“I didn’t think I could love her more,
but now that her eyes are crossing and she can barely move…
I love her more.” – Michele
We rejoice in hope of the glory of God.
Not only that, but we rejoice in our sufferings,
knowing that suffering produces endurance,
and endurance produces character,
and character produces hope,
and hope does not put us to shame… Romans 5:2b-5a
It’s hard for me to write if I feel that nothing particularly noteworthy has happened worthy of recording or reading. It’s not that nothing has happened, it’s just that what is happening is moving along in slow motion. Of course, in retrospect we may look back at these days and feel they were like living in a hurricane. But as it stands now, it’s just a grueling process. The number of times we thought it would be over within a matter of days is only equaled by the number of times we felt it would drag on in perpetuity.
The word I used to describe Alice a few weeks ago was “flickering.” Tonight I might use the word “fading.” The light in her eyes continues to dim. Her legendary smile, while not yet entirely relegated to the realm of memory, is but a shadow of its former glory.
However, I want to take a risk and rather than using safe and benign description of “fading,” the word that more fully encapsulates her in these moments is “dishonor.”
I take the word from the Apostle Paul who, referring to the death and burial of a Christian said, “We are sown in dishonor…”
Alice’s tumor is not only sucking the life out of her, it’s stripping her of her dignity. She tries to draw pictures like she once did, but she’s frustrated by her inability to make her unsteady hand do what she wants it to do, and she hates that her drawings aren’t nearly as good as they used to be. She needs help in the bathroom. She drools, a lot. Every word is laborious, slow and increasingly unclear. Her once sparkling eyes are crossed and she struggles to focus them (although… eating nachos this afternoon she managed to spot on one of her chips a molecular sized piece of ground beef that had to be removed before she would eat it!) And I don’t think it has gone unnoticed that her 9-month-old sister is more mobile than she is.
This slide into dishonor is hard to watch. After all, I deeply desire her to be honored, to be glorious, free from being humbled by a disease we can do nothing about.
On the one hand the worse she gets, the more love and compassion we feel for her. It doesn’t matter how weak she is, how sparse the laughs or slow the words, our love transcends those things, is even intensified by them. There are hidden dimensions to love that can only be revealed when a certain light shines. As Michele said, we “love her more,” because we love her in new and different ways we simply couldn’t before. There’s something to be learned about God’s love for us by observing Michele’s love.
But on the other hand, if we were able, of course we would restore her beauty and her abilities to their original form. So there’s both a sense in which it doesn’t matter that she is being dishonored by cancer, but there’s also a sense in which it very much does matter, because we want the dishonor gone and the beauty of vitality back.
After all, every citizen of heaven will be made glorious, honorable, and beautiful. Ugliness, deformity, incapacity will all be eternally transformed into stunning and satisfying perfection. Imagine an eternity of life with flawless beauty, untouched by age, sorrow, or disease. Dignity, honor, and beauty matters to God. Dishonor will be banished in heaven. Those sown, buried in dishonor, says Paul, will be raised in glory. That means Alice’s twinkle will be back; the laugh will again echo, the smile will once again reproduce itself on every face that witnesses it.
But tonight she is still with us. And we’re glad. We get to hang out under the chestnut tree just a little bit more. How much longer, who knows. Maybe days, maybe weeks. Tuesday will mark the end of week six since the 4-6 week prognosis. Alice is very, very tired. Her breathing is getting faster, her heart is working harder. She is getting weaker. I wish it wasn’t so.
This week I sensed the entire family was getting really weary of the battle. This is a hard thing to live through day after day. So I wanted to try to provide some bit of relief. You know, get out of the house and do something fun. But it dawned on me with force and frustration that Alice really can’t get out anymore and that makes me incapable of doing those diversions that sort of refresh our energies. There’s not much that’s “fun” for her either out and about or right here at home. She may be able to muster up the strength to enjoy something for a few moments, but that’s about it. She’s just tired. Tonight she had a few moments of fun sitting on the trampoline with a marker scribbling on everyone else’s face or arms or legs. Kind of a shame we’ll have to wipe it off.
Michele and the kids continue to amaze me. I’m in awe of Michele’s strength in these days. She maintains her poise and stability while loving and hurting more deeply than I can even imagine. The kids have adapted so well to this alternate universe we’ve found ourselves in the last eight months. I am so very proud of all of them. God give us continued grace.
