Can I just say I hate this over used term.  I hope I never, ever say it to anyone who Is in a similar or worst situation than taking care of a stroke survivor.

The reason I hate it is because it really is such a shallow description of the total disruption and destruction of a life, and lives.

It is not NEW NORMAL, that my extremely intelligent husband with a quick mind and awesome math skills.  Now cannot tie his own shoe.

New Normal-certain places and restaurants we can no longer visit because they are too busy or loud.

New normal no more traveling, no future traveling.  It is limited to seeing grandkids in Mississippi. Although I am going to plan a trip back to Indiana which I hope turns out all right.

New normal, no more birthday cards, Mother’s Day cards, anniversary cards from my husband because he has no concept of these days, nor can he remember them.

New Normal my husband can no longer speak fluently.

I mean I could just keep going, but no more new normal.  It really is a ridiculous statement.  I do not mean to offend anyone who has used this phrase.  I have learned much in my decision to be a mother to a special needs child and now caregiver to the love of my life.

My new normal is filled with joy.  I try to count it all joy and for the most part I am very successful.

I also wonder at times why this must be the new normal.

So many things changed when my husband had his stroke.  So many tears from all of us over the past 5 years.

Mourning the future we planned, finding the joy in the future we have!

When I think about how he made great decisions and kept me from flying off the handle (at least sometimes) Now he does not know how to put his glasses in their holder and turn off the bedside lamp.

Then he could fix anything.  Now broken things confuse him.  I have a handyman on speed dial.

Then we talked far into the night, about our days, our frustrations, and always ended with a laugh.  Now he struggles to speak, and I struggle to understand.  But we still end the night in laughter.

Then we made all our major decisions together now I make all the decisions.

Then we took turns driving, now I do all the driving.  It was a big hurdle because for years after the stroke he wanted to drive, and it was very painful concluding that he could not drive safely.

Some things are the same we laughed then, and we laugh now.

Then sometimes we went in opposite directions, now we always go together.

To be honest we did not plan enough on certain aspects of our future.  Now we have planned everything including our burial.

Then there was a lot of noise, now things are much quieter.

Then there were plans for traveling nothing extravagant, now we stay at home.

Then we loved, now we loved.  We depended on each and we still depend on each other. 

1962 days have passed since my husband had a devastating stroke that changed every aspect of our lives. I have shaved his face 1911 times, I have gotten up 1961 days and thanked God for every one of them. I have hoped 1865 times that I have the strength to do all that needs to be done.

1962, days ago, as I stepped into the emergency room, God assured me that my husband would live. 1962 days ago God showed me how much he loved me by saving the man that was made for me and my anchor.

1958 days ago my son with special needs learned how to uber so he could see his dad when someone could not drive him. He came everyday, he talked to him, he laid hands on him, he prayed for him, he loved and loves him to the core.

Daily I called my brother in law. To review what happened during the day and what decisions I had to make. Every call he encouraged me and told me I was doing the right thing and made the right decisions.

I talked daily to his daughter who could not just listen to the reports and brought the kids so she could just look at him. His daughter cried, the grand kids cried, but they were also reassured that he was still here and moving in the right direction.

I do not know the number of days I wondered if something more had happened because he forgot how to put toothpaste on his toothbrush or no longer remembers how to put ice in his cup.

What I know is he does not forget how to exercise, lift weights. He does not get lost going for a walk in our neighborhood.

He has forgotten our history, our marriage but he loves me today and everyday.

Yes the stroke was devastating and robbed us of much, it gave us a different future one we had not planned.

I am looking forward to the next 1962 days.

It seems that there are so many things to count.  I do not recall counting as much prior to my husband having his stroke.  Now counting is not tedious or boring and sometimes I do not even realize I am doing it and other times it is very important as least in my mind.

I do remember sitting in the corner of the ICU room counting the number of times the machine went up and down that was breathing for my husband.  The Swoosh sound it made when it was doing its magical thing.  Of course, there was the number of beeps for each bag of medicine they emptied and signaled the nurse to come and change it. 

The sound of the bed as the air changed to help keep him from getting bed sores.  The sound of the blood pressure machine as it pumped up and released.  The number of days sleeping in the room with him.  The number of showers not taken (by me).  The number of hours I stood in the corner of the room working where I could watch all the machines.

So many trips down the hall to the Heart Cath waiting room where I found a coffee machine that was on 24/7.

Moving on it was the number of days before he awakened the first time (12), the number of days in ICU (29) the number of days before I heard his voice again…56.  There were so many more he went 40 days without a shower.

In rehab it was the number of steps he could take, how many sounds could he make during speech therapy, how many times he would pull his trachea tube out, how many times he fell out of bed.  The number of times I played the same Bob Dylan song for him, filling out his menu selections daily for 14 days. 

