Posts Tagged ‘ALS’

first dating photo 1987

My mother tells me I was a shy toddler. In fact, they couldn’t force me to go to preschool because I was so terrified. I have vague memories of a giant room with a tiny group of kids in the middle and I was supposed to walk all alone to join them. I wasn’t having it! Then I was held back from Kindergarten because I was still not ready to go.  The next year I had no choice and since my younger brother was also going, it seemed better.  All that ended up making me the oldest one in my grade the rest of the way through, which gave me some sense of confidence.

Somewhere along the line, the timidity disappeared…Because the rest of my school experience was all about talking with my friends, social events, and did I mention talking. In fact, I’m sure my middle school teachers and the librarian, in particular, would have never believed that I had ever been shy. I was banned from the library and sent into the hall more times than I care to admit. At one point, a close girlfriend of mine was told by her parents she couldn’t hang out with me because I was getting into too much trouble for…you guessed it – talking!

When faced with the  decision of what to do after graduation,  I remember my dad telling me that since I had so much fun in high school, I should go to college and continue all those types of activities. That sold me and off I went. He was right. My high school and college memories are so amazing; Thinking back to that time in my life brings a smile to my face.

And of course at college, I met the man of my dreams. At the end of my sophomore year, I made a prophetic statement that I probably had already met the man I would marry, but that neither of us knew it yet. That fall, before classes even began, Patrick asked me on our first date and then continued to ask me out every day after, always calling me (on the floor pay phone) immediately after he had just dropped me off! Three weeks into our dating, he told me he loved me (which I proudly did not say back) and he started telling people he was going to marry me. I took a little longer to decide. After all, I had my list (yes, a real list) of what were “absolutes” and what were “preferences.” I distinctly remember sitting in Pizza Hut and asking him the questions I thought were the toughest. If he could put up with my over-analyzing personality and not make me feel like an idiot, well then he was the guy for me. That was just the beginning of our friendship and his understanding of me. 7 months later we were engaged and the following year, 5 weeks after I graduated, we were married.  The photo above was taken early in our dating.  Long before the days of digital and iPhone cameras, you can imagine how precious this picture is.

Over the 25 years of knowing Patrick, he continued to be the best friend I could ever imagine. As with all marriages, our understanding of each other grew over time; He could predict what I was thinking. I knew how he would react. We could finish each other’s sentences. Many of our thoughts and opinions meshed and were as one. In fact, on all the major topics, we did agree. The more minor areas weren’t important and we just let each other be how we were and it was ok. I loved the fact that he completely understood me. He allowed me to thoroughly explain how I felt about something, truly listening and then would help me clarify what, if anything needed to be done.

Now that he’s gone, I am still always thinking of what he would say or feel or how he would react. I’m working hard to keep certain standards the way he did. Like the grass – he was meticulous about it, probably a little over the top. When both kids were home, the 3 of us could keep up with it pretty well. Now that they’re gone, it’s a lot of work.  It’s a big lawn and to use all the machinery and do it right takes almost 3 hours.  In fact, I just recently had a meltdown over the lawn because I just can’t keep it up as perfectly as he did.  And I desperately want to.

Some of the things that were important to Patrick, I have not followed…like the golf channel. It’s never on now. As for Notre Dame and the Tigers, I might look up the score the next day, but it’s not nearly with the same level of interest as when he was here. I used to try to find out some tidbit of news about one of his teams and tell him before he heard it himself. Boy, did he love it when I did that! I would be so proud of myself and he was excited that I was showing enthusiasm for something he loved.

That’s what I miss the most…his friendship and our companionship. The bond, the love, the sharing of life together. With the major things and the simple things. He is gone and a million times a week I want to share something with him. But I can’t.

It’s lonely. It’s quiet. Too quiet. It’s been 21 months. I am used to the silence, but I am not used to the loneliness. I had such a full life, such a vibrant marriage. A best friend and lover all in one. Words can’t come close to describing what we had and I will never find the right words to convey how I feel now. It’s like the neon light “vacancy” flashing in my mind over and over and over and I can’t get rid of it.

