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What is normal anyway?

As I type this blog, I am sitting in my recliner, as my husband sleeps soundly. It is 3:40 pm on a Saturday afternoon. This is our new normal.

I woke up this morning at 5:30 am. Got ready and went to graduation. Came home around 10:45 am, picked Timothy up and we went to the grocery store. Came home and prepared lunch and dinner for tomorrow. He’s now exhausted and done for the day and I am teeming with energy that I have no real way of expending.

So many of our days are now spent in the quiet of our home.

We don’t talk much anymore because extended talking seems to weaken him more and more each day.

Trips to places far away are a thing of the past since CHF (congestive heart failure) causes extensive swelling of his feet and legs upon sitting in upright for extended periods of time.

Going places now requires advanced planning. Is it wheelchair accessible? Is it outdoors? How far is the entrance from the parking? Is there parking? Are his meds packed? Do we have snacks? Barf bags?

So many things I took so for granted are the hardest now. I could kick myself for not soaking in the joy of enjoying time with my husband.

I could kick myself for always being such a stickler about spending! I should have heeded to Timothy’s spontaneous love of travel and adventure when we could travel freely and with enjoyment.

I have so many regrets. So many times I look back at our lives together where my Type-A personality prevented us from making memories that could have lasted a lifetime.

So now we sit. This is our new normal. And while it’s different. There is still joy in it.

My husband is sick, but he’s alive and with me. I still get to see his smile and hear his occasional laughter.

We are still so blessed. And I fully intend to embrace the joys in our new normal.

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Time away…scary times…still blessed…

Sorry I have been MIA…

I haven’t blogged in a while. It’s not because I haven’t had things to say. I have plenty. It’s that I just don’t always know exactly how to put what I am feeling/experiencing to words.

I am tired. Bone tired. It’s the end of a hugely chaotic school term. The kids are done. I am done. We all need a break.

Home has been tough too. I am finding that being a caregiver is the hardest job I have ever had. Unlike other jobs, there is no goal to strive for. You are basically in a waiting game with time. You are working so hard to make the person you love comfortable and happy in an otherwise uncomfortable and unhappy situation. It’s heartbreaking and backbreaking. But I am so thankful that God has allowed me the honor of caring for Timothy in his time of need.

My parents took us away for a weekend. It was hard work making sure everyone was taken care of. Both my mom and dad have disabilities, coupled with Timothy’s, there were moments on that trip where my son and I were scrambling, but oh, the amazing memories we made! I am forever grateful for the love of amazing parents. I will post a separate blog about this at a later time.

We had an awful scare Friday night. And I have been kind of freaked out since. Timothy had a really bad coughing spell, after choking on some water. He coughed really hard then just flopped forward in his chair, completely doubled over. He was not moving or breathing. I rushed over and pushed him back into a reclined position. His eyes were bugged out and his tongue was protruding. He was not breathing. I tilted his chin upward. He gasped and came back to consciousness. He had no recollection of being out. All this happened in the span of less than 30 seconds. To me, it seemed an eternity. All I could think of was, “He’s gone! Oh, my God! He’s dead!” I haven’t been that frightened in a while.

I reached out to his amazing doctor, who answers texts at 9:30 pm. He said it was called Tussive Syncope. Basically means you pass out from coughing. It’s very common in people with advanced lung diseases. He assured me that it was not cause for a hospital visit, unless Timothy was still coughing (which he was not). But it was scary, nonetheless!

Mother’s Day came and went. Spent some time with my parents. That was great. FaceTimed with Jorja. Sam came to church. Ate way too much food. All in all it was a pretty okay day.

There have been no great moments of things to blog as of late. I am just taking it day by day. Dealing with Timothy’s health and trying to hold it all together is challenging. I am really trying to stay positive. I know I am so incredibly blessed. But some days are harder than others. Some days I just want to stay in bed and pull the covers over my head and cry. But that is just not me. So each day, I put one foot in front of the other. Pray for strength, peace and joy and keep pressing forward.

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Am I selfish?

