“My story is important not because it is mine, God knows, but because if I tell it anything like right, the chances are you will recognize that in many ways it is also yours… it is precisely through these stories in all their particularity, as I have long believed and often said, that God makes himself known to each of us more powerfully and personally. If this is true, it means that to lose track of our stories is to be profoundly impoverished not only humanly but also spiritually” – Frederick Buechner

In the last few months I have heard of several more people with families members now marked by Dementia or Alzheimer’s. Several more families now watching the person they love diminish before them. Several more families wondering how to care well for these loved ones, how to walk through this new season without becoming exhausted and overwhelmed.

Those that are closest to me, I refer to my Dad. The husband of one of these I told to call my Dad because he has walked through this with a wisdom and a grace that give strength. Not perfectly, and he will say he has done so with nothing remarkable…but the truth is he has shown all of us how to walk well in the season of suffering. I’ve learned from him. His story gives strength to those who hear it; they know they are not alone and that this challenge is not impossible.

The reality is that so many are touched by some form of this disease. The quotation from Buechner above is often used, mostly because of the deep truth it tells. We need to hear each others’ stories because they tell us more about our own situation. They give us strength in the midst of our own fears or our own uncertainty. We need to hear the testimony of those who have walked a little further in the struggle than we, and can tell us of God’s grace.

In the Book of Revelation, when it tells of the accuser of the saints being conquered, this is said:

“And they have conquered him by the blood of the Lamb and by the word of their testimony, for they loved not their lives even unto death” Revelation 12:11

Our testimony carries weight.

Our stories carry weight.

So. To those friends who have just begun the journey of Alzheimer’s or Dementia, to those who are overwhelmed with fear and sadness: God is still there. God is still in the midst and His grace is present. The testimony of the saints who have walked this way proclaims that.

Here is what my testimony in the middle of this journey proclaims:
It’s okay to be sad, to be overwhelmingly saddened by the loss of the personality of the one you love. To grieve deeply as life events unfold and you are aware that this person who is present is not completely with you…and to know how different the situation would be if they were. To know how they would love your children, to know how they would laugh and would rejoice over your accomplishments.
It is okay to grieve, in the midst of the journey…but know you cannot grieve the entire time. There will be moments of laughter in the midst of this craziness. There will be moments of light.

Dad: “Good morning, my dear. I love you.”

Mom: “Well. What do you want?”

———————

Brother: “Mom, did you like that restaurant?”

Mom: “Yes.”

Brother: “Would you like to go back?”

Mom: “Well, not tonight!”

There will be glimpses of that personality that pop up. And they will be all the more treasured because they are rare and they will bring a flood of memories of who that person is who is in your midst still.

 Laugh and rejoice in those moments, and don’t be afraid to laugh.

This is a long and tiring mourning. This is a slow losing of the person in front of you: pace yourself. Rejoice when you can, and mourn when you need to. Then look for God in the midst. See Him in graces small and large. In family coming together in the midst of struggle. In strength you didn’t know you possessed. In appreciating this person in ways you might never have done without this change.

And realize that as we weep over this disease and what it does, we weep with God. This wounding of creation, this loss…I truly believe that He grieves with us. As Creation groans…as we groan. We cling to the promise of new life, of new creation. Of grace and of a Creator who cares and who intervenes and who redeems. We cling with hope as we hear the testimonies.

Tell stories. Tell of the one you love and remember them well, in the midst of the struggle. Write down the stories and remember. Know that you are not alone and pay attention. Know that eventually your testimony will bring strength to someone.

Again, Buechner

“Listen to your life. See it for the fathomless mystery it is. In the boredom and pain of it, no less than in the excitement and gladness: touch, taste, smell your way to the holy and hidden heart of it, because in the last analysis all moments are key moments, and life itself is grace.”

About thirteen years ago the church Steve and I attended had a special summer series in which the pastor answered questions from the congregation. One Sunday was devoted to questions about parenting. We sat there with our infant, just beginning to embrace this whole parenthood adventure.

One comment has stuck with me all these years. The pastor talked about how we speak about teenagers. How often we hear the phrase, “I just dread those teenage years.” He challenged us to speak with hope and expectation, not dread. Talk to our kids about how we look forward to who they will become, and all the stages of our interaction.

Expect that they will be teenagers we will enjoy and love and admire.

I don’t know if we have always done that perfectly, but I have to tell you: I love my teenager. He turns 14 today and constantly impresses us. He is intelligent and quick witted, talented and kind. He has a great imagination and an excitement about things that are bigger than himself.

