Just Shy of Two Years

The years before

No portion of my life is more significant and less documented than the years from 1994 to 1996. More new experiences were crowded into this minuscule line segment of my personal timeline than during any other period of my almost seventy years…so far. Other life-changing events have occurred, each at their expected times and in their expected orders, and most of them were positive, even celebratory. Graduation, marriage, pregnancy and childbirth, jobs, promotions, new home, moving…beautiful and rather predictable. We lived the suburban dream because we had worked hard and done everything right…or so we thought. We saw the trajectory of our family’s future as clearly as if it had already occurred.

In 1989, my husband accepted a job transfer from Colorado to Ohio. We had been homeschooling our four children for five years, and we were grabbing this opportunity to change our lifestyle from our familiar suburban experience to one with a more rural flavor. At the time we could not have specified the extent of the shift, nor were David and I necessarily in agreement about said extent, but we felt a change in the wind and wanted something different for our family. After renting a small house in the charming town of Chagrin Falls for about six months, utilizing a couple of very different realtors, visiting scores of houses situated on two to five acres, and scouring our chosen Geauga County, we discovered the woefully-in-need-of-repair farmhouse that would become our new home, sitting on a whopping 31 acres of fields and forest, in semi-rural Hambden.

The story of the transformation of our property over the ensuing 35 years is for another time and another post. This story is about another shift and another series of decisions that would make unique and profound impacts on each of us.

1994 happens

In 1994, two important events occurred. First, with very little warning, David’s career as a computer programmer came to an abrupt halt; Digital Equipment Corporation (DEC) had begun down-sizing earlier, and, like the angel of death, that down-sizing crossed our threshold and threw our family into a tailspin. After 14 years of a satisfying career, David was 42 years old and unemployed. There was a severance package that we thought would tide us over until a new job surfaced, but to be absolutely truthful, I was as scared about the future as I had ever been before.

The second event that occurred that year was the birth of a baby boy.

Sometime in 1993 we had become aware of NewStart. NewStart was a private adoption agency that focused on finding forever homes for children who were “hard to place”…children who had one or more characteristics that placed them in the category of “special needs” or atypical. We would later learn that NewStart often placed very typical, very “easy to place” infants, but that is the norm for adoption agencies; NewStart never turned away a newborn…never. David and I had learned of the agency through several of our homeschooling acquaintances. Those families, for the most part, were in the NewStart network of foster care. Those families would, from time to time, show up at gatherings with a new tiny bundle in tow. The families would love and nurture the infants temporarily until the forever home was all squared away. At the appointed time the babies moved on to their waiting families, and the foster families would grieve their own loss and celebrate the blessedness of adoption and God’s provision for the expectant family. To David and me it seemed so very difficult and so very right. And, most importantly for us, so very doable. We completed several months of training and began the wait for our first call and our first foster baby.

Baby days

That first call came between Christmas and New Year’s Eve in December 1993. A tiny girl, weighing almost five pounds, was waiting for us in a nearby hospital; she was biracial and had been going through drug withdrawal since birth. We were at once smitten with our beautiful brown sweetheart. “Valerie” was a precious part of our family for four months. She grew strong with typical development while with us. Her departure was heart-breaking, but for only a short time; her adoptive parents reached out to us within a few days, and we were able to enjoy several reunions with her. We were blessed so much by her and her family.

We would have to wait six months before the next call came.

In October the phone rang. There was a baby boy needing a foster home. This infant was different…his circumstances, his “home”, his diagnosis, his family…everything we had learned with Valerie was tossed aside as we began our learning journey with “Adam”. Adam had been born with an extremely rare chromosomal disorder, Wolf-Hirschhorn Syndrome. This microscopic deletion in the fourth chromosome wreaks havoc on many of the body’s systems. Adam was extremely small…about eight pounds at two months of age. He had very low muscle tone and did not appear to respond to any stimuli. His facial features were unusual…his sky-blue eyes were set wide apart, he had a very small chin and a down-turned mouth. Unknown to all of us at the time, Adam was suffering from almost constant mini seizures, his swallowing reflex was impaired, and his testicles had not descended; he had an extra pair of ribs and only one kidney. It was unclear if he was able to see or hear. An important part of the story is where we met. Adam had been placed by his biological family in a residential special care facility. His family did not believe they were equipped to care for his many medical needs and had decided to allow him to be adopted.

