I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
Since my daughter was born with numerous health conditions, I've met many special parents in waiting rooms and other scenarios. Our conversations have often led to the frustrations that come when dealing with health insurance. Here is an outline about handling health insurance claims that came from my personal experience from working in the industry for seven years. If you would like further information, I also found this article and this article to be helpful.
Be knowledgeable. Know your policy and what it covers. If a significant procedure or treatment is anticipated, contact your provider beforehand to find out what is needed (pre-approval, authorization, co-payments, etc.) so there are no surprises and you can provide the information or documentation that is needed to ensure approval. In the case of insurance claims, knowledge really is power!
Coordinate your benefits. If you have multiple insurance carriers (i.e. you and your spouse carry insurance through your employers; Medicaid and personal health insurance) it is important to let each carrier know about the other carrier. This can avoid so much frustration for you, the insurance carrier, and the medical providers!
Document, document, document. Many times payment of insurance claims are denied or delayed because of missing or inaccurate data. To avoid this, be proactive and get yourself involved in the documentation your medical provider submits to the insurance company. Ask to see the claim form. Ensure all the patient information is correct. Ask your doctor to ensure the diagnosis (ICD-9) and procedure (CPT) codes are accurate. This can prevent so many problems! When documenting, it is usually best to use a general diagnosis rather than a specific one. For example, instead of the diagnosis of 'Down's Syndrome' it is better to use 'low muscle tone' in order to get approval for physical therapy visits. Get the physician involved as well. Trust me, it benefits them as much or more than you for the insurance company to pay the claim, and they usually understand what the insurance company is looking for , so get them to help you ensure accuracy of documentation.
Kill 'em with kindness. Trust me, I worked in the industry for quite some time, and the people who work in insurance deal with angry people on a regular basis. Anger doesn't really do the trick. If you really want them to listen and take action, be nice. Be calm. Explain your situation. Find out how you can help them help you. Let them know you appreciate their help. This does not mean you have to be a pushover or have to accept empty promises. If an insurance professional does not do what they tell you they will do, insist on talking to someone in management to ensure the task gets done. But always, always, kill 'em with kindness ..... it will work every time! (Well, almost every time, that is.)
Sometimes it will still come to the appeals process. Don't be afraid of the appeals process. Again, knowledge is power. When a company sends a denial, it is federally mandated that they include with that denial instructions should you choose to make an appeal. Make an appeal; there is a 40% chance your claim will ultimately get paid. Follow the instructions specifically. It is good to have the provisions of the policy the insurance company used to determine denial. Read the exact policy wording, and work with your physician in determining the proper wording to use in your appeal letter and/or what documentation will support your claim for payment.
Negotiate with your provider. If the claim is ultimately denied, or if the co-payment causes financial hardships for your family, negotiate with the provider. Advise them of your particular situation and see if the charges can be discounted to an agreeable fee.
Before I decided to quit my job to be with my special needs daughter, I worked as a claims adjuster. I handled liability injury claims for auto and homeowner's policies, and worked in the industry for seven years. Although my prior employment does differ from handling the health insurance claim process and appeals process, I think I took away valuable knowledge in understanding what insurance companies are looking for and how to give it to them. If you have any specific problems or questions, feel free to make a comment about it or email me and I will provide any assistance or references I can!
In October 2006, Oprah aired a 'Paying It Forward' episode in which audience members were given a video camera and $1,000 to donate to some sort of charitable cause. They were given one week to complete the challenge and were required to record their giveaway on the video camera.
A member of Ellie's community was participating in Oprah's 'Pay It Forward' challenge. She didn't know Ellie personally, but had heard about her fun, charitable spirit despite the many reasons she had that she could be quite the contrary. This person had decided to split the $1,000 up, and give to several different charities. She opted to give a portion of the money to Ellie.
Ann, Ellie's mom, got a letter from Ellie's high school asking her to come for an appointment on a certain date and time. Ann was uptight about it because she assumed Ellie had been causing some sort of trouble. She couldn't stay uptight for long, though, because while she was waiting in the office, she saw Ellie walk in. Ellie is blind and didn't see her mom sitting there. Ann watched as Ellie pulled lunch money out of her pocket and placed it in a collection jar to give to a teacher battling cancer. She couldn't help but smile and be pleased at Ellie's non-stop lesson on charity.
