I...

This post won't be for you.  It's not even for me really. It just ... is.

I feel defeated.
I feel pain.
I feel sadness.
I feel anger.
I feel stress.
I feel lost.
I feel scared.
I feel confused.
I feel unsure.
I feel untrusting.
I feel numb.

I need my life back.
I need my kids to be ok.
I need new tires on the truck.
I need my husband not to be deteriorating daily right in front of us.
I need to dig down deeper than I ever have to find the strength I didn't know existed.
I need to be the mom my kids deserve me to be, the mom I used to be.
I need to not be afraid of the worsening ataxia and the looks of sadness in his eyes.
I need to not be so far in the red by mid-month every single month I consider desperate things.
I need to make sure that Jeremiah's getting the best care he can.
I need to make sure that I provide the best quality of life for him I can.
I need to trust that this will all be ok and remember that I am not alone.

I want to remind you life is precious - embrace it.
I want to remind you time is so fleeting - hold on to it.
I want to remind you, you're not alone- look around you.
I want to remind you to find the blessing in the curse - pray about it.
I want to remind you children are so innocent - LET THEM BE!
I want to show you there is kindness in the cruelty - just find it.
I want to lead by example that we must find positives in our day - they're always there.

I will hold onto love.
I will keep perspective.
I will embrace reality.
I will cherish smiles and memories.
I will always be thankful.
I will always pay it forward.
I will always be true to myself
                                    - even if that isn't the most popular or likable.

It's hard

The long stark white hallway has an odd smell I just can't quite place.  I listen to my footsteps echo down the corridor, my tennis shoes making their own separate sounds.  I guess a fake leg doesn't sound the same as a real leg when walking.  I can't help but be taken back by the beauty that surrounds me at the Saint Mary's campus as I make the somewhat long trek from the patient drop off to the Domitilla Building. Thoughts swirling around in my head, fleeting from very relevant thoughts to totally random.  I find comfort in seeking out the small details that most wouldn't notice.  That woman had silent tears streaming down her face.  That person was clearly in pain you can't see.  The snowflakes on the windows in the garden area froze perfectly along the grids.


I want to write here more.  I see so many people when I'm out and about and nearly every single one of you has commented on how much you enjoy reading my words.  Which feels so good. I am the eternal analyzer.  I need to hear something and digest it and consider it and all the possible scenarios, and outcomes before I "talk" about it.  This situation with Jeremiah has quickly become my Achilles heel.  Be torn by what I know to be true in my head and what I feel as emotions in my heart... watching what I can not see, but only feel.  Seeing what I hate and missing what I love.  The turmoil inside of me that is inexplicable simply due to the fact that I feel like we are on a maiden voyage.  And for the history of this family, we are.  We have faced many things - miscarriages, cancer, amputation, surgeries, house fire, pediatric epilepsy, high-risk pregnancies and more.  But this... this feels like the biggest.

I am also the "protector". I feel as though I see people's best qualities despite the ugly ones they may be showing off.  And while that sounds like a great quality it actually feels more like a downfall.  I want to keep everything "nice" and make sure everyone seems "happy" and I want to protect the image of what I think we are in my mind from the rest of the world.  I also have some empath qualities and so when someone says something to me, it hits deep, even if it wasn't that big of a deal.  And so I have been working very hard at sheltering the world from my family.  Or maybe vice versa.  I have not shared much of the hardship or the ugly.  I always answer with "I'm doing good" or "I'm doing alright/ok"  And that is just not true.

I am not doing ok.  I am miserable, stressed, exhausted - both mentally and physically. I'm scared, unsure of anything anymore and stuck in a constant ongoing hyperactive analytic state with every situation I can possibly think of.  I feel alone and lonely, even though I am almost never ever alone - even when I need to use the toilet. I only get to shower if I give up something else that needs to be done.  Like sleep or dishes.  I feel overwhelmed and frustrated. I feel misunderstood.  And most of all, I am beginning to feel angry.

