One Mom's Journal
A Lot of Good Stuff to Know about Me
By: Camille O’Neill
“Aerodynamically, the bumblebee shouldn’t be able to fly, but the bumblebee doesn’t know that, so it goes on flying anyway.” ~Mary Kay Ash
Imagine with me……
What roles do you have in life? Are you a teacher? A para? A mother? A wife? A father? A husband? What fills your days? Now imagine, if you will, that in the past 3 years, you’ve had a few obstacles.
Three years ago, you were intubated in the ICU for a month. You couldn’t breathe on your own or eat on your own. You couldn’t even control your own body temperature…to do that, you had to be in a special warming bed. A constant morphine drip kept you sedated so you couldn’t fight the machines, and from time to time, you had to have medications through an IV to even keep your blood pressure up enough to keep you alive. When you were able to start breathing on your own, you still had oxygen running in your nose and a tube down your throat because you had forgotten how to eat by yourself. You had to start learning this all over again! After 2 ½ months, you finally get to go home. But, phew…are you tired or what?! Two days after you get home, the doctors become concerned that you are losing your sight and you have to go back to the hospital for surgery. Within the next 2 months, you lose all of your sight, but with the help of four surgeries and many exams under anesthesia, you are able to get a little bit of it back…but you have to learn how to use it all over again! And… you are only allowed to sit up in the recliner all day and all night because if you lay down, you could lose your vision again. You can’t walk or lay down. To get where you have to go, someone has to carry you. And you have to wear casts on your arms so that you don’t accidently hit your eye and lose your vision again. This goes on and on for ten months! By the time you are able to freely move about, you’ve lost all your strength—time to start over with endurance training and conditioning!
Fast forward. About 15 months later, you end up in the ER with severe pain in your face that has made it unable for you to get out of bed. It started out slowly several months before, but got worse and worse over time until you could no longer eat, drink, or even bear to stay awake. You have glaucoma in your right eye. After about two months, several medications, and a surgery, the pressure is finally under control and the pain is better…for a few months. The pain starts to get worse again. Your eye is dying and because of that, the pain is back. You finally have surgery to get it out and you feel a lot better!
By now, in the past three years, aside from your rough stint in the ICU, you have had ten surgeries and more exams under anesthesia than you can count. On top of it all, you are blind in one eye and have lost a lot of vision in the other. But you are figuring your world out.
How much time in the past three years do you think you were able to work, to take care of yourself, to take care of your kids or your family, and to do the things you had always done every day? How many days do you think you felt like playing and having a good time?
This is my story. A story of survival and troopery-ness! I tell you to imagine with me so that you can see why things have taken longer for me. While typical kids were living their typical roles—learning how to sit, stand, walk, talk, and have fun---the things that kids are supposed to do---I was surviving. But look at me now!! I feel good and look at me go—I am making great strides and running the race to catch up.
Believe in Me.
“When in doubt, treat her like every other little girl and she will be just fine.”
My parents were really, really scared when I started to lose my vision, and this is what they were told. They were afraid there were a lot of things I wouldn’t be able to do and they were afraid that they wouldn’t know how to take care of me.
Well, though I am different than most kids, I really am more the same than I am different. Mom and Dad have learned that I may have my own timeline, but kids like me catch up and do great things in life. We have met them as adults. Isn’t that cool? Anyway, they also understand that people who take care of me might be intimidated, too. But, have no fear. I’m really just a kid who happens to be visually impaired. If you’re good with kids, you’ll be good with me.
So, the best thing you can do is believe in me, expect the most out of me, and love me.
FAQ’s About my Vision
What caused my vision loss?
I started losing my vision about November of 2004 due to Retinopathy of Prematurity (ROP). This is a disease that occurs in micropreemies. Extreme cases like mine are rare. In a preemie’s eyes, blood vessels can begin growing abnormally and can swell up near the time of 40 weeks gestation. When this happens, laser surgery is used to try to stop the abnormal growing of vessels. In some cases, like mine, the laser surgery doesn’t work and blood leaks out of the vessels and clots, pulling the retina off of the eye. (The retina is the membrane in the back of the eye that channels signals of what we see into the optic nerve and to the brain. If the retina becomes totally detached, a person becomes totally blind). Eventually, the retina in my right eye became totally detached and my left retina became mostly detached.
