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Is He or isn’t He?

Why that question? Because it is the “the” question we have to ask ourselves every single day in one way or another. Is God sovereign…and is He good? Without resolving that we cannot keep following Him. In this season of my life I have to answer that question almost every day. ..as I see my husband deteriorating from a terrible disease. Could the Lord stop it? Of course . Is He going to ? No. 

As I read the testimonies of those who walk away there seems to be something that ties them together. Something awful happens.. some tragedy that they cannot explain and suddenly it seems that God is not who He says He is. I understand their reaction. Why doesn’t He just do something to end the suffering? Do I have an easy answer ? No I don’t. The only answer for me.. is to know His sovereignty is real.. that His ways are not ours that His thoughts are not ours. 

If I should decide that I know what God should do and He does not do it, then suddenly I am God and He is not. The only safe place for me as I lose Steve to dementia every single day is to put my hope in the goodness of God. To believe that He is for us and that somehow in a way I cannot comprehend He will bring good out of this. Honestly most of the time it is impossible to believe that except for His grace. The grace that is carrying me though each and every day.. every hour.. every minute of this impossible situation. 

He is who He says He is and He will always chase after us with His goodness even when we try to run away and hide. He pursues us to pour our His relentless love into our hearts..

I am writing this with a heavy heart.. please pray for Steve and I.

 

Our favorite beach.. the last one we went to together last summer.

 

Isolation

Yes..that word is powerful..the things that happen in that space are deep and profound. For the last several years the Lord has been working through a lot of isolation..at first when I began to experience it..I was frustrated and bored..wanting more contact with people..more activities..more life..

Strangely it seemed impossible to have a “real” life if I felt alone and isolated..As things have unfolded the isolation has become much more normal..but incredibly difficult. The last 6 months have been a major challenge..my life with Steve is gone and I am in my 3rd living situation where there is a family on the other side of the walls..Does that make the isolation worse? Of course..and now I can’t go see people at all..unless we talk from a distance and we are supposed to restrict our driving to essential things..my emotional health is not great..I am grieving the loss of my husband (he is still alive but in skilled nursing) the loss of our life together..our home..all the things we collected over the years..my work..the death of so many dreams.

Things are hard..but I still have my health and I still have hope..Hope in the Lord and His goodness. The time alone is hard but needed..grieving takes time..it requires all of our strength and energy..it refuses to wait..demanding our attention..it has no timeline..no deadline. Grieving is hard work..if we ignore our grief it will not go away..it just hides inside of us and one day it will emerge and try to destroy us.

Yet grief is not our enemy..if is ordained by God to bring healing and restoration..He works in these seasons of loss and grief..unearthing old grief that we forgot we had. He takes our hand and walks us through the pain so we can begin to heal..He reveals His love to us in our helplessness..we turn to Him because there is no place else to go.

Right now the entire world is grieving ..many of us are grieving on all kinds of levels..people are losing loved ones..jobs..friends..money..we have lost our freedom to go places and do things. Make time to sit with your grief to feel all your feelings..even the ones you wish were gone..be real with yourself and others.

Lord we trust you in the middle of all this ..we believe you are at work and that you are good.

 

Hospice

 

 

Yes.. they stepped into our lives last week.. at my request. Steve is declining rapidly. He can still walk around and eat and he tries to communicate. Most of it does not make sense. He is only partially here.. he is also very tired and weak and unfortunately a fall risk.

How do I feel? Very sad.. relieved that he will get extra help..ready but not ready.. accepting but not accepting all of this. It all happened too fast.. only 7 months ago we were taking our last walk on Drake’s beach.. now he can barely function. Today I talked with him and told him that I would be fine when he went to be with the Lord.. a lie that is necessary.. I hope he understood. I reminded him that he would see his parents and sister there.. He responded positively but it is difficult to know if he truly grasped what I was saying.. My selfish desires to hang on to him are finally gone.. he will be restored there and out of this life where his body and mind are both failing.