I am.

I just want, if not for just a moment, things to be back to the way they were.

I miss cuddles. Laying in our bed, together. These months of being apart at night are some of the hardest to bear. But Timothy cannot find a way to breathe comfortably in our bed, so he sleeps on a makeshift bed in the living room, surrounded by mountains of pillows, in an effort to keep breath in his lungs, as he tries to sleep. Though, most nights, sleep evades him.

I miss laughter. Laughter is not always a part of our lives anymore. We are often too focused on just keeping Timothy alive to just laugh and be silly. Things that were once funny elicit different reactions now. Tears flow more freely than laughter rings out in our home most days.

I miss adventures. Oh the amazing adventures we’ve taken and had planned to take! Travel is so difficult now. Gone are the days of spontaneous road trips to places near to our heart or new places yet unseen. Travel requires planning and is often curtailed by acute symptoms that make it unbearable.

I miss tenderness. Long hugs. Sweet caresses. Kind words of affirmation. Little things like love notes for no reason other than to make my day brighter.

I miss seeing my best friend’s eyes light up and his dimples deepen with happiness. His smile rarely reaches his eyes anymore. There is so much sadness in his eyes now, and there is nothing I can do to fix this.

I miss being treated like a princess–even though I often protested it–I miss it. Little things like coming into our room after I fall asleep reading a book and kissing me and tucking me in. Or having my coffee and lunch fixed on the counter for no reason at all other than to just make my life sweeter.

Our lives are forever changed. Things will never be the same.

He is still here with me. But he’s not the same person. PPH has robbed him of so many things and changed the way we both see things and react to things.

Roles have changed.

I am the caretaker.

I am the provider for our family now.

I now feel sadness a lot more.

I now feel loneliness a lot more.

I now feel guilt a lot more.

I am struggling to find out how to navigate this new “normal”

My love for my husband is unwavering. I will love him until one of us draws our last breath.

My faith is unshakeable. I would not be able to survive without it.

But I am only human…and sometimes I am weak.

Watching the love of your life struggle with an incurable illness sucks.

It just sucks.

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The mask gets heavy sometimes…

Since the beginning of this journey of illness and change my husband and I have embarked on, I have heard one thing pretty consistently, albeit in different utterances.

“Mandi, I don’t know how you do it. You are always so optimistic/faithful/loyal/helpful/etc.”

While, in many ways, this is heartening to hear. In other ways it sometimes makes me feel like a fraud. Because while outwardly I often look like I have it all together. Inwardly, many days, I can barely put one foot in front of the other.

Here is an example of something that happened this Monday morning. I was a few minutes late for work. Not because I overslept or spent too much time getting ready. I was late because on the way to work I began to obsess over the failed “date night” from the previous Friday and the following ill health that ensued for the remainder of the weekend for Timothy.

It began to overwhelm me. And I began to cry out to Jesus and ask Him why things had to be the way they are. I was sad/angry/depressed/confused and so many other emotions, all rolled into one. I had to call my work friend and let her know, between the sobs, that I was in the parking lot and would be in shortly, after I composed myself.

You see, while many people see me as strong and faithful, most days I feel like a fake or a fraud. Because most days, I feel sad, scared and confused. While my faith is unwavering, my resolve to maintain some semblance of normalcy is often in danger of failing.

The mask of having it all together is not just for my benefit. I am finding that many people just don’t know what to say or do when faced with a friend who is struggling. It’s easier to smile and say I am okay than to really tell people what we are going through.

So, daily, I pray. I beg for strength. And I put my mask on and tell every one I am fine. And I take each day, one day at a time.

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Truth, illness and date nights cut short…

Last Friday started out as a wonderful day. I got up. I went to work and had a great day. I came home excitedly anticipating a “date night” with Timothy. Before he got sick, we had date nights often. Now that he is sick, “date nights” are few and far between, if at all, and I realize I took many of our previous “date nights” for granted.

