One Day

Almost a month since I last posted.  I have excuses, but they're still useless.  My little sister got married Saturday to the guy I would have picked for her.  She was a stunning bride of course and I was so honored to be asked to be a part of their day.  I had so much fun (too much fun if you would've asked me the next day) that I was actually a little bummed it was all over with. 

As a caregiver, we become so wrapped up in that role that it quickly becomes our identity.  For me, it is even greater of a struggle because I find myself neglecting my own needs as an amputee patient.  And my mental health needs as well because let's face it, that is the easiest thing to dismiss for us, right? 

Mental health will forever be a subject I am completely engrossed in.  It is such a major part of every single facet and part of us and everything we are and we do.  And it is such an important part of our physiology.  Why do we go to the doctor for help when we are injured or have strep, but refuse to get help when our psyche is not up to par? Why do we never question someone getting treated for cancer or epilepsy, but we silently put walls up when we hear they are seeking treatment for mental health reasons?

I understand that it's actually a two-fold answer.  First and obviously there is the stigma.  But for me, it isn't about the stigma.  It's much like a co-dependent substance relationship.  I know that for myself, to keep me mentally fit and at my best, I have to be very guarded with who I allow into my smallest social circle.  You've likely heard it said that if you want to become rich, surround yourself with rich people.  The same is true for mental health.  You can't improve your mental health if you are only ever around those who are not mentally healthy themselves.  It's just like a drug addict. It's SO EASY to stay there. 

I was bummed the wedding was over because I realized now I have nothing to hide behind in my own mind anymore.  I have nothing to preoccupy or distract me from something that is totally unrelated to my own family and our own struggles. I have nothing that is just mine, that I don't have to feel guilty about leaving them to deal with without me. I am feeling lost in the caregiver role.  I feel like it is the driving force behind everything I am and do now. I feel like a part of who I am as an individual, slips away with each wheelchair load, or each question. And it also feels daunting.  When I was the patient and he was the caregiver, we knew this was not going to be our life forever. We knew there was a change.  I would die and he would be able to move on.  Or I would live and get better and we would be able to move on.  But with him, we don't know what the future could be.  And that scares me.

He has now received four doses of weekly steroids.  He thinks his legs are getting stronger and will try to stand.  I remind him gently (sometimes, others not so gently) that is how he has fallen almost every single time - trusting his body when he knew it wasn't trustworthy.  He still has not regained any sensation in his right side and sometimes it frightens me how little he can control his right side.  His left side often and randomly feels "weird, but not the way the right side does." While the apparent strength in his legs does give us hope, even he freely admits he feels a bigger struggle cognitively and mentally.  I can see it wearing on him physically now too.  His eyes don't track together, he looks confused at times and I wonder if he knows what we are actually doing and if he is frightened about his confusion but is also too proud to ask me any questions.  His mood swings have been a lot to handle lately and they definitely take their toll on us all, him included.  I find the well of strength I used to dig down to refill from is quickly depleting.

I still struggle with balance.  In every way: walking on my own, 😆 being caregiver vs wife.  Being caregiver vs mom.  Being caregiver vs patient.  Being caregiver and working or "taking care of myself".  I have always prided myself on the load I can carry and my pain tolerance, both physically and emotionally.  But tonight, tonight I feel tired. Tonight I wear my frustration on my sleeve like an ugly reminder of what our daily life has become.  I chastise myself for being angry and not being stronger.  For not keeping it together better and the house in order more.  But a very new and very dear resource and friend who has literally been on this same journey told me I need to give myself permission.  Permission to mourn the loss of my marriage and my husband as I knew them, even though he is still physically here.  And that concept alone will take time to absorb.  In the meantime, I do what everyone else does - one day at a time.

Jeremiah's Update

I wish I could write something poetic, heartfelt, or even something I can smile at once I've completed it. But this post is just not going to be one of them.  And that's why its taken so long to produce.  I am finding further frustration in the situation and circumstances that slap me in the face every day.  The harsh reality of "our new normal" that never feels to match up with even our obscure oddity way of life.  Jeremiah has not improved.  He continues to decline.  And perhaps my silence here on the blog lately has been my own private acceptance of things.

