When you can’t do normal…dealing with the illness of a spouse

Grabbing out the egg cartons, and milk, I piled them onto the kitchen island with all the other items. Not ten minutes before, I was combing through the pantry looking for a snack. Now, I was viciously scrubbing the walls and drawers of the refrigerator. Why? Because today, I just can’t do normal…

In fact, my mind is racing with so many thoughts that even a “thing to do” list won’t help me.

My desk is currently a sea of paperwork; business calls to be made, bills to pay, and events to schedule.

I’ve attempted to wash the same grill pan for the past three days, and I’ve never gotten to it.

My voicemail is full…and my email is back to over 1,000…..

I haven’t posted a blog post in months…..

And….I haven’t gotten the mail in about three days….

I’m sitting here typing in my pajamas while my girls, instead of doing school work, are downstairs making cookies, while my son is throwing up in his bedroom.

Normal. I have no idea what that means anymore.

There are probably people like me that you encounter every day. We smile and chat about silly things. We drop kids off for dance, and we schedule dentist appointments. We shop for groceries and we make our bed every day.

However, there are things that we are hiding…we are afraid to unveil what really monopolies our time and thoughts….

Some days…I just want to ignore the pain and act like everything is normal. I want to chat about what you had for dinner, and the newest show that you are watching. I want to mentally “retreat” and think about something other than the actual thoughts that pervade my mind.

Thoughts that make me cry behind closed doors. Thoughts that make me want to pull my covers over my head and not do anything all day.

And whatever you do…don’t make me stop and look at you. Because….my life is an open-book and I don’t want anyone to “read” what I’m trying to hide.

Just don’t……

I don’t want you to see the pain. I can’t handle it…and I certainly can’t try and find words to explain it to you.

And please….don’t ask me how I’m doing….because then I will start to unravel….and that gets really ugly and messy.

You see….my husband has a chronic illness…and we are in a tough stage. We’ve called it “bad lungs” for years to explain his crazy coughing fits to neighbors, acquaintances, and friends. We’ve been to multiple specialists who have “studied” his lungs….we’ve done all the treatments….but..ultimately we knew this day would come…

….when it all got serious.

Dan has been diagnosed with Bronchiectasis.

Here is how the American Lung Association defines it:

Bronchiectasis is a chronic condition where the walls of the bronchi are thickened. This is caused by inflammation and infection in the bronchi. People with bronchiectasis will experience periods of good and bad health. The periods when your lung health gets worse are called exacerbations. Some patients with exacerbations notice a gradual decline in their health over a few weeks, while others start to have problems over the span of a few days.

In bronchiectasis, the walls of the bronchi are thickened from long-term inflammation and scarring. As a result of the damage, mucus produced by the cells lining the bronchi does not drain normally. Mucus build-up can cause infection. A cycle of inflammation and infection can develop, leading to loss of lung function over time.

In bronchiectasis, lung function gradually declines over years. Patients with frequent exacerbations or those whose bronchi are infected by certain bacteria, like methicillin-resistant Staphylococcus aureus (MRSA), may lose lung function at a faster rate and have more bothersome respiratory symptoms.

Dan has had several “exacerbations” over the past year. He’s been hospitalized twice over the past two months….and has been treated for pneumonia six times this year.

To stay it’s been “trying” is an understatement.

This was our family earlier this month. It was a Monday….the same day that we were suppose to celebrate the birthday of my now five-year-old. She cried begging her daddy to go to the hospital so that he could be home “on turkey day”. I snapped this picture as they all crowded in to cry on his shoulder about another 5 day stay at the local hospital.

Another pneumonia…..another round of IV antibiotics to fight it. (We also learned that his body has become resistant to oral antibiotics.)

Didn’t we just do this two months ago?

We are suppose to be fighting about stupid stuff like the temperature that the house is kept at or the amount of crazy money that we are spending eating out.

I don’t want to talk about planning for our future or how long his lungs can go without the need for an oxygen tank.

I don’t want him to look at me with that “I know this sucks for you….but you know I really love you, right?!” look.

And somedays….I want to pretend like it’s “not a big deal”…….

So, if my hair looks crazy and my eyes look really puffy……or my smile has been missing for a while or I don’t seem “like myself” it’s because I’m just trying to get by each day without fear of the future. I’m trying to be strong for these five kiddos who rely on me for stability.

Because although I just want to block out the world, and cuddle with my husband all day, there are family memories left to be made.

There are holidays to celebrate, and birthday parties to plan.

I’m clinging to my family time and soaking up those precious moments that require me home. I’m spending time in prayer to protect my heart from all that awaits our family.

However…I’m weak…but I’m ok with that. Scripture tells us that “He has said to me, “My grace is sufficient for you, for power is perfected in weakness.” Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me. 2 Corinthians 12:9” I need the Lord to grant me grace to get through this.

I’m finding it difficult to be left “wading in the water” by the Lord without “land” in sight. The “un-knowing” is the hardest part.

However, I am trying to follow God’s plan in all of this.

God will be re-defining a new “normal” for us over here in our home. In the meantime, please join me in prayer as we pray for direction.

So…. if you see me and I’m smiling, join me.

If you see me, and I’m really just struggling, just pray for me.

I know that I serve a God who truly loves me, who is allowing me to endure this painful time in my life, because I have begged Him to draw me closer. I know that my faith will get me through this.

Maybe there are people like me in your life….silently suffering….that could use your prayers …..be there for them.

My family is not alone….we don’t feel alone.

Our community is a large and loving one…and since news of his hospitalizations our friends and family have been surrounding us with so much support.

Whether they have made us dinner, sent food baskets, called and texted, took the kids for play dates, visited Dan in the hospital, or just let us know that they are “here” for us ….. I truly believe that it has been the “body of Christ” alive and well in our lives.

Thank you for reading this. Thank you for allowing me to open up my heart to you……

Just sharing this has lifted a burden for me……

Praying for you and your families.