In Heidi's Words

(From the "I Am Recovery" project.) Here is her story in her own, unedited words:

Heidi:

 

It was very scary to me. It is okay to know life don't always go our way. Sometimes go dons't go our way. In some ways I have changed and it hard. When grow up I wnat to get married have children and have a job.

In someways I appreciate life more or less. I do and I don't because theri new things do but their our things mis. I'm grateful for my abilities and what I can do. I am frustrated my own limitations their are things I can't do that could do before my brain injury. I could run and fas now I can't.

---

 She never pretended it wasn't hard, but she tried to see the best in life. Always.

"I Am Recovery"

In August of 1996, Heidi was able to attend Camp Bruce McCoy with the help of my sister, Cindy. The campers, like Heidi, had experienced traumatic brain injury. Only Heidi was the most brain injured of this group, by far. The other campers did not have their lives back and it was traumatizing for them. The counselors headed up a project to help them work through some of the issues that haunted them.

Thus "I Am Recovery" was born.

The campers all painted on a mural then wrote about what they had painted. Many of the entries were heartrending. You could hear the anger and agony through many of the written words. For some reason, Heidi's were just a little different.

A description of one of the things Heidi painted:

A green frog jumps with happiness as it celebrates the simple joy of being alive.

"After recovering from surgery I was happy and jumping for joy and others were amazed that I recovered also. This is represented by the green frog jumping on the art piece. We are all still alive and living. Life is an amazing gift. God has given each of us our lives and no one can take it away from us". H.K.

The website that has the project posted: http://www.growingthroughit.org/galleryitems/wg/Workshop-33

Heidi: the Infant

Heidi: the Infant

       Tiny rosebud mouth half presses against the pillow.

      Pale, downy fringe brushes lightly against high cheekbones.

                  And all that is precious

                        rhythmically waltzes

                  in and out of

                        two china nostrils.

      The umbilical cord to my heart

      has never been cut, tied,

                        severed, or cauterized.

            It also dances with a life of its own

                        among the trees

                                 and the rocks

                        and under the sun.

      It whirls madly along

      keeping pace with the waltz

      folding to embrace all of life -

                  reaching, stretching, painfully throbbing.

Painfully the throbbing cord lays bare and exposed

to the lacerating winds of reality that yank against it -

            stretching its very endurance;

                        almost,

                     but not quite,

                                               pulling out the heart

                                                                 to which it is attached.

 Pat Kashtock

Christmas 1989 - Limitations and Wings

Christmas 1989

Dear Family and Friends:

          It is late at night and quite still in the house.  Mike and the kids have long since gone to bed.  The only sounds to be heard are the hum of the refrigerator and the soft whir of the furnace when it cuts on.  Outside, in silence, snow is falling.  Slowly it covers earth and tree.

          And silently this year has come and gone, as silent and deep as Siberian snows.  Sometimes, although one knows that God is always at hand, He can seem so far.

          In this year, we have had to come to terms with Heidi's limitations.  It was time again for Heidi's educational re-evaluation.  We had so hoped that the test scores would have come back up, showing that her mind was undergoing a slow healing.  Instead, we were faced with a further drop.  We have come to know far more intimately the nature and extent of the damage done than we could ever want to.

          Yet still, she is in remission, much to Dr. McCullough's amazement.  This after all is the child who was sent home to die 4 1/2 very long years ago. The child who was given a zero percent chance to live five years by one doctor, has made it.

          Recently in an article by Rabbi Kushner (When Bad Things Happen to Good People) he states, "I don't want to be the Grinch that stole Christmas, but if we want to credit God with these remarkable events (or "miracles") then we also have to blame Him for the tragedies."  This bothered me as terribly inaccurate but I couldn't pinpoint it exactly.  So, I asked Michael for his reaction.

          He leaned back into the corner of the couch.  His eyes looked off thoughtfully into the dark of the night.  I would like to share with you what he then said.

          "Tragedies are a part of the normal fabric of life, our day to day existence.  Miracles are the reminder that what is normal is not permanent.  Tragedies are normal to a world that is not in harmony with God." 

So, is God then the cause of tragedy in the same way that he is the cause of miracles? 

          "No", he said, "I think not.  Although He may use the tragedy once it happens to accomplish His will, I do not believe that He is behind every tragedy in the same way that He is behind every miracle."

     And so, we continue to hope and pray for a miracle.

     Certainly many prayers have helped Justin.  He is actually coping with school this year, largely on his own.  We are very proud of him and deeply thankful to the Lord for His help. 

