Angie's Story

My daughter was 42 years old until I finally got to know her well, until she could finally say I love you mom. Angela was born in 1975 with cerebral palsy. She was severely brain damaged at birth and she could never talk, sit up or stand by herself. She could smile and laugh and shake her head for yes or no. For forty years all communication had to be organized into yes or no questions. When she was sick or injured it was almost impossible to figure out what was wrong. One time she came home from camp in pain, but I couldn’t figure out what had happened. In the end I took her to the emergency room where it took a bone scan to discover a broken leg. I always believed she could understand me and the world around her, but she had no good way to express herself. Then came the miracle of communication!

Please understand that communication between Angie and me always was pretty good. I knew her facial expressions. I could read her eyes, but other people couldn’t nearly as well. So, for her, now that she has been living at St. Joseph Home since 2013, it was empowering. We need to thank St. Joseph Home, A.W. Perlman Center - Cincinnati Children’s Hospital and especially her Speech Therapist for bringing this to fruition. It took years of waiting for Medicaid approval, trying Speech-generating Devices (SGV), getting the best mounting system for the SGV and her big red button switch. Angie had something like this when she was in school, but it was always too difficult for the benefit she received. She was really good at eye pointing and yes/no responses and basically these former simpler devices took way too long and didn’t offer her the possibility of more in-depth communication. Check out the video where you can see and hear from her Speech Therapist about the impact of the device and the process.

It’s been a couple of years since she started using her SGV regularly. Now Angie completely understands how to use it. It’s quite complex actually. It’s similar to a website in that when she clicks on an image, such clothes, it will open to all kinds of categories of clothes. Then under a sweater will open a cardigan or a turtleneck, for example. Now I understand that the speech-generating software in actually installed on a computer. So, one day recently I asked her to show me how she gets to Netflix. (She loves to watch “Sex in the City.”) And she did! I saw that she knows how to use a curser to arrow up, down and over. I saw how really hard for her to do one click at a time. And that young lady took me straight to Netflix to watch a cake decorating contest. Honestly, I was gob smacked. Today she has a mounting set up on her bed as well as her chair, so that she can watch her shows in bed. Her life is really much better than I ever could have imagined.

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Today, Angie has a full and busy life. She goes to a Day Program where she participates in diverse and creative activities organized by the staff. For example, she directed her aide on how she wanted an art work created, an art work that won her a certificate and actually sold. Sometimes a visiting student group may come to give a little concert. In another facet of her life, she works as a greeter for St. Joseph Home two mornings a week. She also goes to a communication group with other people who use the SVG once a month. She has regularly scheduled outings where she and other residents go out to eat, see a play or movie, or visit a museum or the zoo. Plus, she gets to participate with a children’s play group where she reads stories. Today her life is full and she is happy, but it wasn’t always this fantastic.

Hope

I have introduced Angie and her life today in the hope that you can see what’s possible in the future for your child no matter what their challenge. She lives a life I never could have imagined. She’s generally happy and completely engaged in her community at the home. For example, when a friend and I went to visit and give her a manicure, she was watching us and smiling until the aides in her cottage started chatting as a group. Immediately she started craning her neck to listen to what they were saying. She definitely wanted to be sure she didn’t miss anything. She’s a grown woman with a community and she does not depend solely on me. This is a dream come true for me and our family.

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The Journey (Part 1)

Angie’s Birth

11/17/18

Angela Maria was born two months premature on January 19, 1975. She weighed two pounds, four ounces. Why? After a week off from the flu, I had come home from work tired and was standing in the kitchen fixing dinner when my water broke. After we got to the hospital where I spent several days on bed rest, I developed preeclampsia, also known as toxemia. When my blood pressure went sky high, the doctor began the process of inducing labor. They gave me a shot that was to help my baby breathe and when the labor was going too slow I had a C-section. When Angie arrived in this world she came kicking and breathing room air. She came full of life, as little as she was. I was hopeful that everything would be alright even though she would be spending a couple of months in an Isolette or incubator.

At six days old she developed lesions or little blisters on her body because she had sadly caught herpes simplex from me. This virus is the virus that causes fever blisters and brain damage in infants. At that time, I had no idea of what this meant.

11/18/18

By this time, I was also in the hospital because even before Angie developed the lesions, I had developed phlebitis in my right calf. I learned that this blood clot could dislodge and kill me, so I was placed on complete and total bedrest. I wasn’t allowed to get out of bed for anything, so I couldn’t go to the bathroom nor could I visit my baby girl in the neonatal department. I was grounded and confined to my bed.