Ellie and Ann were called from the office into a different room. Although Ann had no idea what awaited them, Ellie was most certainly giddy inside because she was already in on the gig. Ann was surprised to see a woman with a video camera and a few members of the school faculty. (Suddenly Ann wished she'd worn a different outfit since she was being filmed!) The woman explained the Oprah challenge and said to Ann that she had offered money to Ellie the week before and asked Ellie what she wanted to do with the money, that she could buy whatever she wanted! Ann instantly thought that was such a nice gesture and assumed Ellie would be consuming a lot of Chicken McNuggets & BBQ sauce in the very near future. However, the lady went on to say that Ellie said she didn't need anything and she wanted to do something nice for her mom.
Ann was given flowers and a trip to the spa. More importantly, she was given the gift of true love from her daughter, and reminded of the unique blessing it is to be the mother to this special girl.
The face behind the Oprah camera was so impressed by Ellie's desire to give that she still insisted on doing something nice for Ellie. She told students and faculty about the incident and raised 100 1-dollar bills. Ellie gave most of that away too! But she did keep a few dollars to get herself some delightful treats.... you guessed it, McNuggets!
Oh Ellie, we are in perpetual awe of you. Thank you, thank you for your example to pay it forward. If there were more Ellie's in the world, it would be a much better place!
We would love if you'd add your child's story to our collection of kidz stories. In order to help you get started, we've compiled this list of questions. You don't have to answer every question and you don't have to stick to only the information addressed in this list. This is merely a starting point ~ hopefully something that will help you get thinking.
Whether you write the story to share on kidz, write it just for personal therapeutic purposes, or decide to share the story with your child, we think it will be a great benefit and help.
Tell about family (brief bio, # of children, where living, etc).
Thoughts/feelings when expecting.
Tell about the child's birth.
When did you find out there were health problems? What were the symptoms?
How did you react? Spouse? Children?
How did you cope? What tools did you use?
Name of condition.
Tx/Rx that helped and/or didn't help.
Special stories of inspiration.
Current status.
Tell about your child's personality... what songs does he/she like. Unique qualities that show individuality?.
Goals/plans for the future.
Advice to other parents.
Any resources that inspire or assist you? (Books, scriptures, stories, quotes, songs, hymns, webistes, tools)
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!
Today I had the privilege of interviewing Ann, the mother of a special KID whose story I will post later on. Ann shared this article and said it reminded her of how she learned to cope with her significant trials. The article is about a woman dealing with many family challenges. Here is an excerpt from the article:
Time went by, and despite my desire to forgive, I was still bitter. Then the simplest thing happened.
I was unloading the car after a trip to the grocery store, and our three-year-old daughter was helping. She was carrying in loaves of bread and cartons of eggs and was doing just fine. Then she decided that she was going to carry in a gallon of milk. After some struggle, she pulled it out of the car, and it landed with a thud on the driveway. She gripped the handle with both hands and heaved it. It barely budged. I offered to help, and she snapped at me: “No! I do it myself!” She strained and grunted but made no progress in lifting the milk. After several minutes she looked up at me with tears welling in her eyes and said, “Too heavy. Can’t do it.”
As I looked at my sweet, stubborn little girl, I saw in an instant what Heavenly Father must see in me—a well-meaning but stubborn child who wouldn’t accept His help. A scripture I had learned in seminary came to my mind:
“Behold, ye are little children and ye cannot bear all things now; ye must grow in grace and in the knowledge of the truth. “Fear not, little children, for you are mine, and I have overcome the world, and you are of them that my Father hath given me; “And none of them that my Father hath given me shall be lost” (D&C 50:40–42).
The significance of this is obvious, but the lesson became even more profound when my daughter’s eyes brightened and she said, “Mommy, you carry me; then I carry milk.” I scooped my little messenger up in my arms. I carried her, and leaning the jug against my arm, she carried the milk. In tears, I deposited my precious cargo inside.
Later, on my knees, I admitted to the Lord that my “jug of milk” was too heavy and that I had been proud in trying to carry it on my own. I asked forgiveness for my anger, my stubbornness, and my pride. I begged the Lord to carry me. I knew I was the one who needed to forgive, but the burden was too painful and too heavy. If the Lord would carry me, though, I could do what I needed to do. I begged Him to lift me, and He did. He helped me not only carry my burden but also cast it away.
Thank you, Ann, for sharing this article. It is a beautiful analogy and I know it was something I needed today.
I came across this poem just today. I liked very much the message of perseverance. It reminded me of a mom I met in a waiting room at one of my daughter's appointments. Her daughter, Hannah, has a disease that causes muscular degeneration. The condition is unfortunately terminal and death is eminent. Regardless of the prognosis, I met the pair in the waiting room of a physical therapy clinic. With their uncanny ability to put doubt and fear aside, sweet Hannah is making progress in her physical development. Just as hard work does for all of us, her mom says that the efforts Hannah puts forth in physical therapy brings purpose and joy to her life.
