As the year turns, so approaches
the seventh anniversary of Joe and I sharing life and love together. On the day we married, you, our community, sat witness. You read the words of Kenneth Rexroth on our program, words we chose because they made deep sense to us: "I have always known that at last I would take this road, but yesterday I did not know that it would be today." Between then and now, you have continued to bear witness, to our love, our grief, our hope, our family. Today, we come to you again, to say that at last we are taking a road that has always run along the horizon of our world.
On Tuesday, we took Isaiah in for a routine cardiology appointment. It was after two rounds of lab tests and an admission and complete work-up at DeVos Children's Hospital in Grand Rapids, that we learned Isaiah's kidneys are failing. The heart surgery last June was the fix for Isaiah's heart. We had hoped it would give us more time, but it appears so complicated a heart is not meant for fixing. His heart is failing, which leads to kidney failure as the kidneys have tried to make up for the heart's decline, and can no longer keep up.
The nurses and physicians at DeVos have been compassionate and straightforward. Isaiah is not a candidate for, nor would we chooose the path of, dialysis or transplantation. We are working to get Isaiah's body to it's best possible state in the next few days before we bring him home. We will then work with the doctors and the pediatric palliative/hospice care team to give him the most comfortable and wonderful life we can, while we can, be that two days or two months.
We do not take these steps lightly. Our words are slow, and weighed down with love and grief, our steps measured by Isaiah's suffering these past five years. Isaiah and Joey have no idea that this hospital visit is any different from the others. Isaiah plays with his trucks and Joey battles his superheroes. The knowledge of what is going to come slips away, eludes, in the face of what is now. And this is what we ask you to bear witness to: a husband and wife, two brothers, a family trying, some times failing, other times succeeding, to embrace this day, this sacred journey, in all it's mystery and pain and beauty.
posted by Jen @ 8:18 PM
29 Comments:
Dear, dear Jen - you and Joe have been an inspiration to us as we have walked that journey with you since the chilly day in May, 2000! Your generosity of sharing your joys, your sorrows, your hope and your dreams have honored us. We have seen such faith, courage, compassion, patience, and steadfastness that at times you have put us to shame with our lack in those areas in our lives that have been less than perfect. You have humbled us when you have shared your tears and you have inspired us when you shared the inevitable joys of your celebration of married love and the love of your boys. We are near during this difficult leg of the journey that you are embarking on right now. We want to appreciate each day given to all of you - laugh on good days - cry on bad days and be your strength whenever we are needed. Thank you, thank you for sharing with us - please call on us when we can share your burden or lighten your load. We love you Joe, Jen, Joey and Isaiah!! GGV
Jen and Joe,
It's hard to find words after reading your post. You have made the world such a beautiful place, not only for Joey and Isaiah, but for all of us who've been lucky enough to share time with you. That's the world I'll hold with me forever, full of creativity and laughter, trains and majestic kingdoms, love in all the seasons of your life.
I'll give you everything I've got to help you through the days ahead.
All my love,
Jon
I, like JOna m struggling to find words and my hands which usually fly over the key are spending more time hoovering over the backspace key...ironic I think. All I can think of is simple peace and that although it is probably far far away and seems so elusive, I know that there will be peace in all of this. That faith is born from your own incredible ability to prove to the rest of us that peace can be found when sought and that is often something that has to be struggled with to attain. And even in that I am not so sure I am saying it right - peace is not so much a place as a way to journey through life...may peace be with you. as always and forever - I love you...a
Jen, Joe, Joey and Isaiah, my heart goes out to you. I pray for strength and peace for all of you in the road you are facing. I love you guys and am here if you need anything.
Liz
patty griffin, in one of her beautiful lyrics, sings, "today my heart is big and sore/trying to push right through my skin..." and this is how i feel for you today. my heart is sore with the love and admiration i have for you all, and is sore with the heaviness of the journey.
we love you all...
kathy (for joel too)
i apologize, but i am not very good at forming my thoughts and emotions into words in such a situation. (another way of saying "i don't know what to say") so i will just say that i love you all, will continually pray for you and am here to support you in any way i can. i am truly sorry that you are having to go through this and i wish i could take the pain away...if only a drop.
love, ryan
My prayers and all my love are with your family
A Jesuit priest once told me that physical suffering can be a blessing. I remember him today. You are a blessing to us, your community. To see your love, your courage and your faith is nothing less than divine inspiration and a reminder of God's love.
