Wonder Baby

Ivan Kapi'i Bobnar was born June 11th, 2005. Soon after birth, Ivan was having trouble breathing, and, after hooking him up to monitors, we discovered that his blood oxygen saturation was very low.

We spent the first week of Ivan's life in the hospital, then we were sent home with monitors, oxygen canisters, and medication. The doctors were confused but assured us that he would grow out of these respiratory problems (which included apnea and reflux) as his system matured. We were very anxious but also very happy to have Ivan home.

His breathing problems did pass, but by the time he was 2 months old and not focusing on objects we were worried about his eyes. We were told to wait until he was 3 months old. He still wasn't focusing and that's when the crazy stream of doctors' appointments began. Most of his doctors assumed Ivan had LCA (Leber's Congenital Amaurosis), and that was confirmed with an ERG in July, 2006. (You can read more about our ERG and Ivan's LCA diagnosis here.)



Ivan is happy! In the summer of 2008 we attended an LCA conference and felt that Ivan, then three years old, just wasn't keeping up with his peers. So we began scheduling more doctors' appointments and tests and by late 2008 Ivan was diagnosed with Joubert Syndrome along with the already diagnosed LCA. Ivan began seeing a geneticist at Children's Hospital Boston and we soon discovered that he had a mutation on the CEP290 gene that is often associated with both LCA and JS.

But Ivan's trials weren't over. When he was about three and a half years old he began losing his speech and by the time he was four he was completely nonverbal. Ivan had gone from a boy who had over 100 words and was beginning to put two- and three-word sentences together to a boy with no language at all in about six months.

More doctors' appointments led us to a diagnosis of Landau Kleffner Syndrome, a language processing disorder caused by sub clinical seizures in the language center of the brain. Of all the diagnoses Ivan has received, this one was the hardest to take. LKS took Ivan's speech away from him, along with much of his physical and cognitive skills. Seizures are nasty, nasty things.

In 2010 Ivan had his first sustained tonic-clonic seizure and we knew his epilepsy was getting worse. It was a frightening day, and we are still playing the medication game trying to find the right combination and dosage. I'm happy to report that his last 24-hour EEG was spike free!

Through it all I've learned that regression is a bad word, but that it often comes hand in hand with disability and that we should appreciate everything we have now because life is fleeting. I'm also impressed everyday with the grace and strength with which Ivan faces his challenges and I am determined to help Ivan be the best Ivan he can be!

WonderBaby.org, a project funded by Perkins School for the Blind, is dedicated to helping parents of young children with vision impairments as well as children with multiple disabilities. Here you'll find a database of articles written by parents who want to share with others what they've learned about playing with and teaching a blind child, as well as links to meaningful resources and ways to connect with other families.

If you would like to link to WonderBaby, please click here.

I began this site in 2006 when my son, Ivan, was only one year old. He had just been diagnosed with LCA, a rare retinal disorder, and we were desperately searching for support and answers. At the time I thought it might be a good idea to gather everything I found into one place.



In 2011 WonderBaby teamed up with Perkins in order to provide more features and support for families through the internet. My original intent for the site was just to link to resources I found on the web, but before I knew it I was writing more and more about Ivan and all he had to teach us! I soon learned that other parents were experiencing this too... we all know that our children are full of wonder and they amaze us every day. As we focus on teaching our children all they need to learn in order to be as independent as possible we are often surprised to find out that we are learning so much from them!

If you want to share your story or have any ideas or advice for other parents, we'd love to hear it! Please contact us!

Finish Box

Since Carver is Blind/Deaf, it's important that we teach him that things don't just disappear when they are no longer in your hands. So, we keep a tin cake pan next to his chair. We call this the "finish box". He is able to use his Cochlear implant to hear when something falls into the tin cake pan. Then, if he wants something to play with, he knows where he can find it. He is supposed to put things in the tin pan when he is finished playing with them.

I'd say he's getting pretty good at using the "finish box".

That's a big pile of finished toys.



Guest post from the blog Kinnick Kay and Carver Lee. Thank you for sharing!

Chase's Pace

Meet Hannah

By Jenn of My Little Rays of Sunshine.

Hi! I m Jenn. Thanks for reading our story!

I guess I'll start from the very beginning.
Four years ago I married my high-school sweetheart, Matt. He proposed in November, and we were married in February. We had a total of seventeen people present at our wedding. (Just our immediate family), and that s how we wanted it. Something fast. Something simple. We just wanted it done.