When the doctors told me that Angie needed to go to Cincinnati Children’s Hospital from St. Vincent’s Hospital in Indianapolis, I was devasted. Her father was to follow her in the ambulance and I was to stay put. On the way to the ambulance a nurse brought Angie into my room for a brief visit and she let me hold her for the first time. I cried softly as she left. A bit of solace was that my home town was Cincinnati, Ohio, so my parents could meet them there. Angie was admitted to participate in a double-blind study for a new drug that might help her fight off the virus. All I could do was cry and pray.

It’s still heart breaking to remember these moments and I find myself with tears in my eyes as I share this. And you’re probably wondering why I ended up alone in this situation, right? Well, a huge winter storm and deep freeze had settled on the Midwest that January and February, so driving was near impossible. My cousin Mary (she really is my sister at heart, since I’m an only child and she’s the only girl in a family of five children) and one of my girlfriends braved the blizzard and came to visit a few days later.

When they arrived, I was in the middle of another major physical challenge. My incision from my C-section popped open (dehisced) and I started bleeding. And since I was on blood thinners for the clot, the bleeding wouldn’t stop. This sounds unbelievable, but it’s all true! My bed was surrounded by doctors and nurses while my favorite nurse, Mrs. Taylor, held my incision together with her fingers. The scene was surreal, because I saw it from above my bed. I wasn’t in my body at the time. I don’t know if I was close to dying or not, but I remember being calm and peaceful as the observer.

Later, after doctors reversed the blood thinners and got the bleeding to stop, I finally had time for my visitors. It was then that I asked Mary to be Angie’s godmother and take care of my baby if necessary. I don’t remember anything else, but I am forever grateful for having a friend and family member there in the hospital with me at that moment.

I spent close to two months in that hospital bed and while I was there the hospital chaplain visited and brought me books to read. Two of the books he brought me were from the High Places Series by Hannah Hurnard. The first book was Hind’s Feet on High Places, which is an allegory about a character name “Much Afraid.” I found this book and its sequel, Mountain of Spices, comforting and very helpful. I haven’t reread them in a long long time, but I have never forgotten the how much they blessed me at that time.

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Angie Comes Home

Journey Part 2

11/19/18

It was almost two months after Angie was born that we got to bring her home. She weighed a few ounces under her five pounds goal. At first, she was very slow to drink her little four-ounce bottle of formula, in fact, I was shocked because it would take her close to an hour to finish one. At the time, it felt like she would just get finished and it was time to feed her again. And certainly, she slept a lot too, but I was amazed at how much time it took to care for a preemie. Honestly, I was too exhausted in those early days to do anything but go through the motions. I remember warming bottles in the middle of the night, walking her when she cried for what seemed like hours, and singing song after song to try and soothe her. I also remember loving her with all my heart.

By the time Angie was 6 months, she finally fit the baby clothes for three-month old babies. Life felt like it was in slow motion in those days. Every day was pretty much the same and every day I was tired. In addition, I was getting more and more concerned about her development, because she never put her little hands on her bottle nor did she hold a rattle. He hands were always in tiny little fists. The doctors kept saying to me that preemies are slow, but I was starting to doubt them. She was developing too slowly. I had two girlfriends at the time who had babies almost the exact same age and those babies could hold rattles and put their hands in their mouths. In my gut I knew something was wrong. (I also discovered that I was pregnant again, OMG!).

At this time, we had been living in Indianapolis, Indiana and my parents were about two hours away in Cincinnati, Ohio. When my husband and his mother went to an attorney to file for a divorce, I decided I needed to move back home. My parents graciously made room for us and supported us both financially and emotionally. They were our salvation, honestly. They loved me and adored Angie. Many a night my Dad and Angie would fall asleep in a chair together. Home was a safe and secure place with them.

It was also in Cincinnati that we found a new pediatrician who would diagnose Angie with cerebral palsy. I will never forget that moment. Mom and I went together with Angie to see Dr. Deitschel for an initial visit and in moments he told us that she had CP (cerebral palsy). He explained that there was no way to determine the severity yet. We would have to wait and see. When he walked out of the room Mom and I looked at each other with tears in our eyes and wondered what cerebral palsy actually was. All we knew was that there was a telethon sponsored by Jerry Lewis to raise money for the kids were its victims.

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Cerebral Palsy

11/20/18

The following months were filled with doctors’ appointments. Dr. Deitschel connected Angie to the Cincinnati Center of Developmental Disorders at Children’s Hospital. For months Mom and I took Angie in for tests. She had brain scans, visits to physical and occupational therapists, EKG’s, EEG’s and I can’t remember what else. And in the middle of all the testing, I gave birth to Angie’s little brother, John on December 31, 1975. He was perfect! I was so relieved! Angie, Mom and I took a welcome break from running to the hospital for a few months and it was just as well, since Cincinnati had the worst winter in years. We even had a full-on blizzard which dumped a couple of feet of snow on us. So, we stayed warm at home with grandma and grandpa and took time to adjust to being a family of three.