I am sharing this because I need to.. it becomes more real when I write about it and it is a very real part of our lives.. learning to let go and saying goodbye when their time is getting close. I sense the Lord being close to me but I am sad and lonely and afraid of the future. There are times when I just want to close my eyes and wake up to the life I have lost.. my husband, our home .. most of our belongings.. all gone..

So.. I continue to believe that God is good even though I don’t know if right now I can rely on Romans 8:28 to be true.. It always has been but nothing has challenged my faith like this trial.. I know I am not forsaken and not abandoned but the nights are long and the tears continue to flow ..

So.. I have opened my heart to those of you who read this.. I am not hiding and I am hoping it encourages you to be authentic and real and allow others into your pain. We were not created to suffer alone and I am so grateful for the family and friends that continue to support me and let me lean on them as this long trial unfolds.

He is faithful and He is good.. He will never forsake us and leave us to face all these things alone. His ways are not ours.. His thoughts are not ours.. We see through a glass darkly..trusting Him to reveal more in His time.

Help me to cling to you Lord..on this last leg of Steve’s journey .. to remember that you knew all this was going to happen before time began..

Christ be with me, Christ within me,
Christ behind me, Christ before me,
Christ beside me, Christ to win me,
Christ to comfort and restore me.
Christ beneath me, Christ above me,
Christ in quiet, Christ in danger,
Christ in hearts of all that love me,
Christ in mouth of friend and stranger.

Update on my life

Steve’s last trip to the beach .. last July.. the love of my life…

It  has been quite a while since I posted here.. I had some internet challenges and had to move for the second time in five months.. life is very hard for me and all I can do is try to live fully while the storm rages.. I feel like one of the disciples when they were in the boat with Jesus.. ” are you going to sleep and let me drown Lord?”.. at the same time I trust that He is at work and will continue to give me reasons to be here. My husband’s dementia is progressing and he is declining.. I see him every day and eat lunch with him .. feeding him yogurt and ice cream.. he loves both. Today I played music for him.. worship and a couple old hymns..he perked up and I know he remembered them.. we or rather I talked about Jesus reminding him and me that He is with us.

I was going through my old emails and I found one he wrote three and a half years ago.. it may have been the last one.. He was reminding me that the Lord was with us and He would take us all the way together.. exactly what is happening. Almost like he knew I would need that right now. God is in this and God has us and He is with us.. the pain is unbearable but we still have the love that the Lord has given us. This disease cannot separate us and eventually when He goes to be with the Lord.. I know that our love will survive into eternity.

For anyone who is suffering and in great pain .. I understand your journey and I only wish I could pray over you in person…

Lord, we are in a broken world and there is devastation everywhere. You are our sanctuary and our refuge in this dark place. We put our hope in you and trust you even as we struggle to believe.. strengthen us and encourage us and give us signs of your presence.. You will never fail us and we love you and will follow you as you lead us..Amen

 

 

 

 

 

Emmanuel

I wonder if anyone will be reading this today.. it is such a busy time of the year.. Maybe I am writing this just for me and that’s OK too. This has been a long year for me and the most difficult year of my life.. the end is in sight and sometime in the first week in January I will be moving again.. I moved three months ago and that was very traumatic.. I pray everyday that the Lord will help me make another transition and that His Grace will sustain me.

Life is so unpredictable.. the future is so unclear and that is really for everyone not just me. We never know what will happen next to turn our lives inside out or upside down.. life is so fragile but we try not to think about that. It is so easy to get comfortable and to forget that this life can change in a moment. I am not writing this to upset anyone.. after all it is Christmas Eve and isn’t it a time to celebrate? For some of us that is exactly what will be happening but for others.. including myself, it is a lonely night and a sad night because people we love are missing from our lives and no one can take their place. I am going to visit my husband in skilled nursing today and he will not understand that it is Christmas Eve or that I am lonely because we no longer live together and he is ill. Maybe that is for the best.. but he will be very glad to see me as he is every day and he will tell me that he loves me as he does every time.. even though he has lost much of his ability to remember and to speak clearly he still has his whole heart and the spirit of God is still working through him.. I am so grateful.