He has delighted us from birth. Coming into the world calmly and instantly aware.

As he has grown, he has impressed us at every stage with his ability to adapt and take on challenges.

He has led the way as the big brother, encouraging his brothers and harassing them in just the right proportion.

He is Maddie’s “Best Buddy” and such a great big brother to her.

He has introduced us to a whole world of sports we never could have guessed we would love so much.

And has grown in this beyond just physical ability. He has learned the balance of being competitive and being kind. And not throwing sticks and yelling when he loses anymore.

My pastor’s advice was sound, not just wishful thinking. I thoroughly am enjoying these teenage years, mostly because of this remarkable teen. Our expectations and hopes grow as he constantly exceeds them.

Happy Birthday, Zachary. You are loved, admired and we are thoroughly blessed you are our boy.

Well, how is Mother’s Day in your house today?  Here it has been focused on a sick boy who keeps spiking in his temperature and just doesn’t feel well. We’ve had a household fighting off strep and various gunk. Yuck. Motherhood, though, yes?

It has also been a day thinking about my Mom.  These markers that come and go and seem to force us to pause and assess.

I’m not exactly sure how many years we are into this journey in Dementia, but it is somewhere around six or seven. This long progression of losing someone before your eyes. Watching the memory fade, and then the personality and the abilities. It is a wicked disease and leaves us in a limbo of both mourning and thankfulness for the moments when she is present.

There is no easy aspect. No quirky quote that sums up the journey. It is difficult, and it seems to be long. The presence and the voice and the moments when she says something that is “her” make the awareness of how much is missing all the more painful.

Still…she is present and there are moments. Like the other day when I called and spoke with her on the phone. I mentioned that I need to come visit soon and bring the kids and Steve. She responded, “Yes, yes. I will need to make a list.”

That is her. She always had her lists. Every morning I can picture her in her chair, looking out the large windows in the house where I grew up, clipboard or notebook in hand and making lists. Lists of people to call, lists of things to do, lists of lists.

These things bubble up sometimes. A moment of wit or a moment of personality that are stark against her inability to find words that make sense.

So, Mother’s Day is another marker. Another year of progression, hand-in-hand with the delightful growth of my own children. The mixture of joy and sorrow…that is life.

Rejoicing while holding the awareness of our broken state. Sometimes we simply have to set aside sorrow and rejoice and embrace the goodness around. Sometimes we have to weep for the brokenness even while surrounded by blessings. We have to give ourselves the room and the permission to do both, because there is healing in both tears and laughter.

Even as Moms. And Daughters. We have to embrace the blessings and the sorrows, because life is forever a mix of the two. We grow through the sorrow, and I think we appreciate the blessings more in light of the sorrow. 

So, Happy Mother’s Day to those who are rejoicing in their children. Those who are surrounded by blessing and are strengthened and joyful. Relish that joy and praise with gusto! Happy Mother’s Day as well to those who mourn, to those who see more brokenness than joy at the moment. It is a moment. There will be a shift when joy will be stronger. Let the suffering strengthen us as well…and give us a deeper joy when the wonders reappear.

Oh my word, does it ever feel foreign to be back at the keyboard. Amazingly, six months have passed since I last wrote anything in this little cyber journal.

Life has been busy, life has been stressful, life has been joyful…and yet my mind has simply not been in a place to think out loud.

Until…a little man’s birthday. His ‘day’ actually happened a couple weeks ago, however we are having our last family dinner together this weekend, so I am sneaking this post in before that happens.

The little one…the big one’s day is coming in a couple weeks.

The youngest of the three brothers, he is breaking me out of my slump in writing. Bringing the blog back to life.

He has a way of doing that.

9 years old, filled with imagination and laughter. He has always delighted us.

Talented in everything he tries, he has rocked it on the soccer field and in class. He has a laugh that is infectious, and yet…there is a timidity and a watchfulness about him as well.

He has grown so much!! Matured in his thinking and his talents.

Always read to have a cup of coffee with me first thing in the morning. Ready to hear George MacDonald before bed. He watches his big brothers and learns, while he is tender toward his little sister. Caught in the middle…and yet flourishing there.

His personality is becoming more and more his own.

I love watching him grow. Love watching his tenderness toward animals, and his enthusiasm around his friends. Love watching his questions about God develop, and his quick reminders each night that it is time to pray together.

Happy Birthday, Mr. Sam. I love watching who you are becoming. You are such a key to this family, such a wonderful dynamic in our little home. So thankful for you!!!