I hired a housekeeper and a cook for many years, because mothering used up all my time. During Travis' last years, my best friend Arloa, also a single mother of adopted disabled children moved in as well. Arloa was an expert in "Travis skills"! She and her two children moved in with us into the north wing of our eighteen bedroom house, to help with the children when I was busy with Travis. But most importantly, she gave me small breaks from Travis so I could go to the store, take a shower, go to a restaurant to visit my mother, spend individual times with each child, (though never enough of those, I'm afraid) and get the mail. She was a blessing beyond description, and I will thank God for her always. Arloa is a friend like no other. She was a marvelous help to our family.

  All of the children loved Travis, each in their own special way. Some more intimately, some from more of a distance. My son Kyle, and quickly growing up daughter Skyla were the most interested in helping, and learned to suction, and give breathing treatments. Nearly everyone played with him. To hold his soft, warm little hands which couldn't hold back, tickle him, wind up music boxes for him, and do all kinds of funny things to make him laugh was their joy. My daughter Noelle took pictures, and made tape recordings of his tiny sounds. We were all so proud of the helpless children. And I know God will reward the others for their love.

  There was just such a unique relationship between my son and me. His dark chocolate mirrors of eyes trusted me, and melted my heart! I would look into his eyes time after time, his panic turning into peace as I suctioned the fluid from his throat, and he could breathe, and smiling into those deep shining eyes that looked as though they could see right through me.

  He KNEW I would be there for him when terror filled him because he could not breathe. And fierce mother lion instincts rose up in me that I never knew I had. I would be there for him as long as I could help him stay on this earth.

  But when he was four, his heart began to fluctuate - he would get bradychardia, (when his heart rate would slow down to dangerous levels) and he began to have severe apnea spells, where he would forget to breathe for far too long. I was determined to have a monitor. So I paid $250.00 a month for him to wear a heart monitor, because the state would not pay for it.

  The state abruptly explained to me - "the state does not pay for heart monitors for children who don't have brains".

  They even had the audacity to tell me I was lucky there was one available to rent, because babies who could "really benefit" from them were using almost all of them.

  For nearly a year, we lived with that monitor screaming day and night, warning that his heart rate had dropped to dangerous levels. The hospital said that his brain stem was failing, and the monitor would do no good at all, except to tell us the moment of his death. But I couldn't accept that. When his heart rate went down, we would stimulate him, roll him back and forth, pat him, talk to him, and it would stabilize again. The monitor also kept track of his apnea spells, when he would forget to breathe for too long, which also would resolve if I jumped to him, and rolled him around, talking to him. I will always remain convinced that he lived through his fourth year because of that monitor.

  I have pictures of Travis at home in our shared bedroom, where I tended to him day and night, with his heart monitor and his oxygen, and the ever-present suction machine, when he was four.

  One day when he was still four, we were at Dr. Chapman's office, (his neurologist) at a routine appointment, and his Doctor asked me to carry him into the office bathroom! He called his colleague - also a neurosurgeon, and brought a flashlight. He asked me to sit on on the toilet seat with Travis in my lap, in this tiny little bathroom, and he turned off the light. It was pitch dark. I thought this was most peculiar until he put the flashlight up against my sweet little boy's head, and turned it on.

  Travis' entire skull lit up like a dull orange lamp. "Look at that!" His neurologist (also a neurosurgeon) said to his colleague - "You'll never see anything like that again in a child this old! Children with no brain never live to be four years old. They usually die in infancy. It's only because of this mother's excellent care of this child, that he is alive today." I was enormously touched, and amazed, for this was a doctor of few words; and compassion was always an unexpected thing that brought tears to my eyes.

  It was then I understood just what a miracle it was, that my darling baby not only lived, but could respond to us at all! A flashlight does not light up a child's head, if there is brain tissue inside. Only if there is simply cerebral spinal fluid filling the skull.

  I took my son home, and marveled even more at his life. He lived nearly five years after that! And the doctor's kind words stayed in my heart as comfort many, many times.

  I understood by now that Travis was not going to live to be a man. I had several friends who also adopted children who were medically fragile, and who, in time, had died. I had been to more children's funerals than I ever wanted to. But our friends' love for their children and their strength, and faith in God, every one, was always a tremendous inspiration to us. I knew we could survive. I just couldn't imagine how, and tried not to think about it. I hoped it would be many years in the future. Knowing that our friends were always there for us, and they, at least understood, and believed in what we were doing, was a great comfort. They were very special friends, and still are.

  Travis spent many times in the ICU, on a ventilator. So many, that I lost count. The episodes increased slowly, but steadily.

  Then came a time when he had a spell where he acted like he had had a stroke. At the hospital, they did many tests on my little boy who suddenly lay silent and staring day and night, and saw nothing. No more smiles. No more responses. One of the nurses came in, and began to cry. "I'm so sorry", she said, "but your little boy is dying". And she hurried out again. They felt that his brain stem was shutting down entirely. They carefully explained to me that children like my son eventually "outgrow" their brain stems. As their bodies grow, their brain stem cannot keep up with the increased demands of all the basic instinctive functions we all take for granted every moment of our lives.

