The Triumphs and Challenges of My Teenage Years

By Crystal McClure
Writing for the CP Family Network
In my last blog, I wrote about what it was like growing up with cerebral palsy. That story primarily concentrated on my elementary school years. As any adult knows, the middle school and high school years can often be the toughest, especially for children with disabilities. I decided I wanted to share my experiences and the lessons I’ve learned in order to encourage others to persevere through the hurdles they face as a teenager.

Middle School

The transition from elementary to middle school was not as difficult as I had expected it to be. I was going to a brand new school just like everyone else. I reconnected with a few people from my pre-school days at Spring Creek who also have disabilities and use wheelchairs, walkers etc. It was a comfort knowing I “wasn’t the only one.” I became really good friends with Alex Kanavos in the sixth grade. He also has Cerebral Palsy and uses a wheelchair. We still talk to this day.

Near the end of my sixth grade year, I went back to Shriners Hospital in Kentucky, where I had 2 weeks of physical and occupational therapy. I learned how to dress myself, transfer to and from bed, and also how to go to the restroom on my own with someone just there to spot me. This was a big accomplishment in my life and still remains so. It was freeing knowing that I did not have to ask for help to get dressed and that I could do things on my own like any other 12 year old.

However, bathroom breaks proved to be one of my troubling times in middle school. It seemed as though I always had to go at the wrong time. The aides were eating lunch and would ask that I return at a later time, or my teacher didn’t like the time I chose because it was near the end of class. I was allowed to leave class 5 minutes before the bell rang for class change. Sometimes, this still wasn’t enough time to go to the bathroom and get to class in time to get settled. Why? I was not able to use the bathrooms in our wings (each grade had their own hallway). I had to go to the Multi-Handicap room, which was in the middle of the school, to use the restroom. Going into class late was not only an embarrassment for me, but also a disruption to the class as a whole.
Overall, my middle school experience was great with the exception of the bathroom issues. I am grateful that I was able to take those two weeks at Shriners to become more independent. Not only did I learn to do a lot on my own, but it helped shape me into a strong-willed person and gave me high confidence and self-esteem.

High School

High school, on the other hand, proved to be a bit more challenging. I still attended school with many of the same people from both elementary and middle school, but my freshman year we also combined with a school from Chattanooga. I still had the same friends and made many acquaintances along the way. I didn’t have the bathroom issues like I did in middle school, thank goodness.
My main issue in high school was other people. I was bullied. Nothing severe but nonetheless, it is still what I consider bullying. I was trying to go through the cafeteria one day to get to the lunch line and there were students in my way. I said, “Excuse me” three times and no one moved. I then proceeded and blew the horn on my power chair to let students know I needed through. When I did this, a girl got in my face and said some profane words along with telling me I did not have the right to use my horn. There were a couple other instances my Freshman and Sophomore years, but they were addressed by teachers and staff.
One of the most sobering moments of my high school years was not being able to attend my Junior Prom. It was set on a local riverboat which was not handicap accessible. My mother and several teachers I had grown to know well made sure that my Senior Prom was accessible for me. I had my own kind of Cinderella story that night, as in I was home when the clock chimed 12!
My Senior year in itself was probably the one I enjoyed most, but not without some flaws. During the last half of my Senior year I had enough credits to be able to only attend school for half the day. I had no way home in the middle of the day so I chose to attend half-day vocational school. I chose to be in the Graphic Design class there, which ended up being somewhat of a nightmare. I was not able to use the machines to learn anything. Because of this, the teacher just sat me in front of a computer and asked that I write a book about myself. I did this for a while, then quickly realized it wasn’t what I went there for and in essence I was being discriminated against. I addressed this issue with the staff of the school and  they placed me in Cosmetology where I finished the rest of the year.
Graduation day, May 17, 2002, was one of my proudest moments. I am the first person in my family on my Father’s side to receive a high school diploma.

Lessons Learned

Even though there were some rough patches during those seven years, given the opportunity I wouldn’t change them. I learned how to become my own person, and how to persevere and push on through tough times. For this, I am forever grateful.

About the Author

Crystal McClure lives in Tennessee. She owns her own home and holds an Associates Degree in Office Administration. She is pictured with her boyfriend, Mike.

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Diary of a Crisis, Part 3: Major Error and Tears

Note: CP Families editor Lee Vanderloop recently experienced a health care crisis with her daughter, Danielle. Part III of her story appears here today.

By Lee Vanderloop

After settling in and giving history to the admitting physician at the new hospital, meds were ordered and additional IV antibiotics hung. Several hours had passed when Danielle’s nurse entered the room with several medications. If I’m in the room at the time, it’s usually my habit to inquire as to what meds they’re administering, or what IV they’re hanging. The nurse told me: Pulmicort, her anticonvulsant, Tegretol and the blood thinner Heperin.

I stopped her right there and asked her who had lost their mind and ordered Heperin? Danielle’s bone marrow was making inadequate amounts of platelets and greatly reducing her body’s ability to clot blood. She definitely wasn’t in need of a blood thinner!

