Tuesday, April 24, 2012

Sun Protection for Kids with Albinism

When we were told that Liam had Ocular Albinism my thoughts about it being “only in his eyes” reflected also how I felt about the need to protect his skin from the sun……
If it’s only in his eyes why do we need to protect his skin too?

But I was quickly informed by our Genetics doctor that even children with only Ocular Albinism are very sun sensitive and need to have their skin protection on daily. They, just like people with OCA, are still very susceptible to sunburn and some types of skin cancer. So, I immediately began trying to find the best way to protect Liam’s little body from the harmful effects of the sun. I have found that there are three main things we use as sun blockers the most: sunscreen (of course), sunglasses, and sun hats.

GLASSES
Since Liam’s glasses are transition lenses we did not have to search out a good pair of sunglasses for him but I did find a great website for infant and toddler sunglasses for children who do not use glasses for the purpose of correcting vision already. I will be buying us several pairs of these, since at the beach and at the pool I don’t feel the need to take along Liam’s expensive pair of glasses when he is just going to be in and out of the water.

The site I found I love best is babybanz.com It was created by a dad in Australia who wanted more sun protection for his little one and that I can respect. They have great color and size choices and ship almost anywhere. Their glasses are very dark and have a band to strap around the child’s head to hold them in place. They also extend far back on either side of the child’s eyes to offer complete protection (like goggles) for their eyes. (Most of their pairs are around $15-$17, very reasonable I think!)

HATS
The best thing about hats: you can find them anywhere! The best ones are the sun hats whose lip circles the entire brim of the hat and if you can find infant ones with straps under the chin that’s even better!

SUNSCREEN
Sunscreen for any child is very important but sunscreen for a child with any form of albinism is even more important. When I started searching I didn’t know much about the SPF reading on sunscreen bottles, and I had always thought that the higher the number the better. I had also thought that sunscreen and sun block were the exact same thing. This is not the case. Sunscreen typically refers to a formula that is absorbed into the skin (usually chemicals) that then block out the harmful UV rays of the sun, whereas sun blocks typically refer to a mixture that sits on top of the skin to form a barrier that blocks the rays from the sun. Usually sun blocks contain some levels of zinc oxide and titanium dioxide which are the two main ingredients you want to look for in any sun protection bottle. Any sunscreen/block with these two ingredients in them will protect from both UVA and UVB rays. Since Liam, like his momma, has very sensitive skin I prefer to use sun block since they do not absorb into your skin like chemical sunscreens do, giving less chance for an allergic reaction or rash to form. I have also found that the proper amount of SPF in any sun block for normal infants should be between 15-30, but for a child with albinism the SPF needs to be between 20-30. Anything over an SPF of 30 typically has less of the sun protecting ingredients and more chemicals than you would want on your child’s skin and may cause it to become less effective against the sun. You should always make sure to wait 15-30 minutes if you choose to use sunscreen since it takes time for the chemicals to be absorbed into the skin unlike sun block which starts protecting your skin the moment it is rubbed on.

With these three items I feel I can worry less with Liam out in the sun and can focus more on enjoying the summer days with him. That’s something any mom would appreciate, so get your kids some sun blockers and get out there!

There’s lots of fun to be done in the sun!

Monday, April 23, 2012

There's an App for That!

When we started Liam’s vision therapy months ago, we never knew how many neat gadgets and toys were out there to aid in training a child’s eye to perform simple tasks that we take for granted each day. Command the eye to move left to right, up and down without head movement, follow a straight path, flash back and forth between two objects without loosing track of the objects, all of these normal day to day things our eyes do are not so easy when your eyes are like Liam’s. Of all the devices our two vision therapists used to help Liam accomplish these small tasks one stuck out to us the most. Not because the object was something we had never seen before, but because the object--- that we had seen on TV, in stores, in classrooms, everywhere we turned, right in front of us---was the one object you would NEVER consider handing to a toddler.
An iPad.
Guess it’s true what they say; there really is an app for everything.
When our vision therapist first took out her iPad I was in shock. My first thoughts as I watch is Liam please, please don’t break it!! And, to my surprise, he didn’t. (Not yet anyway.) To add even more to my surprise, I know it must have shown up all over my face at the time, Liam interacted with the device better than most of the toys she had been trying on him all day. He would point to the bear flashing across the screen, touch the bubbles floating by, and even giggled out of enjoyment when he watched the black and white shapes fade in and out on the screen. She told us that if we started him early enough at home practicing on the iPad, as well as in his vision therapy sessions, she thought he would get used to using it and we would start to see some improvements in his vision faster.