I remain confident that God has heard our prayers. I hope to write about that soon. I remain adamant that the day is coming when we will see with eyes filled with tears of gratitude that this is the best thing that ever could have happened to her, and to those who love her. It’s really the only way to make sense of the inescapable three truths that nothing happens except that which God is in control over, He loves her more than we do, and He is perfectly capable of fixing her at any moment (and has been begged to do so repeatedly and loudly by a great multitude!) and hasn’t yet chosen to do so. For those God loves, all things, even and especially the bad ones, work together for good. He loves, and He works. That has to be enough for us for now.
If I think of what I would do for her with my limited love and limited ability, imagine what God is doing and will do for her with His infinite love and infinite abilities. And for that reason, we trust Him with these moments of dishonor. They are temporary. They are producing for her an eternal weight of glory. I’m not crazy about the process, I’ll admit. But I am really excited about seeing what God makes of it.
We continue to be the recipients of unbelievably kind, gracious, and thoughtful generosity, more than we could ever hope to begin to acknowledge. A few months ago, I used to take Alice with me into the Wells-Fargo in Cambridge when I had to do something at the bank. She only accompanied me inside because she knew they have suckers. It turns out that the lady who helped me set up Alice’s savings account there is also my neighbor. So after I got to know Tricia a little bit, I would send Alice into her office to steal suckers whenever we went. For the last six weeks, Tricia and her kids have dropped a sucker in our mailbox for Alice every day without missing a single one. Amazing. If you can’t find a pink sucker at the bank, it’s because Alice ate them all. Tonight, I had to say that Alice just can’t do suckers anymore. I hated having to do that!
For all the cards, letters, and gifts, on Alice’s behalf, I offer you her thanks. I only wish you could enjoy her enjoying them. For all the prayers for her and for us, thank you. We need them, and they buoy our hearts. To our Lewis Lake family, and Pastor Bob, who continually support and encourage us along, who gave their hearts to Alice knowing full well it might break them to do so, thank you.
note: the lack of pictures is my way of protecting Alice’s honor. I want to acknowledge the reality of her condition without flaunting it, which I hope I have done. I’m trying to follow the example of the greatest Author limiting the description of his Son’s greatest moment of shame to the simple words, “they crucified Him.” Real, but not embellished.
May 28, 2018 at 5:55 am
Words are just not adequate for how I ache for you all. Praying for the Lord’s mercy for Alice and you all. I’m so sorry you have to walk through this.
May 28, 2018 at 6:16 am
With a heavy, hurting heart we continue to pray for little Alice and your family. She will soon have a new Chestnut tree to sit under with eyes that are perfectly beautiful again and she will have a smile like never before. She will run and not grow weary. Probably no pink suckers but maybe trees with pink flowers that do not fall off. May God surround you with His love and give you peace.
May 28, 2018 at 6:51 am
You had much to say, and did so incredibly well. I think of your family and Alice every day and hold you all in my heart and prayers.
May 28, 2018 at 7:33 am
Again thanks for posting even though your heart is breaking
May 28, 2018 at 7:45 am
Thank you for sharing . . . I read every word of every blog. It helps me to pray more intelligently, as a dear friend used to say. Today touched me in an entirely different way, as I could apply it personally to my own life. Dishonor really applies to an 88 year old with Parkinson’s . . . His body is going but his mind, not so much. You’ve helped me to understand and deal with it. Thank you and God bless you and your family.
May 28, 2018 at 8:38 am
Your family, Alice and you are in our continually daily prayers.
May 28, 2018 at 8:44 am
Praying for your family, here in Wyoming. May God shelter you all under His grace. Alice’s story has captivated my heart and made me so much more thankful for each day I have with my children.
May 28, 2018 at 8:50 am
Your strength and faith and abundant love is an inspiration. My prayers are with your family and I honor Alice, and the dignity you are providing her, in this process of a journey to a glorious place.❤️
May 28, 2018 at 9:11 am
It is an honor to read your journey, and Alice’s ascent to glory. Love and Prayers from Minneapolis
May 28, 2018 at 9:30 am
We lost our son to cancer and our hearts are full of sadness for you all that you are going through. Its so terribly devastating to see them go through everything they do. It’s just not right. But our hearts are filled with such joy knowing she will know be Jesus and feel such peace and love that we can’t begin to imagine. Our hearts are at peace knowing our son is in Heaven pain free and unbelievable happy. One day we will be reunited with him again and it will be the most joyous day. May God give you peace and comfort and I pray you all continue to feel his presence .
