Thursday, May 24, 2012

Looking Back On Our First Year

Since about two weeks before Liam was born I started writing letters to him. Something my dad did for each of us when we got older that I wanted to pass down. I've never shared them but I wanted to start tonight on his first birthday.

Blondiebear- My sweet sweet TODDLER!!! Where has the time gone! I remember not long ago dreaming of you waiting for you to arrive and thinking you never would. One year ago tonight I lay in a hospital bed holding you tight, a nurse had just come in to take you to the nursery but I refused. I had only just gotten you I was not going to let you go that quickly for sleep that would never come. I remember swearing to protect you always and be your big mamabear... But as I quickly learned that was to big a job for just me....impossible to protect you from somethings even. I had to leave that to the big guy upstairs and trust that through it all he had your best interest at heart. Believe me when I say watching you go through some of these thing was the hardest thing I've ever faced but through it you prevailed my strong and brave little lovie. Watching you I know I've learned more from you about love than I could possibly ever teach you in a lifetime. How to love how to be patient how to pray through a storm without ceasing. How to find the good in everything and everyone. How to trust and how to hold tight to what you believe in. Your daddie and I have watched over the past year as you beat every odds they set on you, every time they said you couldn't or wouldn't it became a challenge to help you overcome. (One day I plan on videoing you ride a bike and send it to all the doctors who said you never would) But through it all you still look at the world with a smile on your face , happy as can be oblivious to the challenges that lay before you before us... And I pray you stay that way... That you never think you can't do something just because someone (some doctor ) said you cant. That you alway see the good even in those that hurt you that tease and judge you and that you learn to accept everyones differences no matter how big or how small. Always remember you want to stand out in a crowd who wants to just blend in? Jesus never did. So one day when you read this remember what I've said. Hide these words in your heart and never forget what you mean to me, to your dad and always now how much we love you. We spent a year praying God would make us ready for you, and that he would sent just the perfect baby for us and he did. We wouldn't change one thing about you not one hair on your white head. So happy one year birthday and we pray many many more. With all the love to the moon and back , love Mom and Dad.

Wednesday, May 23, 2012

Street Signs

Recently, before picking Liam up from our sitter, I was in a neighborhood I had never been in when I noticed a new street sign I had never seen before.  It read "Deaf Child Area". It instantly brought me to a quick halt and then forced me to slowly ease through the area checking the nearby yards for any children at play. I left the neighborhood thinking, “they should have these type signs for blind children’s play areas too.” I called my husband and told him all about it and asked how he thought it was installed there. Did the family pay for it to be put up? Did the city? It made me start to think; a lot of families in our situation even reading our blog may need one of these signs. Even though Liam is legally blind, we do not yet know if he will need one of these signs as we are convinced he can see more than the doctors or we even think with his glasses on, but in case in the future he or our other children ever need one, I wanted to know how and where to find them and I wanted to share that information with other moms searching Google for how to raise a blind or visually impaired child. So I decided to investigate and call our city hall to find out what one would do if they needed a sign like these in their area. Here is what I found…..

After a call to the Greenbrier City Hall, the nice receptionist put me in contact with their Street Superintendent and told me it is called a “specialty sign” and that he should have a catalogue for ordering signs like this. The Street Superintendent informed me that he had not ever had to place one of these signs in the area but that he would look into it and see what he could find for us. We informed him it was just for research because we do not yet feel Liam will need one of these signs as much as some children do, but the SS informed me that if Liam’s sight is worse than legally blind it would be best to have one in the area or at least a “Slow Children at Play” sign in the area to warn traffic. I guess you never can be too careful.
Apparently, there are several different types of signs for this, all with different wording on them, but if you find yourself in need of a blind or deaf sign (as well as several other disabilities) don’t hesitate to call your City Hall and request one from your Street Superintendent. After all, protecting your child when he or she cannot protect themselves is the parent’s job. If that means having a sign put up that brings traffic to a screeching halt, warning them to be on the look out for children at play that will not see or hear them coming, I say go for it!

(*Note: “Slow children at play” signs are good to have around if you cannot get a blind or deaf sign but they do not also tell the drivers not to assume that the child will move when they see or hear them coming so a specialized sign is definitely best.)