We knew we wanted children, so just a few months later we were expecting our first. Nine months after that Gracie Lynn entered our world. She was a joy. She was perfect. So much fun! We loved every little bit of having a baby around, so we figured we d have more. She needs a playmate!
How about we time it so they ll all be about eighteen months apart? Maybe we could have four, or five?
Our plans had begun!

Almost exactly eighteen months later, I delivered a very healthy, 6lb, 11oz Hanna Marie. Another perfect little girl.

My mom noticed when visiting us at the hospital that Hanna s thumbs appeared crooked. She seemed to hold them in her fists a lot. We asked the nurse what she thought about it, and she laughed and said oh, yeah! Hm...I'm sure they re positional, it's probably because she had them clenched in her fists for the past few weeks before she was born. They'll straighten out with time So, we let it go.
We got to go home, and show her off to everyone, and we were completely thrilled. Gracie was so proud to be a big sister. She couldn't be close enough to her new baby. She stayed by her side always, and didn't stop kissing her.

I had noticed in the hospital that Hanna had involuntary movements of her eyes. We were told that infants don t have complete control of their eye muscles until they re three months old, so we should just give her some time.
She didn't look at me when she nursed, and she didn't seem to notice toys or anything. It really bothered me. But we waited.
She was 10 weeks old when I found a website that had a little girl who's mother found her eye cancer by looking at a photograph of her. Her eye didn't have a red reflex like the other one did, and it appeared to have a white pupil.
Being the paranoid mother I am, I started looking at pictures of Hanna. In almost every picture of her, there was only one red reflex,
and one white pupil. My heart sank. I immediately started thinking the worst. I wasn't waiting any longer.

The next day I made an appointment with an optometrist. We were in his office two very long days later, and he saw a "mass" in one of her eyes. He had us go directly to an ophthalmologist to have her examined immediately.
This doctor was so cold-hearted, and had no bed side manner whatsoever. She made me hold down my screaming 10 week old while she poked and prodded at her. Matt stayed in the hallway with Gracie because she couldn't stand to hear her baby sister screaming so hard.
She then threw this at us:
Hanna had a "mass" in each of her eyes, which may be cancer, and probably some sort of syndrome because she doesn't look like her sister.
What?! She doesn't look like her sister, so she has a syndrome?
We left that office and didn't say a single word to that woman.
We didn't say a single word to each other.
We were devastated.
We were angry.
We didn't know what to think.
The same doctor wanted to examine Hanna again the next day, but this time in the NICU so she could sedate her.
I didn't want any part of that. I didn't want her touching my baby again.
I knew it was the right thing to do, and I knew it would get Hanna a referral to one of the best Children s Hospitals, and we wanted only the best for our little girl.

The next day, in NICU, Hanna had another eye exam. They ruled out cancer.
Thank God!
They said she probably has PHPV, which is commonly found in different syndromes, but they wanted another opinion.
Hanna was referred to SickKids Hospital in Toronto, and we saw another ophthalmologist. She had an ultrasound-type exam done on her eyes and she also told us that Hanna had PHPV.
She also noted that Hanna was microcephalic, which at the time, we had no clue what that was.
She referred us to Genetics to make sure there wasn't any more systematic abnormalities. She also wanted, yet another opinion. I figured the more people that looked at her, the better!
Next we saw a retina surgeon, and hoped he would be able to do something for her.
He looked in her eyes, and almost instantly ruled out what the other doctors were so sure she had! He told us that Hanna probably has a genetic eye condition called FEVR (Familial Exutative Vitreo-Retinopathy).
It is a progressive eye disease, which can lead to total blindness. He told us there was nothing that could be done, surgery wise, but he also said that you never know what the eyes are capable of.
We really liked him.
He also told us that he wasn't concerned for Hanna's health. She was small, but FEVR isn't usually associated with other abnormalities. He referred us to Ocular Genetics, and we left there feeling really good.
We were so relieved that it was only her eyes!

A couple months went by, and then we got the call from Genetics. We met with them and they examined Hanna looking for any abnormalities.
They noted her crooked thumbs I mentioned earlier, and that she was much too small for her age. She was diagnosed with failure to thrive and microcephaly.
They also heard a heart murmur. They referred her to MRI, for a brain scan, cardiology for her murmur, and X▴Rays of her hand for bone age, and to look at her thumbs.

