The following is excerpted from the book, “A Celebration of Family: Stories of Parents with Disabilities.” Published in 2021 by the Advocado Press and the Center for Accessible Living
Chapter 11
Morgan
“You do what works
for your family.”
Morgan lives in Florida with her husband (not pictured) and their two sons, Royal and Roger
I grew up in Vancouver, Washington, a suburb of Portland, Oregon. When I was 14, I started throwing up and limping. A Physician’s Assistant I was seeing thought the limp was a track injury and that I was coming down with the flu. However, I had an interest in science and biology which led me to conclude the diagnosis was incorrect and I was either going crazy or had a brain tumor. The symptoms persisted. Several weeks later, I fell. My Mom was fed up. She took me to my pediatrician. He looked at my symptoms and asked me to walk. He saw pressure behind my eyes and ordered a CAT scan and bloodwork. On the way home, my Mom got a phone call in the car saying they wanted us to come back. We turned around and went back to the pediatrician’s office. They put me in an exam room and took my Mom to the doctor’s office where she was told I had a brain tumor. My Mom and the doctor then both came in the exam room to tell me. The first thought that went through my mind was, “Thank God, I’m not crazy.”
I was diagnosed with a Glioblastoma Multiforme brain tumor on July 1 and had brain surgery on July 7. When the neurosurgeon opened my head, the tumor was like an octopus instead of being a mass of cells. It had little tentacles spread out everywhere. He took a biopsy, then closed my skull. His theory was if he tried to take out all these little tentacles of tumor, he might do more harm than good, ultimately paralyzing me. He told my Mom, “I opted for quality of life over quantity” and said I had 18 months to live. I was fortunate he didn’t do more, because minimal damage was done.
My mother refused to accept his prognosis. My case was reviewed by a Pediatric Review Board. One of the doctors on the board felt the tumor could be treated at the associated hospital and questioned why I was being referred to Oregon Health Science University (OHSU), the main teaching hospital in the area. My Pediatrician simply insisted I would be treated at OHSU. I became part of a study comparing three different regimens of chemotherapy and radiation combinations. The computer randomly chose which one I received. I was assigned the one they ended up having the most success with. It was chemotherapy, then radiation therapy, then maintenance chemo.
I had four rounds of intensive chemotherapy followed by four months of radiation therapy and another four months of maintenance chemo, which is chemo in small doses. Once a week I’d get an injection of chemotherapy and then once a month, I’d have to take some pills. Fortunately, although it’s one of the hardest cancers to get rid of, Glioblastoma Multiforme tumors seldom metastasize. After my initial four rounds of chemotherapy, my tumor was gone, and I have been cancer-free ever since. Unfortunately, all that treatment gave me a Traumatic Brain Injury (TBI). I have significant issues with memory and organization. In addition to my cognitive issues, I have weakness on my left side andproblems with my balance. I walk with a limp and I am permanently bald.
After I started my regimen, I became part of another study on the effects of chemotherapy on the brain. They were doing cognitive tests on children prior to starting any form of treatment, testing them again at the end of treatment, then comparing the results. It was a standard operating procedure for all children to get this test at the end of their treatment, even if they didn’t have the pre-test or, like in my case, got it in the middle of treatment. The exit exam became the benchmark for my cognitive impairment.
After treatment, I finished high school, went to college for an associate degree, got married, moved to Kentucky, had my first son, moved to Florida, and had my second son. I never gave it a second thought about having kids. If I couldn’t have my own kids, I planned to adopt. Adoption still appeals to me. I had my boys by C-section. My first son, Royal, was underdeveloped in the uterus so they decided to take him three weeks early. He only weighed four pounds and spent three weeks in NICU. They took my second son, Roger, three weeks early, too, but that was because my water had ruptured. They both ended up being fine.
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Physically, my limp is an issue in parenting. My kids walked early because I couldn’t carry them. I didn’t feel safe carrying them. I didn’t want to trip and fall with an infant in my arms, so they had to learn to walk quickly. I didn’t push them, but once they were able to walk, they walked everywhere. If it took us five minutes to get from the parking spot to the front of the store or to a shopping cart, that was the way it was going to have to be. They were going to have to walk.
