The Difficult - the hole in my heart

I think of the analogy of the tree firmly planted will take root and bear abundant fruit. Mike was one of those trees in my orchard (and boy did he bear abundant fruit). When he left my life, roots and all, it left a big gaping hole in my heart and in my life. The tears I shed created mud slides that slowly began to fill the hole. God draws near to the broken hearted, indeed. (Psalm 34:18) I realized quickly I would need to fill in as much of that hole as possible. The hole will never be completely filled. I am hopeful that by filling as much as I can then at least when I wander over it I won’t fall in so deeply that I won't be able to climb back out.

There are things that are more difficult than others. There are triggers that I am learning to stay away from. There are triggers I’m learning that I just need to hold on to.

Things that have been difficult.

Grocery shopping is a trigger. 

Going to the grocery store and not buying all the things Mike loved. 

CFers have an enormous appetite. To help them us Momsters will tantalize with all their favorite foods when they don’t feel well. We have lists of ingredients that go into their favorite meals - special snacks and the like. Food is a big part of any life but to a CFer it is a HUGE deal. Going to the store is still hard. I am thankful Paul does most of the shopping. I have the most fantastic hubby on the planet.

Cooking – for most of the reasons stated above - I am ashamed to say - I have cooked very little since Mike passed away. He was good in the kitchen and would help me a great deal. It makes me miss him. I am thankful for all the food people brought while Mike was on hospice. It was a blessing to our family. I’m working on this . . .

Scrapbooking and pictures. They were my distraction as CF got really ugly these last 10 years. Now I want little to nothing to do with any of it. Does anyone have a match . . .

His smell. It only took a couple of weeks and the smell of Mike was gone. Katie noticed it first. It made us both very sad. We searched, but it was gone.

Basically anything that I felt deprived of while Mike was alive and CF was ravishing our lives, I have a hard time with now. It brings up this emotion that is hard to explain. Some guilt, some sorrow . . .I’m hoping one day I can articulate it. So just taking the time to put a dress on for Easter brought up that feeling. I haven’t gotten dressed up for church, let alone Easter, for years. Like last year for instance, Mike was in the hospital. I threw something on so I could leave right away and go see him. So having time to do that now, I guess, is a reminder I have time but I don’t have Mike. Maybe it doesn't make any sense to others.

Another example is David’s kitty. I told him he could have a kitty when they found a cure for CF. We tried to give him a cat but Mike felt it was making his symptoms worse. Now we have a kitty but we don’t have Mike.

I have a very big house. I got really far behind with everything as I made all the trips back and forth to Madison and tended to all the demands of CF. Now I’m finally getting time to clean up and sort through things. I have to fight the sick feeling in my stomach – because I have time to do this – means I don’t have Mike.

Stress. This could be an entire blog post all on its own. I can't handle a lot of stress. Physical, emotional, or mental. I have to be very careful. Even getting too excited about something can set me back. I don't want to be numb but I do want to be careful. Panic attacks can be a side effect of trauma. I can feel them. I know the tempter would love to take away my peace and send me into despair. But I will fight him. I will fight that urge to numb. Numbing is yet a whole other blog post! I can't remove stress from my life but I can learn to control my reactions to it. I'm sure I'll be talking more about that in the future.

Things I can’t let go of yet. Things I need to continue to stage to be OK.

A coat in the closet. I keep one of his coats in the front closet. For some reason it brings me peace when I open the closet door to grab my coat and I see his. I made sure his father has one for his closet too. Katie has one also.

His enzymes. As the hospice nurse was packing up she offered to take Mike’s meds. I think she is required to take all of the drugs hospice supplies. I just looked at her like . . .What? You’re kidding right? I was tired and that would be a big job but with little kids in the house I thought well, this will help me out. Within a couple of minutes we had produced a garbage bag full of drugs. She looked stunned and said, “Oh, now I see . . .” Someone had brought one of Mike’s big bottles of enzymes and I grabbed it back and said, "NO!" Mikey couldn't eat without them. Enzymes have been in my home every day for 31 years. I could not let go of every bottle. Nope, not yet.

His vest and machines. I am hoping someone will help me out with this. I can’t throw away two machines that helped keep my son alive for years and cost thousands of dollars. I CAN NOT do it. I've asked the hospital if someone needs them and no luck. I was hoping another CFer would want them so they could keep one at a college dorm or summer home and not have to lug one back and forth but no luck. I’m hoping someone will come and take them and I never know what happens to them. . . . . . . . Please?

Things I have to fight

I have to fight the urge to focus on the negative. Between stimulus and response we have a choice. By the grace of God and through the prayer and support of many I am thankful that most of the time the positive wins. And (said gently and with sensitivity to those also on this path) I can choose not to let it consume all of my thoughts. One thing I realized right away is that when I am filled with gratitude there isn't as much room for pain. When I focus on grace I lose sight of grief.

My time of grace did not end, Mike’s did. God still has plans he wants me to fulfill before my time of grace is over. I need to figure out what those are and press on toward the goal. Yes, I can think about the fact that Mike is not here, that I will never get to see or talk to him again as long as I live. Or I can think about how blessed I was to have been given 31 years with him. Blessed to have had all the blessings he and CF brought into my life. There is a quote I love, that says:

When we appreciate what we have, we honor what others have lost. 

I still have my health and God blessed me with other children and even a grandchild. How can I return those gifts unopened and unappreciated. I press on. I miss my Mike and all that he brought into my life. One thing I know for sure:

You don't have to look for trouble, pain, sorrow or difficulty. 

They are right there when you are NOT practicing gratitude. 

They are there when you are NOT looking at the blessings in your life. 

They are right there when you are NOT looking for beauty.

They  are  the absence of grace.

When I am living my life with grateful 

intention I am not in pain. Period.

I will grow accustomed to this new normal. There is still Joy and Love and Peace in this new normal and I am thankful. My heart is so full. It has a hole where the piece that Mike took with him used to be. That is where all the good stuff I was given as a result of Mike in my life seeps out and is given to others and makes me a better person. It’s called Mike’s legacy. That is the only living thing that Mike leaves behind. I know others have it too because they are telling me about it.

James 1:2-3 Consider it pure joy my brothers whenever you face trials of many kinds 

because you know that the testing of your faith develops perseverance. 

Blessings to you! Love, love, love. 

P.S. For all you grieving mothers and parents out there also on this journey, may God give you peace. I hope you have the support of friends and others. Reach out to them and let them lift you up.

Diane, let's get together soon :)
P.S.S. Did I ask if someone could come and make his machines disappear so I don't know what happened to them? I will just believe that they will be helping someone else sustain life , , , PLEASE?