I feel very vulnerable sharing this with you.. but somehow my blog seems like the place to express the real things in my life.. something I probably need to do right now. So this is a hard day for me.. a hard season.. a hard year. Next week I will have another birthday and remember that 18 years ago on my birthday my husband asked me to marry him. He is still the love of my life and will always be.. I am thankful for all these years.. even the  current ones that have been so challenging. I have learned to treasure the moments because I don’t know how many more I will have.. I have discovered that this life is fleeting and we never know when it will end or when someone we love might get sick or die.. It is out of our hands..

Probably the biggest gift of this season is the way I able to see the Lord caring for me and guiding my steps as I stumble along. He makes himself known in many different ways each day. He works through His people to encourage and love me.. He is truly Emmanuel.. GOD WITH US! It is not just a name… it is who He is..

I need him every minute of every day just to continue to have hope and to believe that He will bring good out of this tragedy.. there is no other way to survive. So the name Emmanuel has become real to me this year and I am thankful.

My prayer for you is that you encounter the Lord in this season.. that the things of this world will disappear as you come close to Him.. in your brokenness.. in your grief and sadness.. Christmas is a time to be real with Him to allow Him to become more real to you.. We live in dark times and there are so many things that steal our joy and hope in this dark world.. We need Him more than ever.. He is our sanctuary, our peace and our hope.

love,

Alicia

Upside down

 

It has been months since I last wrote on my blog.. I thought maybe I would give it  up.. but I see that people are still reading it so I am back. My world has turned upside down since I last posted. My husband’s disease suddenly worsened and he was hospitalized. He is now in skilled nursing.. all of this started on the day after Labor day so it has been almost two months. I had to move quickly and I am now staying with my daughter. She and her husband were gracious enough to take me in and let me be here until the next step is clear.

Everything is unclear.. my husband is still here but eventually this disease will take his life and I will be a widow again.. The first time was 20 years ago. Everything is different this time.. Steve and I are having a sweet season right now.. I am able to help out with his care and show him that my love is just as strong as ever.. He is able to smile and tell me he loves me.. even though he is confused and disabled now.. He remembers me and he remembers us. We still look into each other’s eyes and I continue to look forward to each day that I have on this earth with him.

Dementia is a terrible disease and it should not have the right to take the life of someone so young.. it is so hard on the person who has it and terrible on those who love that person. Sometimes I just can’t imagine that the Lord is allowing this and yet I know deep down that he has purposes that are totally mysterious in all that is happening. I am grieving for the life we had together.. knowing it will never return. I miss us.. our home, our lives our dreams. I look ahead the road is empty.. no more dreams for me.. only the hope that God will not waste this suffering.. that He will use me to bring comfort to those who will go through this and need understanding.. He is teaching me what grief feels like that is daily.. anticipatory grief.. ambivalent grief.. grief that rises up and attacks me at night.. grief that hides it’s face and suddenly tries to drown me.

A while back I started writing poems.. I never even liked poetry but they seemed to come out of the darkness and sadness.. from somewhere deep inside me.  Here is the most recent one:

The Eye of the Storm

It is totally dark

the winds blow all around me

There is no future

No light

Only a deep darkness

I am alone

sad, lonely, waiting

The road ahead is empty

He is here with me, yet I 

feel like I am falling

Keep me close to you Jesus

 

My memories of our life together are like sweet soft pillows that I lie on at night when the sadness comes.. the trips we took.. the dinners we ate.. the drives we went on.. the sweetness of our love.. nothing can take that away.

Our God is with us as we continue to trust Him through all of this.. He will never abandon or forsake us.. we are His.

Romans 8:28

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“We are confident that God is able to orchestrate everything to work toward something good and beautiful when we love Him and accept His invitation to live according to His plan.”

