Catie began In-Home Special Education Services not long after she left the hospital. The people providing these services were all good-hearted and intelligent women. (Cate had only a couple male teachers and therapists her entire life.) It seemed at any point in time we had at least one truly special soul who “got” Cate and knew how to support me in a meaningful way. Dot, Catie’s PT, was our first such gift. I looked forward to her thrice weekly visits. They were like a balm for my wounded heart. She had a wisdom and a way of “seeing” that always reassured me. This lady saw the beauty of each child she treated no matter what, or how extensive, their disabilities were. I treasured her therapy sessions.
All together we received one hour daily with a teacher, and three hours with PT and ST. OT was just two hours weekly. We arranged that through our insurance privately. I thought Catie needed OT, Dot agreed wholeheartedly, and she recommended an exceptional OTR therapist, Diane. This brilliant little dynamo was worth her weight in gold. She had an ivy league education, was married to a physician (So she had an in-home consultant that often helped us!), and she had extensive post graduate training with leading experts in upper extremity treatment. Diane was in a class by herself. She was to remain working with Catie off and on, in different capacities, until Cate was twenty-two years old. Sometimes she came weekly, sometimes as a consultant, but this highly skilled/educated woman was a master. I used to tell her she should have her hands insured by Lloyd’s of London. She made such a difference in Cate’s life. I loved her. (Later on she also introduced us to Tina, an exceptional PT, who eventually became a professor and department chairwoman in the PT field at a nearby university.) Our girl had an excellent team. Catie was doing so well when Diane first began that she remarked “I’ve never treated a child with more potential.”
Oftentimes these professionals doubled or even tripled up their allotted time. They thought there was significant benefit in their working together. When they did so, it in effect, reduced the number of hours of help Catie received per week from thirteen to maybe eight or nine hours. This happened regularly. I was not a fan of too much of that, as it made my workload alone, much heavier because any time another adult was not present to interact with Cate, she was left to her own devices. I also missed the one-on-one visits with the special ones who could talk about our entire situation, and not just legs, bones, muscles and breath sounds. Catie was clearly better off at home than being bussed to a large, segregated school in Albany. But that said, there was a dramatically increased workload for me. I don’t regret it in the least. She had a normal infancy at home with her mother (which I needed as much as she did) and siblings, she was never sick from colds and flus, and no one was more motivated than me to stimulate her and help her grow. But I was tired.
My follow-up visit with my OB Dr. C. was at about six weeks postpartum. I arrived at the office where I was a “regular”, since I’d been a patient there through five pregnancies within seven years at this point. Everyone knew me well. Marie, the office secretary came running out to see Catie. “Oh, she’s beautiful! What did you name her?” When I said “Caitlyn”, Marie exclaimed “Oh gosh! Same name as Dr. C.’s new granddaughter.”
The nurse brought me into the examining room. When Dr. C. eventually entered, he immediately looked at me a bit quizzically as if to take my emotional temperature, then he touched Catie’s cheek and asked softly “How’s she doing?”
“Pretty well. But all I hear is that we just have to wait and see. It’s a little scary.” He nodded and turned to get something from the cupboard.
“Her name is Caitlyn. I added. I understand you have a new granddaughter with the same name.”
“That I do. And she’s a beauty too.”
He was a good person and a good doctor, a devout Catholic, family man and highly regarded professional. I knew all that. I genuinely liked him. I could tell he was worried about Catie. I’m sure he didn’t relish the thought of a possible legal confrontation, but I sincerely believed he was worried on a purely human level, at least as much, if not more. I felt compassion for what he must be feeling.
All I wanted was for Catie to be well. Mark and I had absolutely no desire to sue anybody. Ever. That’s just how we are. And as I’ve said, being part of the medical profession made me sensitive to the risks we all face every day as we try to help people. But I’d be lying if I said there wasn’t a glimmer of resentment about what his care may have done to my little baby and to our entire family. Even if what initially happened to Caitlyn was a purely congenital incident, the fact that he let me go three weeks post due date was less than stellar practice. I’d had a non-stress test the week before her birth and we all (nurse, technician, me) had to do quite a bit of poking and prodding to get Catie to move much. They chalked it up to her being asleep because everything looked “good”, and they scheduled me for a November seventh induction.