What we thought was only an eye condition, most definitely wasn't anymore.
Now we were worried about her brain, her size, and her heart!
Her eyes became the least of our worries.

From then on, Hanna has had countless blood tests looking for possible metabolic problems, and chromosome testing looking for anything at all.
They can t find anything.

Her X-Ray came back with a bone-age much younger than her actual age. I m not too sure what that means, but they re not overly concerned.
The scan also showed that her thumbs have an extra digit. Like a finger.
So what!
She ll be a piano player!

Her MRI came back normal. Her brain structure is normal, but very small.

Her heart ECHO showed that she has three holes in her heart. Once again, they re not concerned. They should close up on their own in time.
They are keeping an eye on one in particular because it' s in the wall between the two chambers. It s very, very small, but it is possible it could cause problems.
She hasn't any symptoms yet, so her cardiologist is very optimistic.



At 16 months old, Hanna is not quite 15 pounds, and she is 28 inches long. She's very tiny, but that's about all they know.
We have been so grateful that all this testing came back so well. The doctors, on the other hand, are getting frustrated!
Anything they start to think she might have doesn't quite match up with her because she's hitting milestones.
It s like they want her to be delayed.
They want answers.
She's got them all puzzled.
I'm so proud of her! :)

CNIB (Canadian National Institute for the Blind) comes to the house once a month, and they completely thrilled with how great Hanna s doing.
She's not quite walking yet, but we were told that she is actually ahead of most blind children her age.
She doesn't have balance issues, she s just not confident enough to walk and explore on her own.
I think she's going to stick with crawling for a while.

She loves to dance, and sing, and babies, real or not.
She gives the best kisses, and hugs, and has the most contagious smile, and the best laugh ever!



She loves any music, and loves listening to her daddy play the guitar.
She's changed my world.
For the better.
She's definitely one of a kind. She's so special in so many ways, and I feel so blessed that I was chosen to be her mama.
Hanna has brought so much joy to our lives, and I wouldn't want our little mystery baby any other way!



To all the parents of special babies:

"Only special people get special babies."

I don t know about you, but that makes me feel pretty darn good. :)

Make Your Day Monday: Rex

Make Your Day Monday: Patrick Henry Hughes

A Wink From Heaven

A compilation of thoughts written by April Moody from the blog Wink From Heaven, which is about her son Caleb...

"If, therefore, thine eye be single, thy whole body shall be full of light." ~Matthew 6:22

I remember the night I found out that our baby Caleb had significant problems. We were faced with the unbearable possibility that our baby might not be born alive. During our first glimpses of him we were filled with worry and deeper heartache than I had ever felt before. The next day I remember telling my mom, "this isn't how I imagined my family picture." I didn't imagine hanging a family picture on my wall that had someone missing. I also hadn't pictured a child whose time may be limited and whose challenges would be severe. It wasn't that I didn't want a disabled child. I wanted Caleb more than anything in the world. I had the opportunity to voice how much we wanted Caleb in many of those early doctor appointments when they presented our options. I pleaded with Heavenly Father for the opportunity to take care of our baby no matter how big his challenges were. We wanted Caleb with all of our hearts, his circumstances just weren't what I had pictured.

I remember that phrase, 'This isn't how I imagined my family picture' every time I put a new photograph in a frame, add a picture to a scrap book, or hang a portrait on my wall. My heart is filled with so much gratitude every time I look at my sweet little family inside those frames. It wasn't what I had pictured, and it is so much sweeter than I could ever have imagined. I would never have pictured how proud I would feel of Caleb for his courage, faith and patience. I never pictured how full my heart would feel as I watch my other little boys lovingly watch over him. I never pictured how my sweet little boy, whose time may be limited and whose challenges are severe, would touch the deepest parts of our hearts and change our lives forever. Just yesterday Matthew told me, 'I just get such a big loving feeling inside whenever I'm around Caleb- and I just have to hug him!'

I took our little family into the studio for some last minute pictures before Caleb went in for surgery [last November]. The pictures aren't fancy, but nothing could be more beautiful to me. I would never have pictured the exquisite delight I would feel in hanging photographs of theses precious souls on my wall...