Jeremiah has decided to stop being stubborn to the here and now.  He has accepted the help from the therapists, and is now embracing all the devices they have recommended for him.  Don is putting a ramp back up. We will have some bars installed in the bathroom. We have moved our bedroom around and purged much of our belongs so as to give him ample space in there for the wheelchair.  We have made signs to post around the house to help him remember what he can't do alone.  We are starting the process to have home health aide come in and will also have a PCA to help as well.

Dr. Kentarci feels he would benefit greatly from in patient therapy and that is the next "project" getting him admitted to that. The reason is because he can have more focused attention on his therapy sessions.  This sounds like it would not be any different than outpatient like he is doing now, but anyone who has walked this same path, can explain that it is much more beneficial to someone in his situation.

Dr. Kentarci also wants to start a once weekly, 6 week steroid course to try to keep the inflammation around the lesions at bay somewhat. In his words he is trying to keep Jeremiah from ending up paralyzed and by us some time to get to the next OCREVUS® dose early next Spring.  We will have a repeat MRI at the end of those 6 weeks to compare to his August MRI and see where we are at then to determine what to do after that. He hopes that someday Jeremiah will have some use of his legs, but that isn't a concern right now.  We have to deal with what's happening now before we can deal with anything else.

How is he holding up? Who knows.  Honestly, his short term memory is so jacked he rarely can recall one day to the next. He confuses time a lot yet and he also confuses people and conversations.  He gets frustrated because he is more aware of his speech issues; trouble finding the correct word, trouble holding conversation, speech itself - it's all a big struggle for him and he mostly just avoids it all together.  This is extremely difficult for those of us who are around him all the time.  It's a benefit of sorts to him as he simply may not remember the last 24 hours.  So if it was a bad day, it falls by the wayside for the most part for him.

How am I doing? I'm exhausted. Mentally, physically and emotionally. I feel like I'm on the brink of a nervous breakdown and I am barely holding it together. I feel like I'm failing in all areas of my life; my business, my family, my kids, my finances... It's more stress than I could have been prepared for or even understood before hand.  I have always had the mantra "one day at a time" and I am only holding it together as much as I am because I am totally ok with taking it even one hour at a time. I am trying to get better about reaching out to those around me, especially those who offer the help.  But it's not easy for me.

The kids... well, they are amazing. And definitely each have their moments of weakness and breakdown.  Of total emotional hell where everything feels like its fallen apart beyond repair. But more often than that, they give me purpose and drive to continue to keep focusing on the future and the blessings we still have.

Find the good

I have not posted in a while for a few reasons. One, I have been REALLY busy trying to juggle appointments for Jeremiah, work, and the kid's pre-school goings.  That said, I also didn't post because it was easier to avoid it somewhat.

Many of you know that we went to the ER last Sunday.   He was given a series of a nerve block oral med, a 5-day course of oral steroids (that is actually 6 1/2 days but whatev - I'm not the doctor) and then he also had his pre-scheduled MS drug infusion last Thursday.

The first full day home after we left the ER was a little rough. We learned that staying ahead of the pain with meds was crucial and I set alarms to make sure that he took his meds before so we weren't trying to play catch up to manage the pain. I think that's a man's mentality - tough guy, I can handle it, but when you can't you really can't.  He obliged my requests and took his meds with little vulgarity from yours truly.

The next few days went off rather quietly for once. He was not improving but he also was not having any worsening of symptoms, which at this point, is a definite "win" in my book.  Last Thursday he had the infusion, which comes with an IV steroid and again, he tolerated that very well.  No obvious or noticed side effects.  So far we are both really liking this option.  He won't have another infusion of that for another 6 months.  Which seems scary given how ill he is, but these meds do not necessarily repair current attacks, they only work to help lessen future ones.

