8 years....

8 years ago at precisely this time it felt like everything I knew was falling apart. 

All day it has been on my mind. Like muscle memory. Didn't know what but knew something. I stayed busy today. As I have for the past 8 years, maybe longer. It's hard sometimes to sit with all our emotions. It's been 8 years since my dad had his stroke. 8 years since doctors said he would never walk again. 8 years since doctors said he would never talk again. 8 years since doctors said the best case scenario was that he learn to transfer from a bed to a wheel chair and back. 

I reflect back on that night. Not knowing if dad would pull through. Not knowing if they could get the swelling on his brain to go down. Now knowing if he would wake up. The unknown has always been terrifying to me. 

8 years since doctors said they have no explanation for his progress aside from saying its a miracle. Funny how sometimes what one person views as a miracle can be a complete detriment to another. I imagine my dad got sick of hearing how he was such a miracle because the miracle to us stripped him of his livelihood. This miracle took away everything he knew and quite literally has stopped him in his tracks. And yet I see how it has impacted so many others, one being my son. To see his love for everything neuroscience and neurology emerging is incredible. He asked a lot of questions of doctors and nurses the days following my dad's stroke. He has always been inquisitive.

Sometimes people ask if there is anything you could change would you? I always had that cliché answer that I wouldn't because I wouldn't be where I was if it weren't for everything I had been through. But the truth of the matter is if I could turn back time I'd want the stroke to not be part of my dad's story, part of my families story. No part of it seems fair. My feeble mind could never begin to comprehend God's plan or purpose in this stroke. Some days I feel like I've been cheated out of time with my dad. 

Don't miss interpret what I'm saying. I do see many good things that have come from this. My dad is alive today. Ambiguous loss is real and difficult to navigate, but he is still physically present. Seeing my dad relearn everything in therapy the weeks following his stroke made me realize all the little things we take for granted....everything from brushing our teeth to getting dressed to using the bathroom. The ability to walk, to express what is on our mind, to go to the store, to cut the yard, to open an envelope....to identify letters and the words they form. I watched my dad fight to gain back so many skills and abilities that I probably still take for granted. 

Every 30 seconds someone in the United States has a stroke. Every 3 minutes and 14 seconds someone dies of a stroke. I thank God my dad was not part of the later statistic. It isn't lost on me where he was or how far he has come or the blessings and favor we have felt thus far. 

8 years....sometimes it feels like its been a lifetime...

not again...

Today started like any other day.  

It ended a bit different....but not really

Its a familiar different...

but one that you never really want much knowledge of.

12:25 this afternoon I picked my sister up to go car shopping.  She is in the market for her first new car, and I have been known to get some good car deals...so good that the guy who sold me my car 3 years ago, remembered me! Not sure that was a good thing for my sister....

12:27 this afternoon her phone rang - her husband at the other end - we had just left him at the house... 'dads having a seizure'......we turned the car around and went back home.  I thought to myself, I guess its good that I was late to pick her up, so that we were not far away.  He tried the magnet for my dads VNS and it didn't stop it.....his entire body continued to shake....he was looking up and to the right...called rescue...waited....seemed like he quit shaking a little so we started singing, 'you are my sunshine'....he started singing in between seizures...getting him out the door proved challenging and the paramedics probably didn't like me telling them how to do their job - I'm just a worried daughter and hopefully they didn't take it personally. Thank God for emergency rescue personnel, EMT's and paramedics. 

Then came the hurdle of getting him stable enough to be transported to Mayo...that isn't the closest hospital to our house but it is the one who has seen him and treated him since November of 2015 when he had his stroke. Felt like time stood still while we waited to hear where they would take him.  Most of the time I find myself wishing time would slow down...but in that moment I just wanted them to get on their way and get him to the hospital. He was cleared for transport to Mayo.  Thank God for enough stabilizing that he could be transported to Mayo Hospital.