  He was not holding his body temperature very well. He was having more apnea spells, where he would forget to breathe. They showed me to keep checking his temp., and warming and cooling him, whichever he needed. After all the tests, as he was in no distress, they sent him home. They told me I could bring him in to the E.R. any time I felt he was really going, or call 911. And they told me what to watch for. Mottled skin, ragged, uneven breathing, called Cheyne Stokes, coma.

  But as time crept on, I began to believe that a miracle had happened. One day, as I tended to him, singing to him as I always did, he turned his eyes and looked at me! Another day as he looked at me, one corner of his mouth turned up in a half smile. His body temperature stabilized, and he began to get better. Not only did he get better, and begin responding again, his apnea went away, his heart rate stabalized, so at last he no longer needed the monitor! Slowly but surely his smiles and sparkles came back!

  Travis could not roll over, or use his hands, or move in any purposeful way. Therefore, he could not use the regular kind of bathing equipment available for disabled children. He could not, for instance, be maintained in any kind of regular bath chair. And he grew too heavy to hoist off the bottom of the bathtub.

  So I got an idea, and found and hired an inventive carpenter to install a slightly smaller bathtub - from a mobile home - directly above our back bathroom tub, at my waist height, and so I could bathe Travis without leaning over. He loved those baths, which I always gave him while playing lively music from Mozart. That tub could be folded up against the wall, but what everyone who was small enough did, was just use it for bunk-tubs. When Travis was older, I had younger children. With two in the upper tub and two in the lower tub, I could watch the four youngest bathe all at once, also to Mozart. Travis would be parked right outside the open bathroom door so I could listen for him. It turned out to be a very handy tub for many years.

  Yet, even during his marvelous recovery through ages five and six, as the years rolled along, slowly, slowly, Travis became sicker, as his lungs continued to deteriorate. His backward arching could not be controlled. He could not control his own swallowing, and sucked his own saliva into his lungs more and more frequently.

  He would suddenly gasp and begin to cry in the night, having breathed in droplets of saliva in his sleep, though always propped on his side, with his upper body elevated. I would spring from bed, and run to him. I could get to him before he became fully awake, and fully frightened, and help him almost immediately. That made the biggest difference. If he didn't cry much, he didn't produce more saliva, and choke even worse. I could suction him quickly, and it would be over.

  Many nights after I suctioned him, as he drifted back to sleep, I would stand beside his crib, with my hands on his little chest, which was becoming more and more compressed with his rigid little arms pushing in on it, compromising his lung capacity even more, praying for God to help him be better in the morning. Praying that it had been enough. That his lungs were clear. Sometimes I would stumble back to bed, and cry in sheer exhaustion.

  Yet many times he was hospitalized, and more and more frequently put on a respirator, to save his life because of aspirate pneumonias.

  Then came the years when he could never be allowed to cry at all, even for a moment, because he would immediately begin to produce all kinds of mucous, and gurgle and choke. Then he could never be left alone. Any moment he might suddenly suck in droplets into his lungs, and would immediately be in distress, both physical, and also in terror. I could not take a shower, or get the mail, without someone in the room who knew precisely how to suction HIM. Even in the Intensive Care Unit, I had to teach every nurse how to suction him, as he was so unique, and it had to be done just so, or it didn't work, and he'd be in trouble very quickly. I knew our time had become even more precious, and kept him near me, or someone who knew exactly how to suction him ALL the time.

  By this time, even the very youngest children would set up a holler for me every time he began to make a gurgle that they knew was going to be a choke and a cry in a few seconds - "mommy! Travie needs you!" became a call I heard frequently throughout my days. And that was a real help! I was so proud of them, and always told them how important they were, in helping their little (big) brother! Their love for him was always very big sisterly, and big brotherly, even though they were younger. And they all knew they were important to him, and to mommy. They still remember feeling so important for Travis.

  Travis was so vibrant when he was well! So full of joy and exuberance! He developed a real belly laugh, and he knew and loved us all.

  Even while I "clapped him" - a way the respiratory therapists at the children's hospital taught me to loosen secretions in each lobe of his lungs, he didn't mind. When he was a baby, they taught me to use my cupped hand. Later, I was given a small round rubber "clapper". Still later, a machine run by electricity. I got so accustomed to the routine, I could almost do it in my sleep. Fifty claps, very firmly, over each lobe, of each lung, front, and then back, every day. As he grew older, it had to be more often. This was necessary, because he couldn't cough productively. After years, the state bought me a very strong vibrator, and then I could just hold it over each lobe for the prescribed length of time. That certainly saved my wrists.