May 28, 2018 at 10:00 am
I am praying for your family and your little angel for teaching us all how important Family, faith, and how the little moments are really the big ones in this life.
May 28, 2018 at 10:34 am
Precious Reed family,
Our family in California is praying for your entire sweet family. We know this affects each of you tremendously. We know God is intimately acquainted with all your ways. He will continue to make beauty from ashes. And your upright testimony has been an amazing blessing for many to see. We are praying for you, and will continue to. May you keep finding shelter in the Rock that is higher than us. Rock of Ages, cleft for me, let me hide myself in Thee. Love, Ali (Fremont) Cooper
May 28, 2018 at 10:51 am
The wisdom and understanding you all have gained is very beautiful to read about. Have had your family in my thoughts and prayers for some time and will continue to pray for you all. I want to share about an entry recently recorded in my journal. Similar to your point above of being sown in dishonor – it has to do with what we learn about Jesus in Hebrews 2:9-10, and 5:8-9 I will quote the verses here – “But we see him who for a little while was made lower than the angels, namely Jesus, crowned with glory and honor because of the suffering of death, so that by the grace of God he might taste death for everyone. For it was fitting that he, for whom and by whom all things exist, in bringing many sons to glory, should make the founder of their salvation perfect through suffering.” “Although he was a son, he learned obedience through what he suffered. And being made perfect, he became the source of eternal salvation to all who obey him.” So… Jesus, son of God, Immanuel, lamb of God – the sinless one was NOT perfect… until he was subjected to the dishonor of suffering and death! It was His obedience through suffering and death that brought perfection so we too are perfected in our faith when tried. For through suffering our flesh is crucified and we learn to walk in His Spirit. Through grace He perfects in us His will, His ways, His image, and yes, His Glory and Honor! So happy to read your words “I remain adamant that the day is coming when we will see with eyes filled with tears of gratitude that this is the best thing that ever could have happened to her, and to those who love her” – as you are leading your family to see the eternal truths above all else. You, like Paul can confidently say…”with full courage now as always Christ will be honored in my body, whether by life or by death. For to me to live is Christ, and to die is gain.” Soli Deo Gloria!
May 28, 2018 at 11:10 am
We grieve with you all. Oh, the broken road is hard and blessed. We will continue to pray for all of you and hold you up as you walk through this long dark valley.
He will hold you fast.💔. Words fall short.
Karie and Scott David
May 28, 2018 at 11:10 am
I have no words–only tears and prayers. I am so, so sorry for Alice and for you all.
May 28, 2018 at 12:09 pm
Things always happen for a reason. A friend posted a link to your blog and it was much needed by me at this time in my life. My father in law is between a rock and a hard place. Take the medicine and die, don’t take the medicine and die. A little over a month now and we’ve gone from elation, he’s getting better, to sobbing that nothing can be done… yet he’s getting better. I’ve questioned G_d, how could he do this to a man that has served him all of his life. Watching the dishonor. Your words have touched me, as they were meant to. Thank you for this gift of understanding. I pray for you and your little girl, for strength and comfort.
May 28, 2018 at 1:25 pm
We are praying for Alice and your family daily. Thanks for sharing your heart.
Keep believing that God is good – All the time!….even when we don’t understand.
Josh & Sarah(Hilgendorf) Overfors and family
May 28, 2018 at 1:31 pm
Your dear family is never far from our thoughts and we continue to pray for you all everyday.
May 28, 2018 at 3:22 pm
I’m sorry,, I have no words,,, please know my heart and prayers are with you all daily. much love and prayer, Jamie
May 28, 2018 at 3:39 pm
As a new grandmother to a baby granddaughter I’ve never realized the unconditional love you have for your children who give you such a gift of life. To Wendy & Dan who we’ve known for a long time, I’m so sorry. For you two- the parents of your beautiful angel, Alice, my heart is breaking for you and your other children. Continued prays to you all, that you may you find peace , comfort , strength and love in this terrible nightmare.
May 28, 2018 at 4:29 pm
Thank you. This cannot be easy!! Alice we love you and think of you and your family often. My God bless each of you in any way that you need him to. Prayers and faith to you all! Thank you for letting us be part of your journey…
May 28, 2018 at 6:01 pm
Thank you for your courage and your faith in sharing with us that even the most difficult journeys have a glorious purpose. In the end, our Father’s honor and grace will supercede all the dishonor in this life.