I could kick myself for that…

So I got home today to find my handsome husband showered and dressed, with a bit of color in his usually pale face. It was amazing to see this since lately, he’s really not been able to really get dressed. I quickly showered and put on a cute outfit in anticipation of a fun night at the movies, after a quick dinner.

We started at dinner and had a pretty nice time, but I did notice that he was struggling to get into the building. When we left, he asked me drive. And he sat in the passenger seat gasping for air for few minutes. I should have known then that a full night would be too tasking, but I selfishly wanted to spend time with the love of my life.

Upon arrival at the movie theater, I could tell Timothy was really struggling. As a teacher of students with disabilities and a daughter of a disabled parent, I am usually good at spotting issues with accessibility, but until tonight, I never realized just how inaccessible a movie theater is. Timothy barely made it in from the handicap parking space by the time he walked down the VERY long corridor (with multiple stops to gasp for air) and into the theater, he was almost unable to stand.

But my sweet Timothy is so strong and he wanted nothing more tonight than to spend time together and have some sense of the old normalcy we used to take so for granted. We sat through the previews and about 20 minutes of the movie, but Timothy was almost writhing with discomfort in his legs and feet. This is a vicious side effect of one of his medicines. After a few more moments, I looked at him and said we are leaving. He didn’t argue. He just said yes and looked so defeated.

On the drive home we talked for a while about how hard it is for him to deal with the fact that he has been diagnosed with an incurable illness and is ultimately facing death. We talked about his it is affecting him and how it is affecting me.

See what I love about my husband is the fact that he is and has always been a realist. While we are both believers in power of Our Lord Jesus and His ability to heal Timothy, if it is in His will. We are also aware that He may not chose to heal Timothy. He may choose to call him home. When? We don’t know. But we are making sure that we are trying to make every day count and be mindful of the time that we have here on Earth.

So our date night was a partial failure. We did have a wonderful early supper and great conversation. We spent time together. And that is what matters.

Life goes on. We came home. Put on our jammies. Iced his sore legs. And now he’s in the throws of a restless sleep while I am on my computer writing in my blog, trying to covey to my readers the reality of life when faced with a catastrophic illness.

The reason I am telling you about all of this is because, yeah, the date night I had envisioned fell short. And that sucks. But even though it didn’t go as planned, I got the blessing of spending time with my sweet Timothy, however short…it is still time I will always treasure.

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What happens when I can’t fix it?

Yesterday we got a letter from my husband’s physician regarding his health status. His health status is worse than I thought, way worse. It almost broke me. While I logically knew he is dying, without the concrete evidence of this letter, from a highly regarded physician, his diagnosis still didn’t feel completely real somedays.

I am a, self admitted, control freak. I thrive on order and things being done in an orderly fashion. I don’t do well with surprises or spontaneity. Things being out of my control make me feel like I am spiraling. I always thought that me being in control has always been an integral part of who I am and one of the reasons I have been able to accomplish so many things in my life.

I was wrong…

All this time, I have said I had it under control, I was lying to myself and to everyone else. I am finding that as each day passes and as more and more things happen that I cannot change, I have ZERO control of anything in my life. And I am finding, more and more, that not being in control is okay.

There is really no other choice…

This season of life, my daughter leaving and my husband’s illness has really affected me. In some ways, negatively. But in more ways, positively. It has been a learning process. I have found that I can stomp my feet, scream and shout and run in circles, all day long and never change the fact that my daughter has chosen to live with her dad and my husband is dying. And these are hard facts to face.

I am learning that it’s okay to not be okay. It’s okay to be angry. It’s okay to be sad. It’s okay to feel out of control. Because I am also learning WHO is actually in control.

My prayer this morning was simple.

Dear Lord-Please help me to wade through all the “facts” we are getting from the doctors and find the “TRUTH” that is found only in you. Help me to not dwell on the unknowns in our life, but instead lean on Your Holy Spirit for guidance and direction as we travel down this dark and unknown road and I feel so out of control. Remind me that You are in control and I am not. Help me to relinquish control over to you in all areas of my life. Amen

Jesus is in control of it all. He understands that I am weary and stressed. He knows that I am unable to fix any of this . So I am learning to not be afraid to say, “I need help”. Or, “I can’t do this”. I am learning to let the Holy Spirit lead me and know that Jesus is the Great Comforter. I am learning to let go and let God.

