed me to self-diagnose. That is exactly what Baby D was doing.

What caused this?
We have no idea. Surprisingly, this is actually a good thing. I can tell you what did not cause it: vaccines or electricity from the baby monitor we used in his room. No joke. Someone told me once that it was the use of electricity in his bedroom, like from a baby monitor. His MRI was normal, which means there's nothing structurally wrong with his brain. Nothing definitive has come back in several rounds of genetic testing and there is no history of seizures that we know of on either side of the family. Babies with no known cause are typically less likely to develop another seizure disorder later in life. Unfortunately, that wasn't the case for our little dude, but what can I say? He likes to be a trailblazer!

What is the process like to get a diagnosis?
If you suspect your child may be having spasms, try to get it on video. I took the video to our first neurologist appointment, and, within seconds, he was able to give us the preliminary diagnosis. We got checked in to Children's Hospital that afternoon, and an EEG confirmed it. When a baby with IS gets an EEG, it shows a very distinct pattern called hypsarrythmia. I'm no doctor, but I can tell that it looks like a mess!

How is it treated?
There are a number of different options, and the one you try depends largely on what your doctor prefers. We started off by giving the baby an oral steroid, prednisone. It helped, but it didn't get rid of the spasms completely. The next thing we tried was a hormone injection: adrenocorticotropic hormone, or ACTH. Giving my baby shots twice a day for seven weeks really sucked, but he stopped having spasms and his brain began to develop again, so it was obviously worth it. Both of these are typically (I believe) used fairly short term. Another option is Sabril, which is often used for longer periods of time. With the two drugs we used for Baby D, there were additional side effects. They were immune suppressants, so he was on antibiotics as a precautionary measure. They elevated his heart rate, so he took medication for that. There was something about increased acidity in his stomach, so he was on something to combat that. Elevated glucose levels, increased weight gain, inability to sleep at night unless physically attached to mama, and general constant crabbiness were additional issues we had to combat with daily tests, constant nursing, and a combination of medications. Not going to lie. It sucked.

What about the ketogenic diet/CBD oil/massage therapy/this other thing I heard about in a TV special?
Yes, these can be valid suggestions in some cases. I have talked to my son's neurologists about keto and the use of CBD oil. Here's the deal:
The ketogenic diet can be used as an effective and natural treatment of seizures in some cases. It's simply another avenue that doctors try, particularly if conventional pharmaceutical medicines don't work. From what I understand, the keto diet takes several weeks to be effective, and the seizures often get worse before they improve. With infantile spasms, quick treatment is key. Baby D wasn't developing, and was even regressing, while he was having spasms. By stopping the spasms as quickly as possible, you are giving your child the best chance to resume normal development. I think I also read somewhere that keto is most effective if the spasms are caused by a certain chromosomal abnormality. I could be making that up, but since that wasn't the case for our little guy, I wrote it off.
CBD oil seems to be the big new thing right now. I'm not a doctor, but when I asked D's neurologist about it, he was adamantly opposed to giving it, FDA approved or not, to a young child whose brain is still developing. He said that it can lead to very serious mental health issues, such as schizophrenia and others later in life. The most recent article I read stated that it has been FDA approved for ages two and up. By age two, a child who formerly had infantile spasms will likely have a new diagnosis if they are still having seizures. Hence the use of the word "infantile". So CBD oil probably shouldn't be used to treat infantile spasms. But ask your doctor. Don't take it from a mom blogger!
So yes, there are a number of natural avenues that can be pursued in the treatment of IS. However, as I mentioned earlier and as the doctor in the video I shared above states, quick treatment and resolution of spasms is key. This is my kid's brain we're talking about. If keeping him on high dose steroids for two months gets rid of the issue, I'm going to try that before I eliminate key food groups and hope for improvement within 6-10 weeks. I appreciate your input and I'm sure your intentions are good, but his father and I, along with a team of very intelligent and highly trained doctors and nurses, have got this.

This seems pretty scary: what can I do to help?
Why thank you. Yes, it is indeed very scary! There are a couple things you can do to help someone who is dealing with an infantile spasms, or another scary medical diagnosis.
#1: Vaccinate. While D was on treatment for IS, he could not get vaccines because the medicine compromised his immune system. His neurologist still advises against it, because his brain is, as he described it, a delicate instrument that we're trying to get in tune. You want to make sure it's solid before you give vaccines, which can cause problems for someone with a seizure disorder. They can not cause a seizure disorder, but someone who already has a seizure disorder needs to be careful. We are depending on herd immunity to keep him safe. I know some people are scared of the negative hype around vaccines. I know you may think you have a good immune system, so even if you do get a preventable disease, you will be able to fight it off. However, if you happen to pass it along to my son somehow, you could be endangering his life. Please keep in mind, if you decide to pass on that flu shot or a tetanus booster, that it is not just your life that you are potentially endangering, but his, as well:

#2: Food. This is universal. Medication made him constantly crabby, which made it difficult for me to get to the grocery store or to prepare food when I was able to make it to the store. His compromised immune system (especially in the middle of winter when this whole ordeal started) made me nervous to leave the house. We were so fortunate to have people regularly checking in on us, picking up the gallon of milk, loaf of bread, or bunch of bananas for us, and even bringing us prepared meals. Friends. Our village stepped up. It made what could have been a true disaster for my mental health into a difficult time, but one we were able to get through. Because we were not afraid to lean on our village.
#3: Company (but only if you're healthy and vaccinated). This time in our lives was isolating, but a time we needed companionship more than ever. We were scared to go anywhere and risk exposing baby D to germs, but we were also experiencing cabin fever to the extremes. To the people who came over and sat and talked or helped make dinner or swept my floor while I nursed an inconsolable child: you are what got me through.

What's the prognosis?
The sooner is it controlled, generally, the better the prognosis. Some kids see a resolution to their spasms quickly and never have another problem. Some (like our baby D) develop a different seizure disorder later in life. Some have longer term struggles as a result of the spasms or treatment of them, such as learning disabilities or emotional and behavioral issues. It depends largely on the cause of the spasms and how quickly they are brought under control.

What's next?
We got D's spasms under control in February of 2018. Then he relapsed in May, we got them under control, and he relapsed again in October. When the ACTH failed to control his spasms by November, we got the news: the infantile spasms were developing into Lennox-Gastaut Syndrome. The bad news: this is a very rare and serious form of epilepsy that is extremely difficult to control. The good news: we have an amazing doctor and we caught this early, giving D the best chance at a normal(ish?) life. We're taking it a day at a time, rejoicing in every victory and refusing to dwell on the setbacks. I mean, there are occasional bouts of wallowing in self-pity, eating ice cream straight out of the carton, and binging Netflix, but the next day I go for a run, make a healthy smoothie, and look for another reason to be grateful. They're not hard to find.

Baby is is raising a mommy who is resilient and grateful.

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.

i am a woman

I am a woman.

This is why I carefully consider where I leave my car in the parking lot. Driver's door next to a cart return is ideal. If that's not an option, I park where I'm least likely to have someone park next to me.

This is why I check my back seat before I get into my car. Even if it's parked in my driveway.

This is why I'm scared to run by myself in the early mornings before the sun comes up, even though it's often the only time my schedule allows.

This is why I run in the road if I am passing a home with a privacy fence or lots of bushes along the sidewalk. And why I run on the boulevard and hold my breath (figuratively, of course) whenever a car drives by.

Why I wear or carry two different GPS tracking devices when I run, and why my husband knows how to use them to find me.

Why I'm tempted to leave him with a picture of what I'm wearing every time I leave for a run, including a close up of the tread of my shoes. Just in case.

Why I won't go into the gym if there is only one other car in the parking lot.

Why I started teaching my children, both my son and my daughter, about consent when they were one and three years old.

Why, when I walk or run past the high stone retaining wall, I wonder at its legitimacy. Is there actually just dirt behind it? Or something else? Maybe I'll cross the street when I go past that house.

This is not paranoia. These are the thoughts of a woman living a time when rape culture runs rampant.

When sexual assault earns a slap on the wrist. Or sometimes a high five.

When young girls are taught that if a boy harasses them, it means they like them.

When young boys hear that it is okay, even normal, to show affection through physical, sexual, or emotional abuse.

When a catcall from a passing car has become so normal that it earns an eye roll at most.

I am a woman. And I have had enough.

dads don't babysit

I know there are a thousand posts out there like this, but there are still two thousand posts, commercials, and ads that paint a picture of fathers as incompetent buffoons who don't know that they shouldn't use the whole tube of diaper rash cream when they change a baby's diaper. That is, if they even know where the diapers are. (Yes, those are actual scenarios that I read in a blog post. No, I will not link to it because I refuse to help the author boost her numbers.) So I'm going to make it 1001 "dads are parents, too" posts, because that is ridiculous.

Pregnant comedian Ali Wong stated: I can already see how there's this crazy double standard in our society of how it takes so little to be considered a great dad. It also takes so little to be considered a [horrible] mom."

I changed a word to keep it PG, but I don't think she was out of line in using the word she did. 

To a mom: Let me probe into the depths of your personal life to discover that you are breastfeeding, you use cloth diapers, you don't work outside the home, and you wear your baby in a carrier rather than using a stroller. But you don't make your own baby food purees? Don't you love your child?!

To a dad: You put your daughter's hair in a ponytail all by yourself? We're having a parade in your honor!