Albert Yu Chang
We love you. We laugh and cry with you. We are here with you.
Sky, Diane, Ayva & Harrison
My deep love and prayers. Rosie
Dear Ones, Please know we are all supporting you in heart and spirit in the days ahead. We love you. Cecilia
Words do not convey the pain that is in my heart as I read this post. You are awesome people and Isaiah is blessed to have you as his mom and dad. We pray for peace for all of you.
Joe and Jen,
My prayers and love go out to the two of you. Your post is so beautiful and spiritual. I believe that love and laughter is very healing. Lucille Ball said "I'm not funny. What I am is brave." I see such bravery in you and your family.
Please know that our thoughts and prayers are with you and have been with you all along. Love, Julie
Jen and Joe -
Andi had just shared your blog with me not a week ago, and I was waiting for the right moment to sit and write. That seems aweful and silly to say now... but please know that you are in the thoughts and prayers of one more. My heart extends to both of you, Joey, and Isaiah.
- Rachel Grossman
We also struggle with the words and just want you to know we love you four tremendously and will be with you now and always.
Thandi, Mitch and Isaac
words escape me as i try to formulate in words what my heart is feeling. many thanks to you for sharing your life with all of us. we are here to share in the hard days that are sure to come. your words are beautiful. we love you all.
love cole
Dear ones,
Who could have known, as we went about our ordinary lives, that we would travel this path with you. A path so filled with love, compassion, faithfullnes, beauty,strength, joy and pain. You did not choose this path, but you did accept it as gift, challenge, teacher and "stone" as Jen so sweetly shared with us in her posted poem. As others have said, there are no words now, but only an outpouring of love, prayers and presence. We are here, even when one cannot find the words to post, even when you have no idea who we are, friends and strangers alike, holding you up to the healing power of the universe through that great web that connects us all. You are gift; you are witnesses. With a grateful heart, filled with pain, I send you peace and love.
Sandy R.
I am overcome with emotion with the news you have shared with us and with the strong feeling of love that comes from reading the many beautiful comments others have shared. Please know that we, too, are praying for you and thinking of you. I wish you peace, love and some laughter in the days to come. We are always with you. Love to you all, the Mitchell family.
Jen, you and your family are in our thoughts and hearts. Please let us know if there is anything we can do to help you.
Lori, Ron, Konur, Mali
jen -
thank you for your beautiful words...seems odd that during times like this you are able to "feed" so many of us with your words, your spirit, your honesty, your wisdom.
thinking and praying for the four of you...
deb vd
We love you very much and read your latest post with both sadness and awe. May the rest of Isaiah's life be as it has been--surrounded by his loving family, with the abiding support of friends, full of passion (trains!) and as much freedom as possible. We bear witness to your beautiful family as you carry on, and we are here for you. Love, Kathleen (and Will and Evelyn)
jen and joe i cannot find the right words. i sat down knowing just what to say. but as it turns out, all i have to say is i love all of you, and pray for you as i bear witness to compassion, strength, faith, and courage. may God bless you with a calmness only he can, and be with you always. jim
wishing I had profound words to offer your family at this time but am at a loss, please just know that you all are in our thoughts and prayers. God blesses us in many ways. May your family find comfort in the knowledge that He so trusted you the task of loving and comforting Isaiah in his life.
God Bless You.
I don't know what to say other then please know that I am praying for you all. Love, Anita
Though you don't know me, and we may never meet, you have my love, my prayers, and my support. I wish there was more I can say, more I could do, but alas, there is not.
If all I can do is to bear witness to the courage and love of your family, then I shall do so, and shed tears of both joy and sorrow for it.
<3
Ive read your posting so many times trying to put into words a response. Its difficult because my mind cant wrap around the emotions and thoughts you must have and yet you are so eloquent and amazing with your words. My entire family, as well as our church continues to pray for you today and every day. I love you guys so much and pray for peace, comfort, strength, and much, much more.
I was talking to my sister this morning, looking for a sense of context, a texture to give some traction. She's very wise, and she offered that these small delicate lives, the brevity embosses their work here, to teach us and then to move on. I felt that, I feel that; how glad I am to know Isaiah and Joey, to know what it's like to read a book about Thomas until I need water, and to fumble over word-signs when Isaiah patiently looks on. I won't go on listing my blessings, but they are many. An outsider, an on-looker, a presser on the glass, but it's true- many. alic
Please know your family are ever present in my thoughts and prayers. God bless you all and may peace be with you.
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