This is a quote from the Voice translation of the Bible.. I love the way this is expressed.. so clear and easy to understand. I learned this verse when I was a new believer and have held on to it ever since.. over 40 years now. Lately I have been doubting that it could possibly apply to my present circumstances. How could the Lord bring good out of this? My husband losing so many abilities and words and me losing him little by little.. impossible to see that turning into something good and beautiful.

This weekend the Lord showed me that He is still living up to His words in this verse. My two step sons and my grandson came to visit us. The back story is that there has been almost no communication with his oldest son for many years.. the last time we saw him was 9 years ago and there have been almost no conversations for the last 17 years.. since we got married. I don’t know what happened.. but now it does not matter at all. As they were driving here from Idaho I decided that I wanted to welcome them with a dinner and I drove to the store.. While I was there I questioned the whole thing.. what would it be like? Would we all feel very awkward, would there be anger? I distinctly heard the Lord say ” It is a celebration” and that we were welcoming home the prodigal son. Wow! Really God? Sounded good to me and I bought what I needed to make the dinner and went home wondering .. what next?

They arrived a couple hours later and when we opened the door.. it was exactly like the story of the Prodigal son.. “But while he was still a long way off, his father saw him and was filled with compassion for him; he ran to his son, threw his arms around him and kissed him.”  …The room was filled with joy and the weekend continued to unfold.. with many tender moments and many tears.. I was stunned.. never expecting to see this moment and never imagining it could happen right now!

For me it has lifted the depression and despair that has surrounded me for the last year…my faith was getting weaker and weaker and I was crying out to Him daily.. Save me. . I saw that the Lord is bring good out of the suffering of this season.. I know now that the Lord has been at work even though there was not a single sign of that.. He was doing things in everyone, preparing us for that moment when He would move and do what He does best.. bring Healing and Reconciliation!

I see how God is using my husband to bring us all together.. this man I married is an instrument of sacrificial love for the whole family.. He is still giving so much to us as he is losing everything.. For the first time since we got married I feel grafted into his family and they are becoming more and more precious to me every day.. what a wonderful gift.

I hope this encourages you.. I know what it feels like to lose hope and to wonder if God even knows or cares.. the trials of this world can devastate us.. He will show up and surprise you, just as He just did for me.. This season is never going to get easier, but my desire is to continue to Trust Him and to believe He has more gifts to shower down on us.

” He has sent me to tell those who mourn
    that the time of the Lord’s favor has come,
    and with it, the day of God’s anger against their enemies.
To all who mourn in Israel,
    he will give a crown of beauty for ashes,
a joyous blessing instead of mourning,
    festive praise instead of despair.”

Lent..again

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As I look back on my blog, I see that I seem to write a post every year during Lent.. I want to be true to that tradition and it has been a while since I posted. I always see Lent as an opportunity to reflect.. to look back and to see how God has been working and to be aware of what He is doing right now.

I don’t even remember the Lent season last year.. probably because I was getting ready to bring my very disabled elderly mother to my home. I brought her here almost exactly one year ago.. It was the day before Easter 2018.. so that was March 31st.. the day after my wedding anniversary.. I was pretty worried about how it would go and that was apparently a prophetic feeling…since it did not go well at all and three weeks later I was frantically looking for a skilled nursing facility that would take her.. I never found one but Kaiser did! What a trial that was.. then we were faced with another even more challenging situation. It was becoming very clear that something was wrong with my husband and I knew I had to face whatever it was.. we found out in May that he has a rare type of dementia..

I have been grieving since that neurology appointment and it is only now that I feel like I can say that I have begun to accept this outcome.. many nights of crying, yelling out to the Lord and feeling sorry for myself followed that diagnosis. We are now living in a “new normal.”

This year for Lent I was hoping to focus on giving up worry and anxiety.. but God seemed to have another plan for me. Instead of trying not to worry or be anxious He began to show me that it was impossible to truly get rid of those things and that I needed to give myself permission to have those feelings and others  and to welcome them as part of me.. I never imagined that as an option.. but it has helped tremendously. There is even a name for this.. Welcoming prayer..As I have tried this.. my process is to sit with my feelings, to acknowledge them and not fight them.. to just feel them and when they are less intense, I release them to the Lord.. The result has been more peace and much less fear.