Sidebar here: I struggled with this knowledge at the time. I still do not know how a family is able to make that decision. Now, as a card-carrying old lady, I can see better the many factors that were at play. Adam’s family did what they thought was best for him and for the rest of their family. We are so very grateful that Adam was able to experience life, and his life was valuable and had great meaning and purpose.

We took Adam home in December and began our adventure. We were unsure about the duration of our foster care, knowing that his adoptive family would also need to learn all that we had learned. Caring for Adam was quite challenging. He was apparently unable to show discomfort of any kind, so we kept to a strict schedule with feeding and diapering, monitoring his bowel movements and temperature. We were not content with his lack of interaction, so we all were constantly exploring new ideas for stimulation; music was a constant, including the radio and stereo as well as our own self-made attempts with recorders, piano, and singing. We took him everywhere, from church meetings to football games to school concerts. We were having a good time, and we hoped that he was, too, in his own way.

We waited for the dreaded call, and when it came, we were in for a surprise.

Did not see that coming

“The adoptive family has changed its mind. They feel that Adam’s needs are too much for them to handle. We will begin looking for a new family…that is…unless your family would like to adopt him.”

I felt so many emotions at once. How does this even work? Yes, we had grown comfortable with Adam’s medical concerns, but what about the future? Instead of just looking toward the next few months with Adam, we were looking at his entire lifetime…our entire lifetimes. Although I cannot be sure about the timing, I recall talking to our children, at that time ages eleven to nineteen, and we were all positive and hopeful about officially making Adam a part of our family. Within a day or two we responded to NewStart, that we would be thrilled to start adoption proceedings.

I will not go into all of the legal stuff. It really has no bearing on the story. We had already gone through various screenings in order to do foster care. So after the decision was made, we just continued on our journey loving our little boy and attempting to help him be the best that he could be.

Just a reminder to the reader…David was still unemployed at this time. I won’t intertwine the two narratives unless there is reason. After a year he accepted a position with an auto parts store. It was a bad fit from the beginning, stress-filled, gave him a salary that did not allow us to meet our obligations, and, in the end, was short-lived. David began his second round of unemployment in 1995.

A big change occurred one afternoon. One of our daughters asked if we could change Adam’s name; he was ours, after all, or would be soon. I asked her if she had any suggestions for his new name. Her response was perfect. “Well, he makes us laugh, so we should name him Isaac.” Immediately I knew she was right. It wasn’t just a good name for him…it was simply his name. David and I would later admit we were not quite as old as Abraham and Sarah when their Isaac was born, but we could relate.

So…Isaac it was.

Introducing Isaac Reeves

Isaac and I entered into the world of early intervention. Isaac, it seemed, qualified for all sorts of programs and supplements and supports. Due to his disability he was receiving Medicaid insurance. Through medical providers we became aware of a special program through Easter Seals. The early intervention program was housed at Metzenbaum Center for Mental Retardation/Developmental Disabilities (MRDD), now known as the Geauga County Board of Developmental Disabilities. The two of us attended weekly classes where Isaac had therapies with speech/oral stimulation and both fine and gross motor skills (occupational and physical therapies). Metzenbaum was a treasure trove of information and support, for both Isaac and the rest of our family. I learned how best to interact with him and how to notice and interpret his responses. One lesson stays with me to this day. The intervention specialist had brought out a learning toy that had shining strings strung across it. She gently brushed Isaac’s hands and face with a few, and then she waited. There it was. It was all in the waiting. Isaac’s eyes moved toward the sparkling threads. Again. Brush the strings across his face. Wait. Again his eyes moved toward the threads. So simple. So important.

Waiting became a part of everything. Talk to Isaac. Wait. Sing to Isaac. Wait. Hold him. Wait. Place a toy near him. Wait. We learned that he loved mylar balloons. With that discovery mylar balloons were always nearby…attached to the stroller and the crib, beside the toy box. I remember his laughing on two occasions; I’m sure there were more times…maybe…but two times definitely. Once I had laid him on the trampoline while the other children were taking a break. I placed my hands on either side of him and very slowly and gently pressed down, ever so slightly, and let him “bounce” up. He bubbled out a sound I had never heard. Again. Definitely a chuckle, or maybe a giggle. On another occasion I was carrying him in my arms as I came downstairs; I put a little bounce in my steps and made some silly sounds, and there it was again.