Then this weekend happened.  He had no steroids to take and while I didn't think it would matter, it did. Almost like clockwork, about an hour after he would have had the steroid dose, he started to have pain.  We doubled up the OTC Tylenol as instructed.  It helped some but definitely did not alleviate his pain.  The next several days the rest of the weekend was much of the same.  It seems to come on suddenly and leave just as suddenly.  He still lets out little moans but otherwise fights the pain. And it's clear on his face he is.

We also had a "whoopsie, I'm stubborn and/or too forgetful" as he had a pretty big fall the other night.  He is SUPPOSED to use the wheelchair to get right up to the toilet, then transfer safely to the toilet.  However, he likes to see if he really needs to. But he also is smart enough not to test this when I'm awake, and thus why we continue to have these lovely middle of the night occurrences.  Turns out he does really need to, and he hopefully will remember laying in the tub where he fell, waiting for me to get up and come to rescue him the next time he wonders if he really needs to do it that way.  The old saying 'better safe than sorry' was definitely lost on that one!

He's been in the wheelchair for about a month now full time.  We realized this weekend that his limbs are getting "worse" and he even struggles to walk fully assisted. It looks like watching someone fully paralyzed try to walk - the legs and feet just don't.  I can tell he is trying to move them like he should, but they end up getting dragged and tripped up.   So at this point, I really do not know what to expect in that regard.  Many have asked if we need the ramp put back up, Mayo has told us not yet.  They are still hoping and working toward mobility for him.  So again, we wait.

Beyond that, his cognitive issues have rapidly declined. He struggles for words, even less advanced words.  He can't recall the names of things and tries to just describe them sometimes. Other times he does ok conversing and as long as he doesn't have to recall any info or details, he can carry on somewhat normal. I have started calling him my storyteller because that's very much what it feels like. He needs to continue to talk even if he struggles and its hard for him.  This is true for anyone. You must try to do what you think you can not do, or you will never do it. Simple as that.  If you don't ask, the answer is always no. If you don't try, you'll never be able to.

It is painful for me to watch this unfold.  Especially when I catch a glimpse of a photo of him the way he used to be, the way he is in my mind.  The person sitting in the chair fighting to not fall asleep or struggling through pain filled eyes to just have conversations with his family is not the father to our beautiful children or the man who took my hands at the altar.  We both have agreed I'm a better patient and he's a better caregiver. I would gladly give another leg if I could take this from him.  It's so hard to watch him deteriorate day after day, and the fear of the unknown is real. No one knows any of the answers to the questions many of you have asked or the ones that repeat in my mind as I struggle to sleep at night.

I just want you to all know, the doctors are doing everything they can and we are NOT dissatisfied with the care he is receiving.  They are not giving up on him, they are continuing to fight and try different treatments, he just has not responded yet to anything.  We are still hopeful for recovery, at this point of any kind.  And I wish I could report that he has improved. But it seems any recovery he reports (Saturday he said he felt like his eyes were better!) seems short-lived and fleeting. (Sunday he told me they hurt so much he was not able to even tolerate wearing his glasses).  I hope these small victories, even fleeting, are proof positive that his body still has the ability to fight the MS.  He's far to young to be going through this and our family was already deprived of so much time to just be.

My request today is this: don't take it for granted. Anything.  Hugs, reading, pains at work... all of these things are simple things that everyone, including us, take for granted because life is so busy and full.  But all of our things - even the bad, are reminders of good. Clothes so wet I have to change my bra when I get home from the little shower this morning means I was able to walk outside in the rain and have dry clean clothes to put on as soon as I arrive.  Waking up with a stiff neck? You were able to wake up and your body is still intact enough to feel that pain.  (Trust me, it sounds nice not to have feeling, but it isn't!) Your job sucks and stresses you out? You have the ability to earn money for yourself.  Kids are sassy? Great, that means you were blessed with a family and they are listening to you (probably) I could go on and on.  I challenge you to take the thing that seems like a problem, or a curse and find the positive and the good in it. It's there, you just have to look for it.

Another day...