When I decided to set up this blog, coming up with the name and 'mission statement,' if you will, was difficult. I kept thinking of using the term 'special needs' but would quickly push that idea away. I perceived the title as condescending so I initially kept it out.
Today I came across the definition of the word special. My in-depth review of the word's meaning helped me realize what a tremendous honor it would be to be given such a title. 'Special' is the perfect word to describe the KIDZ I hope to celebrate on this blog - distinguished, in some ways superior, and held in a high esteem.
Merriam Webster adds another entry to the definition of special: designed for a particular purpose or occasion. Now that I have better educated myself on the term, I recognize even more just how special my daughter is. I am certain that she was designed to be exactly as she is for many exalted purposes, some of which I see and understand now, and I'm confident I will see many more of her divine purposes in the days and years to come.
Suddenly, special doesn't seem so condescending, does it! I actually believe it to be an ultimate compliment.
But wait, there's more! So if a child is special, then the term encompasses not only the special child, but everyone who has a relationship with that child. As a mother to a special needs child, my role suddenly becomes distinguished, and designed for a very particular purpose. I am certain my husband and daughter's grandparent's feel much the same. Because she is special, our purpose and the very definition of who we are transforms as well.
When it comes to our special KIDZ, moms, dads, grandparents, friends, and everyone in that child's circle of influence becomes special indeed.
Miss Chloe Gayle is our sweet almost-4-year-old who has Cerebral Palsy and West Syndrome. She is the inspiration behind this blog as well as our family blog, endless jubilee. Hers is a life of large hurdles, tiny triumphs, true miracles, and great love. We take joy in the profound privilege it is to be her parents and have come to realize that she helps and teaches us much more than we could ever reciprocate.
This is her story.....
When I found out I was pregnant, although the timing was unexpected, I was thrilled! Oby and I had only been married a few months, but definitely wanted to have children. We found out it was a girl! A girl meant bows, dresses, tights, headbands, pink, yellow.... sugar, spice and everything nice. We named her Chloe Gayle. Chloe from the Bible and Gayle, which is my mother's middle name. I always pictured her with big blue eyes, snowy skin, and long wavy strawberry blonde hair. My girl. I was worried she would like her daddy more than me, he's just more of a kid at heart. But I knew she and I would be best friends who would laugh in sync at everything. I was so anxious to see her, hold her, and watch her grow into a lovely lady. I didn't have specific plans for her, I just wanted to teach her to appreciate her unique beauty, and to find her niche - whatever would make her happy. I just wanted her to be happy, no matter what.
They placed her in my arms and I called her my 'little bundle.' She was so soft and her eyes were wide open. She had my fingers. I had never seen anything more beautiful.
Her days were not easy from the beginning. She looked absolutely perfect, but she seemed to be in constant pain and misery. She was always crying, screaming, inconsolable, and hysterical. Instinctively I felt something was truly wrong, but I didn't want to be paranoid. Colic, they said. There were plenty of good-hearted people with a lot of advice. 'Have you tried wrapping her tight in a blanket?' 'You need to try the football hold. That always worked for me.' 'Just give it six months, it's just a stage.' No, NO. This was not what I had planned. We were just going to giggle and try on different pink outfits all day, but not this, not the constant crying. Her big blue eyes were always red and her snow white skin always wet, a mirror image of her mother, except I had black mascara running down my pale skin. I tried everything I could think of to soothe her. Everything.
I have only a few faint memories of the first few months of her life.... of her crying and me feeling disappointed that my dreams of daffodil days filled with giggles and pink dresses were shattered. And I'm sure little Chloe wondered what she'd gotten herself into!
I remember having to be strong in front of the doctors. I had to keep my composure so they would take me seriously, and listen to what I was saying. Something was wrong with my baby. I wanted them figure it out and fix it. It got so bad, after all the different types of formula didn't help, and I couldn't get in to see a specialist for four months, I went straight to the ER. The doctors didn't mean to be, but they were condescending as they asked WHY I brought my infant in to the Emergency Room when her only real symptom was crying.... It didn't seem to be any sort of legitimate emergency to them.
Finally, I talked to a doctor who realized I was not leaving until I got help for my baby and some answers. He said they would run all the tests, assuring me that he was certain the results would help me realize there was nothing truly wrong, and that it was probably just colic. We did the tests. My husband had to hold her because I was too physically and emotionally exhausted to hold her down while they poked and prodded her, unable to console her cries.