What was done to get some of my vision back?
I had two laser surgeries in Omaha right after I got out of the NICU to try to stop the vessels from growing so weirdly. When those didn’t work and my retinas began to detach, I was sent to Royal Oak (Detroit), Michigan to Dr. Michael Trese, who has performed four different invasive surgeries to attempt to reattach my retinas. He was able to completely reattach my left retina! I still visit Dr. Trese every six months because he is the bomb. In May 2007, I had my right eye removed because of problems with glaucoma, shrinking of the eye, and pain. I have an implant that is attached to my internal eye muscles and a prosthetic eye piece to go over the top!
What can I see and how is my vision different from everyone else’s?
This is the question that drives my parents nuts, and they won’t know for sure what I can see until I can tell them! They can make some pretty good guesses, though:
- I can see enough to tell my mom and dad bright colors, shapes, and most of my letters already!
- Cover a cardboard toilet paper tube with Saran Wrap and smear that with Vaseline and look through it while covering your right eye. Not only have I lost the vision in my right eye, I likely have decreased peripheral vision in my left because of my disease process and its treatment. Because some of the cells in my retina were destroyed, I will likely not have clear vision, even with glasses.
- Because I bring objects up close to my face, my best detail vision is probably up close. Please don’t discourage this, even if it is the TV. It is how I adapt.
- I may tilt my head differently to look at things, and this is okay. It is how I make up for patches or blind spots in my vision.
- My vision may fluctuate throughout the day, and may get worse with fatigue.
- It takes longer for me to adapt to changes in lighting than most people, and I may sometimes be more sensitive to bright lights.
- Because of my surgeries, I developed a cataract in the lens of my left eye (good eye). I had to have the lens removed and an artificial implant placed. I wear a bifocal lens in my left eyeglass to make up for the loss of my natural lens. I need to wear my glasses all of the time.
- When I am looking at you, it looks like I am looking off to the side. I am adapting to make the most of my vision.
- I seem to be able to see large objects at somewhat of a distance and smaller objects within about three to six feet. It’s hard to tell if I see things, or if I just have a good memory about where things are.
- I love to look at pictures in books, but it is best if they are bright and simple; visual clutter is often hard for my eyes to sort out.
- I can see your facial expressions if I am within about 1-2 feet of your face.
Will I ever be able to get more of my vision back?
- We don’t know. My doctor’s team in Detroit is working hard on research to grow new retinas and also on research to implant chips into the retina to allow vision.
- Even if these things don’t work out, I can live a fulfilling and successful life. There are many things to help me be independent, and I have a ton of potential. My family, my friends, and you can help me to realize that.
Do I have other problems with my vision because of ROP?
Because of the many surgeries in my right eye and the scarring inside, I have had problems with glaucoma in my blind eye (high pressure in the eye). The high levels of pressure can be very painful. I never had any trouble with this until Summer 2006, and because of the damage done to my right eye because of my ROP and glaucoma, I had it removed in April 2007. My mom and dad watch for signs that pressure may be high in my left eye. Thank goodness I haven’t had any problems with the pressure in my good eye yet! Signs that my pressure could be high are:
· inconsolable crying
· burying head in hands
· not opening eyes at all
· extreme light sensitivity
· wanting to sleep all of the time
· aversion to touch when crying
· not wanting to eat or drink anything over the course of a few days
· sensitivity to having my hair combed, head touched or teeth brushed.
Please call my mom and dad if I am having issues that seem unlike my normal pre-school like self.
July 12, 2004 10:29 pm: Happy Birthday to me! Born at Methodist Hospital in Omaha Nebraska, 25 weeks, 2 days gestation, or 3 ½ months before my time. I weighed one pound, thirteen ounces and was 13 inches long. My sister, Hannah Mae, was born at 10:29, just before me, and my brother, Samuel John, was born just after me at 10:30 pm. We were all about the same size. There were about twenty people in the delivery room to get breathing tubes in and get us off to the Neonatal Intensive Care Unit at Children’s hospital safely.