And don't even get me started on the lack of changing tables in so many men's restrooms.

Maybe if society as a whole starts to expect more of fathers, like, you know, that they be equal parenting partners (like so many already are) then more fathers will feel valued enough to stick around. The idea that fathers are inadequate or even slightly substandard as parents is ridiculous, to say the least. It's just as crazy as insinuating that women aren't as capable of handling themselves in the workplace as men.

If this post speaks to you, please share it. If it doesn't quite hit the right chord, but you agree that fathers are parents too and deserve to be treated as such, then please find an article or blog that does speak to you and share it.

This is not a rare occurrence in our house. And I can't tell you how many times he has left the house with sparkly princess stickers plastered all over his shirt.

fmf: heal

Here are the rules:
1. Write for five minutes flat for pure unedited love of the written word.
2. Link back to Kate Motaung's blog with the rest of the Five Minute Friday-ers.
3. Comment on the person who linked up before you.

Please join us!

Today's prompt: heal

GO
Oh, Kate. It's like you are speaking to my soul.

This week as been one of healing. Last week, I did not like my path. Today, I'm still not crazy about parts of it. But I'm healing.

Aside from my amazing support system, here is the most important factor that is helping me heal: I've been able to help others.

I have a friend who's in a tough spot. She's going through some really hard stuff, and it's hard on her friends and family, too. While I haven't been as close to her lately, we will always be nearly birthday buddies, and I can still be there for her while she continues her long journey of healing. And something else, perhaps just as important: I am here for those who are close to her. Don't forget the father of the baby that was miscarried. Don't forget the friends and family of the one diagnosed with cancer. Don't forget the loved ones who just watched their daugher/son/brother/sister/friend just attempt to take her own life. They, too, need help to heal.

STOP

let's get rid of the stigma

Betty has cancer. There is no reason she should have cancer. She eats well. She exercises regularly. She lives in a safe environment and is surrounded by people who love and support her. Betty is a good person.

Betty knows she has cancer. She fights it every day of her life. Some days are easier than others. She feels okay, so she gets dressed, puts on some jewelry and a little make up, and goes out. She feels like a normal person for a little while and the world can't tell that she has cancer.

Other days are harder and she can't get out of bed. Sometimes these spells go on for days or weeks at a time and Betty has trouble remembering that there is life outside of her cancer.

Betty doesn't like to talk about her cancer. She doesn't want pity and she doesn't want people to treat her differently because of it. She's so much more than her cancer, and that's how she wants people to think about her. Yes, it is part of her, but it's not everything.

Even though she doesn't want it be the only facet of her that people see, Betty knows that she needs to talk about cancer. The more awareness there is, the more support there is, and the more people will know how to react to and support those who are fighting.

Now go back through those last five paragraphs and reread them. Only this time, replace the word "cancer" with the word "depression". If your attitude toward Betty changes, something needs to be different. The negative stigma around depression and anxiety and other mental health issues is literally costing people their lives, and it's up to us to work together to change it.

Maybe that girl who posts melancholy facebook statues every day is just being dramatic. Or maybe she's contemplating the best way to end her life because she actually truly believes the world would be better off without her. She is someone's daughter and sister and best friend.

Or maybe the fake smiles have the world fooled and nobody outside her most intimate circle even know because she doesn't want to talk about it because she's scared of the judgement of strangers or those who are supposed to be her friends.

fmf: path

Here are the rules:
1. Write for five minutes flat for pure unedited love of the written word.
2. Link back to Kate Motaung's blog with the rest of the Five Minute Friday-ers.
3. Comment on the person who linked up before you.

Please join us!

Today's prompt: Path

GO
I love adventure. I love not knowing what is coming next. I love seeing something new on the horizon or ahead of me on the path and diving in to it with excitement and energy. Twists and turns in the path can be so exciting.

But sometimes they can be hard, too, and that's the path I'm on right now. I saw it stretching out before me, before my family. We would add a third, become a family of five. Obviously there are bumps along the path. You expect them, often with a sense of delightful anticipation. A little challenge will keep things interesting, right?

Right now, Chris Rice seems to sing about my path:
Sometimes the way is lonely
And steep and filled with pain.
So if your sky is dark and pours the rain
Then cry to Jesus.
Cry to Jesus.
Cry to Jesus and live.

Even though I have the most amazing support system and so many people who love and care about me and the most unbelievable husband who surprises me with a pound of my favorite coffee just to make me smile, it's still hard.

But thankfully, that's not the end of the song and that's not the end of our story. Because I know that someday, I'll be here again:
Oh and when the love spills over
And music fills the night,
And when you can't contain your joy inside,
Then dance for Jesus.
Dance for Jesus.
Dance for Jesus and live.