For the first time since I started this blog, I'm not even sure where to start or what to say.  I'm exhausted.  Saturday Jeremiah spent nearly the entire day in his broken recliner.  Didn't even want to eat.  That evening I sat with him to really observe and check up.  He said he just wanted "to listen to the game, not watch" and he couldn't feel either arm.  I poked and pinched and he had no response. I asked him to make fists with each hand, and he only accomplished a sort of fist about 25% of the time.

Around 3 AM Saturday night/Sunday Morning, he used the wheelchair to get into the bathroom. When he came back from that I could tell something was wrong. He wouldn't stop moving all over the bed, even almost falling out. He was moaning in pain and there was clearly a lot of pain in his trembling voice. He managed to tell me that his neck and shoulder hurt.  I assumed he must have slept on it wrong and tried to find a knot.  He screamed out in pain as he wasn't even able to tolerate the slightest pressure.

He said he wanted to go sit in the chair, thinking sitting upright might provide some relief. about 2 1/2 hours later (around 630 AM by now) he came back into the bedroom and said he was not able to sleep at all and couldn't take it anymore, he needed sleep. He transferred to the bed where he immediately started crying out in pain.  He asked to go to the ER as the pain had spread down his chest and rib cage and it hurt to take a deep breath. I called his mom to come to get the kids and we went right over.

We got to the ER a little before 9 AM Sunday. And we would spend the next nearly 10 1/2 hours there.  They did a bunch of tests, as usual, we waited for neuro for about 6 hours.  And then again another for pharmacy as they sent his scripts to Florida.  Must be a subliminal message.

At any rate, they finally decided that the pain he is having is similar to what other's call "the MS hug" and it can be very painful.  They said he has two new and very active lesions on his C3 and C4 and that is what is causing the pain.  They told him very bluntly they do not want him on narcotics for the pain, and he would be in pain after the ER. But they don't want to mess with narcotics on top of everything else.  It's like putting a band-aid on something that needs to be fixed, not covered up. 

So he came home with a ten-day course of gabapentin and another course of steroids - this time an oral version.  He goes back in tomorrow for occupational and speech therapy.  He will go ahead with the second dose of the Ocrevus and we will touch base with his neuro team at some point this week as well to see if there is more to be done or changes to be made.  

The older two kids asked me today if dad is going to die from MS soon.  I still don't know how to answer that.. You'd think after having the same children ask me if I was going to die from cancer when they were 2 and 5 would have me better prepared for this. But it didn't.  

I also want to say a heartfelt thank you to everyone who has prayed, sent cards, shared our journey and anything else in between.  The big gestures and the small events, they are all appreciated and we are grateful.  I also want to encourage everyone to continue to pray, but to also find a small random act of kindness to give to a stranger.  You don't know how much of a difference your compliment or your buying their lunch could make.  And think of the domino effect you could be starting. 

A special thank you to those who have been supporting my business.  I can and am working by the besides these days! And it feels good doing both! Thanks again, friends! ❤

Forward Momentum

Science was not my strong suit. While I really enjoyed it, I just struggled to grasp it as easily as I grasped other things, like words and writing 😆 But I do see science around me all the time.  Have you ever tried to stop something with a lot of momentum? A pool ball after being struck, a baseball bat mid-swing, maybe a dog after that squirrel. And have you ever tried to start something to move alone? Like your car out of the road when it won't start? The kid's play equipment you are SO sick of mowing around. Setting something in motion takes a lot of effort, but stopping something with forward momentum can be quite difficult.

.  

That's a great way to look at the trials in our lives. I will be the first to openly admit that the last week, I had several days where I felt like how much more can I handle? How do I know what a mental breakdown will feel like?  Maybe it'll be nice, I don't think they make you take care of other patients in Generose... But then I realize, that it is always much harder to start again if you have already started.  I'm well known for saying, "no, let's just get it done." when asked if I need to take a break from a task.  Because I know that if I go sit down and rest and my muscles and energy levels cool down, then so does my momentum and my drive.  This is a fine line. You can't just waste all of your energy trying to do things in a hurry. Because things done in a hurry are rarely done right.