The number of prayers and times thanking god countless.

Right now, I am on day 38 of him forgetting what the eye glass holder next to his bed is for, every night I watch him pick it up, study stick his fingers in the opening.  I know eventually he will ask me what it is for and I try and say the exact same thing because this is what will help him make the connection.  He often asks why it is empty.  I explain.  One day he will remember, and I will count something else.

Some of the other numbers, are 1520 times I have shaved his face, 36, specialist’s appointments.

The most important thing is 1360 days since the stroke waking up next to him.

I have not written a blog entry in 11 months.  I was unsure if I should keep going or not.  It does not have to do with a small following or popularity it had to do with do I have anything more to say.  Here I am so I guess I do.

I realized recently that as we are coming up on 4 years since the day my husband had a stroke, I am just now understanding, making decisions and coming to grip with some of the impacts of the stroke.

I disabled my VBRO (Vacation Bedroom Rentals) account because I know I am not taking those trips.  We are not going to those Georgia Mountains.  We are not going to Yellowstone or any of the other places.  The facts are those type of trips will be too hard on my husband.  The confusion, the discomfort, the anxiety he feels or experiences when out of the normal routine and familiar surroundings are not worth it.  How can they be enjoyed at his expense? It only took me almost 4 years.  I stopped because it was self-inflicted pain.

Thank goodness we can travel to Mississippi to see the grandkids because that is familiar and simple.

I tried joining an online Aphasia support group, but do not have much time to participate. 

I have felt jealously at what I thought were normal lives being lived around me. 

The continued “Hard” conversations are emotionally draining and sometimes I wonder can I keep up with his needs.   The latest of one was one we have had before where he correlates his physical fitness with the ability to speak, remember things and understand the world around him. So, I had to remind him your brain was actually damaged, the part that holds your language and now you have to find your words from another part of your brain.  He cries, how can you love someone like me?  He asks.  How can I not love someone who suffered a terrible blow in the prime of their retirement?  Who has never stopped working on getting better?  I remind him of all the things he can do and where he came from, brain bleeding for 48 hours, complete paralysis on his right side.  Doctors asking me to sign a DNR.

The road is long and always will be for him.  He tells me I don’t want to live if I cannot do things for myself and in the same breath says I will not stop fighting.  All of those words came out clearly.

I have to think if he can do it then so can I.  I can keep putting the socks on, shaving the face.  I can stop getting scared when he suddenly forgets how to comb his hair or how to swallow his medicine. I can figure out different ways to describe things until he understands.  I won’t leave his side until I figure out what he wants to watch on TV.  I can continue to unwrap his protein bars.

I can take joy in his life, because he does take joy and pride in what he does.  Just because there is a component of the emotional rollercoaster that goes along with stroke and brain damage doesn’t mean he dwells on it and neither will I.

I may still cry on certain days and mourn what our life should have been at this stage, and I think that is ok too. 

The joy is provided by his life continuing, just like the Lord promised me when I entered that ER on Oct 27, 2017.

Life is full of sounds and smells. Sounds stick with you often, while smells can bring up memories at least for me.

The first sounds of the stroke was the gobbly-gook sounds coming from my husband over speaker mode of my son’s phone.

Hospitals are full of sounds and smells. The beep beep when the IV it was time to change it, the SHUSH-CUSH sound of the ventilator. The soft shhhh sound of the bed changing to help prevent bed sores. The gurgling sound coming from Scott alerting that suction was needed. The soft quick steps of the nurses and others up and down the hall. Crying, hush talking, creaking of wheels as the carts are moved back and forth.

Trying to sleep at home after 14 days was impossible, it was so dark and quiet usually this is perfect for sleeping but I kept waiting to hear the beeping, gurgling and a million other noises.

Just like life the sounds change sometimes dramatically depending on where you go, live and work.

Fast forward to being home. Wheelchair noise a squeaking rubber sound on the floor, transition to the tennis ball sound of the walker scraping across the floors.

The quiet because my husband could not speak well and the tone of his voice has changed, because of the ventilator and trachea tube.

The thud was probably the worse sound because that was the sound of him hitting the floor. It happened fairly often and then no more. He always smiled when he fell like it was some secret joke.

The sounds of life now are that soft scuffing sound when he walks, the right leg doesn’t move normally there is still some paralysis it is a wonderful sound. There are many more, I listen in the morning and evening for the sound of the toothbrush…I think I have said close to 1,500 times “Honey turn it on” then next sound when he is done is the kind of ricocheting sound as the toothbrush lays in the sink still running…..another 1500 times saying “Honey turn it off”

Listening to breathing at night, placing my hand lightly on his chest to feel it moving up and down in rhythm to his snoring.