- July 13, 2004: Mommy and Daddy got to see us for the first time other than the quick fly-by at birth. We were all on high frequency ventilators to breathe and lived in incubators that looked like spaceships to control our body temperatures since we couldn’t do it ourselves. We were all getting many medicines through IV’s to keep our blood pressure up, keep us comfortable, and help us to get nutrition. I had my first surgery that day…a central line put into one of my arteries so that I could get blood transfusions and have lab testing every hour. I still have a scar on my chest today from my central line.
- July 14, 2004 Whoopee! Sammy and Hannah and I were baptized today inside our spaceships by Fr. Gary Ostrander. I had water poured over my head from a little seashell that the NICU nurse, Ginger, let my mom and dad pick out.
- July 17, 2004 I tried to be good for the nurses today because Hannah’s heart almost stopped working because her lungs weren’t working well. There were lots and lots of doctors up here. I am sad.
- July 18, 2004 Hannah was much better today, so the nurses helped us make footprints for mom and dad. My first art project!
- July 19, 2004 Today I got my first feeding of mommy’s milk from a tube in my nose.
- July 20, 2004 I graduated to a conventional ventilator (a less critical one). Mom and dad got to change my diaper for the first time. My first diapers were called wee-pees—cute, huh? They were about the size of a deck of cards---and too big!!
- July 22, 2004 Samuel became my new guardian angel today. Mommy and Daddy told him that it was okay to go home to God because he got really, really sick from a bad infection in his belly. The doctors could not help anymore. I really miss his spaceship being next to min
- July 24, 2004 Daddy turns 32! Happy Birthday to Dad!
- July 26, 2004 Mommy and Daddy went back to Sumner today to take Sammy back. They said Great Uncle Fr. Jack gave him an awesome going away party at the church in Eddyville.
- July 27, 2004 Mommy got to hold me for the first time today! It was called Kangaroo Care. I was in my diaper and got to be skin to skin with mommy so she could keep me warm. It took three nurses to get me out of my spaceship and to mommy because I still had my breathing tube in and my central line and IV’s in. (and I wasn’t even two pounds yet!) It was fabulous!
- July 28, 2004 Daddy got to hold me for the first time today!
- July 31, 2004 I weighed 2 # 2oz today!
- August 5, 2004 We had to say goodbye to Hannah today. Mommy and Daddy let her go home to God and Sammy because her lungs were really bad, her brain had a lot of blood in it, and her heart had a hole that wouldn’t close. I miss her, but I know she is my special angel now.
- August 8, 2004 I wore my first outfit and graduated from Wee-pee to preemie diapers because I kept peeing out of the wee-pees into my spaceship.
- August 12, 2004 I am one month old today!! Whoopee!!
- August 13, 2004 I came off of the ventilator today and breathed with only oxygen!! The nurses told me this is superb for a baby born as early as me.
- August 14, 2004 I had to be put on CPAP, a step down from the vent. This breathing thing is hard!
- August 18, 2004 Off of CPAP and back to oxygen alone!
- August 19, 2004 Mom and Dad’s 4th Anniversary. I got my first bath to celebrate. No more IV’s!! Whoopee! Free at last, free at last!
- Augst 21, 2004 I am three pounds today! Back to CPAP yesterday—ICK!
- September 1, 2004 Back to oxygen only ---for good!
- September 2, 2004 Mom and Dad can get me out of the spaceship by themselves!
- September 2, 2004 Uncle John is the first non-parent to hold me. Aunt Colleen and Grandma O’Neill followed on the 3rd, Grammie and Pappie on the 5th.
- September 6, 2004 I got a big-girl crib today!
- September 8, 2004 I am off of oxygen! I can do it on my own. I got to nurse for real today!
- September 12, 2004 Two months old!
- September 12-September 25: Feeding and growing, feeding and growing.
- September 25, 2004 I got to come home! I am 4 # 7 oz and it is four weeks before I was supposed to be born. I have no oxygen and no medicines. It is really sad to leave my nurses and my doctors, but I got to see my house, my crib, my room.