We left and as we approached the end of the street we saw the ambulance come up behind us.  I have always been one to yield to emergency services, thinking I would want somebody to do that if my loved one was being transported....and then before our very eyes as we sat at the intersection we watched the ambulance make it through safely while everybody stopped.  It sucks knowing that somebody you love is in that ambulance.  I cringe every time I hear a siren.  If an ambulance has been anywhere near our street I have to check the number.  72 is the one that always comes for dad.  Thank God for drivers who pull over when an ambulance is approaching.

We made it to the hospital before the ambulance did.  Noticed Mayo Emergency Room is undergoing some construction.  That is new since dads last seizure episode. I wonder what they are doing, are they expanding?  If only the walls of this place could talk...I think of the stories held within these rooms....how we have known quite a few of the rooms in the ER department and most of the rooms on the 5th floor. Seemed to take a while for anybody to go back and see him...minutes felt like hours as we eagerly waited to see him....because that is how we humans are wired - we need to see ....Thank God for the Mayo ER staff who took care of my dad.

At the end of the day...mom and dad are spending the night at a non profit academic medical center focused on integrated clinical practice, education and research.....in other words, Mayo Clinic.  We all stand a bit shaken but no worse for our wear. We are still standing.  In some ways I suppose trials make us stronger, odd thing is how weak they leave us feeling in the moment. But then I wonder is it weakness we feel or a sense of powerlessness?  To see somebody you love in a state that you can do nothing about?  Yeah, maybe thats it - maybe its not weakness we feel but a humble reminder of the fact that we are not in control, some things we must endure are beyond our ability to fix or change...  We have hope for this trial, that all will end well... because we have endured similar tests in the past.  So I guess that is something to be grateful for. I find myself feeling a great deal of anger and asking why, though I know my feeble mind is not capable of comprehending the 'whys' to what we have to endure this side of eternity.  Funny how even though I know my mind can't comprehend the why, I still want to know why...as if knowing why would make anything better?  I know God is a big God and He can handle my anger, I just have a hard time comprehending how this can be used for good. I'm grateful my dad is still here and that God isn't finished with him, I just don't understand why good people must endure such difficult paths in life. It's hard to trust God through all this, but I know we must. I know His plan is a good plan (even when it doesn't feel good) , that He can see the bigger picture (when all we can see is whats happening right now), that this pain has purpose in each of our lives... but when these difficult days strike it sure is hard to keep all that in mind.... To my family - a song of encouragement - Trust In You....

"Have I not commanded you?  Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go."  Joshua 1:9

̶3̶3̶ years...

....or is it 34 years? 

(inside joke!)

On this day 33 years ago my mom and dad got married. 

December 8, 1984

They have had their share of ups and downs. 

Endured hardships.

and times of plenty.

Silent treatments.

Date nights.

Four children.

Seven dogs.

A hamster.

A miraculous goldfish.

Bearded Dragon.

Two additions to the house.

Dad takes hammer to kitchen cabinets.

Completely remodeled kitchen is the result.

Playing in the backyard.

Working hard.

Putting us kids first.

30 some odd cars that dad has had

Family vacations.

Ocean City.

Maryland.

New York.

Wisconsin.

South Carolina.

Look out mountain.

Rolling down hills in Wisconsin.

The carnival where I won a fish.

(And it died before we made it home)

Family dinner.

Pops bypass surgery.

loss of loved ones

cancer

depression

anxiety

afib

stroke

seizures

graduations

new life 

grandchildren

Neighbors

mechanic

yard man

bank teller

bus driver

teacher

father

mother

brother

sister

son

daughter

long days

even longer nights

playing dress up and coloring

watching tball games 

cheering at softball games

dr. hahn

pain 

heartache

joy

peace

healing

home videos

times gone by

times to come

loving in the moment.

no promise of tomorrow

a love that has stood the test of time

one that has been magnified these past 2 years

I've heard my parents argue and I've seen them come back together and move forward. I've seen them get creative to make ends meet. I've felt how much they care for us kids. I know they love each other. I just never knew exactly how much until I watched them endure something tragic. I've watched my mom and dad stand beside each other through a number of trials.  