Laying in bed in the morning listening for the pantry door to be opened as he retrieves cat food for the morning feeding of our cat. Getting those couple extra minutes before I am up to go shave his face and help him in the shower.

Handing him something for the trash and then hearing the back door slam, sprinting after him to see where he is putting it! Sometimes the back of the car, the golf cart. It is ok I just remind him where the trash can is and how to open it.

Standing next to him in church as he sings the worship songs, listening to his prayers where most I cannot understand but God can!

His laughter, is different not as vibrant or loud, but now it is raspy and shallow. His words are mixed up but he sings to me and reads out loud. It is soothing.

The sound of his work outs on the other side of the wall from my office area. The thunk of the dumbbells, the heavy breathing during his pushups. The squeaking of the weight bench.

These are some of the sounds of our life and I am glad for it.

I have been thinking alot about time, as my 60th birthday is right around the corner. All those sayings about time being fleeting, short, speedy it really is so true. You sprint from teenage to adult, from parents to empty nester, then the last leg retirement, slowing the pace, thinking about career, travel that happened and did not happen.

For me I have done some of it, more travel that did not happen than did. Career maybe not but some interesting jobs with great people and fun. No empty nest here, we will always have one son with us.

As I look at my husband and all the work he has done to regain what was damaged by the stroke, I think how Jake and I were blessed to be there on the front lines watching him, helping him, encouraging him and laughing with him. We have seen the wheelchair get returned, the walker put in storage, the shower chair loaned to someone who needed it. Real conversations beginning instead of drawing, pointing and gesturing.

While I thought about all of this it pointed me to those who have missed out. The family members who were absent for one reason or another.

Scotty has a friend, someone who worked for him many many years ago. You may live life and never know the impact you have on people. John came I think almost everyday to the ICU, I didn’t even want to tell him about Scotty right away because I knew it would be so hard on him. But I did and I was so glad for the company and the way he would talk to Scotty Marine to Marine. He hated seeing his friend in such a fragile condition and it was hard on him but he was not absent when it counted.

I think about the loss of my step daughter with whom I spoke everyday when we were not visiting and the first question always was how is Dad doing? She longed to be closer and often said I would be sick of her hanging around it was a joke because I could have never gotten sick of that for sure.

My brother in law who I talked to every single day and never knew to ask him to come while Scott was in the hospital. He was my rock for sure, I wanted to know I was making the right decisions and he talked thru everything with me supported me and told me I was doing a good job. He probably does not know how much it meant and how important he was to the recovery. He answered the phone and listened to me recant all the doctor reports, cry and make sure things were good.

My sister who texted me all the time not wanting to interrupt in case I was with a doctor or sleeping. We know how much we mean to each other always. We can say anything to each other and she was the one who stayed on the phone with me as I cried and questioned during that long drive from the office to the emergency room.

They were not absent.

The ones that were really absent, that did not participate that did not come to see him, that have not contributed to his recovery. I feel sad for them. We just had a conversation about how they missed out, and not we missed out.

Like I said life is short and there are so many things in life where there are no windows for do overs. Most things have only 1 take and it is hard to appreciate things when you have them because in the midst of it you don’t think they will ever be gone. Life fortunately or unfortunately changes constantly even though some days seem to always be the same.

My hope is those that are absent wake up and join in so they do not have to think about what has been missed.

Our blessings outweigh everything else. There are things that are hard and sad but in our house they are fleeting like time but the laughter, the happiness and the blessings hang around and are easy to remember.

Whew it has been a couple of weeks of every aspect of stroke recovery rearing it’s head. This too shall pass.

If you have kids you probably have had to do some tough love or have hard conversations. That was a walk in the park compared to having a couple of recent conversations with my husband. First one is he is unable to drive safely. This is a fact plain and simple. It has not come up much lately and the last time we discussed he told me I will let you know when I want to be tested. I found a place that does a medical and technical evaluation on driving. That was several months ago, since then the topic has not come up.

A few days ago we got up early and left the house to drop off paperwork at our son’s doctor for renewing my guardianship of him. We always have fun early driving, chatting talking about the day and what needs to be done.

We decided to stop and get our son Burger King french toast sticks one of his favorites. As we were driving into our neighborhood, my husband holding the fast food bag looked over at me and said I guess I have to get use to sitting on this side. There was no denying what he meant as I was driving and he was on the passenger side. Still the tears streamed down both of our faces. He will probably never know how I long to not be the only driver. The days when he ran errands, took our son to the doctor, took care of my best friends son who is autistic. Spent time with our kids out and about.