We continued to include him in as many activities as we could. Isaac was usually silent, uttering a breathy coo or sigh on occasion, so he was carted around to even the most quiet of places. But we also revelled in taking him to flashy and loud events. We did cover his ears if we were concerned that he could be startled or over-stimulated. Over the months he was in scores of church services, a dozen or so school musicals/plays/talent shows, football games, tennis matches, fireworks displays…he even attended a Mannheim Steamroller concert! Mostly it was just this simple; if we went, he went.

Challenges and solutions

Medical challenges changed and grew. We got good news here and then bad news there. We are blessed in northeast Ohio to have the University Hospitals system. Their children’s hospital, Rainbow Babies and Children, is unsurpassed. Isaac and David and I spent many days and nights there, and were blessed by staff more times than I can number. Isaac’s only extended stay there was due to a bout with pneumonia. Other shorter visits occurred for surgery to address his undescended testicles, to initiate use of an NG (naso-gastric) tube for feeding, and then for insertion of an entry port for a G (gastric) tube. I also remember Isaac having vision testing in the larger University Hospital complex and the testing that confirmed his swallowing difficulty that then led to the feeding tubes.

A referral to a pediatric neurologist confirmed that Isaac was indeed suffering from frequent minor seizures. On several occasions he experienced severe seizures that convulsed his entire body and were the absolute only events that seemed to truly cause him discomfort and brought about Isaac’s version of crying. An anti-seizure medication kept those events controlled, with the only difficulties being in keeping his dosage adequate as the feeding tubes helped him to finally begin to put on weight.

The summer of 1996 was filled with hope. David had been hired by a good computer company. Our oldest daughter had finished her second year of college, and our son had graduated from high school and was headed to college in the fall. Daughter number two was planning to enter the local high school in the fall, and I would be completing my final year of homeschooling with our youngest daughter. Isaac was up to a plump 23 pounds and approaching his second birthday. He was becoming more aware of his surroundings, batting at toys, eating a few soft foods, and gaining strength in his torso. He was noticing his feet, and we were hopeful that he would soon roll over.

Homeward bound

The opportunity came in late July for me to fly to Texas with Isaac; my parents had met him on a trip to Ohio, but the rest of my family had not had the pleasure. It seemed like a great adventure for the two of us. The first few days were pleasant and light-hearted, but then it all began to go terribly wrong.

Isaac threw up after finishing his feeding one evening and began running a low grade fever. Within a few hours his breathing sounded raspy, and I took him in to a nearby emergency room. The doctor on duty was not overly concerned and simply told me to give him Pedialite to keep him hydrated and take him to see his pediatrician when we returned home in a few days. There was really no way she could have understood how medically fragile he was, having never had a patient with Isaac’s unique challenges. Two days later, when his breathing had become labored and we returned to the ER, the situation had become dire. A chest x-ray showed pneumonia, and I heard them use the work “septic”.

Isaac was taken by helicopter to a different and better-equipped hospital in another city. I returned to my parents home, and the three of us hurriedly followed. A flurry of activity surrounded us. I answered the questions about his diagnosis and his medical history and needs. The puzzled looks on the faces of the medical personnel brought back all of my earlier fears and concerns. I had grown to see him in such a different light. He was just Isaac. I did not see him as so very different anymore. He had come so far, and I believed he would continue to go even farther. I spent a few minutes with him around midnight, praying for him, and telling him how loved he was; then I was assigned to a little sleeping cubby and was told I would be alerted if there was any change.

I believe my mom was in the regular waiting room, and my dad had gone home to sleep. Around 5:00 a.m. I was roused and told Isaac was in crisis. I joined Mom in the waiting room, and then we were brought back to the ICU. A door opened, and several medical staff walked out. As they passed me I felt something like a chilly puff of air. I had been quietly crying, but for some reason that cool breeze dried my tears, and I felt an odd peace and clarity. A kindly looking older nurse approached us, and she had a box of tissues in her hand. The tissues. Time slowed. It was a dream. It had to be a dream. Then someone asked me for my husband’s phone number. And I was being led into a room where I held my little boy for the last time.

Anyone who has experienced the death of a loved one, death where you have responsibilities, death where you have decisions to make, death where you are the ones sitting on the front row of the church…you know there is no way to really navigate it objectively. The dream-like state, the strange erratic movement of time, the loss of normalcy is like nothing else. The world seemed to have lost its color and texture and flavor. And I knew without a doubt that I would never laugh again. I felt rather bad about that, too, because in the same way I also knew that others around me would want to laugh again, and they would feel bad laughing around me. “We can’t laugh around Mom…she doesn’t laugh anymore.”