 I took dad out this afternoon to pick out a card and a single rose.  See when he was cutting yards for his elderly friends he would tell them about his anniversary and they would tell him to go cut a rose out of their garden.  Dad seemed to be about the simple, thoughtful things....at least that is what I remember. He had to settle with going and buying a single rose. I think my mom was surprised.

I'm glad that my mom and dad got married and that they have stuck together no matter what hurdles have come their way.  an everlasting love.  

(on a side note---look at the symmetry in dads smile! this picture was taken today, the one below was from December 20, 2015 almost two years ago...In the picture above, from today, he is walking....the one below he was still in a wheelchair...our God is an awesome God!)

Voice

Voice is defined as the sound produced in a person's larynx and uttered through the mouth as speech or sound. The definition of voice has such a technical feel to it but when you think about what somebodies voice can mean to you....well, it feels that these words are not adequate to express the way some sounds produced in a person's larynx and uttered through their mouth can reach some inner part of your soul.  We can all think of a time when somebody said something and it really meant a lot and stuck with us.  Just this weekend I was recalling happy family memories, times over summer when we would go to the beach after dinner and play until the sun went down and then go to Dairy Queen for an ice cream on the way home. Or when we would go to St. Augustine and walk down St. George Street and get a sweet treat. I was thinking about my dad singing Philadelphia Freedom to me on the way to school just about every morning.  I was thinking about times he would tell me that he was so proud of me and I rolled my eyes and said 'yeah, yeah, yeah'....Some times I think I would give up anything to just go back in time. I know that the stroke my dad is living through, and how it has changed all of us has been for the better in most regards, even if it took a lot of pain and tears to get to where we are today, even if it dumped us upside down and tossed us about and made us more clearly define and appreciate one another...and see who would weather the storms with us - people I thought would always be there, well I guess when our ship hit turbulent seas they took the life boat and left us to weather the storm on our own.... there are days....when I just don't understand why.....there are days that I miss my dad.  I am grateful he is still here, don't get me wrong....anyways....I was going through and cleaning out my computer, getting rid of old songs I don't listen to anymore and burning pictures to DVD when I came across a few old sound clips from my dad. The odd thing about the timing is that my husband just cracked his phone screen and my sister has a phone she isn't using that he could use, she was upset by a glitch in the Verizon network that cost her one of the last voicemail from my dad before his stroke....so while this might not have been personalized for you Becca, in the name of lost voicemail I hope this sound clip brings a smile to your heart through the tears that are bound to leave your eyes while listening. There are a few more sound clips, but since YouTube won't let me just upload music, I need to find more pictures.

p.s It 's hard to believe that doctors said my dad would never speak again.  While these are old sound clips, he is certainly speaking today....and still singing!

10...

June 16, 2007 at 7:01 p.m Seth Alan entered the world. 

I had no clue how my life would change, how he would make me a better person.  Growing up there were some things I said I would never do....I said I would never get married.  I said I would never leave home.  I said I would never have children.  Somewhere along the journey I realized I better be careful what I say I will never do because everything I said I would never do I have done....

Today my boy turned 10.  I am not sure how time has passed so quickly.  I remember him always holding my ear to go to sleep when he was little.  I remember having to walk down the aisle of microwaves every time we went into a store.  He knew them all by name.  I remember him watching youtube videos about what to put in a microwave.  I remember him carrying a play microwave around everywhere.  I remember him saying my contractions for Ivan looked like sandcastles on the monitor. I remember him being fascinated with Curious George and able to recite every episode from memory. I remember when he started school. I remember when he lost his first tooth. I remember when he faced his fears, when we overcame his fears. He absorbs so much and is able to recall facts that I have long since forgotten. He is very literal. He is a rule follower. He is confident and proud.  He excels in school.  