11/22/18

Thanksgiving Day Morning (Side Note)

So grateful this morning to be in such a blessed place in my life. My children are all doing well and they are happy. Although I will only be able to connect with Angie today via Facetime, I know that she is well, happy and content to be with her friends, her cottage mates, at St. Joseph Home.

Today, my husband, Tom, and I are with our youngest daughter and her fiancé on the coast of North Carolina. I’m grateful for being able to share Thanksgiving with them this year.

By the time Spring arrived I had learned that Angie had a seizure disorder, and her muscles were spastic (extraordinarily tight). Mom and I started taking her to both physical and occupational therapy twice a week at the hospital. She hated going! As soon as we pulled into the parking lot, she would start crying and she wouldn’t stop until we left. Her therapists were getting nowhere fast. So, we enrolled her in United Cerebral Palsy Preschool, which was located in the hospital wing not too far from the therapy department. This, actually, was the best thing that could have happened for me.

UCP Preschool (AKA Parent Training Program)

UCP Preschool was not only training for toddlers with CP, but also training for parents. There were probably ten little kids in the class with varying degrees of physical challenges and six or seven parents who sat in the waiting room five mornings a week for two hours. The teacher, Jerry L., was amazing. She knew exactly how to treat these little kids as “normal” and adjust for their physical challenges. There was a viewing window for parents, so we all took turns watching the class and taking it all in. And when we weren’t watching our kids, we talked and shared with each other. This was extremely helpful. We knew we weren’t alone and we were learning strategies for parenting our special children.

We also had regular parenting classes for special needs children, where we were given strategies for improving communication, monitoring positioning and using positive reinforcement to build our kids up. In our parenting classes we learned, for example, how to make sure we had eye contact with our children when we talked to them. Jerry taught us to be consistent and helped us to keep our cool. Personally, I found that the classes we observed and the classes we took were extremely helpful for me as a parent in general. I also acknowledge that these very classes made me a more thoughtful and deliberate teacher when I finally went back to work.

At the same time Angie was in UCP preschool, she was continuing her OT (occupational therapy) and PT (physical therapy). When I would take her from class and walk down the hall to the therapy department, she would start her screaming routine. By this time, I understood there was nothing I could do to stop her. She was determined to tell the world that she hated therapy. Nothing her therapists nor I did would stop her crying, so her OT and PT got together and suggested I volunteer her to be a participant in a 6-week NDT (Neurodevelopmental Therapy) advanced training program for therapists, which took place outside of Washington DC.

So, Angie (2 and a half), John (18 months) and I went to Washington where we lived in a dorm room and took Angie to PT every day for a two-hour therapy session in the morning and another hour session in the afternoon. For one entire month Angie screamed when therapy began and stopped screaming when we walked out. It was dreadful. John had to tag along and I tried to keep him happy by playing little games with him while we listened to Angie scream. Finally, on the first day of week five, Angie accepted therapy peacefully. She never cried again after that in either OT or PT. I realized from this, that Angie was an extremely strong-willed child. This fact would actually be a blessing for her.

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NOTE:

NDT Therapy - https://www.ndta.org/

This is a hands-on treatment approach used by physical therapists, occupational therapists, and speech-language pathologists.

Angie in Her Standing Frame

A therapist uses guided movements and positioning as a treatment strategy, for example, therapists move a patient’s legs in such a way to help them experience what it feels to like to take a step. And they do it over and over and over. Plus, they teach the caregiver to do the same thing. Angie’s therapist actually built a support frame where Angie was strapped into a standing position for a period of time to give her the experience of standing. This positioning was important because it allowed her to experience being upright in space. This orientation was for the purpose of introducing a feeling of balance. In the end, sadly this didn’t work well for her because her ankles turned in so much due to her spastic muscles, it eventually became impossible for me position her feet flat so she as no longer able support her own weight.

A Smiling Angie in Week Five of Therapy - Relief!

11/28/18

The time at the NDT training workshop had the additional benefit of actual parent classes and parent support meetings. This was a precious and uplifting time getting to know other parents who were going through a similar situation with their child. We became friends who shared our struggles and small victories. Since we lived in the dorm together, we got to know each other pretty well. Personally, I found that making these friendships helped me as much as therapy helped Angie. This was the first time I was part of a support group that became extremely close in such a short time. We certainly did discuss our challenges but we also found humor and joy in being together in spite of them.

After we returned to Cincinnati, Angie continued to make some progress in therapy and enjoyed UCP preschool. I got more involved at Children’s Hospital. I volunteered to meet other parents who were learning what a diagnosis of CP might mean. I made presentations about CP and explained the benefits of therapy. I also visited special education classes at the University of Cincinnati and talked about Angie and CP. I discovered then that I needed to always show her picture to the parents and the students, because it was then that they connected to her story and understood that having CP didn’t have to be perceived as such a sad and terrible tragedy. Angie was a happy little girl with a smile on her face. Since she could find life fun and funny, she made everybody smile.