I want to say that I’m ready to close the cover on the volume of my life with Patrick; that I’m ok with it being in the past and now I’m ready for volume 2. But I’m not there yet. I’m in the transition and I still grieve deeply. I am functioning… I work full-time; I help facilitate GriefShare; I log my miles running; My church attendance is regular; I hang out with friends. But I do all that with a sadness in my heart that just can’t be set aside, a heaviness that weighs my soul down.

In my continual laments to the Lord, I have wrestled with the fact that in my head I know the Lord should be enough. That I shouldn’t need anything else. While that is true, God did make us relational creatures. He created marriage a unique relationship. Jesus himself grieved and there is much scripture about sorrow, suffering and loneliness.

When I am tempted to despair and think no one really understands, I have to force myself to focus on the truth of God’s Word; on His promises for me now and for my future; On what I already have in Christ and what I have to look forward to in eternity. This week a passage that I’ve had memorized for years came back to me in a new way.

Isaiah 40:28-31 “Do you not know?
Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
29 He gives strength to the weary
and increases the power of the weak.
30 Even youths grow tired and weary,
and young men stumble and fall;
31 but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

Other translations say “there is no limit to his understanding.” I cling to that. God created me and He understands me. More than Patrick ever did and more than anyone ever will. In fact, he knows me better than I know myself. I find comfort in that truth.

I’m to a place where about 60% of the time, I can replace my tendency to think negatively with God’s truths in a fairly quick manner and keep on going. The next 30% of the time, it’s more of a struggle. I have to really force myself to apply the Word that I know in my head to my heart. The final 10% of the time is when I’m knocked to my knees both emotionally and physically, feeling completely unable to resist the battle. It’s like quicksand to despair and I’m so tired of fighting, I want to give in and just sink below the surface.

It’s those times that I know I need help. My pride tells me that no one wants to hear from me. That it’s the same ole’ story and if I am sick of it myself, it must be so much worse for my friends. But I have a core group who prays for me and really want to know when the grief fog is thick. So I reach out through a text sharing my desperation and then just let the waves of sobbing come, begging God to help me. Sometimes it’s a few hours and sometimes a few days, but graciously the darkness is lifted and I can start taking a few wobbly steps again.

It’s in these times, that I’m glad God made me a relational person. I couldn’t walk this journey alone. God is the foundation and the reason for my faith. But he also blessed me with many friends who are walking next to me.  Some live nearby and many are miles away.  But it doesn’t matter.  I need them all. They listen, they speak truth to me, they sing, they text, they pray, they email and message me. We eat together, we run together, we worship together, we cry and laugh together. Sometimes we talk about Patrick and sometimes we don’t.

My life with Patrick was a treasure;  My heavenly treasure will be to be with Christ forever.  As long as God still leaves me on this planet, I will seek to follow Him and serve Him with my life.  He can be trusted and I will choose to trust Him regardless of how my feelings vacillate.  He understands and He is worthy of my praise.

Isaiah 43:2 “When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you. For I am the Lord God.

 

 

 

 

those-who-plant-in-tears-thumb

I have never considered myself a crier. In fact, in early adulthood, I was proud of the fact that I seldom cried. After having children, I would occasionally get teary eyed at stories of families with kids growing up or at the thought of losing a child.

That has all changed….drastically. My tear ducts have been flowing non-stop for the past 16 months. And prior to Patrick’s death, for the 12 months that I took care of him and watched him wither away, I was already crying buckets any chance I had to hide in a corner and let them flow. Seriously….it’s a lot of tears.

The Bible actually talks about tears. After all, God created them. I find comfort in Psalm 56:8, in the promise that God knows how much I’ve cried and has my tears in a bucket. That’s up there as amazing as knowing the number of hairs on my head! (Matthew 10:30)

David says in Psalm 6:6 that he is “weary with moaning; every night I flood my bed with tears and I drench my couch with my weeping.” I can relate completely.  Tears are supposed to be cleansing.  Some people can hold them in.  Not me.  Not anymore.  They are always just below the surface and spring forth at random times.