My Uncle Leo died in the meantime, and I wanted to attend his wake, so I rescheduled the appointment for November sixth. Had I not done that, Catie would have been a stillbirth. I held my tongue and tried not to project resentment, but there were unsaid questions hanging in the air between us, and we both knew it. The impact of Catie’s injuries affected us as a family on many crucial levels, besides the obvious harm to Cate herself. Her many needs meant that I could not return to work part-time as an RN at Memorial Hospital. (Not if I wanted to meet the needs of my family.) The loss of income was felt deeply. (In fact, I was never able to return to work on a regular basis, largely because of Catie’s many, fluctuating needs and the difficulties associated with finding competent, reliable and trustworthy help. I had several jobs over the years but I always had to work part-time, have flexibility in my schedule, and then often had to quit rather unexpectantly because of a need or change in Catie’s condition.) It affected Mark and I emotionally. That spilled over to our other kids.
Our “new normal” was all-consuming of our time, attention, finances and energy. We would never be the same. That was the truth. That said, although I don’t believe it was God’s “perfect will” for an innocent baby or the rest of us to have to suffer from this, He “allowed” it to happen for His own unfathomable reasons and the fact that he honors the free will of each of us. Sometimes, He does seem to intervene, even if uninvited to do so. I believe most of us have had the experience of being spared a car accident or some other mishap by what seems to be “Divine” intervention. God allowed this traumatic birth.
He permitted Catie and our family to have to endure these circumstances. But He didn’t abandon us.
I believe what Scripture says in Romans 8:28 “We know that all things work for good for those who love God, who are called according to his purpose.” No one can even remotely know the mind of God, but because of Caitlyn and through Caitlyn, God taught Mark and I, and many others, lessons about Himself. Catie was an “Evangelist Extraordinaire”. People have sometimes teased me that our boys all have biblical names of men who have books in the bible. True enough, but Catie could be included in the ongoing Book of Acts. Although largely nonverbal throughout her life, she spoke volumes about “the three things that last”, faith, hope and love.
One day I received a call from the elementary school that they wanted to see me regarding Mark’s progress. When I arrived, I was taken to a small conference room where Mrs. Jenne, Mark’s Pre-First teacher (She was an excellent educator and a loving woman.) and Dr. Hess, the school psychologist, were waiting for me. They began to tell me their concerns that Mark’s schoolwork had begun to drop off since early November. I said “Well you know about Catie, right?” They shook their heads sideways. I had asked a neighbor to tell Mrs. Jenne what was going on, but apparently there was some miscommunication and all she had said was that Cate was still in the hospital. The school had no idea how sick she had been and the turmoil we were all facing.
“Well that explains everything!” said Mrs. Jenne. Dr. Hess smiled and agreed. She promised to spend extra time with Mark to help him both catch up, and feel more reassured about everything. She did just that too. All four boys ultimately had this “Teacher’s teacher” for first grade. She was one in a million, and I’ll always feel both affection and gratitude for her kindness, generosity and the good she did for us Roches.
Mark and I worked out a schedule at home so we could provide as much one-on-one stimulation for Cate as possible without neglecting our time spent with the boys. We scheduled Catie’s seizure medication (which made her sleepy) so that she would be awake in the late evening after the boys went to bed. That way we had the early evening to spend with them and meet their needs. Then, once they were in bed, we got out the ‘Baby Exercise Book’, our giant beach ball, and whatever toys or household/therapeutic items that provided interesting and functional stimulation for Catie’s current abilities.
Her muscle tone was generally low, in part because of the Phenobarbital, but also from her neurological injuries. We worked diligently to improve upon that. I came up with an idea to utilize our queen size camping mattress. When we applied light pressure near her, the mattress would help facilitate Cate’s turning and rolling over. We also brought a hard plastic kiddie pool inside and then placed all kinds of different things within it to provide varying textures and sensations for Catie. We filled it with dried up leaves from the lawn, silk fabric, a mink coat. You name it Catie played in it or on it. And then sometimes Mark, I, or the boys pulled her around in the pool or on a little plastic sled, throughout the downstairs. We had a blast with her and she laughed and loved it. I also made flash cards of photos and magazine pictures, we did all the busy box maneuvers with her until she mastered them, stacked blocks, read books. Our house was FULL of toys and props and things that dangled from light fixtures and doorknobs . . . . Cate was very passive as her expressive abilities, in both large and small motor (and also speech) were significantly impaired. Her receptive skills were much better. There was a sparkle in her eyes, and when we “brought the world to her”, she soaked it all up like a sponge. So, that’s what we did! As the saying goes “If the mountain will not come to Mahomet, Mahomet must go to the mountain.”
In Between Two Worlds 