When I was pregnant with Caleb, we were so excited to find out what we were having for our third child, so our kind friend offered to do an early ultra sound so that we could meet our new little family member! As we were driving to the clinic, I started to feel extremely uneasy. I asked my friend if he would tell us if anything was wrong. He reassured us that he would and that he would probably say something like, "we'll need to talk to a doctor about this."

As soon as the ultra sound began, our first glimpse was of our baby's' head. I immediately asked "is it supposed to look like that?" Instead of seeing any brain tissue, it was completely black. Our friend said, "We'll need to talk to a doctor about this..."

I started to cry and tried to focus on other information he gave us-- we were having a BOY!!! We were counciled to set up appointments with doctors and specialists so that we could learn more about our special little guy. Our hearts were heavy that night as we worried about our new little boy and the challenges that were likely ahead.

Within a few weeks we decided we wanted to name our little boy so that we could pray for him by name. We named him Caleb Joseph! Caleb was a righteous Israelite in the Old Testament who was always faithful and was known for his fearlessness in the face of overwhelming odds.

October 2004:

Dear Caleb, you are not going to be born for another 3 months, but you are such a special part of our family already. You have such a strong and compassionate spirit. I have felt so close to you during this time as we have been uncertain about what your birth will bring. About a month and a half ago, we discovered that you have a great amount of fluid in your brain. Our hearts have been so tender as we contemplate the possibility of only having you for a short time. Our hearts ache knowing that you may have significant problems throughout your life.

In the midst of the uncertainty, there are some things I know for sure. I know that you are my son for eternity. I know that you have an important role to play in our family and that we are privileged to be a part of it. I know that you love us and that you are aware of the deep love we have for you. I know that the Lord hears our prayers and sees our tears....Although I don't fully understand why you have physical hardships, I know that you have a valiant and loving spirit. I really feel you at times comforting me and that you want me to know everything will be okay....

This past week we had an MRI which confirmed the missing corpus collosum, a blockage causing excess fluid, and that you are missing your right eye. Getting that information broke my heart because I don't want you to have one more physical obstacle....I know that your spirit is not limited and that you have a special mission...I have seen hearts change just when people find out about you...

January 6, 2005:

Caleb was born at around 10:30 AM. His little cry was music to my ears! I got a quick glance before he was passed through a little window into the NICU. I got another glimpse of him as I was wheeled into my recovery room, and he was being prepared for transport to Primary Children's hospital. He was beautiful! In spite of the challenges I knew were ahead, I was just tickled so see my new little boy. His spirit is so big, and he just radiates with love.

Dear Caleb, you are here my precious boy! I am so full of love for you, my heart can't contain it all. I thought my heart would burst when I heard you cry after you were born. When they held you up for me to see, it was like looking at an angel! I knew today would be a life changing day for all of us - and it was. My life has been forever changed for the better because you are in it. I only got to see you for a few moments, but those moments will be treasured for my whole life.

January 7, 2005:

Dear Caleb, Today we spoke with your doctor and he explained many things to us. Your brain has not formed. It appears there is little they can do but stabilize you and prepare you to come home with us.... they don't expect you to live for more than a few weeks....at this moment I don't think my heart can bear the thought of letting you go. How can I look into that precious face knowing that my time is limited? I just want to stop this moment in time and hang on to it forever.... I wish I could choose the outcome, but I know your eternal outcome is already known. I pray that your spirit knows how much you are cherished. Each day I have with you is a treasured blessing....

This morning I got to hold you for the first time! It was like being in Heaven! I couldn't hold back the tears as I held your sweet body in my arms. I just rocked you back and forth and tried to memorize every bit of you. Your sweet spirit just seems to heal my soul. It saddens me so much to know that I may spend much of my life missing you. Do you know how dear you are to me?...Do you understand that the hardest thing I will ever do is let you go?

Today was your blessing day. We were able to gather in a hospice room with Dad and I, your grandparents, one of my aunts and our bishop.

Your blessing outfit was huge on you but you still looked like an angel....there was such a special spirit in the room and your Daddy gave you a beautiful blessing....Each of us had a chance to hold you. It was such a special afternoon. That night you weren't breathing very well and we thought you were going to be put on the ventilator again. We were told to be prepared to decide whether or not we would want to do that or just let you go. My heart was in agony as I contemplated letting you go before I was ready. Fortunately, the doctors were able to reposition you and get you breathing again.