Jeremiah's health is like that.  He's been receiving steroids since we went to the ER.  A dose each day.  And will tomorrow as well.  They seem to be helping. He reports better vision and tonight I made him push the kids in the stroller around the block.  Man, was that hard! Also a fine line between pushing yourself a little further for betterment and overdoing it! After he nearly fell down the porch twice he was excited to do something normal for the first time in a long time.

If you have talked to him in person recently, chances are he said something that didn't seem entirely right or maybe a little off.  He's still not having a ton of luck with his memory issues. Cognitively words still escape him.  He told me the meteorologist he saw in the ER made notes in his file! ha!  At least he knew that was the wrong word! His speech patterns have improved, but certain sounds put together are still hard.  He is improving on the "drunk tests" some, which is encouraging!  

We feel your prayers.  And your support.  We try to answer each message, comment, share.  Please have patience with me, I'm REALLY behind! :) I encourage you all to pray for someone you do not know as well. Pray for someone in a similar situation to you, or us, or maybe something you don't think you can handle.  So many people in our lives feel so alone.  For whatever reason.  We may not know what their struggles are, but that does not mean we can not pray for them.  Because with 7.6 BILLION people in this world, I promise, no one is alone.  

Mom, you're doing just fine

"There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love." - Washington Irving

If you listen to me long enough, you'll know quotes are big for me. And this one plays in my mind like a broken record. Especially today. Growing up things were not always as easy or nice as they could and should have been. I felt like tears and crying were showing whatever the evil was, that it was winning. So around age 10, I just started to do everything I could mentally to never cry. I thought crying was perceived as a weakness. And I HATE feeling weak.

Now that I'm an adult and I know better, I still "can't" cry. I am not sure if this will come out right, but my tears are internal. My pain is inside and doesn't come out in a physical manner that others can see, like tears. It comes out in other ways, frustration, mental fatigue, severe back pain (like muscle knots and tension) I wish it came out in tears because we all need to release our emotions. All of them. Think about it. We smile when we are content, laugh when we are happy, yell when we are angry, scream when we are in pain (usually). Even an infant knows to express their emotions.

Today was a #MomFail! I had 3 alarms set because I had 3 things to do this AM. But Emma told me that she didn't need a ride because Grandma was giving her one. So my brain apparently heard, 'you now have absolutely nothing to do today but sleep in and miss every single thing you needed to get people too.' Olivia didn't get to Plainview with her sister, despite asking me if she could. Jeremiah was 40 minutes late for infusion and I forgot my wallet at home, of course, so didn't get milk for cereal at noon because that's just how we roll around here. I left the house already behind for a very important appointment with 3 kids crying, lots of swearing and Jeremiah thinking "he's fine, he can do it himself" I told him the stubborn thing is getting old and just not the time. To which he replies, "it's not my fault it comes with the last name". At least his wit is still intact 😉

My "tears" today were for feeling like I let my family down, again. For the 89.00 gas tank fill. (Gas is just so expensive! Why can't they make a car run on my family's gas, because we would be all set if they could....) For the lady at Bennett's (the grocery store in town) - I don't know who it was, Olivia wasn't sure, who paid for the kids donuts. And whoever put the $450.00 in my People's Checking. I'm 98% sure I know who you are, but the bank didn't identify you. You don't know how you helped. You kept my insurance paid and that's crucial right now for obvious reasons, and my cell phone bill paid - which again, is our lifeline right now. These are blessings, my friends. Despite all of our trials these days, we are still, so. very. blessed.

My message today is for all of you mom's out there. I feel you. You are wondering if you are doing it right. If you are a "good mom" If you yell too much. If you buy too much. If they love you some days... I'm here to tell you if you think any of those things, then chances are HIGH you are "doing it right". It's like I tell my Pampered Chef Team, if you are worried you are being too pushy, then you aren't. The salesman who is actually too pushy, never questions if they are. It's the same for being a mom. All any of us can ever do, is our very best. As long as you are honestly giving it the best effort you can, you're good. Each day, try to be better than the day before. Because forward progress of even the smallest amount, is still better than no progress at all. So if you are aware of being a good mom, then you are. 💓 And, it's ok to cry!