Then she turned to us and asked, “Do you have an iPad?” Brian and I both looked at each other. We will soon! I knew he thought with me. We had both purchased iPhones (which will allow you to do some of the vision therapy apps but not all because the screen is too small) and never thought of a need for an iPad. Now we had one, and it’s name was Liam. Before our therapist left, we had her jot down some of the main apps that she would be using with Liam in their sessions and then we came up with a list of our own via Google and exploring the app store. With a final total somewhere over 50, I thought I would share some of our top favorites that we find very helpful in Liam’s vision therapy sessions. At our next vision therapy session, I plan on getting the entire list of apps from our vision therapist and I will post those as well. So here goes….

Tap and See Zoo-- Black screen, small red animal that you must follow as it bounces across the screen and once they locate and sucessfully touch it it will expand the size of the screen with a loud triumpant noise.

ArtofGlow—black screen that you doodle on with lights which can be made into different colors, shapes and then made to flash quickly or slowly, etc.


Lava—tilt the screen every which direction to make the bright yellow lava move and splash around the black screen

Bouncyball lite—track the bouncing red ball across the black screen, make it bounce faster with your touch (size and color of the ball can be changed)

Fluidtoy- not one of my favorites but moves waves of color through the screen and each touch sends out more spiraling waves

Infant Visual Stimulation- *this app does COST MONEY to purchase*- shows high contrast red, white, and black images

Fluidity- (a favorite of ours because it’s just like our light box) this app has flowing colorful gel in which you push around waves and make movements with each swipe or touch of your finger (color can be changed in settings)

Farmyard Friends—flashcards of animals in high and low contrast

HighContrast-- Flashing images in high contrast

Baby Bright— *this app does COST MONEY to purchase*- Gives different high contrast and color images, letters, shapes, and numbers for different age brackets.


Baby Silencer—Gives colorful displays of lights on black background to stimulate vision

Kolorami—is mostly for individuals who are colorblind: it reads color degrees and shades in images that you have taken

Magnifying Glass—uses your phones camera to magnify things and can be changed into high or low contrast as well



Tap and See Zoo
Tap and See Zoo


Art of Glow
Art of Glow
 

 
FluidToy

 
fluidity

fluidity
fluidity
 

HighContrast

HighContrast

 



Lava

bouncyball lite


 



Infant Visual Stimulation
Farmyard Friends




Tuesday, April 17, 2012

A Moments Rest

Last night I was rocking Liam like I do most nights before we put him to bed, but instead of rocking in his rocking chair in his room, I sat with him on the sofa across the living room from daddy who was studying intently for his upcoming semester exams. It was quiet with just a little noise from the rain outside beating against our windows. Liam has always been afraid of thunder when it storms so I sat reassuring him like I always do, “It’s only God talking to you Liam, Can you hear? Don’t be afraid, mommies got you.” After a little while with this routine Liam finally starts to drop his eye lids and I sit quietly just watching him. I had missed him so much from his first night staying at Gigi’s house the previous night that I was content just to watch him.

As his eyes started to droop, stuck between half open and half closed I turned to my husband---who always insists I put Liam in his bed around this time and let him fall asleep on his own instead of rocking him--- and said, “You know why I love to rock him to sleep?” Not waiting for him to answer I look down at Liam and say, “It’s because I love to watch when he gets to this state, half asleep half awake, when his eyes are almost closed but he is still watching you…because his eyes don’t shake at that moment. They are completely still….They are never still…. It’s like he is..” I am interrupted by my husband who is now staring over at us on the sofa, “like he is finally at peace…finally resting… like the world finally stops moving for him for just a few minutes to give him some peace,” he finishes….my thoughts exactly. I nod in agreement with him and we both sit just staring at our sweet lovie.