Friday, May 11, 2012

Window Tinting for Photophobia

This past week Brian and I finally got our window tinting done for both of our vehicles. It was quick and fairly cheap, based on what I thought it all would cost, and both vehicles can now shield Liam’s sensitive eyes from the dreaded sun. No more crying non-stop on the ride home every day!! Woohoo!

The Tint Shop in Conway is where we chose to have our tinting done and they could not have done a better job! They have experience in tinting windows for photophobic individuals and suggested we use 15% tinting on our back side windows and 30% on our rear windows which worked like a dream! At first I was afraid it would not be dark enough and I wanted to do the darkest shade possible since we had full permission to, but they encouraged us to try this first since anything darker would make it more difficult for the driver to look through the back windows. So, I agreed to try it first on one car before we moved on to the next and they were definitely right!

After putting it to the test, this degree of tinting seems to really do the trick for Liam. We were really pleased when he did not squint at all in direct sunlight on our first drive home! (I was fully convinced that we had made the right decision when we opened the door to the back seat and Liam winced away in pain from the light that had flooded in. Clearly, the window tinting was working to protect his eyes if he had not noticed the sun before the door was opened!)

So, if you need darker tint for your child with photophobia, I would definitely recommend it—as long as you have your letter of medical necessity from your pediatrician! Now let’s start counting how many times we get pulled over!

Tuesday, May 8, 2012

Under The Same Sun

Found this, was touched by it, thought I'd share....

From the website for Under The Same Sun

“Albinism is etched in our imagination, yet the condition is rare enough in daily life that it

has no human face. We carry the condition; the world carries its weight and meaning. Such

deep-set words are hard to extract. Still, it’s hard sometimes not to resent albinism’s role

as one of the last unmitigated means to marginalize and ridicule, especially as we are so

swift to parse out people from their condition. It’s no longer “Idiot Savant,” it’s Savant

Syndrome, not “Siamese twins,” but conjoined. Not “albino,” therefore, but person with

albinism. In the beginning was the word. It’s still here. One day, education will dispel

ignorance and decency drive it out altogether. Until then, please refer to my condition,

and use my name.”



Sunday, May 6, 2012

Moms to the Blind

Over the past year, many things—doctors, specialists, organizations, hospitals, clinics, etc.—have helped us through each difficult phase of our journey. But the one thing I feel as Liam’s mom helped me the most, was my fellow moms. Specifically my fellow “blind mamas.” These women and their blogs about parenting their blind and visually impaired children, as well as their emails and messages of hope and strength, kept me fighting when I wanted to give up. They were there to encourage, and share their stories of pain, failure, hope, joy, success, and determination to help their precious kiddos. Without them I would not have known what to do or where to go next to help Liam and his eyes. Their blogs shared more information than any database or doctor ever could because they were the cold hard facts, the personal experiences with a “been there, done that”, and their stories were open, honest, and the raw truth. These where the things doctors liked to sugar coat for us, or simply brush it away with a “we will see when he gets older”. They could never have taught, from their labs and tests, what these moms taught us from their blogs, emails, and memos.

The bottom line… when you find yourself in our boat, these moms are your lifesavers! Period. So I thought I’d pull all of their sites together on their own individual tab (since it took me a year to find them all). So above you’ll find a new tab, dedicated to the blogs of my fellow mom bloggers of blind kiddos, ready to share their journeys with you--each with their own hopes and dreams, and individual struggles along the way. So check them out and be amazed because the community of “blind mamas” is one I’ve found to be like no other.

Wednesday, May 2, 2012

Pergola Para Liam

Liam is quite the outdoorsman these days.  The first thing he found upon becoming mobile was the front door.  That kid longs to be outside! But the sun proves a big problem for his fair skin, and even with the constant sunscreen, he still seems to turn pink.
So, Brian and I decided (after many arguments over it) to build the kid some shade.  We discussed tents, tarps, use of the garage, and keeping him indoors which just isn’t fair to Liam, and finally landed on the idea of a pergola.  With a pergola you can decide, based on how you build it and what you plant to grow on it, how much sun you let come through its canopy. It is easy on the eyes for when we resell the house, and can be cheaply built and kept up.  It will be sturdy in storms and other weather conditions which is perfect for our area.
So we have started the process of pricing and sketching out designs.  Will it cover all, half, most or just some of our yard and deck? We don’t know. In the meantime, here are some Google pictures of our ideas along with our yards before pictures....stay tunes for the after!