Ring

Ring.  A circle, a symbol, a beautiful piece of jewelry, a shape, part of a sport... a ring is so many things.  And like so many things in this world it means different things to everyone. To me 'ring' reminds me of our wedding bands.  When I was sick, I asked to never have my ring taken off (for surgeries and such) they would tape over it and tape it on to my hand because I think they saw how important it was for me. How much my soul needed that ring to stay there. It sounds funny, and I can't explain it, but it was a real thing for me.

Now that I'm no longer the patient, and I'm the caregiver, ring means even more.  Funny now story.  (but NOT at the time) Like 2 years ago, Jeremiah ended up losing a lot of weight, due to the MS I am sure.  His wedding ring kept falling off.  He lost it once and I was SO angry.  Because those were the same rings we had worn, the same rings we said our vows with. AND of course I had told him that it was going to get lost and until we could resize it, he should just keep it in my jewelry box.  He knew better, I guess. So the ring was lost and he was afraid to tell me.  I noticed eventually and he had to confess.  Then one random, fluke day, I was outside our house and just happened to catch it from the corner of my eye.  (after having prayed and prayed and prayed that I find it) He just HAS to put it back on.  You see where this is going.  Yup, he lost it. Again.  Only this time, he *thinks* it's somewhere maybe in the yard.  Possibly in the gutters or on the roof.  Not really sure exactly.

So, I saved up my Pampered Chef commission last year.  A little from each check so I could pay cash (being debt free is on my bucket list! #DaveRamseyFan) for a new band for him.  We got one very similar, but different colored to his original.  And he's worn it every day since.  Every time anything happens to us, we always say, what did we learn from this.  (The kids HATE that...) and I learned an important lesson.  The ring he wore was important. But it wasn't the ring itself that had meaning to me.  It was the man wearing the ring.  Seeing his ring on his finger reminds me that we are a team and that we are always better together, regardless of the state we are in.  (so far we like MN - haha)

This week has been rough for us. Monday night, Jeremiah lost the ability to walk.  He was not walking well, but Monday night he was not able to walk at all. Remember when you were a kid and you put your forehead on the bat and then spun around and tried to run to first? That's what he looked like.  It was brutal.  Last night, my sister came over and helped me keep him steady on the stool while I cut his hair and shaved him.  I helped him to the shower, where he is finally using assisted devices.  He called out for me really quickly and when I got back in, he was saying, "I can't see, I can't see anything" He has lost all vision, and very suddenly. "It just went black" I rushed him to the ER around 6 last night.  We arrived home around 2 AM this morning. In addition to his vision, he was having much more general confusion, (confusing time and directions) he was having severe impairment in his abilities. (We lovingly refer to them as the 'drunk tests'  Touch your nose then my finger, stand with your feet together, trace your shin with the opposite heal, repeat this phrase, etc)   and he was having some other difficulties as well.  (what is left, right!?)

Today we were back over at Mayo meeting with the therapy team.  He is being referred for ocupational therapy, speech therapy and physical therapy.  They'll also be prescribing him a wheelchair and other gait aids and devices to help him be more independent. The steroids he was given in the ER seem to be helping some. His mood was better today.  His vision seems to slowly be returning and he was actually awake for more than an hour today. Seriously.

Going forward, he will have more steroids every day until Sunday. He will have his new MS drug infusion as well.  He will also have a repeat MRI to track and compare from July's.  (I actually feared he had had a stroke last night...)  We will also be doing many therapy appointments as well.

SO many people are asking what you can do.  So here is my list, and it isn't easy for me to admit I need help...