That night, like every night, I prayed God would give him more of those moments where the world is still and his eyes are at rest to take it all in, and each night I’ll keep watching to catch a glimpse of his peaceful moments…believing one day they will be more than just fleeting moments between asleep and awake.

Monday, April 16, 2012

Our First Night Apart


Okay, since I have had several people asking and family calling to check in on us after our very first night apart, I thought I would just post a note on here of how our first night without Liam went. (For those of you who didn’t see or know about this via my worried posts on Facebook, Liam spent Friday night with his Gigi--Brian’s mom--so that Brian and I could finally have a date night and finish some things at the house on Saturday.)
Friday after work I collected Liam from the sitter’s house and we headed home to get ready for Gigi’s. We packed a small overnight back with his pjs, his cd of lullaby music, and a few other comfort items of his and headed to Gigi’s where she was ready and waiting! She had purchased an outdoor, turtle sand box and filled it with plastic colorful balls for him to sit and play in, which he dove right into when we arrived. We sat outside watching him and discussing his routine and random things as I pittled not ready to part from him just yet. After an hour had past, Brian called to tell me he was off work and waiting on me to come to town for dinner. I got up and slowly moved to my car, kissing Liam tons on the way out, and forced myself to get behind the wheel and start the car. I reminded Gigi to call if she needed anything, and that we may stop by at least once in the morning before Brian had to go to work just to say hi and join them for breakfast, before I headed out down the driveway. They waved to me from the porch until I was out of sight. I turned the music up and drove to meet Brian refusing to think of anything other than a date with the hubby because I was sure the water works would start if I did.

When we got to dinner Brian recommended we stop in to see Liam tonight since it had been all day since he had been able to see him. I was glad when Gigi text us to say he was sound asleep already and we were still on our salads. I knew if we dropped in on them I wouldn’t want to leave him again. So we finished our dinner and drinks and stopped by a Redbox to grab a movie and went home. Only once throughout the night did I pop my head in Liam’s room to check on him, forgetting that it was empty.

Instead of sleeping in, we were up at the crack of 6 a.m. and off to Gigi’s to check in on our lovie. He was wide awake and raced to the door on his hands and knees to greet us. He hugged our necks and gave us kisses which made us feel missed. Gigi told us all about their night and how he had woken her at 5 and went right back to sleep once in her bed. After Brian left for work at 7, I stayed behind to love on my lovie and then went home to paint and let Liam and Gigi have some more play time. By lunch time I was back over at Gigi’s collecting Liam and his things to take him back home with me where we played and napped the rest of the day.

The night was not near as hard as we had thought it would be, on any of the three of us, but we were sure glad to have him home with us to cuddle and giggle with the rest of the weekend. Maybe next time, and yes there will be a next time, we will make it without running over at 6 in the morning to check in on them. For now, Brian and I are just proud that we could make it to 6 a.m!

Reunited Saturday Morning!

Thursday, April 12, 2012

Que, Que??

The extent of my Spanish is very limited, despite my three years of high school Spanish classes in which we were not allowed to speak a shred of English, so when we decided to hire Rosa, our Hispanic sitter, I was a little hesitant.  How in the world will we communicate? But we communicate all the same, with a lot of pointing and hand gestures, we make it just fine.  It amazes me how Liam can understand Brian and I and still understand Rosa (aka Ita) even at his young age.  Rosa can tell him to give her “besos” and I will say give me “kisses” and Liam’s reaction to both is the same.  She has taught him so many things in the 6 months he has been with her it just amazes me how he can absorb it all like a sponge. 

The best part about it all is when we teach his grandparents to say the things in Spanish that Liam will respond to ( clapping, kisses, hugs, come here, night night, etc) the variations they come up with just sends us into rolling laughs.  Instead of “besos” we get “pesos” (so not “give me kisses” but “give me money”) and instead of come here (“ven”) we get “ben” or “vee-inn”, but nevertheless Liam understands us all. 