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I do…

I take you (insert name here) to be my wedded (wife/husband) from this day forward, to have and to hold. For richer or for poorer. For better or for worse. In sickness and in health. To love and to cherish, until we are parted by death.

Our wedding rings…

Any one who has been married has spoken vows of some sort. Whether they are generic vows like the ones above, or heartfelt words written specifically for your beloved, we all, who are married, have made a covenant before God and witnesses to love our spouse through it all, until death do us part. But how many of my readers have actually had to put those words into action?

I have been transparent with my readers about my past. Quick recap, I am twice divorced and now married to the love of my life. I failed to keep my marriage covenant with my previous spouses due to very different reasons that out of respect to our beautiful children, I chose not to address publicly. Both my former spouses and I have coparenting relationships and no animosity.

While I am forgiven for my part in the demise of my past relationships and have forgiven my past partners and moved forward, it is still heartbreaking to know that I made vows that were not kept, regardless of the circumstances. So when I made my vow to love Timothy forever, I meant it. No matter what…I am in it for the long haul.

Our marriage and relationship, for the first 6 years was happy and relatively uneventful (in a good way). Yes, we have had our share of disappointments, family issues and issues with my health. But, by and large, those years were beautiful. So many amazing memories. God really knew what he was doing when he gave me my adventure buddy, Timothy Warr. Keeping my vows during this time of our marriage was a piece of cake.

This past year or so, however, has been a test of our vows and commitment to one another. Hit after hit has come. We have faced losing complete touch with Tim’s youngest son, due to some bad life choices on his part. The whole covid crisis. My daughter deciding to move to Texas with her father. Then, as if all that was not enough, Tim got sick. We have had blow after blow thrown at us. And it has been hard.

To be brutally honest…this has been the hardest time I have ever faced in my entire life.

So why am I talking about vows and commitment? Because, in spite of all the awful things we have faced, my vows to God and Timothy are stronger than ever. There are days that I am so tired and irritated with everything…my job, my kids, Timothy, life in general. There are days I just want to scream and cry. And there are days that I actually do scream and cry.

I was talking to my best friend last night and something came to mind and is thus, the reason for this blog entry….

While this time in our lives has been difficult and may grow even more difficult as time passes. I consider myself incredibly blessed that God saw fit to give me a partner like Timothy. I don’t deserve someone who loves me like he does. Someone who prays for me, when he’s the one dying. Someone more concerned about how I am doing with his diagnosis that himself. I am so blessed to have found a man that loves God MORE than me, and in turn, loves me like I have never been loved before.

I don’t have the answers to how long God will see fit to allow me to be Timothy’s partner here on Earth. God may call him home tomorrow or allow him to stay here with me for many more years. But I can tell you, without a moment’s hesitation, that I will keep my vows to him. And until death parts us, I will always be by his side.

Timothy and me on our honeymoon…sweet memories.

Finché la morte non ci separa, amore mio.

Love always, Mandi
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What really matters…

Yesterday day I stood in front of the bathroom mirror after showering. As usual, I critiqued my body. My belly is too soft and rounded. My thighs are to thick and covered with dimples. I have flabby arms. I have a double chin. My nose is pointy. The list could go on for pages and pages. I could spend hours tearing myself down.

But then I stopped.

I took a deep breath and began to ask for forgiveness for being so shallow and awful about this wonderful creation…my body. The body that my Creator made especially for His glory. The body that He created to be His temple, the place for His Holy Spirit to dwell inside of my heart. The body He created to praise and worship Him.

How dare I listen to people who demean me and say awful things about His creation?! How dare I abuse His creation with gluttonous acts and self loathing?! How dare I presume that the body that He created so lovingly is anything to criticize or hate!