He is a pretty awesome kid.

You only turn 10 once and I wanted this day to be special for him. I was thinking about trying to do 10 special things and if somehow they could incorporate the number 10 then that was an added bonus. This is what we came up with --

- He woke up to a decorated living room and singing Happy Birthday to him.

- I made him a shirt that had 10 on the front and #DoubleDigits on the back

- We went to his favorite park 

-We went to the Donut Shoppe and put candles on a donut!

- We went to the candy shop and picked out 10+ pieces of candy.

- We gave him a small gift at 10 a.m

- He wanted a 10 piece chicken nugget meal from Mc Donalds for lunch. 

- We went bowling after lunch - 10 pins...he got a few spares!

- We went to Adventure Landing when Dennis got off and got 100+ tokens (10x10)

- We had pizza and a family movie night.

- I made him a 10 layer cheesecake for dessert.

-Before bed we gave him a list of 10 things we like about him.  Ivan, Dennis and I all worked on it together and Seth read it aloud before he went to bed. 

I want him to know that we love him.  I want him to know that he is special.  I want him to know that he is one of a kind.  I want him to know that there is nobody else like him in the world. 

A few pictures from our day---

Seth turns 10 slideshow....

My Sweet Friend....

 I have been sitting here starring at a blank template, unsure of what to say but yet filled with so many thoughts. I watch the text cursor blink, waiting for some input to make it solid, to fill the space, to add meaning to the emptiness that it lives within.  Then my mind drifts into thoughts about how our life could be viewed the same way.  This world is so empty compared to what is waiting for us, and we search for some meaning, a purpose - something that makes us feel solid and complete. Some people find what makes them solid, and in so doing they start filling the pages of their lives with words, pictures, experiences, stories, memories....things that will keep them feeling full and satisfied, despite living in an empty world where pain and heartache threaten to drain our spirit. In living their life story they are not only filling the pages of their life story but also adding a few chapters to somebody else's story. I have found this happens, sometimes when we are completely unaware of it. I don't think we will always know the chapters we write in somebody else's life.  Sometimes we write them when we are declining in health or facing some hardship that seems insurmountable. 

I have been helping out at a memory care facility and yesterday I received word that one of the ladies that I would walk with and work with one-on-one, had departed this earth. When she would come in on days that I was there, we would walk around the facility and 'shop'...she would comment on the nice door decorations of the residents who live there...they have different little rooms in this place and we would walk around and shop in these different areas. We weren't really shopping but that is what seemed to bring some joy to Mrs. Dorothy, so that is what we did.  We would collect odd pillows or pictures or magazines and purchase them 'on credit' and take them back to the house. Mind you, we never left the facility.  Part of working with people who have some kind of memory impairment is joining them where they are, while also having no knowledge of where that may be. I think a big part of it is making a connection. Some days we would walk outside, only to Mrs. Dorothy we were walking on the farm and helping with the animals.  Or working in the fields and harvesting crops.  Some days we were at the hospital and she was taking care of people and talking about how much she enjoyed helping others. As she was losing her memories I felt like I was saving them for her. She enjoyed visits from Sadie!

One day we were walking outside and she was talking about potato farming and she stopped and looked at me and told me that I was a good person.  I told her thank you and asked her how she knew that and she told me because I care and I am a good friend and I have a good heart.  I asked her how she could know those things about me and she simply responded, 'Because he told me so.'  I asked who 'he' was and she was back to talking about all the things she could make using potatoes.  For those few moments though, she was there, and what she was telling me was what I needed to hear.  I felt like God himself was talking to me through these interactions that I would have with amazing people at this memory care facility.  When we walked she would always feel the need to hold on to me and would repeat over and over, please don't leave me. I am not one that really likes to be touched, but for Mrs. Dorothy, I had to get over what I didn't like because it was what she needed.