I know it may take him longer to begin speaking, other than just babbling and Mama and Dada, but in the end I know it will pay off for him to be bilingual. In today’s society it is a great bonus to employers if you can speak other languages besides just English, so if he is able to retain his Spanish and his sign language through his adult life I think our current language barrier will definitely pay off in the end.  Hopefully he will not only be trilingual but eventually multilingual as we hope to introduce several other languages as he grows. 

Wednesday, April 11, 2012

In Go The Animals Two by Two....

Our very first trip to the ZOO!!! I know what you’re thinking, “Could he even see the animals?” And the answer is he definitely saw the ones in the glass encasements! See for yourself!!

Tuesday, April 10, 2012

Technology

Every year it seems like technology is advancing more and more, with more devices available than the year before, steadily moving forward. There is a device for almost everything and everyone. When we heard that there was a possibility that Liam could be able to go to public schools, depending on the difficulties it presents for him and how he does there, we began our search for anything that could possibly make a public classroom more manageable for him. (Granted he may end up at the school for the blind eventually, we just want him to have the option to try public schools before we make that leap.)


We have found several different companies that provide low vision technological devices that could possibly be of help to Liam when he is a tad bit older and starting to read and write but our favorite by far is Optelec. They specialize in magnification devices for the visually impaired and have a wide variety of products for the classroom and the home. I thought I would take a second to show two of my favorite Optelec devices that we hope to purchase for Liam in the future and one other from EZSee that we also liked.

First up is the Optelec Farview.
When I think of the Farview I think of a professional photographer’s camera with an amazing zoom lenses. It is a video magnifier that looks just like a small electronic videogame device. It has a 4.3 inch widescreen so it is very compact and great for classroom use. It allows you to zoom in (to lets say the chalkboard) up to 24 times the magnification and use live mode (move the device along to scan the board or object you are trying to see) or use a camera mode which captures an image from far away and then allows you to use it like a photo and zoom in and scan the “picture” to view. Let’s say you are trying to see the chalkboard in class, you can either hold your device up and move it to follow along with the writing on the board, or you can take one large picture of the board (from the same distance) and then zoom in to the writing on the board and use the arrow keys to move the picture along at that size. With the Farview, you can also make the image move on it’s own with a scroll key at the speed that is most comfortable for you the viewer. The brightness and contrast as well as the colors that the text is in, are all adjustable to allow for multiple viewing options. For someone who needs high contrast in their reading materials, like Liam does, this is an excellent tool. The contrast can be: white text on a black background, black text on a white background, blue text on a yellow background, yellow text on a blue background, and yellow text on a black background. The Farview will store up to 100 images to save for later use and with the 2.5-4 hrs of battery use (depending on if it is in playback mode or live view) it is very convenient for school aged children in the classroom. As far as the cost goes on this device, the Optelec Company sells them for $1,400 to $1,500 but there are several similar companies with similar devices being sold for around $800-$900.

Next up is the Optelec 22” Widescreen Ultra Flexible Arm System
As the picture shows, this is a desktop reading machine that is perfect for in the home or in the office magnification. It is very easy to use (see video on Optelec website) and the adjustable arm allows for personal viewing comfort. This device does not zoom into an object that is in front of you (like a chalkboard) but it does magnify any reading material or object placed on its platform. Simply place the book or object on the platform and adjust the settings of magnification/zoom to your desired level. Just like the Farview, this device has the ability to change brightness and contrast as well as the colors of text and background. I won’t list all of the color contrasts because there are 16 of them as opposed to the Farview’s five, but they are all available on the Optelec website. The cost on this particular Optelec device (they do come in larger and smaller sizes) is between $3-$4,000 with in home installation. Several other companies also make a similar product, for a slightly cheaper price, that can be installed onto your own home computer screen.