I demanded the name of the ordering physician. A physician who had made rounds earlier entered the room. He told me I was right and apologized for the error and assured me that the Heperin would be discontinued immediately. I asked him how such an error could’ve been made, and was informed that with non-ambulatory patients such as my daughter, anti-clotting therapy was standard protocol with admission. I was speechless at the thought of any order being written without first consulting the patient’s chart, med list and allergies.

“We’ll Make Her as Comfortable as Possible”

The day went on with repeated blood draws, medication administrations, and consults with various physicians. A chest x-ray was ordered but was of an inadequate quality to interpret, so a CT scan was ordered. We would not learn of the results until the following day, on Danielle’s birthday.

Danielle would be spending her 27th birthday in the hospital, but not without cake, balloons and family! We had several special visitors that day. The first was a doctor from general medicine, who agreed that it appeared some form of bacteria or infection was attacking Danielle’s bone marrow. But, he said, without a painful bone marrow biopsy there was no way to confirm or rule out the diagnosis of Pancytopenia. He ended with “We’ll make her as comfortable as possible.”

Then, a very special person in our lives appeared in the doorway, Lucy. Lucy had been one of Danielle’s many nurses and had experience in oncology and hospice. Lucy listened in as the physician was communicating how things would progress as Danielle’s immune system failed her. We discussed antibiotic therapy at home with visiting nurses and the eventual need for a central line.

I rejected the thought of a central line until absolutely necessary, if at all. When the doctor left the room, Lucy all but ran to me, and we cried in each other’s arms. I was at my breaking point in watching my child suffer. When hearing our wail of tears from outside the doorway, Lucy’s husband Matt (also our pastor) entered the room. An intimidating 6’2” with the heft of a football player, Matt came across the room in three steps swept me into his arms and held me tight as I cried my heart and soul out.

I asked Matt through words broken by tears, since he was a pastor and should have a direct connection to God, why God hadn’t seen it in his mercy to take my baby home and spare her further misery. I begged him to please ask God to take her home.

After several moments I collected myself and we left the room, headed to the cafeteria for a much needed cup of hot tea.

Sadly Danielle has passed away, but her mother Lee Vanderloop is helping other families daily as editor for the CP Family Network website. 

http://www.cpfamilynetwork.org/ 

When Medicine No Longer Heals
and Love is All You Have

By Lee Vander Loop

In October, I wrote several articles titled “Diary of a Crisis” about a medical emergency we experienced with our daughter, Danielle. Danielle has suffered from severe spastic quadriplegia cerebral palsy since birth. She has always been non-verbal, non-ambulatory, severely neurologically impaired, and totally dependent in every aspect of care. We’ve maintained a Do-Not-Resuscitate (DNR) for Danielle for many years.

The diagnosis in October was double aspiration pneumonia and acquired pancytopenia, although we’ve now learned both diagnoses were incorrect. We were prepared to enforce the DNR with the October admission in the event that Danielle did not respond to treatment.

Pancytopenia is a diagnosis made when at least three hematology values are significantly and chronically below normal. We were told that a bacterium was attacking Danielle’s bone marrow, hampering its ability to make adequate platelets. Upon further review however, it was determined that rather than being bone marrow-related, Danielle’s pancytopenia was acquired from years of surgical interventions, medications and recurring pneumonias. Danielle responded well to the IV antibiotics and the pneumonia was resolved.

Unusual Swelling Appears

Danielle seemed to be doing relatively well for several months after that October admission, but we still had many unanswered questions. Lab results a month later showed Danielle’s platelet count was slightly improved but her red blood count was continuing to drop. We were also noticing increased swelling in her left leg, face and right hand. Her primary care physician attributed the swelling to “positional edema.” Her primary care doctor told me in November, “She’s fine, Mom,” when I expressed my continuing concerns over her still-low hematology values, the continued swelling and her stomach’s failure to tolerate even her meds, thereby forcing us to use the j-tube for all meds and feeds.

The winter proved difficult in managing Danielle’s comfort and care. Her airway became more unstable, requiring frequent suctioning and head positioning. The swelling didn’t seem to be getting any worse, but we were beginning to see a change in her stool patterns. We tested for bacteria and a parasite, but both cultures came back negative.

The first two weeks of April were extremely difficult. I suspected from Danielle’s respiratory status that she may have aspirated yet again, but with all the spring pollens out I was hopeful that her symptoms were due to the allergens in the air. I set a house rule that no windows would be opened while the pollen was flying and we would instead turn the air conditioning on as needed to keep the house comfortable.

The issues with her stools continued, as did my concerns. During the second week of April, Danielle began showing intolerance to her j-tube feedings. Danielle has always been on a feeding pump and was tolerating 60 ml (2 ounces) per hour of continuous feed. I was panicked when after running her feed for just 2 hours she became extremely nauseous and started heaving and gagging. I turned her feed off and made every effort to protect her airway from another aspiration. After multiple failed attempts to resume her normal feeding regiment over a two-day period, it was apparent there was something more going on. We took her to the hospital the morning of April 17th, and again the diagnosis was aspiration pneumonia.