But the verse that has surprised me the most is Psalm126:5 “Those who sow in tears shall reap with songs of joy.” In all my years of studying the Word, hearing messages and reading through the Bible, I never remembered hearing this one. So when my pastor and his wife first brought it to my attention several weeks ago as I sat weeping in their living room, I was riveted. I went home and looked it up and read it in every version and poured through commentaries. This gem of a verse released me from my self-imposed feelings of failure that I should be “doing better” than I am. Gone was the guilt that “I must be doing something wrong” because I am still struggling so much. It is comforting to know that each step I take, even with the tears flowing, is the right thing to do. It’s ok to cry; It’s just not ok to quit. I don’t know when the “reaping with joy” part will come.   That’s not even the motivation for me right now. I just want to be faithful and I only seek to honor the Lord, even in my pain…No matter how long this valley is. I needed to hear that it’s ok to be sad while I’m obeying.

Losing a spouse is unexplainable unless/until you experience it. My earthly best friend is gone and he will never be replaced. And the ache of loneliness is constant. There is no one person to share every detail of life with. The good, the bad, the silly, the pointless, the ups, the downs, the in-betweens. Yes, friends help, but they aren’t the one you are used to going to sleep with every night and waking up next to every morning. There is no one companion who shares your struggles, knows your dreams, encourages you and stabilizes you. No other set of ears and eyes to help you in your perspective. No one person to help you think through things from the minute to the major. And after almost 25 years of having that one person, the adjustment is rough.

I learned early on in my grief that constant isolation is not a good choice, although it’s the natural default when in pain. But it only leads to despair. So I have pressed on….working full-time, involved in an adult small group, serving as a youth leader, attending counseling class on Wednesday nights and going through training sessions to start Grief Share at our church this fall. Friday nights are the worst for me if I don’t have something planned, so I force myself to do something with someone else. All of these things are good and they are helpful….but I still know I am without my life’s partner. It’s still lonely; I still return each night to the deafening silence of my large empty house.

Slowly, I think I am learning to accept the silence. The alone feeling is more normal now. I don’t like it, but it has caused me to be so aware of the Holy Spirit’s presence in my life. More than ever before, I whisper prayers to my Heavenly Father. Prayers of confession, for in my grief, I am still a sinner; prayers of desperation for his grace to endure; prayers focusing on his promises and truth; prayers of intercession for others also struggling. His Word soothes my pain. The examples of faithful believers through the ages encourage my heart. Knowing that He will wipe away every tear (Revelation 21:4) and there will be no more weeping, gives me true hope.

Easter weekend was a real blessing, as it was the first time since Christmas that the kids and I were together. Family from out of town joined us for a few days and church families for dinner on Sunday all made for a special weekend. Both kids are doing well. Paige is finishing her second year at Cornerstone University and will be taking an overseas class to Kosovo for a few weeks in May. Then she will finish her summer doing an internship with Life Builders in Detroit. Parker had an amazing freshmen year at Cedarville University and has chosen to be a camp counselor at Lake Ann Camp in northern Michigan this summer. They are experiencing life the way Patrick and I dreamed for both of them. I am truly grateful.

And as I worshipped with my church family during the Good Friday and Easter morning service, I felt freer than I had in a long time. Freer to cry openly thinking of the suffering Christ endured on my behalf. Freer because I know I have experienced a little of the “fellowship of his sufferings” that Paul talks about in Philippians 3:10. Freer to worship openly because Christ is all that matters. Freer because my suffering really is bringing me closer in every way to my Lord and Savior. The most freedom comes from knowing that it’s because of Christ’s resurrection that I have hope and a reason to live.

Today is 16 months since Patrick entered Heaven. He is living it up with Jesus and many others who have gone on before. I know He is fully engaged enjoying each moment just as he always was here. I can picture him talking, laughing and eating….all the things that he couldn’t do as the awful disease took over and destroyed his body. And since it’s spring, I can imagine that he’s playing golf on some beautiful course, inviting everyone he knows to join him for a “quick 9 holes.”