And finally there is the EZSee keyboard.
This is a simple black keyboard with bright yellow keys which have bold, black letters and numbers on them for easy high contrast viewing. The EZSee keyboard can be connected to any home or work computer and works on laptops as well, to make typing on a computer easier for visually impaired individuals. It is available on Amazon and Ebay for anywhere from $17 to $40.

All of the photos seen here along with information on the Optelec devices can be found on their website at www.optelec.com, along with demonstration videos for more information.

Saturday, April 7, 2012

The Light Box

What is a light box? Well, if you have normal vision, the light box is just a fancy box with a light behind white plexi-glass, but if you are a child who is visually impaired, the light box is the greatest tool on earth! When we first discovered the light box (see Arkansas School for the Blind Early Intervention Program post) with the ASB therapist, we thought that it was a pretty neat device used to show high contrast on objects so that Liam could see them better. Then when we went to our second therapy session at Peds Plus, where we were again introduced to the light box and it became Liam's favorite object in the room. He gravitated to it immediately and would not let it go.


"Mom, I think we have a winner! This is the best reaction we have been able to get out of him the entire time!" the therapist said, looking at me in shock as we stared down at Liam who was using his chubby little fingers to point and pick up precisely the object that was "illuminated" on the box.

The therapist used various colored pegs and flat shapes on the light box for Liam to practice grasping and placing in a grid of peg holes (which he did beautifully with hardly any misplacement). As long as the light box was on, Liam could point to and pick up objects placed on top of it with ease. My heart was overjoyed watching my child pick up the exact object he wanted and not have to scrape and sweep for them with his hand like he normally does at home.

I looked to my husband, "We have to get one of these?..NOW!!" He nodded in agreement and we sat staring and taking pictures of our son FINALLY progressing!!

The therapist was apparently in just as much shock as we were because she kept commenting, "Liam you like the light?" and "I think this will be how we accomplish and approach most of our therapy from now on."

She asked if we had access to a light box to use at home with him daily and began showing us all the different slides and devices we would use as he got older to teach him on the light box. Pam, our ASB therapist, had forgotten to bring the light box (hers and ours) to our second session but will be bringing it to the next. In the meantime, I started Googling the company that makes the light box to see how much it would cost to purchase our own. The light box is made and sold by American Printing House for the Blind, and on their website it was advertised for $135 with all the slides, pegs, shapes and alphabet tracers being sold separately for various prices.
Expensive but do-able!
I looked back at Liam grabbing at the glowing pegs ....And WORTH IT!
Here are some pictures I managed to snap while Liam played with the light box. You might think it is just a bright light with old school projector slides, but to some visually impaired children it is THE greatest teaching tool, or should I say toy, you can find.

Thursday, April 5, 2012

NOAH

When we were first told "your son has Ocular Albinism" I was relieved that it was only in his eyes. Yes, he does have fair skin and fair hair, but it can and probably will get slightly darker, and he will not stand out as much as he would if he had complete Albinism. The first few times someone asked "so it's a form of albinism?" or "so he has albinism" I would correct them with "ONLY in his eyes" because the last thing I wanted was for people to start calling my son an Albino, to me that was such a disrespectful term used to classify and single out people with albinism. I have heard to many times the stories of teasing and bullying because someone was considered weird or an outsider because of their albinism, and I just wanted Liam to be protected from that. (Please understand I am not that judgmental and cruel but so many people are and this is my baby we are talking about...and I am definitely a protective mama bear! I want him to be treated as an equal by his peers not as a "weirdo" or "an outsider".) So, needless to say, I was very hesitant to join NOAH (the National Organization for Albinism and Hypopigmentation) as a member because I feared people would hear this and just jump to a conclusion of "he's an albino" and that was all, and Liam is so much more than that. AGAIN... Please don't misunderstand, I do not have anything against people with albinism but I know and see daily how the world views them and how mean people can be and I guess at first I just really wanted my child to "blend in". But then I came to my senses and realized something, people are cruel, they will assume what they want no matter what and all people no matter how different are beautifully created by God in his own image so who was I to protect Liam from who God made him to be? And who wants to just "blend in" anyway??