Mrs. Dorothy certainly blessed my life, even as hers was slipping away. She has written a few chapters in my life's story, while sharing her life's story with me.  She pioneered the way for me into memory care and what that really looks like. I know the only thing certain in life is death, but I also don't think it is something we were ever meant to have to deal with. I am grateful for the time that I had with her, even though I feel like it was way too short. I will always remember her - somehow in the midst of my struggles she reminded me that I am a good person, that I have a good heart, and that the way I care for others is a good thing.  When I think about her I can't help but think about those positive affirmations that she left me with.  I hear her voice clear as day saying it to me now. I am grateful for the pictures I have to reflect back on but the true beauty lies in the way she touched my soul. I know she is at peace. I should find peace in that knowledge but being somebody who feels things so deeply, this is very sad for me.

The write up in the paper 

She wrote her own obituary - it was published on my birthday. 

This time last week....

I was playing a game on the computer.  My cell phone started ringing.  I thought it was my brother to discuss plans to help my grandfather over the coming days. I didn't answer the phone, I was in a competitive game. The phone rang again, they never left a message, must not be important...when the phone rang for the third time I answered...."Rachel, Dad is having seizures again, paramedics are trying to get him loaded up now."  I opened my front door - this is what I saw.  Every time I hear sirens come down our street, I panic, I rush to the front of the house and in my head I repeat, 'just keep going, just keep going.' A few times, they have stopped at my parents house and when they do, followed by the 'just keep going' is 'oh no they stopped.' Sometimes I don't even make it to the door when I see the reflection of the lights through my front door.  This time they did not have sirens on, but the panic was still the same.  This will never become any easier to see. 

Like every other time, I sprinted down to the house. I must say if I could channel that into some race, I am sure I would win. This time when I left the house I didn't have shoes on, my feet ended up bruised and scraped but the pain didn't phase me. Got down to the house to see the paramedics struggling to get dad on the stretcher.  He was still having seizures. That also will never become any easier to see 

 He was telling us that he wanted to die in between massively seizing. He was taken to Mayo, and I think about an hour after the seizures originally started, and with medication from the ER, he was not having seizures but was also not very alert. It would come and go. Seizures leave him completely drained and weak.  There are still certain little neuro tests they do to just keep tabs on him.  Concerned over his lack of response, the following morning he was sent for a CT Scan.  No new brain damage...always a relief.  Who would have thought that, 'no new brain damage,' would be a "relief." He had some seizures throughout the night while he was being monitored at Mayo. Mom didn't leave his side. 

As we got more results and news from the doctors about how to once again tweak his medications, mom decided to go to work the following day.  I told her I would go up and sit with him. It felt like old times.  An odd, but familiar; uncomfortable but comfortable setting.  I ordered him his typical Mayo Breakfast and a few smoothies, is it sad that I pretty much know the menu? Doctors made their rounds and with the new medication on board, Dad was improving.  I left him rest in the morning but when I saw the doctors down the hall I told him he had to be alert and answer their questions if he wanted to get home. When they came in he was awake and answered their questions and they said they felt he could go home, just have somebody with him for support and what not while he builds strength back up.  This is the picture right after the doctors had left the room, he just kept saying, "I'm going home" and had a big smile on his face. He asked me to text this picture to my mom. He was impressed with how symmetrical his smile was!

So at precisely this time last week we were just hoping the seizures would stop.  We were taking turns going back to see him in the ER as you are only allowed 2 visitors at a time.  We may have bent that rule a few times. We were keeping each other company in the waiting room while others of us went back to check on him. Just being there for each other during a time when we were uncertain about how things would turn out. It seems dad goes through the ringer with these seizures, just about every other month. I don't know how he finds the strength to keep going.  Oh wait, I know...mom is standing beside him every step of the way and refusing to let him give up!  I love their love for one another. 

I hate everything he has been through. It doesn't seem fair. It scares me and makes me angry at times but yet it also serves as a sobering reminder of the fact that this fallen world is not our home. There are days that his physical body has left him feeling so discouraged and let down.  I remind him that he is still the same on the inside. 