May 28, 2018 at 8:18 pm
I’m a mom who lost an 18 year old son, suddenly – no warning, no sickness – motorcycle accident. I am glad to see the support you have & I hope it continues as the days go by. You can not realize, at this point, the pain that the loss of a child brings. I hope you have people you can lean on if that happens. There are resources & groups that are helpful. God will give you a peace that passes understanding, but the journey is not easy. Hugs
May 29, 2018 at 5:22 am
I know exactly what you are going through. My son had to go through dishonor while he had one foot in Heaven and one foot on earth. GBM. I know the love, the pain, and all those emotions that can’t be spoken. The Holy Spirit in us makes us one with you. My love, prayers, pain and joy go with you and darling blessed Alice who soon will be totally healed, well, and dancing with Jesus!
May 29, 2018 at 6:55 am
Love and prayers to each of you. You are teaching all of us so much about how to honor God in our suffering.
May 29, 2018 at 7:42 am
I don’t say much. Words escape, even though your description is like a flashback. We will keep praying for Jesus to be your rock, for Jesus to be the anchor for your children’s hearts as they process these moments and relive them later on.
Love and prayers from the Worners
May 29, 2018 at 3:32 pm
13 May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.
Joe, I know you are overflowing with hope, because I can read it in all your posts. You are an incredible example to follow and I won’t forget to pray for your family after this stage is over.
May 29, 2018 at 7:21 pm
Continued prayers for your family. Thank you for holding forth the Truth and shining for His Glory. We pray for this precious time together and eyes focused on God’s plans.
Our hearts cry out for you all,
Deb and Ben
May 29, 2018 at 10:03 pm
Thank you for sharing your raw emotions and deep insights that magnify our God even in your “impossibles.” We pray for you Reeds often. Our hearts are touched with your pain, but our faith is strengthened and we are inspired by your faith. I agree that, looking back from Heaven, we will gasp in awe at all the good God was doing during this humanly tragic time. Onward to victory!
May 30, 2018 at 5:06 am
Oh, sweet, sweet baby girl, I was just reading in my Bible how our flesh and our heart may fail, BUT GOD is the strength of our heart and our portion forever! Right this minute and the next minute and the next, HE is your portion and HE is your strength, because He promises to be. I will be thanking Him through the day for being your portion and your strength. Keep trusting Him, baby girl.
May 31, 2018 at 7:23 pm
No words can express how sad you must feel watching the process of Alice’s journey. God’s Grace is evident in your lives through it all.
I remember a sermon your Dad Reed gave once talking about how our body is just like a tent housing our spirit until we enter heaven and get our new body. Alice’s tent may be tattered and torn right now but she will soon be rejoicing with her Lord Jesus.
May our God fill your empty, tired, and saddened hearts full of His Grace and glory in our Lord Jesus Christ. May he cover you all with a peace which surpasses all of what you know and understand. May your strength be filled with the same power that raised our Lord from the dead.
Much love and prayers are given to little Alice and the entire family. Many from the UP are standing with you because that’s what God’s “family” does!
Love and prayers in Christ!
June 1, 2018 at 10:18 am
Thinking and praying often for you all! Dear sweet Alice is surely leaving a legacy!
June 4, 2018 at 3:35 pm
I too have followed this story from its beginning with prayers, tears, hope, disappointments, anger at such a cruel disease, but mostly with amazement and a sense of wonder that so much beauty can shine against the backdrop of something so ugly. Like a precious, brilliant, priceless diamond placed atop black velvet. Or a bright candle that not even the most intense darkness can extinguish. It is God moving in His mysterious ways… What else? Alice’s little light has shined into so many hearts. Christ crucified, but alive, has chosen to shed His light through her, through all of you, in ways that only Eternity will reveal. That Cross, that Christ, forever stand… “Towering over the wrecks of time”…to remind us that His beauty and glory are not diminished in the worst circumstances of life, but rather displayed most brilliantly. Holding you all very close.
June 7, 2018 at 12:56 pm
Whew. Incredibly hard stuff you’re going through. It breaks my heart when such a beautiful and young soul is afflicted like this. I am praying God’s sustaining PEACE through all this – that you would all know how high, how deep, how wide His love is for you. I am praying for Alice – that she would be comforted by His presence when she is feeling less than comfortable in her situation. I am praying for her care team – that they would be guided by His wisdom, knowing exactly how to care for Alice (and her family) on each step of this journey.
Keep looking up. Your heart will need to hear that over and over, because while your head KNOWS Truth, when our hearts are breaking and our eyes are leaking, sometimes if feels like some of our heart knowledge can leak out a little.