My thoughts remain the same on the term "albino"; I believe you should always put the person first not the condition. A person is not summed up by their condition; they are a unique person who happens to have a condition that was not by their choosing so forever I will correct anyone I hear call anyone with any form of albinism an "albino". IT IS NOT ALBINO!! They are people with albinism or a person with albinism, put the person first above all else, not the condition.

Now, that being said, I finally broke down and joined NOAH, and it turns out they have a lot of information that they freely send to parents, with welcome baskets, magazines, informational conferences and brochures year-round. They have people who have been where we are now (the first years of discovering the condition in their own child) and are free day and night to chat with us and lift us up with encouragement along the way. They are an amazing network full of amazing people with tons of advice and stories to share. It was an eye opener.

So, whether your child has a form of albinism, like Ocular Albinism, or has oculocutaneous albinism (complete head to toe albinism affecting the eyes, hair, and skin), the NOAH organization is there for you to help you in whatever phase of the journey you and your family are in. I hope that one day, years down the road; we can be an "on call" family for new families affected by the disease to share our story of hope and support with others. I have attached their link on the left tool bar on this blog and I hope some of you will check it out, even if you don't have a child or know anyone with albinism, it is a great learning site full of wonderful stories and knowledge to broaden your world view and you never know in the future who you will meet or what you will go through. I know I, for one, never thought when I looked at children with albinism that I would ever have a child with the disorder but being on the other side of that fence I can tell you I wouldn't change a single thing.

Wednesday, April 4, 2012

We Saw the Light

Last night Brian and I took Liam with us to Target to pick up a few things, it wasn’t dark yet but it was getting close so the parking lot lights were already on. Liam has recently started pointing at things and is fascinated with ceiling fans and lights. We don’t know if it is because they look larger to him or if it “white blinds” an area of his vision making him curious or if he just finds them interesting. Anyway as we were unloading Liam from his car seat and placing him in the shopping cart Liam starts to point. He begins to tilt his head all the way back to the back of the seat on our cart clearly staring and pointing up at something. We both look up and to our surprise there, about 15 feet or so in the air is a parking light. Very bright and very high up. “La Luz” ? we ask (because our Spanish speaking sitter says this each time he looks at the lights ) and Liam just starts babbling and smiling constantly waving his pointer finger at the light. We were amazed.
Two months ago our little boy could not see 2 feet in front of him and until now we were not sure his glasses had helped much of anything excepting making things look incredibly large to him but now 15 feet away he saw the light. Words cannot describe how we felt. Overjoyed, amazed, astonished, excited, they all don’t come even close. Our little boy could see. No his vision is not the best, the images he sees are probably far from what we see, yes he is still legally blind and I know there will be a long road ahead of us, but if nothing else we know he can see farther with the glasses and for now that will have to be enough until he can tell us for himself. All that we cared about in that moment was he knew the image he saw was a light, and in that moment he was not the only one that saw the light.

Monday, April 2, 2012

Thoughts Heading Into Our Genetics Appointment

I have known for some time now that Liam’s Ocular Albinism somehow came from his mommies genes. Something in my DNA make up has given my sweet boy this condition, this “disability” (my thoughts on that word use later). All the research has pointed back to me and my genes as the OA source. Yes there is still a slight chance that Brian and I both are carriers for this condition but from what I understand it is highly unlikely. Needless to say when the genetics counselor meets with us this coming week and “breaks the news to me” it will not come as an unexpected surprise. I remember so clearly the thoughts that swam through my head the first few days as we waited for Liam’s diagnosis from ACH…
Did I give this to my child?
Was it something I did or ate during pregnancy?
Was it something that I didn’t do during pregnancy?
I sat the first night holding my sweet boy not wanting to put him in his crib. What if he can’t see, when he wakes up how will he know I’m still here? Will the dark scare him? Should we bring in more nightlights? I can’t leave him in here alone in this big crib!
That weekend everything changed, it was like our world flipped upside down and started over. We had to question everything we did up until the appointment (and sometimes we still do) to make sure we adapted our actions to fit a blind child’s needs. All weekend long one of us was with him never leaving him alone for a moment. Then I remember on the drive to the appointment that fated morning, having a distinct calm wash over me and for no reason at all (because I suck at recalling bible verses to fit a certain situation while in the certain situation or asked for one for someone in a given situation) a verse was placed on my heart and my mind recalled it word for word. I had to pull out my iphone and search the verse on my Bible App to be sure I had recalled it correctly, and I had.
As he went along, he saw a man blind from birth. His disciples asked him, “Who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in his life.” John 9:1-3