     Galen Christopher is a mini wild man: much like his big sister used to be!

          As for Heidi: daily we struggle to help her regain that which she has lost.

          And deep down I really believe that someday she will be well.  I believe this with my whole being - it is not something I try to believe or drum up.  It just is.

          I keep seeing in my mind her return to normalcy a surely as I "saw" that she would walk again.  After the radiation when the tumor had enlarged so horribly, she became completely unable to walk, even with assistance.  For seven months she had to be carried everywhere.  Her prognosis was grim at that point.  She seemed to be dying.  Yet, in my mind I "saw" her just one day, out of the blue get up and walk out into the living room completely on her own, without warning.

          Things had not improved at all.  Then, one day, early in January, I looked up.  And there Heidi stood in her pajamas holding onto the wall of the hallway at the end of the living room.  "Hi Mom," she said, smiling.

          Yes, I truly see Heidi as well someday, and either this the most distorted of pipe dreams or assurance from God, Himself.  I choose to act as if it were the latter.

          And so now we celebrate the miracle of Christ's birth of God come to dwell among man.

     Even in the darkness and cold of our own winter, God comes to us anew with His light and life.

                     "Light and life to all He brings

                      Risen with healing in His wings

                      Mild He lays His glory by

                      Born that man no more may die."

          In the meantime, as we await His coming, the snow continues to fall and blanket the earth.  Quietly, she awaits the healing of the summer sun. 

May your lives and ours find the warmth of His healing love in the year to come.

Love, Patty, Michael, Heidi, Justin and Galen Christopher

Christmas 1986 - Trouble, Tears, Triumph, and Change

December 1986

Dear Family and Friends:

    This has been a year of change for us:  a year of trouble and tears and some measure of triumph.  The triumph is that we have somehow survived it, more or less intact, and with God's grace we will continue to survive.  We thank the many of you who have upheld us with your prayers, for we have felt those prayers holding us up when we would have collapsed from overwork and anxiety.

     In February, Michael left his job at the Food and Drug Administration for a freshly challenging job as the Food Packaging Project Coordinator at the National Food Processors Association (NFPA).  I tried to pick up the pieces of my graduate schooling in the spring but between a new pregnancy, our house going on the market and another medical emergency with Heidi, I found that I was unable to complete the course.  Heidi fell two steps off a front porch and had to be air-lifted out of the neighborhood to Children's Hospital with a "bleed" in her brain.

   Once again, this child of great courage found herself in a wheel chair, confused and disabled.  Once again she has fought her way back.  In mid-November she was readmitted to the hospital for corrective surgery on the "bleed" after her condition suddenly deteriorated.  She appeared to have recovered from the surgery and came home the day before Thanksgiving only to be readmitted on (you guessed it) Thanksgiving day with left sided paralysis.  This setback turned out to be temporary and she is now recovering nicely and is back to a limited amount of school.

     The school itself is a major triumph.  After being out for a year and a half, Heidi is now able to go to a special class where she is physically protected and helped with the learning and physical disabilities incurred as a result of the treatments for her cancer.  Her teacher is a veritable miracle worker and Heidi is so very happy to be in the classroom again.

     Our summer was taken up with getting Heidi into a placement at school (you wouldn't believe the amount of testing and meetings, interviews and sheer volume of time that it took!).  We were very fortunate to have some wonderful people in the school system and Children's Hospital working in Heidi's best interest.  The rest of the summer disappeared into complications with my pregnancy and moving.  Fortunately, now (after a few real scares!) it looks like we will be delivering a new, (hopefully) healthy baby sometime around February 15th.  We've moved into a pleasant house by a small patch of woods that has provided endless visual enjoyment.  We've found that we have a lovely group of neighbors who really pulled for us during Heidi's two weeks at the hospital.       

     All of this has been very hard on Justin, who is having some severe school difficulties as a result.  Oh, he has kept his engaging, (if a bit bizarre) personality, but your prayers for him and for our wisdom in how to help him are greatly needed.

    So where does this leave us?  Oh, not the normal changes and stress - thank God for those! - but the situation with Heidi.  We've seen her lose so much, so very much, and struggle so hard for each small gain, only to be slapped down again.  Medically, her prognosis is poor.  We live with that daily, and yet continue to hope. 

And there is the clincher:  how does one continue to trust God?... the God who has the power to stop ill, yet doesn't.  No longer is this a theological question for us, a doctrine to expound upon one way or another.  For we have been halted screeching-ly before the magnitude of its reality and grapple with it daily.  How can one continue to pray for God's protection when He didn't protect Heidi?