The other conversation I had this week was about his speech therapy. His intelligence is the same as it always was, his knowledge is still there unfortunately he has to go around the damage caused by the stroke to access it. He has the best therapist on the planet! She understands the expressive aphasia with deep knowledge, she has worked with Scotty so much she knows him very well. When it comes to speech he is very hard on himself. Recently it caused concern that he would not be able to be successful because of his emotions when getting frustrated.

The talk was I had to ask, do you realize that you are not going to communicate the way you did before the stroke. That does not mean I have lost faith or do not believe in miracles because the man is already a miracle and proof of God’s love. He looks at his physical body which he is in excellent shape and so strong. He equates his strength with everything, thinking strong body, he should be able to speak clearly. Then that leads to thinking he is dumb because he cannot talk like he did before the stroke. I had to ask him if he could control himself and let the therapist do her job. The most important thing was he says the words correctly not how many prompts or attempts it took to say it the right way.

I cannot know how it feels, I am a talker, I talk too much. I crave the conversation with him. I cried often when he had the vent in and could not speak at all and I just wanted to hear his voice. I wanted to have a conversation.

We do talk now, I have often told him we are talking, I remind him what it was like when he could not speak, or spoke in nonsense words, or numbers. How there were so many things we never understood what he was saying. Fast forward to today when we can talk, when the misunderstandings happen less and less.

He never stops that is why he is so successful, he just never stops everyday he does something to make himself more whole. He is so strong and courageous and he doesn’t know it.

I recently caught myself thinking in a slight bit of terror that I was the sole caregiver of 2 people with special needs. Which means I put my son and husband on the same level. Leaving me essentially alone as the bread winner, planner, decision maker for all of us. I just did not feel up to the job/duty.

We were having a good Saturday had a leisurely breakfast, a bike rider, spent time at the pool and hot tub and no one else was around. We walked to the water and saw dolphins. It just took something small to be but large to the brain recovering from the stroke. Tears, sadness and the worst the silence that follows. I never pulled any punches with my kids when they were growing up.

Right or wrong I took my husband to the bathroom to look in the mirror and pulled up a picture on my phone of the same man, with a ventilator tube, IV, Catheter, strapped to a machine to put him in an upright position so he could feel weight on his feet. I asked him do you feel sorry for that guy in the hospital gown or the guy in the mirror?

You think you cannot do things or be productive, and I began the list of everything he does daily as well as reminding him how far he has come since the stroke. Reminding him his brain bled for 48 hours, that he was completely paralazyed on the right side and they said he wouldn’t live. I reminded him he was still a husband and father and grandfather.

I was preaching to myself! This man was not special needs, he is the man God bound me to in sickness, health, richer or poorer until death do us part. And death will be breif but our time in heaven will be forever.

So I am thankful for my faith, my God, my husband, children, grandchildren and friends.

This is life and we are living it everyday.

Grief it has several meanings, deep sorrow (usually when someone dies), trouble or annoyance. When you change roles in your life and become a caregiver to someone you love it is hard. I could never over come if it was not for the relationship, strength, and faith I have in God.

I like the word over come instead of survivor, sometimes survivor is just making it, I want to do more than that for sure. My husband is a living example to me of an overcomer. He has over come so much of the damage done by the stroke.

If I sit back and think about individual days, it is not much but when I think I have shaved his face close to 1,000 times. Pulled 2 socks up almost a 1,000 times, made sure he is taking the morning vs. the evening medicine almost 2,000 times, 1000 injections of insulin. I have lost count of the times rolling over in bed and making sure he is still breathing. Or the million (at least) times I have asked if he was ok.

The hours, days, weeks sleeping in a chair in a hospital and trying to take a sponge bath at the sink and hoping no one walks in because the hospital room bathroom doors don’t lock.

The deoderant, shoe tying, cologne spraying. Holding the bowl so he can get the last of the cereal, fruit or ice cream out. Cutting meat, helping to feed when the right hand is not working.

Telling him he cannot drive yet, and wiping the tears away and feeling like I just kicked him when he was down.

You choose to be the caregiver out of love, responsibility and the knowledge that you know you can do it best. I am married so I also have vows. Most people don’t think about the vows because you are usually young and there is so much time. There is not always alot of time. I am thankful for the maturity, and stamina I have to be a caregiver. I am thankful for my friends and family who love us and are willing to jump in and help when needed. I am thankful for my son who lives with us and does not hesitate to help.

I like to think back to those days when the stroke first happened and the prognosis was not good. Why would I do this? Because remembering, reminds me of how blessed we are and how miraculous life can be.

The grief comes and goes, and cannot be dwelled upon. Grief can be good and cleansing to grieve and live on. To grieve and give care. To grieve and make decisions. To grieve and overcome.