Then we waited and waited. And waited. I started wondering if the delay was because they found something wrong. But as we sat in the cold ER room trying to get comfortable in the hard chairs or the papered bed, I felt an incredible sense of peace come over me. Part of that peace came because Chloe had cried so hard she had exhausted herself into a nap. But there was something much more powerful than I had ever encountered in that room. There were angels wrapping me in a blanket of peace. I have no question of that. I had glimpses of heaven as I waited. I was so comforted by the feeling I had in that room, I thought it meant that nothing was wrong.
But then the angels in white were replaced with a man in white, with an MD tag pinned to his lapel, and terribly unfashionable spectacles. It was the doctor. The feeling of comfort was immediately gone, and I just knew....
It was bad news.
They showed us the Brain CT Scan. I don't think he knew what it was, so needless to say, he wasn't able to explain it to us very well. I was strong for awhile. No tears, just trying to recall the latin I learned in my high school Medical Terminology class so I could translate what he was saying into something I could understand.
When we left that night all I knew for sure was that my baby had a white spot on her brain, the doctor was concerned, and there would be more tests. The nurses and doctors who had been condescending were suddenly empathetic. Everything seemed uncertain and I knew it wasn't going to be easy, but there was a strange comfort in knowing we were finally going to be taken seriously and get the help I knew Chloe needed.
After many tests, Chloe was given multiple diagnoses, the main one being encephalopathy. The brain MRI showed multiple anomoles. She has a thin corpus collosum, periventricular cysts, and calcification in the right frontal lobe. The EEG showed extremely abnormal electrical activity; in other words, lots of seizures.
We were told the cause of these problems was most likely a stroke in utero or infection in utero. We have since ruled out the stroke in utero, so she likely had an infection of some sort. My personal belief has always been that the viral infections I experienced during my pregnancy (Ecol i and food poisoning) affected her development, but of course we'll never know for sure.
We have been to many doctors, trying to get multiple opinions to ensure that she was getting the best care. I wanted to find a doctor who could fix her, but I've come to learn that we don't need to fix her -- if anything, she's helping to fix us.
"Wait and see," seemed to be the only advice we were ever given. I used to resent that suggestion. I wanted firm answers. But I've come to realize that as we do wait through the days, months and years, Chloe helps us truly see who she is -- which has nothing to do with what she can do or how her body works. It's a blessing to see a person in this light, outside of how society determines a person's value. There is so much more to all of us than what we can do or cannot do. This has been one of Chloe's greatest lessons to me.
I wouldn't say that time has healed the pain. Rather, I would say that with time has come wisdom. But I vividly remember in the first days and weeks of understanding that I was being thrown into the role of special needs mother, that it was hard just to breathe. Fortunately, there were moments of spiritual clarity and insight from others that always got me through.
I remember one day in particular, driving home from Primary Children's Medical Center in Salt Lake City after receiving more bad news. Chloe was screaming in her car seat as usual and I just didn't know if I could do it. Then, as silly as it may seem, I saw this three-legged dog on the sidewalk hobbling along with its owner, and the song 'So Small' came on the radio. I immediately went from self-pity to extreme gratitude. There was just something about the bounce in that dog's step, and the lyrics to that song.... I realized that this "trial" would not define me. I knew that how I reacted would create the quality of life and happiness I would experience. I realized how blessed I was to be Chloe's mom and how incredibly strong she was. I knew she was a survivor and I was determined to learn some attributes from her. I knew how much Oby and I loved her and the love we felt from her really was all that mattered, and the rest was just not that important in the grand scheme of things. From that moment on, I took more responsibility for my feelings and actions. I knew it was going to be up to me to choose love over everything else.
Thank goodness for those moments of clarity and life lessons to get me through the tough times. Like when we faced the next big hurdle....
When Chloe was five months old, Oby asked me to come where he was with Chloe. "Have you seen this?" I gulped. I didn't want to get caught in my denial. "Yes, I've noticed it before, but I'm sure it's fine. She has an appointment with the neurologist in two weeks. I'll talk to him about it then." What was happening was her entire body would jerk up, as if she were doing an abdominal crunch. Her fingers would touch her toes. The jerking motions would occur in clusters and the clusters would happen many times throughout the day. This went on for a week or so, but when she started to cry in between the 'jerks' we decided to take her into the hospital. We were told they were 'infantile spasms.' Spasms, that didn't sound like a big deal. They prescribed some medications, including a 6-8 week trial of a steroid to help the spasms. It didn't seem like a big deal.