1. First, pray and pray and pray some more. Not just for us, but for yourselves and those you don't even know.  
2. If you want to help us in a more material way, gas cards as we are making daily (sometimes more) trips to the clinic, and those awesome little parking ramp stamp cards.  (We are now going to have to be going between the campus') and food cards- like Jimmie johns or something near Mayo because he gets hungry during treatment and appointments.  And making sure he eats and drink has been a chore lately. 
3. I can not ask for money outright.  And saying, yes, it's ok to send a gift card still makes me feel... annoyed (with myself ...like I'm not doing my "job" as an adult I guess) That is why I say if you want to help, buy your pampered chef from me.  Host a virtual show with me. Refer me to your friends for pampered chef. Write a review for me on facebook for my Pampered Chef. I don't want to be given something I am capable of working for.  And I can work my business from his bedside while I find comfort and solace in staring at his wedding ring. Much love Friends! <3 
   

Officially Offical!

If you are on my facebook, you know that I recently asked if there would be any interest in a blog from your's truly.  Just a few of you had some mild interest so here we are.  If you don't know me, that was me dripping the sentence with just over the legal limit of sarcasm.  I still have not decided on a plan or direction for this. But the second I sat down at my desk, the name came right out and that was how I knew God was on board.

An accurate visual of us
trying to get through life

So with no plan and no real blog style yet, I figured why not start the blog and the very first post with some of the random thoughts I had on my journey around the sun yesterday.  Now, I already prefaced random.  But all women will understand this.  The saying about how a woman's brain resembles my internet browser - mega true.  supposed to be doing just the one thing, but have 32 other tabs open and I'm checking at least 9 of them. Here we are:

I added a new saying to the list, "things I never thought I would say": No honey, we don't put our toothbrush in our pee-pees. (If you missed that one random facebook post from several years ago, it joins things like, "Oh hey, pretty girl! Are you pooping?", "What's wrong with your penis?", "We can't go to the store naked", "...Because mommy can't pee outside like that..."  I would also now add, "Mommy can't grow a penis" "Why don't you ever wear underwear? Ever" (All of these things were said to a child under 3.  But not the same child, so at least there's that)

I also had my daily dose of, how bad am I really screwing this kid up for life.  The 13-year-old - which by the way, there's not a book or a class or professional on the planet that could have properly prepared me for this battle - had it out with me about talking.  That's right.  Talking.  She doesn't like to talk to me. Or anyone.  According to her.  After lots of screaming, a few swears, and LOTS of tears, I was questioning my entire parenting style and life choices.  But after about 49 minutes alone in her room, she came out and was completely fine. Which only left me wondering if it ever actually happened or I just had slid between the parallel universe we aren't supposed to believe exists. Either way, I take kids in good moods any way I can get them, so I just let it go.

Miah was not doing well yesterday.  So the last thought I will share with you for the day was not as

(Not from the day described)

random as it felt in the moment.  He has been struggling so much.  From the MS or the plasma exchange therapy we can't be sure which, maybe both.  He has been having constant symptoms for at least a week now including terrible cognitive ability, nearly no balance - walking from the chair to the bathroom is like a game of Russian roulette with all the furniture and things in the house, some headaches, lots of numbness, and his legs randomly give out as if all of the other stuff was not enough fun.  Yesterday he finally confessed to me after I VERY GENTLY (read: told him he was doing it or I was doing it for him) urged him to come sit outside while I swept up the weeds and grass my MIL had come to help clean up, that he now is having nausea that he can't explain, but comes and goes some as he moves around. I worry about things like muscle atrophy, weight (my 6 foot 1-inch husband weighs less than I do, and I look pretty damn good for 4 kids, a few major surgeris and that little leg incident) But what still amazes me every single day, is that man's optimism.  Even though obvious fear, anxiety and depression, at his core, he still has hope.  Hope for a recovery, hope he will be cured, and hope for as many of the years with me and our kiddos as we had planned on having when we started this journey together almost 16 years ago.  People look at me and think I'm strong, but I think they're looking at the wrong spouse.

I have to go pretend to clean my office now.  Until next time, friends! ❤