Learning From Ellie

My little family of three was recently on a getaway at my family’s cabin. My parents and nephew were there, along with my cousin Dee and his family. Dee has a daughter, Ellie, who is 21-years-old. I remember being 21, anxious about the future, obsessed with boys, attending college, and more than anything concerned about what I looked like! Well, I guess not much has changed. I’m still somewhat anxious about the future, have a crush on my husband (most of the time), supporting my husband while he finishes college, and definitely concerned about what I look like. At the cabin, the group was sitting around the campfire, and my mom was doing her typical routine, clicking pictures of everyone (I inherited an inability to stop clicking from dear Mom). Well, when Mom got to me, I was sitting with my baby on my lap, worried about the baby weight I’ve gained, and, insecurity welling inside I insisted she not take my picture. Ellie turned to me and said, “Oh Tara, you have a lot to learn.”

Well, I will not divulge my age, but let’s just say I’m older, and therefore should be wiser than Ellie, right? So what is it that I need to learn that she has already learned? She is, after all, a 21-year-old girl. It would make sense, especially given her age, that she would identify with my concern about my physical appearance.

That night as I was snuggled in my bed escaping the crisp mountain air, I thought more about what Ellie had said. I try to be self-aware and am typically open to constructive criticism and self-improvement. I thought about Ellie’s life and how it was definitely possible for me to learn from her. My tears wet my pillow as I reflected on her many challenging experiences, and realized how much I did have to learn in comparison to such a refined soul. She is an amazing person and I am certain that everyone who knows her has gained wisdom due to that relationship. Let me share her inspiring story, and may we all learn something (or many things) from it.

Ellie

Ellie’s life began as a miracle. Her parents Dee and Ann had been unable to have children. They had adopted one son, James, and had been enjoying parenthood. When James was about a year old, Dee and Ann realized they wanted to expand their family again and looked into the possibility of another adoption. They faced roadblocks when dealing with the adoption agencies, felt frustrated by the experience, and ultimately came to terms that they would have only one child. About two months after that decision was made, Ann shockingly realized she was pregnant. What a miracle! About seven months later, Elizabeth Ann was born a full-term baby, with ten tiny toes, ten little fingers, and no complications whatsoever.

Ann and Dee admiring their little girl

She was nicknamed Ellie and brought so much joy to her immediate family and extended families. She was a darling little girl; she looked so much like Dee, and had a happy disposition. Dee and Ann had the picture perfect family, one boy and one girl, and life seemed to be going perfectly!

James, Ann, Dee and Ellie

When Ellie was about 2 ½ years old, Ann’s sister mentioned that she was concerned that Ellie’s speech skills were underdeveloped and her physical abilities were a bit unsteady and labored. Ann had also seen Ellie watching television about two inches away from the screen and she was concerned about some possible vision deficits. She also presented multiple flat brown spots on her skin that were somewhat concerning.

Ellie was immediately enrolled in speech, occupational and physical therapy through Early Intervention, attended special preschools and took private speech therapy as well. She was also evaluated by an ophthalmologist, who believed Ellie had lazy eye. One eye was patched, with the intent to strengthen the eye that was believed to be lazy. Ellie displayed some symptoms of ADD, but a psychological evaluation ruled out the diagnosis. Ellie was also evaluated by a neurologist, who advised her parents that she was just that way because she was just that way. No diagnosis was made. There seemed to be no explanation for the delays, no reason for the brown spots on her skin, and no diagnostic tests were done to rule out any possibilities. Ann made a suggestion to have a brain MRI, but the neurologist firmly believed that was unnecessary and the test was not done.

Little Ellie

At the age of about 3-years-old Ellie’s sleeping patterns changed and she experienced an extreme growth spurt. She was about a shoulder and a head taller than other children her age. Her bizarre sleeping patterns continued throughout childhood, which caused problems in school. Teachers thought Ellie was uninterested or unsocial when she would fall asleep at her desk, or curl up to sleep in a corner on the floor. Ellie attended regular elementary schools and took part in resource classes as well, to help with speech delays, learning disabilities and handwriting.