I carried Roger, my youngest, more than Royal. I wore him using a wrap which made me feel more comfortable. Wraps weren’t as readily available when Royal was a baby, or at least not in Kentucky. But in Florida in 2017, the trend was wearing your child with either a wrap or a sling. With Royal being so active, I carried Roger. The wrap allowed both of my hands to be free so I could catch myself if I fell.
With my limp, I can’t run after my kids. I do a lot of out loud counting to ten and a lot of yelling. I hold their hands to make sure they don’t get away. They know Mommy can’t run after them, or at least Royal does. Roger’s not quite there yet as a three-year-old. He is starting to realize it though.
My poor memory has been a larger challenge in parenting. I will tell my kids something and then forget I told them. It got worse during the COVID pandemic. Everything ran together. My memory was shot all day long. Royal is seven now. When I tell him no he can’t do this or that, he will say, ‘But Mom, you told me I could.’’ My husband has been home a lot lately because of the pandemic. He’ll hear me say one thing and then contradict myself the next day. He’ll side with boys.
I lose track of time so I use timers and alarms to remind me of things – even daily tasks like picking Royal up from school. My memory is very visual. If I see something in one place, or I see words on a page, I can’t transfer that thing to another place or those words into another book because I won’t remember where it is. I will remember the first place. I use a lot of calendars and lists. I don’t remember it if it isn’t written down somewhere and a timer set. My phone’s calendar app is the thing I use most. It’s shared between my husband and I and has settings for reminders and notes.
Being a parent with a disability isn’t difficult, you just have to figure out what works for you and your family. I talk to my children a lot about my disability. After all, I’m a Mom and I’m bald. Moms aren’t supposed to be bald. I’ve addressed it with countless kids throughout my life. I’m used to it. I’ve just figured out how to tell my story: ‘I got sick, but now I’m better and this is what I look like and this is how I function.’ I have to tell kids without scaring them. I don’t want them to think the next time they get a cold,they’re going to end up bald and limping.
Royal asks a lot of questions. One time he asked me in the car, “Mom, why did you get a brain tumor?” I told him, “We don’t know, I just got it.” He continued asking if ‘so-and-so’ knew why, naming my doctors, parents and specific relatives, even the president. Royal’s friends and classmates ask questions. I’m honest with them because there’s no reason not to be. It’s not something I had control over. I have toput it in perspective for them and in language they can understand. “I got a tumor, like a golf ball, in my head, and doctors tried to take it out and they couldn’t. Then I had to take special medications that got rid of the tumor, but the medications hurt my brain and killed my hair. That’s why I don’t have any.”
As parents with a disability, we have a unique advantage over other parents because we have experienced things they haven’t. For example, when it was determined Royal was not thriving and I would be induced at 37 weeks, I was calm and collected. When we determined Royal wasn’t tolerating my minor contractions well (I didn’t even know I was having them) and we would have to deliver via caesarian section, I was calm and collected. When my epidural was administered, I was able to explain what I needed to do to get into the best position for administration. When I had to travel from my room down the hall to the NICU to see my son only an hour or so after undergoing major abdominal surgery, I wanted to walk the first time, but they wouldn’t let me. The second time, they made me walk behind my wheelchair. Later my husband told me the nurses expressed to him how astonished they were at how calm I was throughout the whole process; how good I was with Royal and all his challenges related to his low-birth-weight status given I was a first-time Mom. When he told them my medical history, they immediately understood. As disabled parents, we are given the opportunity to experience a world few live in and be prepared for situations few understand.
Something I’ve done is bring my husband to some of my doctor’s appointments and allow him to ask anything he wanted. I did this when we were first married and it afforded him the opportunity to ask his own questions – some of which my family and I had never thought of, having experienced my medical journey from the beginning. I plan on giving my sons the same opportunity if they choose.
Royal has mentioned I make Roger and him do a lot of things; like let the dog in and out or bring me something. Part of that is my parenting style – my kids are not going to sit around and have everything done for them – part is because of my mobility issues.
Hillsborough County, where I now live in Florida, has a program called Parents as Teachers where a counselor works with you and your child in your home. The purpose of the program is to identify if a child has special needs early on and assist parents in the next steps when there is a diagnosis. I signed up for it when we first moved to Florida as a ‘second opinion’ check to supplement Royal’s scheduled Pediatric appointments. I didn’t want any cognitive issues due to his birth situation to go unnoticed. Fortunately, nothing arose, and I was grateful for the monthly visits. While in the hospital when Roger was born, I was approached by the same agency and asked if I wanted to sign Roger up, which I did. It’s been a great thing for them both. The counselor visits our home. They do ability checks and a learning project once a month.