Don't hesitate to reach out to somebody. 

You just might be the encouragement they need to keep going.

not again....

"Not again..." that is all I could think as I felt my heart sink to the pit of my stomach when my mom called me last night to tell me that my dad had another stroke.  All I had to compare it to was what his first stroke was like - a terrifying and miraculous journey that strengthened our family as it tore apart everything we knew and loved about a man who we thought was indestructible....a man who always took on the world, and now this world threatened to take him.  

Everything changed that day.  Everything continues to change. It truly is the only constant. Some days I find myself wishing there was some way to go back to the 3 months prior to the stroke, when he was happy, when he would call me to tell me he was proud of me, when he would open the door and say welcome to the jungle to my boys.  I am grateful that he is still here but there are days that I miss him terribly.  

I never thought I would be thanking God for a small stroke.  Today I was doing just that. I didn't know what to expect when I went to see him today.  I was happy to see him stand and move his legs and talk. They have been running tests all day to figure out the fine details and we really don't know much more at this point, other than it was another stroke. He had all the nurses laughing.  The therapists who were working on the floor today, many of them came by and what they said all sounded the same, "when we saw your name we had to stop by and see you."  They complimented him on his progress and how well his speech has come along. It's not really a place you want familiarity but yet that familiarity is strangely comforting. Here we are trying to figure out this stroke and get our feet under us and here they are in awe of how far he has come along, even including the weakness this stroke has brought on. Talk about perspective?!?! 

Two weeks ago he was in the hospital with seizures. Anytime I see an ambulance go by I panic, run to the front window and when I see them slow down at my parents house I say, 'no, no, no, just keep going'....Even though the ambulance has been to my parents house a number of times, it never gets easier to see....now my panic has spread and when we are out and about if I see an ambulance leaving our street I call mom to make sure its not for dad.  The odd thing is I did just that Sunday morning and Sunday evening they had to take him to the ER.  Thankful that he alerted them of the need to be checked out.  Thankful it wasn't four hours later when he would have been in bed asleep. Thankful for medications that can break the clot and give him a much faster turn around. 

Tomorrow is Valentines Day.  It is not a day that I like.  Love is about so much more than flowers and stuffed animals and chocolates.  I guess that stuff is nice but to me it looks like superficial love. A way for people to show the world how much they love you when love is such an intimate private thing, something that should be conveyed more than once a year in kind deeds, soft words, showing up, helping with laundry, spending time with one another. True love, that is what I see when I watch my mom sit beside my dad and hold his hand as he wakes up the day after his second stroke. True love is what I hear when my mom says, "His right side was not moving at all last night and my heart was breaking all over again, I felt like we were starting over."  True love is what  I see when I watch my mom push on every day when life is so different now.  True love is what I see when I watch her look at my dad and still see his beautiful soul and amazing spirit, unchanged by what the world has done to his physical body.  True love is what I see when I watch my dad look at my mom, and even with the inability to find the words.... he speaks volumes about his love for her when you see the peace in his eyes as he looks to her for comfort. In sickness and in health....when its not always fun or comfortable or easy....they live a great example of what it looks like to love one another against and in spite of all odds. I have so much respect for people who lead by example.  Words can be empty shells of promises and good ideas, but seeing it in real life, before my very eyes -- brings with it lessons that will be ingrained in me forever. Love unconditionally. Love what you can't see. Respect one another. Never give up. No matter what, you stand beside the one you love. 

I will be incredibly honest here and say that no part of this feels very fair.  I know we are walking this path for a reason but it sure is exhausting at times.  Today I was able to be there for a stranger in a unique way, who knows if our paths would have crossed if it weren't for my dad having this stroke.  I guess I was where God needed me to be, even if it was not where I wanted to be. That is always a difficult pill to swallow.  

Something good will come from this.  

In the mean time -- for my family -- listen to this song....