Jeremiah had his in-home nurse evaluation visit last Monday. It lasted three hours and there were more questions than even I could handle.  She was kind, helpful, and very polite and understanding.  It immediately felt like a huge weight off my chest.  She said that Jeremiah would be eligible for some PCA help here in the home and that would help take some of the constant caretaking off of me.  She said she would recommend that we begin to check into assisted living facilities to decide what we want for his long-term care based on the progression of the disease.  She called back today to tell me that he does qualify for long-term care under our insurance policy and they would help pay for most of that expense, and he also qualified for PCA care at a max of 1 hour and 15 minutes per day, because the state does not recognize mental issues when assessing PCA qualifications.  She stressed starting the assistive living process.

Friday we went to Mayo for another big day of tests.  He had his MRI, was seen at wheelchair clinic to start the process of getting him an electric wheelchair.  We also saw his neuro team again.  Jeremiah misunderstood their first line of, "The MRI looks good!" because good to them meant something totally different than it did to him and we spent the next hour explaining that a good MRI to them does not mean he is going to be all better, that he will make a full recovery or any of the other shreds of hope he has been clenching tightly the last 7 months. The doctor looked at him point blank and said, "you will not make a full recovery.  You have to much damage in your brain." He explained that while Jeremiah might have the mentality of a five-year-old, and they can use behavior modification and medication to get him the mentality and thought process of a seven-year-old, then that is a success to them because they improved him.  But I am still married to a mental seven-year-old.

And there lies the ugly part of all of this.  That we have been together for something like 16 years, and we had worked so hard to get a strong marriage and family we were both proud of and the rug is ripped out from under us again.  AND we have to face the fact every single day that we won't get it back. There's no amount of therapy or understanding or facing reality that will bring him back to the place he was mentally just a few months or years ago.  And watching him struggle with basic human skills daily is taking a large toll on me.  I no longer feel like the wife. My husband can't remember details about when we met and started dating.  He confuses things about our wedding day.  He gets frustrated when he can't recall the children's birthdays with ease.  He gets angry when he stumbles on his words or says things that are awkward and uncomfortable.  He can't comprehend most of what I am saying just in general conversation and we are both painfully aware of it on a regular basis.  Mentally and emotionally we both just lump things together and pretend they are fine.

In front of others, he expends literally any energy he might have to put up a front and make sure they don't see how bad he is.  Most of the family thinks he "looks pretty good" or "seems like he's doing better" and in reality, I know that he has succeeded in fooling them.  He has recovered his mess ups and accepts the excuses that people make when he is odd.  He has always been witty and can laugh at himself and those two things aid him well in this journey of not letting people see the real situation.  He won't tell people when he is hurting, or exhausted or when he wants to be done.  No, he keeps pushing himself with a smile and a story for anyone who will listen, and then when we get home, literal hell breaks out.

He is short tempered, he snaps at the kids,  at least half of us are crying every day.  The other half are angry and want to be left alone.  It's tense and stressful here. Because he doesn't understand that when he thinks he is talking nicely, he is actually yelling in a pissed off tone.  And when he thinks he is being funny, he's actually hurting your feelings.  He has glimpses of his old self, and I used to treasure those and look forward to the next time I would see "my husband".  Now they feel like a fewer and far between reminder of what we are all losing.  The hardest part is those who love him and are still in denial or not fully aware/understanding of what his reality really is.  And I accept some responsibility for that.  But more importantly, I wish people made it a point to know.  If they love him, they have a right to know what is really going on.  And unfortunately, I do not have enough hours in the day to personally answer everyone's questions and fill everyone in on all the details.  And sometimes, I simply do not want to. Because it hurts.

I worry. About his future. Mine. Our children's.  My sole mission has become to protect their memory of him as a father and a husband to me.  Because he is simply too good of a man to let the MS rob his children of who he really was to them.  And what he really was before the MS ravaged his brain to what he is now and what he will become in the future. I know what you are likely feeling right now having read all of these words.  But I ask you push that sadness out and fill yourself with love and happiness.  Because even in the storm, we all still have blessings.  We all still have love.  And we especially are shown each day how blessed we are by a community of support from those who genuinely care.  If you've asked how you can help, and I have been standoffish or offputting - don't stress, I am slowly becoming open to the help. I simply want to find the right avenue and time for your help.  Pray to whoever it is you pray to.  For there are so many around you that need it.  ❤