This morning I am running for the second time, a half marathon. The first one was last October when Paige, Heather and I ran in Detroit in memory of Patrick. During that one I ran with thoughts of how Patrick and I had planned to train and run one together, before his diagnosis of ALS changed everything.

For this one I have trained alone. Me and God, along with my phone playing messages from various preachers and lots of Christian music. (Yes, I run listening to sermons. They are often times easier on my emotions than music.) Many miles clocked on the treadmill and outdoors. Lots of time to think; Lots of time to meditate on truth.

Today I will still run with thoughts of Patrick in my heart, as he is a part of me that will never go away.

However, I am also choosing to run thinking of my Savior. I will be thinking of….

how He suffered for me…

how He loves me…

how He never leaves me…

how He is my ultimate companion…

how amazingly He provides for me…

how He continually protects me…

And how He has a plan for me….

He knows my tears,

And He cares.

 

Philippians 3:14

“I press on toward the goal for the prize of the upward call of God in Christ Jesus.”

For more on tears and Psalm 126:5, read this powerful devotional by John Piper

 

9 Months a Widow

Posted: September 26, 2013 in Uncategorized
Tags: , , , ,

ourhandsfinalBefore, during and after….mentally that’s how I divide my life.

Before the diagnosis of ALS…
During the sickness…
After he’s gone…

Two years ago my life was perfect…at least as far as I was concerned.  Married to my best friend, enjoying our two teenagers, serving in life and ministry.  We were looking forward to the next phase of life, anticipating a new position for Patrick and the kids heading off to Christian colleges.  My new photography business was blooming. Our home was full of love and laughter and we were all happiest when extra guests joined us.

Then came the strange symptoms, doctor visits and tests.  With the results that no one is ever prepared to hear…

A disease with no cure; A certain death sentence.
Immediately our world turned upside down;  our future dreams shattered

Within 24 hours of the diagnosis, two thoughts kept crossing my mind

  • my life as I know it is over
  • my husband will be dead, my children gone and I will be alone

I was right on both accounts.  I just didn’t know how quickly it would all go down.

During his sickness, we were in survival mode.  We dealt with each new decline, while trying to maintain any sense of normalcy and enjoy our marked time together.  Patrick led by example.  He refused to let us stop our lives; he didn’t complain; his smile never waned. He trusted God completely.

Looking back, I realize that I stayed strong because I had to.  We were still a team.  Patrick needed me.  I became his hands, feet and mouth.  I helped him go wherever he wanted to go.  I protected him when I knew it was too much.  I became his advocate for everything.

Near the end, I told him I would be ok.  I thanked him for being an amazing husband and wonderful father.  I told him he had run the race well.  Although he couldn’t respond verbally,  I knew by his eyes that he loved me. He didn’t want to die, but neither did he want to stay on earth in a paralyzed body. So in the final week I asked God to release him from his pain and take him to his heavenly home.

No words can describe watching your soul-mate die.  Heart wrenching is an understatement.

Nine months have already passed.  I don’t know how.  The minutes drag, but it still feels like yesterday.

I knew there were no guarantees of an easy life on earth and that I was not exempt from suffering, so I thought I could handle this. I was wrong.

I thought since I knew the scriptures and believed in God’s sovereignty, I would be ok.  It would be just mind over matter.   I was naive.

I thought God’s grace meant the pain would be minimal.  I had no idea.

Grief hit me like a freight train.  I was unprepared. The intensity of my emotions is visceral and beyond description.  The pain of separation is palpable.

I wish I could say something different to the “how are you” question.  I usually just give a weak smile and say “ok.”  I’ve never been a good liar.

The truth is I am still struggling.  Day by day, hour by hour, sometimes even minute by minute.  I cry every day…it’s just a matter of how hard and how long.  No one has been more surprised by any of this than me.  I’ve been shocked by my neediness and ashamed of my weakness.  Basically, I’ve never been more disappointed in myself.

But God…
He knew all along.  He’s not surprised by my responses.
He meets me right where I am & accepts me.
He assures me through His promises.
I can’t get enough of His word.
Each step I take is a step of faith.