Have I taken the greatest care of the body He gifted me? No. But I am trying harder to be healthier. I am trying harder to be less critical and more joyful. I am trusting more in Him.

If anything positive has come from Tim’s illness, it has to be the realization that the bodies created for us here on Earth are fragile and that health and an active lifestyle are gifts from God that should never be taken for granted. Watching my husband’s health decline has humbled me. It has brought me to my knees in sorrow for his pain, but also in thanksgiving for my health.

So from now on, I am choosing to be healthy. I will run and skip and jump and act like a crazy silly person with my students and not worry about how I am perceived by others. I will find joy in these things and be thankful for the ability to do them.

From now on, I will stop dwelling on the perceived negative parts of my body, and instead be thankful for my body.

A rounded belly that has carried two beautiful babies to term.

Thick thighs that are part of two healthy legs that allow me to walk, run, skip, jump and even dance (or my best attempt!)

My flabby arms have carried babies, held others while they have mourned and cried, carried heavy loads and so many other things.

My double chin is proof that I have been blessed with plenty of food and nourishment, when so many go hungry everyday.

My pointy nose is a beautiful reminder of my family. A distinctive feature that has graced the faces of so many of my family members. It is a reminder of my mother, my grandfather, my brother and many more people I love and who love me in return.

I have a healthy heart and lungs. They pump blood and fuel my body with oxygen. I know know, all too well, that these two things are not to EVER be taken for granted. I am blessed with health when so many are not.

From now on, I will find joy in the everyday parts of life. I will try to find joy in the good times and in the bad.

I am fearfully and wonderfully made by the Lord. And I will no longer be held captive by fear or any other thing out there that makes me feel bad about myself. The Lord is really working in my life and I will no longer waste time…for tomorrow is not promised.

I choose HAPPINESS…everyday

I choose THANKFULNESS…everyday

I choose JOY…everyday.

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Party on…

Last night I had a party. It was a small, intimate gathering of two. Me and Jesus. It was not fun. I was tired and defeated. I was feeling ungrateful and sad. Frankly, I was just mad. I told Him that I was tired of being tired. That I was sick of sickness. And that I was upset that I wasn’t getting my happily ever after I felt I deserved. I was dealing with jealousy, hatefulness and un-thankfulness. As you might have guessed, I had myself a good old-fashioned pity party!

I used to feel guilty about dumping all my feelings on Jesus. Like I was letting Him down by not being joyful all the time. But I am realizing more and more that He wants me to tell Him EVERYTHING…the good AND the bad!

I have begun to learn that it’s okay to not be okay all the time. It’s okay to have a pity party from time to time. But it is not okay to stay at the party. I am learning to leave all that junk at the foot of the cross and move on. Is this easy to do? Heck, no! I am weak. It’s easy to get overwhelmed when I try to handle all the crap that is being thrown at me lately. But Jesus NEVER wanted me to handle that stuff on my own. He tells me over and over to back off and let Him do the hard work. All He wants me to do is trust in His perfect ways.

So I am trying hard to leave the party and find joy where I can.

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Hey! Is this thing on?

I have never doubted my faith. And I still don’t. But I as I sit here silently sobbing in my bedroom alone, I do doubt my strength. I am so overwhelmed with so many emotions that it feels like I am in constant danger of crying and not being able to stop. I wonder if crying burns calories? Nah, if it did, I’d be a stick figure

I reached out to a couple of friends tonight. One has walked a similar road to mine and the other has not. But both were just what I needed at that moment. I have never felt more isolated and alone.

I used to think my circle was a lot wider…it’s funny how illness changes things. My circle is very small, but man are they amazing, or what!? They don’t hesitate to tell my they love me. They let me vent. They make me laugh when I want to cry. They are my people. And I thank God daily for them.

I am rambling. I realize that. I guess I am doing anything I can to put all these emotions somewhere besides behind my eyes. Did you realize that unshed tears actually make your face hurt?! Fact I didn’t realize until all this started.

Guess I will try to sleep. I just pray that tomorrow is better. Because today kinda sucked.