...as I was alone in my hospital room that night I was overcome with sadness. I just can't bear the thought of losing you...I want you to know how much I treasure you and although I don't understand why things need to be this way, I know that the Lord knows our needs and will comfort my breaking heart...

January 13, 2005:

One of my favorite days was Tuesday. Our doctor let Dallan, the boys and I take Caleb into a hospice room, and Josh and Matthew were able to see Caleb for the first time!

Normally no children under age 18 are allowed, but our sweet doctor has been so kind to consider the needs of our little family during this time. Josh and Matthew were so excited and I was so touched as I watched them hold and interact with their little brother. Josh was so tender with Caleb and just couldn't stop hugging him and rubbing his face against Caleb's face. His little spirit was so full of Joy to be with his baby brother. He didn't want to put him down. Matthew was so excited not to be "the littlest" anymore and just loved holding Caleb! He couldn't wipe the smile off of his face, and he loved playing with Caleb's little fingers. The boys were able to hold and snuggle their baby for two whole hours. As parents, our hearts were so touched to have such a special time together, because even when he's home, Caleb will have to spend most of his time under an oxygen mask.

The past few days have been really full as we've been learning how to use all of the hospice equipment so that we can take care of Caleb at our home.... We are so excited to get to be near Caleb everyday! We know that even though we are overwhelmed with how we will be able to keep up with 24 hour care, our family is so blessed to have this little miracle in our lives.

Caleb was in the NICU at primary children's hospital for 8 days. He was so sweet and patient with all of us. He only needed a ventilator for a few days, then was able to breathe with supplemental oxygen. It became apparent to all of us that there was nothing more that could be done for him in the hospital, so we prepared to take him home.

It was overwhelming at first to bring Caleb home. We were surrounded by a host of hospice helpers, learned how to use a kangaroo pump, run the oxygen equipment, and tried to keep Caleb as comfortable as we could. We were counciled to pick out a burial spot, and we did. We worried if each day would be our last.... We had a birthday party for Caleb every week to celebrate his time with us, and we realized we wanted our time with Caleb to be JOYFUL. We decided not to let the medical community take our hope away. We decided that we could celebrate each day and have hope for the future instead of grieving.

January 18, 2005:

Josh loves to hold Caleb's hands and we often find him just quietly watching over him. Matty likes to sing Caleb the ABC's over and over again. We're trying not to look too far into the future and are just enjoying each day with our little miracle - even diaper changes are just sweet and fun!

Caleb has brought an overpowering spirit of love into our home. We feel so honored to be with him. Every time we change his diaper, rock him in the rocking chair, kiss his soft little cheeks, or even just stare at him through tear filled eyes -- we are reminded how much Heavenly Father must love us to bless us with this time with our little miracle. Our hearts are wrapped so tightly around our little baby. We are just so in love with him!

He responds so much to love....

and as we hug him, sing to him, or stroke his little face - his oxygen levels and heart rate always seem to improve.

Caleb has taught us what perfect love feels like. I have watched the way people linger at his crib side and didn't want to leave his presence...

April 2008:

If I knew I had to say goodbye to any of my sweet boys, what words would I want them to hear from their mom? I've asked myself that question numerous times especially during tender times with Caleb. It seems like there should be a bigger way to say "I love you"- Where are right words to say that I love them so much that it takes my breath away- that I love them so much that sometimes it even hurts- that I love them so much that my heart wants to beat for them? I know that before they were born just the "hope" of them filled my heart with joy- that when I was expecting I loved knowing that they were growing right next to my heart- and now that they are here, my heart is wrapped so tightly around them that I can't breathe.



I took Caleb to the doctor today and spent the afternoon having chest x rays. He did aspirate and as a result has Pneumonia. He isn't moving air through his lungs very well. He is on a big dose of antibiotics and is in need of a lot of supplemental oxygen. My heart has been tender as I've wondered what I should say to Caleb today. How do I tell him how dear he is to me and how proud I am of him?

But then when I wrap my arms around him, and when I'm really still, I can feel his heart telling me that he knows- and that...

"I love you" is enough.