     And the answer that comes to me through this long tunnel of loneliness sounds with bell clarity...        

"Have I not said that in this life you will have tribulation?      

But be of good cheer; for I have overcome the world."

     And somehow He is there.  Though everything else appears burnt to ashes, He is still there.

     And He came, in the form of a babe.  And He was not late.  And He faced His own tribulations in order to overcome the world for us, so that somehow we might survive.  And He continues to stand with us and to lend us His strength and give us His peace.  Truly; He is the Prince of Peace come to abide with us for all eternity.

     And so our prayer for you this year is that He may reign in each of your hearts, bringing the joy that comes from within no matter what the circumstances are, both during this celebration of His birth and in the year to come.

With love and blessings,        

Patty, Michael, Heidi and Justin

Christmas 1987 - Healing from the Zombie Zone

Christmas 1987

Dear Family and Friends:

Thank you for your prayers and loving support in this past year. I cannot tell you how much it has meant to us and how your prayers have held us up.

In many ways this has been a year of blessing for us – a year of healing and a year of hope. A drink of water in the parching drought of the desert. The blessings have been those of everyday; sunlight and birds, gray skies and snow, falling leaves and new birth.

This was the first summer in three years that we could enjoy with our children. Thank God, Heidi was well enough. We swam and walked and lounged like lizards in the warm sun. We camped as a family in beautiful Lancaster Co. and found some degree of healing among the Amish, a healing that we do not quite understand; a kind of acceptance perhaps.

How nice it has been to be a family again, no longer fragmented from one another in the zombie's twilight zone of hospital wards and medical crises. And should life turn again in its inexplicable cycles, we have had at least, this time of respite and renewal.

At the last writing, we were anticipating the mid February birth of a nice healthy baby, never really thinking that there would be any serious problem. On January 15, one month early, Galen Christopher Kashtock was born by Cesarean section weighing 5 lb. 14 oz. I stand in awe when I look at this healthy bundle of pure mischief and think of how closely we brushed tragedy.

Apparently, the cord was on top of the baby's head where he pressed. The placenta previa detected during an early sonogram had been forgotten. My water broke, a month early. This posed a risk of infection, so the doc decided to induce labor. Thankfully, this had to be done at the hospital, and thankfully they insisted on strapping me with that bulky fetal monitor that made each contraction feel like someone’s fist was being shoved through my back.

I had not wanted either the hospital in the early stages of labor, or the fetal monitor. Thank God He sometimes gives us the things we do not think we want. Because of the monitor, we found out in the first few contractions that Galen could not tolerate a normal labor. The contractions nearly caused his heart to stop.

I still shudder when I think of the consequences if labor had started at home. Again, thank you for your prayers.

After visiting him in the Neonatal ICU, a fellow grad student and hospital Chaplin said, "This may sound strange, but I believe that God will use this child as a healing for your family."

Little did she know as we hadn't named him yet, that basically the name we were considering was Galen. We did not know it at the time but Galen of the second century is considered the father of medicine and so his name came to mean any doctor, or "one who heals." And in his own delightful babyish way he has.

He's given Heidi someone to love and fuss over and Justin someone to make laugh and protect. He has shifted our focus from Heidi's illness to the joy of new life.

Heidi continues to regain more of her personality and some of her abilities although the confusion remains. We decided to retain Justin in first grade although he was reading with comprehension on nearly the fourth grade level. He is no longer the smallest and youngest child in his class and is much happier in school and more relaxed. The horrible night terrors concerning school have abated.

When we married, we saw ourselves as having 2 or 3 normal children who would grow up, go to college, get married and have children of their own. We never anticipated any major problems. Life isn't always what we expect, is it?

Yet God in His mercy can touch us through life's uncertainties. He reaches down into the ashes of our despair and loves us to Himself.

On the nights that I screamed my rage and hate at Him, He held me until my fury turned to sobs.

When my wings were too burnt by the fires of hell to fly, He bound them and bid me rest in His hands.

And now when I look at Heidi, I see two things: lost potential and potential gained. Heidi has long spoken of becoming a doctor someday. There was a time when she possessed the compassion and intelligence and love for science to have become a good doctor.

The compassion is still there.

And I think how we parents hurt for our children and focus on what has been lost. But perhaps God has a place in this world for Heidi, far different than what we had imagined.