At about 8 ½ years old, Ellie began showing signs of early puberty. She was still much taller than children her age, had growth of body hair, and breast development. She also complained of frequent headaches. Her family physician referred her to an endocrinologist.

After 8 ½ years of searching, the endocrinologist finally provided answers. Ellie was diagnosed with Neurofibromatosis #1 (NF1). At the time of her diagnosis, the disease had only recently been defined and awareness was increasing. NF1 is also known as von Recklinghausen NF or Peripheral NF. This disease occurs in approximately 1:3,000 births, and is typified by numerous brown spots on the skin (known as cafe-au-lait spots) and neurofibromas on or under the skin, and can cause learning disabilities and the growth of tumors, which are most often benign, but can be cancerous. Information about this disease and other similar conditions can be found on the Children’s Tumor Foundation website.

An MRI of the brain was done immediately, and it was found that Ellie had an optic glioma, or a benign tumor on her optic nerve. It was also determined that due to the tumor, the pathway for normal drainage was blocked, and Ellie had severe hydrocephalus, or fluid on the brain. Surgery was done immediately to put in a shunt that would relieve the hydrocephalic pressure. Hormone therapy was also initiated to slow the precocious puberty.

As it always is, hindsight was 20/20, and everything suddenly made sense. The glioma on her optic nerve was causing deterioration of her vision. It was also putting pressure on her pituitary gland, which explained the early signs of puberty. The hydrocephalus created pressure on her brain, which was the reason she was having headaches, fatigue, and ADD-like symptoms. Also, learning and physical disabilities are common symptoms of NF1.

Ann told me she went through a long period of denial after finding out about Ellie’s disease. She cried a great deal, especially at night. She said she had what she calls a ‘death of dreams.’ She had certain expectations for Ellie’s life and future, but with one visit to the endocrinologist, all those hopes seemed to be shattered. I remember when I told Ann the concept of my blog was to help parents through their unexpected journey, she laughed and said, “That’s exactly what it is… unexpected.”

But she had to keep going for her children. By this time, they had two more boys, Jacob and Matthew, and also James to take care of. With the help of her wise and kind companion, Dee, she was able to keep moving forward, and the family was able to keep moving forward.

Ann said that even though she was pushing ahead, it was an extreme struggle because she carried the weight of heavy burdens. She felt a lot of anger toward doctors who had misdiagnosed and led them down the wrong paths. She felt regret for not insisting on diagnostic tests, and believed if she had insisted on certain things, maybe Ellie’s condition wouldn’t have progressed like it did, and she would have had fewer and/or milder symptoms. She also regretted that Ellie’s condition had taken away time she would have liked to spend with her other children and believed this had affected them negatively. She especially believed James, who was older than Ellie, had been neglected. James was old enough to be left alone when they had to take Ellie to appointments. The other boys were younger and would be with grandparents, but she worried about James a great deal. Then there was the death of dreams, for herself, and for Ellie. She mourned for Ellie’s pain and struggles.

There came a point when Ann physically, emotionally and spiritually could no longer carry the weight of her burdens. She couldn’t continue going along with such a heavy load. She had been praying all along that she could handle the burdens, but she finally realized she had to give the burdens to someone else, and turned to the Lord. She imagined the Lord was holding a large basket. She was holding onto some bricks, and each brick had a title. The titles included anger, death of dreams, regret, hurt, and many other similar titles. She said she handed those bricks, one by one, and placed them in the Lord’s basket. She begged Him to carry them for her. She prayed and begged. It took two days that seemed never-ending, but finally peace entered her heart. Since that time, she has been able to cope. She recently came across the milk jug story, which was reminiscent of this time in her life.

She still has waves of grief, but they are more like brief stings rather than painful open wounds. When she feels those stings she refers to the scriptures to be uplifted. One scripture in particular that helps is:

Therefore, let your hearts be comforted concerning Zion; for all flesh is in mine hands; be still and know that I am God (D&C 101:16).

When Ellie was about 9, the decision was made to do chemotherapy in an attempt to shrink and/or hinder the growth of the optic glioma. This was a difficult and scary time. Ellie was nauseous regularly and even more fatigued than usual.