Initially I looked for answers of how to get through this grief process.  I wanted steps that I could check off.  I wanted to pass with a high grade. But there is no magic formula or short cut.  No anesthesia to numb the pain.  The only answer is God himself.

There is no timetable…it has already taken longer than I would have chosen.  Although each person’s grief is unique, I’ve now learned that two to four years for the deepest part of the valley is considered normal.  I’m not in control of any of it.  It’s like a vicious roller coaster I can’t get off.

But I’m right where God has me.

The battle is fierce…to fight my flesh; to fight the enemy’s lies; to fight off despair.  God’s Word is the solution and God’s people the support.

Three young widows, previously just acquaintances, have befriended me and taken me under their wings.  One local and two out-of-state, each further along in their journeys, they have kindly opened up their hearts and shared their stories of pain. They assure me that I am not crazy and remind me of God’s goodness.

And I know God is good.  He is faithful.  I have much to be thankful for. Both Paige and Parker are doing amazingly well at their respective colleges.  They are both where they should be, doing what Patrick and I had always hoped for them.

So I continue to walk by faith and not by sight.  I function to the best of my ability for each day.  I smile and laugh when I can.  And I’m not ashamed when the tears come.

I will never be the same.  My life as I knew it is over.  But God has a plan.  He has a purpose for me and I will be healed.  For now the wound is fresh and the pain raw.  Someday the wounds will cover with scars, but I will be transformed.

To this end, I pray and I wait.

“I would have despaired unless I believed that  I would see the goodness of the Lord in the land of the living.  Wait for the Lord.  Be strong and let your heart take courage.  Yes, wait for the Lord.” Psalm 27:13-14

About a month ago,  I received an email from my alma mater, Baptist Bible College, telling me that I had been chosen to receive one of the annual alumni awards they give out each fall.  The awards were to be handed out during a chapel service in mid-October that culminated the end of the Bible conference and the beginning of homecoming weekend.  I knew immediately that I wanted to go…Northeast Pennsylvania is gorgeous at this time of year and I have years of fond memories from college and seminary.

But there is a big difference between wanting to go and making it happen.  We kept it on the down-low and started making plans.  I knew I couldn’t just get in a car and drive ten hours anymore, so we had to break it up into bite-size pieces.  Then there were the unknowns of the hotel rooms and accommodations along the way.  Plus, we knew we needed more manpower….I’m too much for Dena to handle alone when away from the set-up in our home.

Once the plans were made, we still almost didn’t make it when two nights before we left, I fell in the middle of the night walking to the bathroom.  Dena and Parker had to call 911 for them to come and get me up.  I only suffered a cut on my head and some pride, as now walking alone was put on the “never again” list.  We knew that the administration and students at our college were praying we could come, so we kept plugging away.

It took Dena two days to pack for our little trip, but she’s doing everything now including loading it all up.  As she made several trips to the van with bags of meds, extra supplies, the wedge pillow, handrail for the bed, wheelchair and scooter, she gave me a look that said “do not say one word about how many bags I have!”  It’s kind of a joke between us, as it probably is with every married couple packing for a trip!!  Needless to say, she made sure we had it all!  At each stop along the way, we had friends or family come to meet us and help us into the hotel rooms.  Starting the second day, our friends, Matt & Jolynn Frey, joined us in our van and continued the trip with us.  Once there, Dena’s brother, Tim, also flew in and jumped in to help.

The weather was great, the service was nice, the familiar faces wonderful, and the young students refreshing.  I laughed so much my sides hurt. Receiving the Outstanding Faithful Service award was a real honor and blessing.  It is only because of God’s grace that he can use a former troubled teen for His glory.  I have only been serving God for 25 years, and many others have done so for much longer.  I am humbled.

So was the trip a lot of effort?  Yes!  But worth it? Definitely.    Thank you, friends, family and BBC!

Psalm 84:11  For the Lord God is a sun and shield; The Lord bestows favor and honor; No good thing will he withhold from those whose walk is blameless.