That verse has stuck with me for the past 8 months, always on the front of my mind with every challenge we face with Liam’s condition, reminding me that, no matter what, this did not only come from me and my genes, this came straight from God to fulfill a bigger and better plan for Liam’s life and I believe without a doubt that no matter the difficulties and challenges it may bring in life for him he will use this to glorify God in some way. It will continue to stick with me as a beacon of light in the dark as we head to genetics to discuss all the scary possibilities for Liam, for our future children, and future grandchildren. So the genetics counselor can tell me nothing that I cannot handle. I may come home repeating this verse over and over for days on end but it will be/has been my rock during this time, a promise straight from God for my son’s little life. And I will not forget it.

Sunday, April 1, 2012

The Never Ending Scab


When Liam was diagnosed I had such raw emotions I was an the roller coaster of emotions constantly up and down, up and down, it was making me SICK!! It was like someone stopped the film right at the happy ever after ending and added another chapter called the never ending nightmare! I’d like to say that eventually the constant appointments and questions, therapies and research finally found a happy middle ground but it didn’t. Each week we have more appointments than the last, more therapies than the last, more incoming information and more things we are told to “try”. It’s absolutely exhausting!
But I have come to be able to deal with the constant questions much better than I did at first. The first time someone said “why are his eyes shaking is he excited to see you?” I wanted to say “do your eyes shake when you get excited??” Comment after comment I became so frustrated with people and their questions on why Liam’s eyes moved the way they do or why he had glasses at such a young age. I remember my mother-in-law telling me “it will get better, little by little, your skin will get thicker and thicker question after question and eventually it won’t be as raw and painful as it is right now. You‘ll find yourself crying less and less, a little tougher all the time.” She was right. Eventually we got used to the questions and stares, we always noticed them mind you, but we just ignored them and I told myself they were just staring because his glasses were so darn cute.
But every once in awhile, that pain creeps its way back in, pushing at my protective mama bear nerve scratching at this recently healed scab making this old wound fresh again. Tonight it was an older gentleman in the grocery store when I must have let my guard down temporarily. From behind us we hear “ are those real glasses or fake?” I catch myself as I want to spin around and reply with a “no I just bought them because I thought they were cute like the shoes he has on,” but I don’t, I simply reply with a “yes” and try to walk away. “How did you figure out he needed them?” he continued. I’m psychic I fight back and explain that he has an eye movement called nystagmus that we noticed and the ophthalmologist did the rest. He informed us about his similar situation with his grandchild in the first grade not being able to keep up and I smiled as we said goodbye and walked away. Somehow people always like to reply with their similar situation that are never truly similar to ours but they think it will help put us on a level ground (but it doesn’t). (News Flash: Your cousin, your boyfriend, your grandmothers boyfriend and your best friends dog are not similarities to my son, people! Thanks!)
As we walked away I found myself holding onto Liam a little tighter just as I always tend to do when we are in public places and tons of people start swarming or pointing or commenting on the cute little baby with glasses. I remind myself as I look at Liam, he doesn’t see the pointing or the staring...he only sees me, his daddie, the lights and the toy shelf with all the things he wants to grab on it. He couldn’t be more oblivious to the rest of the world. And that is a huge blessing. I pray he never sees the pointing, the staring, the constant commenting or whispering and that he forever stays focused on the things that matter in his own little world. That, for me, is the constant Band-Aid on my scab. My little protector protecting his mommy's fragile heart.

PS. (In case you're unaware, Liam’s name means "The Protector")