As we watch her faith and closeness to God continue to grow we have to wonder if she will bring a different kind of healing to this world. There is something to be learned from the light of God that shines out from our childrens' eyes.

As I pondered all of this I came across a passage from two psychologists concerning six-year-olds that really grabbed my attention. "Belief in God in most is not yet wavering... prayers are still important, though the child may still expect them to be answered."

And I wonder, perhaps we adults too often let the cares of the world quench the childlike light of faith from our eyes.

Perhaps we need again to remember that Jesus said: "Unless you become as a child, you will be unable to see the kingdom of heaven."

And He came as a child:

"For unto us is born this day ...

To restore us:

"He leads me by the still waters, He restores my soul."

And give us peace:

"And the angel of the Lord came upon them and the glory of the Lord shone round about them and they were terrified.

"But the angel said to them, 'Do not be afraid. I bring you good tidings of great joy which shall be for all people. For unto you is born this day in the city of David a Savior who is Christ the Lord. And this will be a sign to you; You will find the babe wrapped in swaddling clothes and lying in a manger.' And suddenly there was with the angels a multitude of the heavenly host praising God and saying, 'Glory to God in the highest! And on earth, peace, good will toward men.'"

Merry Christmas! And may your blessings for the year be as many as the hosts of heaven.

With love and prayers,

Patty, Michael, Heidi, Justin and Galen

Christmas 1988 - Death and Life

Christmas 1988

Dear Family and Friends:

Here by my window, in our house by the woods, the night begins to come, as all nights must come. The sun lies low upon the horizon. Languorously, she stretches out upon her golden couch of violet hues. Another day drifts gently towards its conclusion.

Yet not all conclusions are as gentle as this day's end.

This is the year that my father died. I cannot begin to express the depths of loneliness this brings. I wish I could tell him this.

I wish he could know. Somehow I do not think that he valued himself enough to know what a gaping hole he had filled in our lives. I am afraid that he did not know how much he would he missed.

All of this shouldn't have surprised me so, for in each life is contained the seed of death, just as in Christmas is the Cross contained with all of its gory suffering and death. Again, within Good Friday is contained the glorious flower of Easter; the knowledge that the sun will rise again. And so comes the knowing that in dying we cross beyond the "Shadow-Lands".

"'There was a real accident' said Aslan softly. ‘Your father and mother and all of you are – as you used to call it, in the Shadow-Lands – dead. The term is over: the holidays have begun. The dream is ended: this is the morning.’

... And for us this is the end of all the stories, and we can truly say that they all lived happily ever after. But for them it was only the beginning of the real story. ... now at last they were beginning Chapter One of the Great Story, which no one on earth has read: which goes on for ever: in which every chapter is better than the one before.” (C.S. Lewis: The Last Battle)

And we know that if we die in Him we shall live again. This is the promise of Christmas: God came to dwell among men, to share in our suffering. Out of His great love, He came so that He could know us to our very core and die as a direct result of our cursed condition. And then, in a burst of glory, He would overcome that curse and once again dwell among men. Only this time it would be from within us - if only we should ask.

Still, our lives do continue to go along in all of their complexities. Sometimes they are simple; sometimes they seem hopelessly entangled.

Justin: who can fathom his mind? He has so much to offer but has so many stumbling blocks. He is doing much better this year largely due to a year's growth and to one very stubborn, very dedicated 2nd grade teacher.

Galen has lived up to his name (of one who heals) merely by his babyish unfolding and becoming. He is a little packet of love with two pattering feet seeking new mischief each day's moment.

Heidi is still determined to be a doctor. That looks completely impossible. But I don't know - that stubborn set to her jaw is back. She has overcome a lot this year. With herself and the Lord as a team, who knows?

who knows ...

I thought my Dad's health was possible. But God in His infinite wisdom saw differently. It is hard to argue with omniscience. I know that now my Dad is safe; now he hurts no more. At last he has all the love he needs; and warmth and peace, and blessing.

It is just that I miss him and wish he knew.

I miss my father.

I miss the daughter that used to be.

And yet… in each life there are a thousand such twilights; a thousand dark nights.

But we also know that the morning comes again.

And once more the sun will shine.

But for now the sun lies low upon the horizon. Gold and violet; orange and rose swirl in dance around her. Softly she beckons the oncoming night so that she can give the earth its well needed rest.

And so in the warmth of her fading light, we bid you the joy and peace of this Christmas season, and all the year to come.

With love,

Patty, Michael, Heidi, Justin, and Galen Christopher