February 23rd: The road and the swamp

Things are frightening right now.

From a mother’s perspective, there are two ways forward through this cancer journey: the road, and the swamp.  The road is a human construction.  It has a certain linear rhyme and reason.  It is made up of small stones, each stone a specific decision, fact, place, the face of a doctor and his credentials, a medical test, or a statistic representing the level of potassium in the blood.  The road is made up of things we can understand and see, and it leads us -we can only assume- somewhere.  I have tried to choose the road as my way forward.  I have tried to focus on the stones beneath my feet in order to better understand the nature of the journey.

There is the road, and all around it there is the swamp.  The swamp is the deep, swelling questions about God, fairness, fate, and more than anything, the free-fall of helplessness and the fear of loss.

I spent the night in the swamp tonight as Jack struggled to breathe, needing suctioning from the nurses at intervals which no longer made any sense.  His breathing rate increased despite adequate oxygenation.  He seemed to struggle to get the air in, yet at times wanted to play with his rattle.  His pressure spiked and dropped while he was sleeping- no obvious cause anywhere in sight.  A less-than-empathetic nurse (the only one we’ve had so far, thank God) simply waved my frantic questions about what was wrong with Jack’s lungs away, saying, “it’s neurological”.  I don’t think she realized that her carelessness about this was all it took to throw me off of the road into a night of terror.

Jack seems to have stabilized after midnight, and is now resting comfortably with his stats finally back in acceptable ranges.  The doctors’ plan seems stretched dangerously thin.  Right now, the mainstay of it is “make it to Monday” which is when the pathology results will hopefully be in.  There’s even been talk of starting chemo up right away.

I’m not sure if I have found the road again or if I am groping towards it.  But there is a certain kind of shelter, whether on the road or lost in the mire of the swamp, and that is thankfulness.  We are so thankful for our son Jack.  He and Sam are the joys of our life, and somehow these long nights don’t diminish that.

jackgrin

Another source of comfort is all of you.  We have learned of a convent in Belgium and of a Buddhist monastery which are praying for Jack, as well as countless prayer groups, friends, and family.  Thank you all for sharing this journey with us and for lending some part of your spirit to Bounce Back Jack.  Thank you all for holding up a light that can help illuminate the road for those who love him.

UPDATE;  3:43p.m– Jack has remained stable throughout the day.  neurosurgery team reports that yesterday’s MRI showed Jack’s ventricles have shrunk just a bit, indicating that the cerebral-spinal fluids are stabilizing.  His drain started to seep a bit, which was concerning, but the team here isn’t too worried about it.  Jack is pretty irritable, but mostly stable.  Breathing remains a major issue.

I wanted to post this picture that was sent to me by my cousin’s girlfriend, Lidia, a wonderful member of our family:

20140222_213901This brought such a smile to our faces on a very difficult day.Jack is so lucky to have all of you.  Thanks so much for being on his team!

 

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11 thoughts on “February 23rd: The road and the swamp

  1. rudisell

    Dear,dear Meg,

    The stones may form divergent paths or random circles, but they are always a more desirable choice than the swamp. Try very hard to stay with the stones.

    Carol

  2. Carlene

    Meg, I hardly know what to say to you and John. But I do send many prayers to you, along with many friends of mine that have you in their prayers also. Stay strong, and continue to believe that Jack WILL bounce back! Best to you all, Carlene

  3. Michelle Wooding

    Just wanted you to know that the Ward Street Church of Christ in Wallingford prayed for Jack and the family this morning and will continue in prayer for all of you. My heart breaks for the pain you all are going through. Remember miracles happen all the time. Stay strong and God Bless!
    xxxxxooooo

  4. Carol Sterner

    I don’t know you or your family, however, I will continue to pray for all of you. My church, Love of Christ and all of my prayer warriors are also praying for you. At difficult times like these, we need to remember it is in God’s hands and to lift it up to him no matter how difficult it may be. James 5.13-15. Blessings to all of you.

  5. Denise Carroll

    Hey Meg,

    Remember that you are a founding member (and one of only two ever!) of the Swamp Rats! No matter how scary or horrible the swamp is I know you will find your way through it with the incredible strength you’ve always had!! Everyone I know is praying for Jack and all of you. Love you all!!

  6. Meg,
    Someone once told me that everything is the same at night except the color of the air. Yet we still fear the darkness. I hope you can find a source of light, a spark, a glow a shimmer no matter how dim, that will bring you comfort during these trying times. Marie and I are pulling for all of you and send our love and support. I vow to put a light in the front window that will remain there as a sign a solidarity, love and hope .

  7. Oh Meg, my heart is breaking for all of you. The swamp always seems to be darker, scarier and just muckier at night, doesn’t it? And sickness always seems to get worse in the middle of the night. I don’t know why that is, but it is a cruel thing when things are already bad enough during the daylight. I remember spending some long, painful nights during my own cancer journey and my John standing by feeling helpless. I think that roller coaster of emotions – the feelings of helplessness, fear, hope, anger of those who stand by is just as awful as the cancer. I wish you and your John strength and courage for the journey. If I could wrap these things up and bring them to you I would. I can offer you my support both physically and spiritually. If you do want me to come and sit with you (or anything else), do not hesitate to reach out. I always appreciated your smile and kind support on those days I managed to make it in to work while I was having chemo. I picture you sitting at the Ref desk smiling at me. Now I send it back to you a million times over and so, so so wish there was more I could do.
    You all take care of each other. Team Morris has your back, Jack. 😉

    Marie

  8. John - Jack's dad

    Thanks for the support everyone. Awesome nurse Chuck is on today so we are all a little more comfortable. The plan today is let jack rest as much as possible and suction when needed. Neurosurgery will decide about removing his drain, but mostly they want him to rest.

  9. Linda Pzedpelski

    Praying for you all from Ohio, at the moment, and tomorrow from PA. Thank you for sharing this journey . You are in our thoughts and prayers as we travel through our days.

  10. John Oxford

    During my journey in 2008, I learned that weekend hospital staff are not quite as “gifted” as the day to day week to week staff. I know the weekenders were frustrating to my family. Stay the course. Jack’s condition is not about God, God does not work that way. This is about biology. Do not sacrifice your soul as difficult as the situation is. We humans like to affix blame, there is no blame there is no judging. I sure do not know what the future path will be for you guys but we continue to pray. The swamps of this world have been traversed many many times. I have only met you once when Andrew brought you guys to Oswego, but I do think about all of you every day.

  11. Megan Oakleaf

    Meg,

    There is nothing so bad as a bad nurse. Unless it’s a doctor with a bad bedside manner, or either of them in the dark of night. I so hope that the morning nurses or doctors on rounds can give you some real answers. Hang in there.

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