One time Ellie took a nasty fall down the stairs, and broke her arm. This clumsiness continued and she had multiple broken bones in a short period of time. When Ellie went to the doctor about this, it was realized that, despite the chemotherapy, the optic glioma had grown tremendously in just a few months, and it was affecting her vision. They decided on radiation treatment, which was done for seven weeks. They had to go to the hospital, which was not very close to their home, every single weekday morning. With Dee working, and three other children to care for, this was a challenge. They managed with help from good friends and family members.
Her vision has progressively worsened and she is almost completely blind. She walks with a cane and gets lots of help from her loving family and friends.

Ellie with one of many broken bones

When Ellie was 16, the size of the tumor was evaluated, and it had never minimized, despite their best efforts to get it to, but they do believe the treatment did contain the growth. By this time she not only had the optic glioma at the chiasm of the optic nerve, but she also had smaller tumors all over her body (all non-cancerous) called plexiform tumors. They chose to do another stint of oral chemotherapy. This time the majority of the treatment was done by taking drugs orally, and the therapy lasted two years.

She’s always been good at math and is very imaginative. Anyone who knows Ellie has almost certainly heard one of her funny stories or silly jokes. Ellie is one of the most thoughtful and charitable people I know. You can't be in the same room with her without her asking if you would like a treat. She also makes gifts she makes out of yarn. I have so many Ellie presents, and so does my daughter! Even when she was little Ann says Ellie wouldn't take a piece of candy when offered unless there was enough to give to her brothers also. Amazing! She also loves music and is always singing. Ann says Ellie has the heart of a songbird, but can't carry a tune. Ann said it, not me!

She graduated from high school and minored in child care. She passed qualifying tests, and is state certified as a childcare worker. She works well with children, and currently teaches the 4 and 5-year-olds at church. There is a boy in her class who has significant learning disabilities. His parents used to have a hard time getting him to go to church and stay in his class. Now that Ellie is his teacher, he can’t wait for Sunday to come! He, like most children, loves Ellie because she loves and accepts him.

Ellie and her cousin Jake

Socially she has always loved and reached out to people. She never meets a stranger, everyone is her friend. Most children with NF1 have at least some degree of depression and/or anxiety. One of Ellie’s tumors goes up and down her face, and is very obvious. But even this does not affect her happiness and confidence. She does not concern herself with physical traits because she knows that it truly does not matter.

She has one very close friend, Eric. She was in classes with him during high school, and they even went to Homecoming together. They are dear friends and still talk on the phone daily and do many things together. But when it comes to dating, her dad is where it’s at. They go on dates often, her favorite place to go is Ogden Pizzeria, but she’ll settle for Chicken McNuggets and can be wooed with chocolate. Dee calls Ellie is ‘Sweetie Pie Princess.’ She’s a bit of a Daddy’s Girl.

Ellie, the dating machine, with Eric and Dee

Ellie enjoys life with her parents and three brothers. Their family currently lives in a remote area and they spend a lot of time outdoors and enjoy many getaways. Ellie tags along for all their adventures, enjoying her abilities rather than letting her disabilities keep her from enjoying life.

Ellie and Matt at the cabin

Matt, Jacob and Ellie

Ann wishes all special needs parents can learn from her experience. This is her advice:

• Be an advocate for your child.


• Be knowledgeable.


• Keep up on the conditions, symptoms, and how they affect your child.


• Be active in the education.


• Don’t be afraid to disagree because you know what’s best for your child.


• Trust your instincts and those feelings you get.


• Fight like a mama bear for your babies.

The other day I asked Ellie if she ever gets sad about her disease. She said that she is usually very happy, but when she does get sad, she listens to music (David Archuleta is her idol), sometimes cries, and prays. But she said she likes to keep her prayers short and sweet.

Thank you, Ellie, for teaching me that it doesn’t take eyesight to see beauty; beauty is found in a person’s spirit. Thank you for teaching me that happiness isn’t found only when life comes easy, but that it is a decisive behavior refined and perfected through difficulty rather than ease. Thank you for teaching me that prayers, even short and sweet ones, are answered. Thank you for being you!

Ellie being Ellie