I Make My Stand

Obviously, the first concern was to treat the pneumonia, so I was shocked when, with no explanation, the doctors discontinued the IV antibiotics after just 24 hours. Her respiratory issues did seem to improve slightly but she was still exhibiting an elevated heart rate, respiratory rate, and temperature.

When they suggested that they wanted to move her to the normal floor and prepare her for discharge, I made my stand. I brought the elevated vital signs and GI issues to their attention yet again. I was getting increasingly frustrated that no one seemed aware of Danielle’s base line history of hypothermia and bradycardia. It was becoming obvious to me that no one had taken the time to review Danielle’s history. I also pointed out they had not tried feeding her over the previous three days to see her response to her feedings.

To placate me, they started Danielle on a 30 ml per hour feeding regiment of a special pre-digested formula normally used with j-tube feeds. They ordered a sonogram of her liver, a fluoroscopy study of her pancreas and the traditional GI studies involving barium. I made it clear I would not take her home again without answers to my questions: why was she not tolerating her feeds; why the chronic elevated heart rate, temp and respiratory rate; why the loose stools over the past five months; why was her immune system still so compromised and her hematology values still dangerously low; and what was causing the edema which, over the course of that week, had become alarmingly worse.

My breaking point was the afternoon of April 22nd when I returned to Danielle’s hospital room and, in passing, the nurse mentioned that she had just given Danielle her insulin. Danielle had never been on insulin! I was shocked and inconsolable. I was told that one of the physicians ordered a glucose tolerance test and found Danielle’s levels were averaging between 275-600 mg/dL. I cried my eyes out in despair and dismay. Over a 24-hour period, they could not get her blood sugar levels under control despite trying different variations of insulin.

We Finally Get Answers

A year and half of pain, frustration, tears and fears and we finally had the answers. There had been mention of “chronic pancreatitis” 18 months prior when I had her in the ER for the swelling in her left leg and intolerance to anything in her stomach. At the time, no one made an issue of it. If I hadn’t inquired as to the results of the GI CAT scan that was performed with that visit, I’m sure I would never have known of her pancreatic issues. There was also mention that her liver’s production of albumin was low, but no one seemed alarmed or offered an explanation. I always insisted on copies of Danielle’s lab results and would do my own research into the anomalies. When I voiced concerns about her abnormal hematology values there was always some explanation given, but there was never alarm or a sense of urgency involved with any of my inquiries.

The afternoon of April 23rd, I had a life-altering conversation with Danielle’s attending physician. I was in the room alone with Danielle when the doctor and her resident entered. She told me tests indicated that Danielle’s pancreas was totally destroyed. It was not making the enzyme needed to help her body absorb nutrients, nor was it producing the cells needed to make insulin. This explained why she now needed insulin and why, although we were feeding Danielle 22 hours a day, she had literally been starving to death for the past 18 months and why her immune system was so compromised.

Another test showed Danielle’s liver was not making adequate amounts of the protein albumin. One function of albumin is to keep the blood from leaking through blood vessels which can cause fluid retention (edema) in the ankles, legs, lungs or abdomen. This explained Danielle’s edema and much more. My daughter was in late stage liver failure and her pancreas was gone. The physician asked me, as gently as possible, how I wanted to let my daughter die.

Taking Danielle Home for the Last Time

As if on cue, my husband and Donna, Danielle’s nurse of 25 years, entered the room. The doctor explained to them what he had just told me. We agreed that we would discontinue the insulin, take Danielle home and pray that through God’s mercy, she would pass peacefully in a diabetic coma, free of pain.

I was taking my baby girl home to die, and if God was hearing my prayers she would die in my arms. I had been prevented from holding my child when she entered this world due to the medical crisis she presented at birth. I would not be deprived of holding her in my arms when she passed from this earth and from my life.

We brought Danielle home the evening of April 24th. She went into a diabetic coma on April 27th, and remained in that coma until May 1st. At 4 p.m. that afternoon, Danielle’s respirations changed dramatically. I gathered her father, siblings and Donna at her bedside, put down the bed rail and took my child in my arms. I held my baby girl and talked to her through tears of sorrow and pain while we waited for the good Lord to come and reclaim his angel. It was the hardest hour of my life. Danielle took her last breath in my arms at 4:50 p.m.

She was finally free. Free of 27 years of pain and suffering, trapped in a body without even a voice. My baby was finally at peace. With her passing I’ve lost a large piece of my soul, but I thank God for the strength to endure that last hour, and for every moment of those 27 years that he entrusted her to me. Without ever having spoken a word in her life, my daughter taught me a level of love, perseverance, compassion and faith that surpasses anything in this mortal realm.

I would have given my life for my child to have spent one day enjoying the beauty of the world around her. I try to imagine the awe she’s now experiencing in her new body, and I pray she’s enjoying the wonders of God’s Kingdom as she dances at the Lord’s feet in Heaven.