Videos of Chloe's Infantile Spasms
A Google search quickly made me realize that Infantile Spasms, otherwise known as West Syndrome, is a very BIG deal. I read that Infantile Spasms cause irreparable brain damage each time they occur. This brain damage causes statistics like these: 90% of babies with I.S. end up with severe mental retardation, a 60% higher mortality rate before the age of 10, and would usually lose the ability to smile and interact. The medication used to treat it, ACTH, cost $20,000 a vial and it took awhile for the insurance to approve the payment. This form of treatment had a relatively low success rate, but the next form of treatment was invasive brain surgery, so it was worth a try. A home care nurse came to teach Oby and I how to give her the daily shot. I thought it would break my heart to stick her with a needle, but it was actually painless for all of us. It didn't seem to bother her at all, so it didn't bother me! The main thing that bothered me were those statistics. I have never prayed so hard in my life. I simply could not imagine a world without Chloe in it or a world without her smile to brighten my days.
After six weeks, the EEG was normal.
Excuse me, did I hear that right? Normal?
Normal. She had not just improved, but had essentially been cured. All I had been hearing was about her many abnormalities, so it seemed nothing shy of a miracle to hear that word. Normal.
Prayer works. Believe me.
She has also been diagnosed with bilateral exotropia, a misalignment of both eyes. I think she is beautiful, and has the most perfect and beautiful eyes in the world. But apparently, they put more merit in what the Opthalmologist has to say about that than what her mother thinks. She had corrective surgery when she was 7-months-old, although she does still have a slight misalignment in her eyes. They say exotropia is not uncommon and is unrelated to her neurologic issues. However, she also has Nystagmus, an involuntary movement of the eyes, which is related to the pathology of her brain. Her nystgamus was minimal enough that we chose not to treat it. However, after an alternative form of treatment, her nystagmus went away. If you want more information on the alternative treatment, just ask.
Chloe has been involved in many forms of treatment including intervention services, physical therapy, occupational therapy, speech therapy, hippotherapy, swimming therapy and music therapy. She uses a lot of special needs equipment, such as her wheelchair, DAFO's, a stander, Benik splints on both hands, and other assistance devices. She is non-verbal, so we've been training her on touch screens with games so she can one day use a speech device (think Steven Hawking). We've also tried many forms of alternative therapy, but have found Anat Baniel Method (ABM) to have the greatest benefit - if only insurance would recognize it as the valid form of treatment as it is.... or if only we were independently wealthy. Our hope is that we can one day afford ABM on a regular basis.
Chloe is currently in a head-start special needs preschool. Sending her to school was a huge step and a scary step, but it has been a wonderful thing for Chloe! She is such a social butterfly and this is a wonderful place for her to make friends, learn, and get excellent care and therapy.
There have been many times, quiet moments with Chloe, when I feel those angels surrounding us again, holding my hand, bringing peace amid chaos, encouraging us to believe in miracles and to never, EVER give up!
I have come to that normal is a relative term. I now recognize that although this journey was unexpected, it is wonderful. Chloe is a blessing to everyone who knows her. Chloe has every reason to be sad, but she is happy, so there's no reason for us to be sad for her -- and certainly NO reason to be sad for ourselves.
She teaches us to enjoy the journey, be grateful for every moment, believe in the impossible, and keep things in perspective. I am so blessed to be her mother. Through her big baby blues she communicates perserverence, determination, hope, love, and just everything good!
Although we have had some negative experiences with ignorant people, most of our experiences involving Chloe and her special needs have been very positive. Probably the most common thing I hear is, "I don't know how you do it." I think so many see this life as something people must endure, but it is so misunderstood. This life is such a blessing and I wouldn't change it if I could.
Chloe has prodded me to take positive action in many ways. Two big parts of my life that were inspired by Chloe. The kidz blog is a place for special needs parents to connect and collaborate. It has been a source of strength and friendship and a wonderful blessing in my life. We also started a non-profit organization called The No Child Left Out Project. We are planning to build a playground that is accessible to people of all abilities in our city. Our hope is to create a place where people with physical limitations are not only accepted or included, but celebrated! We have fund-raised quite a bit of money, but still have a long way to go.
This song was written especially for Chloe by Songs of Love. It explains so much of her sweet, fun and unique personality.
You're amazing just the way you are
Zip-a-dee-doo-dah! Never, ever, ever give up Our little girl with big dreams Celebrating little things Chloe Gayle, remember - we love you. We love you!
Being a father has always been a dream of mine, to watch my children grow and be happy. From the day we were given bad news that Chloe might not sit, walk or be able to do all the things a parent wants their child to be able to do, I have struggled in dealing with that. But as I have seen her struggle, I realize that she needs me to be strong for her. I have come to understand that it's not what I want for her that is important, but that I will always be there for her and support her. I want her to chase big dreams, to give her any chance to do what she wants in this life. No matter what, she will always be my baby girl. Love you Chloe. -Dad