  But he was such a good sport. During the years of clapping, his little body bounced on my lap or on his bed, as my cupped hand carefully treated each exact place, with the round rubber clapper. But he didn't mind at all. Sometimes he would chuckle. But he never cried while I did all that work on him! He always enjoyed being bounced up and down!

  And even between increasingly severe illnesses, he could still laugh. Or, should I say, he could laugh again! We have pictures of him, laughing, even after the horrifying year when he was four, and they all told us he was dying. God had other plans. He gave us nearly five more years!

   His eyes still sparkled at me, though, and he still giggled at us! He knew those of us who spent the most time with him, and he showed us clearly, by his smiles and gurgles, and sparkling, beautiful happy eyes! He was such a beautiful little boy. He loved us, and we loved him. He needed me, he trusted me. What more could a mother ask? I gave him those years with great love.

   When he would choke, and begin to scream in terror, and saw me running across the room for the suction machine, his wide panicking huge dark eyes would calm down before I even suctioned him, even while he gasped for air. He was certain I was going to fix him. He knew he'd be able to breathe again in a minute. That trust was a treasure to me beyond any power to describe it. Here was a little boy who would ordinarily have spent his life in an institution. If he had not had one steady person whose face appeared every time he was gasping for air, he would not have been able to learn that trust. Even without a brain, he was aware enough to know me. Thus, he was able to receive much comfort in a life that might otherwise have been completely bleak and empty. Fourteen years before Travis was ever thought of, I saw firsthand the life he might have had. Before I became a foster mother of disabled babies, I worked in a state institution, working my way down long rows of cribs, changing the diapers of children just like my son. Children who never received a mother's loving care. Children without a smile, and without a hope. How grateful I am for the caseworker who saw him as a baby who needed a mother, instead of simply institutionalizing him!

   Countless times, Travis required suctioning very often, hour upon hour as the night wore on. I can still hear the noise of that machine in my mind. When he was especially congested, the decision was always hanging over my head, will he need to go to the hospital, or will he rally 'round again? I suctioned the mucus from his lungs, "clapped" his lungs, gave him oxygen, and stood over his bed. I put my hands on him, and prayed, asking God for guidance. And, whether he was in the hospital or home, I would tell God how much I appreciated another day with my little one. "Thank You for this little son, Father," I would tell God, "I thank You and praise You for this day that You gave him. If it's Your will, may he stay with me another day. Please help him to breathe. But this is Your baby, Father. I am loving him for You. I will accept whatever You allow to happen. Thy will be done." And many mornings for years began with my rejoicing. "Oh, thank You, Father, that Travis is still here with me!" At times I look back, and see that in a way, Travis spent several years dying. Perhaps it could be said that he was dying from the time he was born. But then, we all are. In fact, I know that, vastly more importantly, my little Travis spent those years living. His life was full, rich, complete, and full of love. His life was bright like a short and sunny winter day, which disappears when the sun goes behind the mountains, quite suddenly, leaving a happy memory.

  Travis was a child who knew joy! Oh, he knew joy! And he taught us all a special love that we would never have known without him.

  Travis was a wonderful child - a peaceful, happy little boy. Such dimples he had! Such a whole-body happiness, though he could not move that body on purpose at all from the neck down. It was clear when he was really excited, as his entire body would quiver with joy while he laughed with his sparkling eyes!

  I loved him in a very special way. He was sick by far the longest of any of my fragile children. He had the deepest and most intense medical needs, and his deep need for me, created a deep need in me for him.

  Travis lived almost nine years. He left this world very quietly, and without pain, though not on any pain medicine. My hands were holding his, and stroking his brow, my voice was telling him how much he was loved, by God, as well as by us. His familiar soft tapes of nursery hymns were playing. His peaceful and painless earthly death was a gift from God. His little body simply wore out. But his soul was always whole, and it is safe with God. The impact Travis made on my life will never end. The blessing continues.

  But I miss him. How I miss him. At this writing, he's been gone from us now for eleven years. I still have vivid dreams in which he is alive, and sometimes running at my side, talking to me, and we're both laughing. I wake, find him gone again, and tears fall anew.

the gift was enough
one last Christmas with my son
his illness so great
yet a precious tender day
his hands full of bright paper


© 1993 Rosemary J. Gwaltney


The Wound is Fierce Today

As Christmas once again draws near,
the wound is fierce today;
the cavern in my heart cries out
where once my baby lay.

He lived eight years of infancy,
with wide-eyed trusting gaze;
he gifted me with smiles to keep,
and sweetly quiet ways.

He could not speak a single word,
this frail son of mine;
but oh how rare his innocence,
how rich our precious time.

Our treasured years are over now;
the grief is hard to bear.
I needed peace in his dear face ...
and he - my loving care.

In Heaven we will meet again
and heÍll be whole and well;
for all eternity weÍll know
more joy than tongue can tell.

But little one, my darling son,
if only you could see
the lights you loved shine bright again
around our Christmas tree.

© 2001 Rosemary J. Gwaltney