- September 29, 2004 Back to Children’s hospital. I had to have laser surgery on both eyes for the beginning stages of ROP (Retinopathy of Prematurity). Dr. Arkfeld said it does the trick for most kids.
- October 12, 2004 Back to Children’s for more laser surgery on the left eye. Dr. Arkfeld said the right eye has some bleeding and will no longer respond to laser surgery. Mommy and Daddy are shocked. It is my three month birthday (-1/2 month corrected).
- November 2, 2004 First trip to Dr. Michael T. Trese’s in Royal Oak, Michigan, an expert in treating advanced ROP. We drove 15 hrs in the van. Blood in both eyes now. Will have to go back next week for exam under anesthesia.
- November 4, 2004 Happy Birthday to Mom--#28!
- November 8, 2004. Exam under anesthesia back in Detroit by Dr. Trese showed total retinal detachment in right eye, near total detachment in left. Had surgery in the left eye to try to reattach the retina, stayed the week in Detroit, returned to the hospital on November 12 for surgery on the right eye.
- Welcome, Jayme Wratchford, my super-dooper Teacher of the Visually Impaired!
- November 30, 2004 Flew to Detroit for check with Dr. Trese. Left Retina reattached, right still detached. Mom and Dad were thrilled. Happy Holidays!
- December 25, 2004: Happy Birthday Jesus, #2004! My first Christmas!
- January 4, 2005 Flew to Detroit. Left eye looks good. Scheduled to go back at end of January for exam under anesthesia.
- I am eating cereal and I hold my bottle all by myself!
- January 31, 2005 Drove back to Detroit. Vitrectomy surgery in the right eye to remove blood and scar tissue. Left eye still looks good.
- February 14, 2005 I flew with Mom on Valentine’s day to Detroit to see Dr. Trese. She said I was too little for chocolate! Things with my eyes about the same
- March 2005 Flew with Daddy to Detroit. Eyes stable. Back in May for exam under anesthesia.
- Sweet potatoes for Easter!
- April 19, 2005 Back to Detroit with Mommy. Eyes stable. Still blood in right eye.
- May 10, 2005 Back to Detroit with Daddy and Mommy over Mother’s Day. Surgery in right eye. Got first tooth that weekend on the 15 hr car trip!!
- June 2, 2005: Cataract in good eye—yuck, more surgery! Removal with lens implant by Dr. Drake in Omaha at Children’s Hospital.
- Surgeries over for awhile. Now I can lay down to sleep instead of sitting up and spend time on my tummy. I have some making up to do because I got weak from not being able to be on my belly or back! Whew! Being a baby is hard work!
- July 6, 2005: Mommy tired and grumpy. Trip to Dr. Robertson’s with Mommy and Daddy tells us why--- I am going to have a baby brother or sister!!
- July 12, 2005. Happy birthday to me! I am one! Mommy and Daddy and Aunt Colleen celebrate with me at the house with pizza and cake.
- July 15, 2005 Happy birthday party to me! About 60 people came to the house to wish me well and watch me demolish my birthday cake. Did I mention that I am sporting new glasses? This party was to thank all of the people that had been praying for me from day one!
- Rolling all over!
- November, 2005: Army crawling like a champ!
- December, 2005: Happy Birthday Jesus! By the way, I love the presents!
- January, 2006: I sensed change was coming in February. Am strong-willed. Went on a fluid strike—I showed them by not drinking until 5:30 PM At night every day. Mom and Dad freaked out.
- February 10, 2006: Olivia Ellen born. I am not going to win. Fluid strike over. I also decided to do four-point crawling, lots of pulling to stand, and started climbing the stairs to get attention.
- February 28, 2006: Mommy, Daddy, Pappie, Livvy and I drive to Detroit for exam under anesthesia. My left eye looks great!
- March, 2006: I love to swim!
- Easter, 2006: We visited Aunt Carol at Mayo Clinic. She is my godmother. She has lung cancer even though she’s never smoked. She’s doing very well, but we still pray for her.
- June 2006: Daddy takes me to Detroit for check-up. AOK! I also traveled to Pennsylvania to visit my Aunt, Uncle, and cousins. I am quite the traveler!