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12/3/18

The next summer we all set off for another 6 weeks of therapy. The previous summer helped her so much that her therapists encouraged us to go again, so Angie, John and I headed back to the east coast. I don’t remember as much about this trip because by this time Angie was easy going about therapy. She accepted the hands-on positioning and manipulation by her therapists and cooperated as much as a three-year-old could. The biggest challenge was that as she grew her muscles kept getting tighter. Angie is a spastic quadriplegic and that means her brain damage causes certain muscles to constantly constrict. I understand that when certain areas of the brain are destroyed, the healthy part of the brain tries to compensate. It sends out signals, but when these signals try to activate an area that was damaged they short circuit. For example, the muscles in her wrists are always pulling her hands down. The same thing was true for her ankles. Her muscles kept pulling her feet inward, so she couldn’t put any weight on her feet. Sadly, in the end, even with intensive therapy, the spasticity was winning out.

12/5/18

The next step in treatment became a series of castings. One therapist would position her feet as close to neutral as possible with their hands, while the other one padded and wrapped her feet with plaster cast. The casts were changed regularly to prevent pressure sores and to gradually stretch her muscles. Through all this Angie was a trooper. She didn’t cry. She watched. I hoped. When they removed the casts, her feet pulled in as before. She went through series casting for quite a long time, but in the end, her doctor and therapists decided that the only solution was surgery. So off we went to see the orthopedic surgeon.

Meanwhile, my parents offered continual support in day to day activities. My friends and family also supported us by inviting John to play groups while I took Angie to therapy and UCP Preschool. One day a week I took John with me when I took Angie to preschool because the hospital in Cincinnati is very near the Cincinnati Zoo. John and I wondered around the zoo as often as possible (We had a yearly pass!). Later, he used to tell people that he went to the zoo so often that he knew all the animals by their first names. We were happy. I had support from my parents and extended family, my church and my hospital friends. In addition, a group of mothers from the hospital had formed an organization called “Mothers of Special Children.”

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Mothers of Special Children was wonderful. It was the place we could talk about our “special needs” kids with people who really understood our situation. It was the place where I got to meet parents of children who were older. As a group, we planned fun events for our children and for our whole families, we had fund raisers for projects we cared about, and we had small gatherings at people’s homes where we could chat informally. I remember one such meeting where our hostess shared the story of her ten or eleven-year-old son’s grave condition. He had a condition where he would die before he became a teenager. This story was heartbreaking, but from her sharing, we all had the occasion to discuss ways to cope and ways to think differently about parenting our kids. I’ll never forget this day because it was here that I was challenged to stop asking, “Why me?” and start asking “Why not me?”

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12/6/18

Reflections

Ever since the day I was at the house meeting hosted by a lovely lady with red hair, I have had a more positive way to think about all the children with disabilities and their families. I don’t remember the lady’s name or exactly what she said, but I remember what she gave me that day. First, I understood at a deeper level that I wasn’t alone. I also started to let go of the guilt I felt. I used to think thoughts like, “If only I had insisted the doctors put me on bedrest,” “If only I had stopped working sooner,” and “If only I had known how fragile a healthy life could be.” I started to see that other parents had similar thoughts and struggles and by sharing we all felt better and found more joy in the moment. And less guilt…

Another thing I felt guilty about was my distaste for being around people who drooled. Let me explain. My mother had a sister with down’s syndrome. Every six weeks she came to our house to spend Sunday with us. We would pick her up at St. Joseph’s Infant Home after church and bring her to our house. Mom’s brothers and sisters all took a different Sunday and everybody tried to include her in family events. This was normal for me and I loved having her with us. This also led my mother to volunteer at the Home for the Mentally Retarded every week. When I got older she wanted me to come with her to volunteer too. I went one time. So many of the people there drooled and I couldn’t stand it, so I refused to go back. And guess what? Angie drooled for many years. She had to always wear a bib with a water-proof lining to keep her clothes dry. There were days when I figured that God gave me Angie to make me more tolerant and accepting.

Support Groups and a New Baby

Through time in the waiting room at UCP Preschool and Mothers of Special Children, I had developed amazing friends. These friends understood the day to day struggles. They understood the work required to be a caregiver to a child with special needs. They were sounding boards for therapy discussions and other challenges. They were fun and joyful and we had such a good time together. Angie, John and I were surrounded and supported by these great friends, my parents and extended family. We were in a good place. I was remarried and about to give birth to another adorable baby boy who we would name Matthew. Angie became the baby watcher and would make noise if the baby Matt was about to get into trouble and John would get him and me whatever I needed. John and Angie were the best helpers ever. Fun times for sure!