It was a big shift for me to realize that all feelings are legitimate and that I don’t have to deny them or try to kill them.. even the ones I dislike.. that the Lord will enable me to live through the times of sadness, pain, grief, worry, anxiety, fear and anger. I realized at a deep level that I am not defined by these feelings or these times of struggle. We live in a broken world and when the brokenness overwhelms us it is incredibly difficult and impossible to pretend that we are not suffering and hurting.

The take away is that we are loved by God even as we battle the feelings we wish we never had. He is not going to leave us even when our circumstances overwhelm us. So I am living more fully day by day and thanking Him for the good days..or maybe just the good hours or minutes.. Knowing that this journey is full of uncertainty when it comes to our future but that we can be certain of God and His faithfulness.

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Memories

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Remembering is such an important aspect of our faith. We remember all that the Lord has done for us.. He remembers us.. our needs, desires.. everything about us.

I have lots of time on my hands these days since my only job is to help my husband in the ways that he needs it.. The condition he has affects his memory and that impacts our relationship as well.. I want him to remember things that he has forgotten and he remembers some things that I can’t remember because we were not together until later in life. With this extra time.. I can reflect on how all of this is impacting me.

I understand that his forgetting is a big deal for me.. it seems like we base so much of our life together on the good times we have shared.. Fortunately he still remembers lots of those times.. but I know that could change. Today as I was getting lunch ready I thought about this and realized that the Lord has all those memories and even if we forget things.. God does not and someday we will be together with Him and all the memories will be returned to us.  We will be restored and nothing will be missing.

One thing that my husband is not forgetting is the Lord and how important He is to us. He won’t lose that knowledge because he has the Spirit of God in him.. we can pray together even if he forgets many words..we can reminisce about how God has always been there for us even if the details are foggy.. Our God is very much in our midst and He will stay with us through whatever the future holds.

My job besides the care giving is to remember the goodness of God above all else. To dwell on all the ways He has come for me when I thought everything was lost.. to know that nothing that is happening behind His back.. He knows and He sees and He will direct our steps in this season.

“I will remember the deeds of the Lord;
 yes, I will remember your wonders of old.
I will ponder all your work,
and meditate on your mighty deeds.”       ( psalm 77:11-12)

Be Still and Know

The theme for this year is from psalm 46:10. ” Be still and know that He is God.”  This verse follows me everywhere I go. Where is this stillness that He promises?.. I am not sure. Inside I am often anxious and worried.. the stillness I long for is so hard to find. Sometimes I see myself in the 23rd psalm.. ” Beside the still waters”  when the circumstances are just right. If I am walking outside on a beautiful fall day I get this glimpse of the quiet and the stillness that He is offering. I long to be there continually but it is very difficult. Our circumstances jump out at me and demand attention.. turning me away from God. All I can do is turn back and cry out to Him.. teach me to rest in you and to be at peace no matter what happens.

I know His faithfulness.. after walking with Him for forty years.. He has come for me over and over again. He has provided in so many ways and revealed His presence over and over.. yet I struggle to believe Romans 8:28 right now.. What good can come from this Lord? So what is there for me to do? Wait, pray and trust that He is at work and that in His time He will come for me again and lift me above the pain and suffering.

So I decided to write this out.. to reveal my struggle.. to stop hiding.. I am grieving the loss of so many things right now and watching my life change radically.. feeling at the mercy of God and wondering if there will ever be joy again.. Maybe you feel the same way.. if that is the case, I hope you know that you are not alone. All of us go through these dark seasons.. these tunnels where the Lord seems so far away and there are no answers.. we live by faith not by sight.

So Lord.. I pray for anyone out there who is in pain.. anyone who is grieving.. anyone who is longing to feel close to you.. Come for them Lord and come for me.  Amen