- July 12, 2006: Happy birthday to me! We sent balloons up to Sam and Hannah and had cake!
- July 15, 2006: A ladybug birthday party at Grandma’s in Sumner. I ended up in the ER with a glaucoma attack.
- July 19, 2006: Tubes in the ears. Eye pressure still high. Yuck!
- July 21, 2006: Laser surgery to decrease the pressure in my eye in Omaha at Children’s hospital.
- September 2006: I am finally getting back to my old self after that nasty glaucoma attack….now on to bigger and getter things like humming songs, crawling all over, and getting stronger again
- September 25, 2006: I made my debut as a flowergirl in my cousin Nichole’s wedding in Pennsylvania!
- December 2006 through April 2007: My language really begins to take off. I went from about 30 words before Christmas to more than you can count by April. I also can now identify colors, shapes, and some letters already!
- May 2007: Due to pain and shrinking of my right eye (my blind eye), I had it removed and an implant placed at the University of Iowa Hospital.
- July 2007: I got my pretty new prosthetic eye!
- June-August 2007: I am walking on my own and getting good at it! Oh yeah!
- August 5, 2007: I am standing up in the middle of the floor without any help at all! It sure is easy to do work when I don’t hurt anymore!!
What I like
Music: Singing and Listening to (Especially BINGO, The Alphabet Song, Itsy Bitsy Spider, Five Little Monkeys, Six Little Ducks, The Wheels on the Bus, This is the Way we ____, Head and Shoulders, Knees and Toes, Twinkle Twinkle Little Star, You are My Sunshine, Baby Bumblebee and more)
· Playing with Shapes (I know triangles, rectangles, circles, squares, ovals, hearts, diamonds and octagons)
· Water, water, water and splashing, splashing, splashing
· Reading books, especially tactile books and books with simple, high contrast photos
· Did I tell you I like to sing and read books?
· Independent exploring
· Air blowing
· Stroller rides and wagon rides
· Time alone when I’m tired
· Being swung in the air and other movement activities
· My stuffed cow
· Climbing on playground equipment…using the rails
· Eating waffles (I try to use utensils but I sometimes need help with loading the fork and spoon).
· Being talked to close to my face (quietly)
· Laughing and tickling
· Toys with lights and music
· Toys that I can climb up to
· Instruments (xylophone, piano, maracas, tambourines)
· Touching things with interesting textures (finger paint, yogurt, all my food, different carpets and tiles, squishy balls, etc).
· Examining things and people very closely
· Using my green racer (walker) when I get tired of walking on my own
· Looking at your expressions very closely.
· Exclamatory words (Boomers, Bonkers, Squish, crash, Oh my Goodness, Goodness Sakes, Goodness Sakes Alive, Oh boy, EEEwwww, Pee-Yeew) These make me laugh when you say them and I say them.
· Crashing into pillows
· Playing with “Fridge Phonics”
· Simple puzzles.
Good Things to Know About Me
- I don’t see like everyone else does. Thank you for talking to me a lot, explaining to me what I cannot see.
- A good way to get me to calm down is to whisper to me or ask me to blow, or blow two times really quickly right on my bangs. I love it when mom does this and it makes me laugh. I like to pray, and if you whisper, “Please God, help me be brave,” over and over, it helps. It has gotten me through a lot of things!
- I rely on my hearing a lot so sometimes lots of noise overwhelms me. It’s okay, I need to get used to it, I just may need some reassurance and some extra time adjusting.
- I have been through a lot of surgeries, hospital visits, and doctor visits in my lifetime. New people and places are scary to me sometimes because of this and the fact that I can’t use my vision to make sure that I’m in a safe place. Please help me by being patient, reassuring me with explanations, and knowing my favorite things. I’ll adapt in time.
- Don’t let me fool you. I am shy, but I am bright. I know a lot of my shapes (rectangles, triangles, squares, circles, hearts), colors (blue, green, yellow, red, orange, black, pink, purple, white), and letters (A, B, C, D, K, P, O, etc, when they are high contrast and preschool-sized!) I can sing whole songs by myself and tell you what I want when I am encouraged to.