January 2009:

I have sweet moments with Caleb when I know that I live with an angel. Even when Caleb is so sick that he can hardly move...he still has a miraculous effect on people. During his last hospital stay, I was so touched by the visitors Caleb had...visitors from within the hospital. Many doctors, residents and nurses who have met Caleb before, would come by day after day to check on him, stand by his bed for a moment, and feel his sweet little spirit. Caleb couldn't walk or talk with them - He touched their hearts... and they felt it. I felt it. One told me she had never been so touched and inspired before. I know. Me too.


This last visit was 13 days long. Nine IV's later...and Caleb still shines. I live with an angel, whose feet have never left the ground.

My 2nd little boy, Matthew, would often tell us that Jesus peeked in our windows...I know that the Lord has kept a close watch on our little family as we have been on this journey together...

Caleb is currently 4 years old!

He continues to remind us to find JOY in our journey every day!

We aren't sure how much he can see out of his eye, but we know he responds to light. We are also unsure of his hearing abilities, but I see him respond to my voice, to music, and sometimes to loud sounds. Caleb has a trach to help him breath. He also has a shunt to help drain the fluid from his brain.

Caleb is currently on Phenobarbital (seizures), Levothyroxine (thyroid) Previcid (reflux) Baclofen (muscle relaxant) and atrovent (airway) We have had him on topamax, zantac, and erythromycin, but have since weaned him off of them. We also tried Helmet therapy to help with the shape of his skull, but decided it wasn't worth making him uncomfortable when only minimal results were expected. We have also opted not to have surgeries for his cleft palate at this time.

Caleb is a peaceful and patient little boy. His whole countenance shines! He loves to be LOVED. He loves it when I rub his feet, sing to him, and snuggle him. He is so patient with us and he is patient with the challenges he faces in his little body. Even when he has hard days with his respiratory system, seizures or feedings, his little spirit still shines through. He loves to be surrounded by his family and he loves to hear our voices. He also loves it when he is well enough to be outside to feel the sunshine on his face.

For Caleb, touch is largely how he experiences the world. I've helped him splash the water in the bath tub. I've put fall leaves in his hands and helped him crunch them. I've brought snow inside and helped him build a little snowman on a cookie sheet....I've wrapped his arms around my neck and held them there when we've needed a hug...I've put his hands on my cheeks and let them melt to my skin. He loves it when I rub his feet, rub my face in his hair, and rub his chubby tummy. Caleb loves to be touched!

Our biggest goal is to simply surround Caleb with our love...

We have a vision specialist/preschool teacher who visits him twice a week. I have a consult with a physical therapist and Occupational therapist once a month so that I can continue to keep his body stretched and comfortable. Overall, though, I know that Caleb grows and responds the most to LOVE! I know that he has a happy spirit and that he wants our time with him to be joyful!

We are so thankful for our little miracle. The overwhelming love we feel for him gives us just a glimpse of the way that our Heavenly Father loves us. The tenderness of knowing our time with him will be limited is also surrounded by so much sweetness. I wish there were a "heart language" that could portray the sweetness that surrounds us as we watch our 3 boys love each other, as we feel Caleb's sweet little body in our arms, and as we feel the love that has filled our home to overflowing.

My biggest sources of inspiration are prayer, other parents, the scriptures, and music.

Two of my favorites songs are:

"I Feel My Savior's Love"

and "Consider the Lillies."

The lyrics:
Consider the lilies of the field,
How they grow, how they grow.
Consider the birds in the sky,
How they fly, how they fly.

He clothes the lilies of the field.
He feeds the birds in the sky.
And He will feed those who trust Him,
And guide them with His eye.

Consider the sheep of His fold,
How they follow where He leads.
Though the path may wind across the mountains,
He knows the meadows where they feed.

He clothes the lilies of the field.
He feeds the birds in the sky,
And He will feed those who trust Him,
And guide them with His eye.

Consider the sweet, tender children
Who must suffer on this earth.
The pains of all of them He carried
From the day of His birth.

He clothes the lilies of the field,
He feeds the lambs in His fold,
And He will heal those who trust Him,
And make their hearts as gold.

Some talks that have recently inspired me are: The Ministry of Angels by Jeffrey R. Holland, Come What May, and Love It by Joseph B. Wirthlin, and The Infinite Power of Hope by Dieter F. Uchtdorf.




***Caleb is having surgery today to get a G-tube to help him eat, and a nissin to help with reflux. Please keep your thoughts and prayers with Caleb and his family. Visit their blog, Wink From Heaven, to send them well-wishes and to thank them for sharing their special story.

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