During our time of mourning we felt the comfort of God through family and friends. I learned through those acts of kindness how better to comfort others. Cards that held an individual’s memories of Isaac were the best. Oddly for me the unexpected connections and expressions of comfort were peacefully sobering. A visit from a casual friend of my son, along with his girlfriend who had no idea who we were. A card from a mother of a teammate of my daughter, neither of whom I had met. A card from a young woman who had graduated with my son and moved away but heard about Isaac through a friend.

I composed poetry while driving. Some of it actually made it to paper. A daughter wrote her own poetry. Another daughter wrote a short story. My dad, who had taken to writing hymns in his retirement, composed one that focused on the “little souls”. Isaac had made such a deep connection with us all. His presence had been so impactful, and, now, his absence was palpable. My husband later shared that during his unemployment Isaac had been such a comfort to him. One of David’s greatest pleasures was to nap on the couch after a long day of job hunting. He would gather up Isaac and lay him on his chest, talking to his “little man” and drift in and out of sleep. David told us that Isaac’s place in our home was assurance that God was going to provide for us.

Growth in spite of myself

Months and years did pass. Truisms proved to be true. Life continued. Children grew up and found love and careers and meaning. Four more precious foster babies were loved and sent along to their waiting families. One more job change was in store for David, and it financially blessed us. God’s faithfulness. I was surprised when laughter returned. But I had one more challenge to go.

Our youngest daughter graduated from high school. Her college plans were finalized. And I was adrift. What exactly did my life look like in the coming fall? David’s new job entailed frequent travel, leaving me to manage affairs on my own much of the time. It was fine. I was fine. Really. Just fine.

Flashback to 1972 when David and Marie married at the tender ages of 20 and 19. Marie put her art education dreams and college career on hold and did office work to pay the bills and help David finish up his bachelor’s degree in engineering/computer science. Then came a beautiful baby girl, then came David’s master’s degree in computer science, then another baby. Then…well you get the picture. We had a good life. I might have mentioned that in the first paragraph when I started this whole thing.

I scheduled a conference with an educational guidance counselor and then drove the short distance to a small branch of Kent State University. I was 48 years old and had one year of college courses from a tiny Christian liberal arts college…from 1972. What were my options at this point? The counselor was very kind, asking about my past interest in fine arts and sharing possible paths to continue with that. We seemed to be treading water, however, neither of us pleased with our discussion. The counselor began to ask me about my current interests and pursuits. Yes, I had homeschooled my children for 13 years. Yes, I had learned some gardening and canning. Yes, we had done foster care for newborns with some special needs. She perked up. Have you considered nursing? Well, not really, but maybe. Or what about special education? Kent had several programs for intervention specialists, from mild to moderate to intensive needs.

Did I hear a tinkling bell? No…that’s when an angel gets his wings. Did I see a bright light or feel an electric shock? Not really. But it was as if a tumbler in an elaborate lock fell neatly into place, and the key was turned, and the door quietly swung open. In a fashion I had already become an intervention specialist in the subject area of Isaac. And I loved it. It had been challenging, but I had learned, and I had been successful. It felt exactly right. Frighteningly right. Cosmically right. Goldilocks and the three bears…just right.

Becoming Mrs. Reeves

My journey began. It was September 2001. The world was about to change again, not just for me, but for everyone.

Weeks and months…semesters and years…time moved on. Marriages, grandchildren, war, uncertainty…and lots and lots of classes. In December 2005, we graduated. Me…as a full-fledged intervention specialist for students with moderate to intensive needs…and our youngest daughter…with a bachelor’s degree in nursing. There was even a future son-in-law in that vast sea of graduates in Kent that day. All of us, hope-filled, looking to the future.

I would accept a job the following fall at a small public middle school in Kirtland. I would continue to learn and grow, managing a small Autism unit and later a cross-categorical semi-self-contained (is that a word?) classroom. I sincerely believe that my short time with Isaac gave me the vision and the courage to start this new career at 53 years of age and to attempt to unravel the mysteries surrounding the learning challenges of many students. I would end my formal career twelve years later, but learning new things and having a heart for those with developmental challenges would continue to this day.

That tiny boy, who just missed seeing his second birthday, has his legacy in me. His impact on my little corner of the world continues. That was an unexpected story, and I would not have it any other way.