- I do a lot of talking at home, but don’t be surprised if I am quiet in a new or busy environment. I listen a lot to find out what is going on. PLEASE do encourage me by asking me questions and waiting for my replies.
- PLEASE encourage my interaction with other children. It is so important. My social skills will be different than those of sighted children because children rely on their vision a lot in play. But… I can develop really good social skills if I have a lot of help when I am young.
- I am shy and will be perfectly content off by myself. While this is okay sometimes, please don’t let me do it too long as I will miss out on a lot of things!
- I am not potty-trained yet, but we are working on it at home. I have had a lot of medical set-backs lately which has made it hard, but I’ll keep trying. Please help me as much as you can.
- I am sometimes sensitive to very bright lights. I have sunglasses that clip over my glasses in case I need them outside. Occasionally I’ll keep a hat on.
- I am sometimes slow to warm up to new environments and new toys. With exploration and reassurance, I learn to love new things.
- It sometimes takes me awhile to warm up to new foods—okay a LONG while. I am a very picky eater. Please tell me what is being served to eat and drink and where it is on my plate. I may not eat it anyway, but at least I’ll know what’s there.
- I need to be directed when exploring things, especially if they are new. I don’t have the visual curiosity that most kids have from a distance, and I often can’t see well enough to make out “demonstrations” of how things work. So, my learning experiences often must be VERY hands on. If you have trouble guiding my hand with your hand over it, try introducing the object from underneath my hand, or start by touching my elbow and guiding me from there.
- My visual field seems to be very limited, therefore, things sneak up on me quickly and seem to “come from out of nowhere.” It helps me when you try to tell me before you touch me, wash my hands, wash my face, etc. I love it when you make songs of things “This is the way we wash our face, wash our hands, etc, etc.” This is also why an area where a lot of kids running is scary---I don’t know what’s coming until it hits me! But---you don’t need to protect me all of the time, just make sure I know what’s going on.
What we Know about Visually Impaired Children
- Visually impaired children can become successful adults with fulfilling lives.
- Research estimates that at least 80% of what a typical person learns is through the sense of sight. Loss of vision can be overcome and accommodated for, it just may take longer, especially areas such as conceptual development.
- Visually impaired people don’t automatically have heightened senses of hearing and touch. These are skills that have to be worked at. Having said that, visually impaired people do tend to develop these other senses to a higher degree than a lot of sighted people do.
- Children who are visually impaired from birth commonly have motor delays because the incentive to move to an object is missing.
- Children with low vision often lean over objects in order to try to see them better. Try to take the object up so the child develops better posture.
- Young visually impaired children often need help initiating socialization and taking part in play because they do not have the capability of mimicking play of their peers. They also often need help initially engaging in pretend play as they do not see the behaviors of their parents, teachers, etc in order to be able to mimic them.
- Visually impaired children often turn their ears towards someone when they are listening rather than looking at them. It doesn’t mean that they are not listening.
- Braille is an alternate form of writing and reading that should be encouraged with children who are very low vision or blind. Children can learn to read Braille as quickly as their sighted peers learn to read print. MUCH adaptive technology is also available to help people who are visually impaired. A child’s teacher of the visually impaired or her parents can help adapt the classroom and activities as the child grows. It is not a weakness to need to learn Braille; in fact, it is often a more efficient way to read, write, and do arithmetic for blind or visually impaired children and adults.
- A white cane (and early on, mobility toys) encourages independent movement and is to a visually impaired child what eyes are to a sighted person. Using one should be encouraged once a child is mobile.
- Children with visual impairments may have initial language delays, especially expressive, as they do not see things far away in order to name them and are unable to see mouth movements in order to imitate them. This can be overcome with practice, time and lots of hands-on experiences.
- Children with visual impairments often have a period of echolalia (repetitive language) that lasts longer that it does in sighted children. This does not indicate that anything is wrong, but it does help to encourage meaningful interactions.
- We know a lot more than this, but mom is out of ideas. Please ask mom or dad anything if you need to.
Please do not ever hesitate to contact us ANYTIME at any of the numbers below if you have any questions or need anything.
(Mondays, Wednesdays, Fridays only)
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