Once Roger was in the system, the counselor who was coming for Royal added Roger to her caseload as a double appointment. The counselor also allowed me to have conversations with an individual trained to deal with cognitive and health-related issues as to how to best parent with a disability even though that was not necessarily the program’s focus. If I had an issue with something, we would discuss it and decide on a plan. It’s been a great resource, especially for Royal, but it only follows the child until they start Kindergarten. I wish there was something similar that adults could sign up for that wasn’t based on a child’s age, or a service to help disabled adults as parents because it really is nice to be able to have an intelligent conversation with and get advice from someone who has experience with individuals with disabilities and an early childhood education background.
Because Roger was a newborn when I signed him up for Parents as Teachers, I was required to fill out a questionnaire about myself in addition to the standard family questionnaire with Royal (asking common living situations like does he live in a house/apartment, are his parents married/divorced, does he go to daycare, and other things of that nature). According to my responses to the questionnaire, I had Postpartum Depression and another counselor started coming for in-home sessions. She had previous experience working with individuals with brain injuries and was very knowledgeable about cases like mine. She confirmed my Postpartum Depression, which I honestly think I had with Royal, but went undiagnosed. We determined that I’ve always had at least some underlying depression. I kind of figured that out on my own, but it was never to a point where I needed to be diagnosed or medicated. I would only have a mild flare up every once in a while. She suggested I try medication to help with both the depression and cognitive issues, so I met with a Neurophysiologist and was further diagnosed with an Executive Function Disorder, which is the diagnosis for my memory and organizational issues. None of my previous cognitive tests resulted in a diagnosis, just a list of symptoms. I was put on an antidepressant and tried Aderol then Ritalin, but I didn’t like the side effects of either.
As a disabled parent I’ve never really received criticism. I have too much fun with my kids to allow people to notice my disabilities – at least that’s what I like to think. I engage and support my kids when and where I can because I won’t always be able to. When it happens that I can’t, I sympathize with my child. “I would love to be able to run and ride bikes with you, but that’s just not possible.” I find other things I CAN do with them, like gardening, being Den Leader for Royal’s Cub Scout den, and building LEGOs. My mobility issues have afforded my sons the ability to outrun me at an early age without me able to run after them. So I yell. Sometimes I can’t get up or move fast enough for my kids, so I yell. My boys are rambunctious and loud, so I yell. The yelling isn’t in anger, it’s out of necessity: “I’m coming!” “Way to go!” “That’s far enough!” We are a loud family, and it works for us. I also include my sons in my assistive technology and anything special to my disability, like my shaving what little hair I have on my head. I try to make it a fun and engaging activity they can be a part of. My sons have fun shaving my head.
There’s a strong possibility Royal has Attention Deficit Disorder (ADD). My husband was diagnosed with ADD in middle school and has a family history of it, so it could be hereditary – and a HUGE challenge for someone like me. Impatience is an issue in my house – either due to my inability to move quickly, my forgetfulness, or a lack of focus/hyper focus due to ADD in others. It’s stressful at times and arguments ensue, but at the end of the day, we all love each other and that’s the most important thing.
I’ve realized something unfortunate over the years as a parent with a disability and having friends who are parents with disabilities – and even some without. When a parent isn’t able to do something, their children tend to mature faster to step up and fill the gap. This happens in families who immigrate to countries that don’t speak their native language. I remember my grandmother telling stories of how she and her siblings would have to explain things and translate for her parents because they didn’t understand how it worked in America. I had a Deaf teacher in school and her hearing daughter learned to speak Spanish from their neighbor before she learned to speak English. Royal and Roger are having to do mature faster, too.When Royal learned how to video call his grandparents, we set up a policy that if something happened to me and I couldn’t call for help, he would call his grandparents, who would then be able to call Emergency Services and together they could get help. If we had a landline, it wouldn’t be as big of an issue, we’d just teach him to dial 9-1-1 like we all did in the pre-smart phone days, but with everything being digital, personalized and triple protected, he, being three-years-old, couldn’t just pick up my phone and call. Again, you do what works for your family.
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