Happy Friday from our back yard!
Foto Friday!
Friday, August 24, 2012
In honor of Liam's "Hispanic side" I'm starting photo Fridays or better yet, Foto Fridays!!!!! Happy Friday all !!!!!!!
Looking Back and Forward
Thursday, August 16, 2012
A year ago yesterday everything was honky dory... We were new parents, exhausted from being up every two hours but we were happy to have a little bundle to be up with every two hours at all ... A seemingly healthy newborn to be up with ever two hours. We couldn't imagine that anything could ago wrong with our new little paradise. The problems I had during pregnancy threatening Liam's life, the hole in this little heart all were healed and gone, fleeting memories by a year ago yesterday. Sometimes I wish I could live in that day forever....
Then the morning came, a year ago today, that rocked our perfect world for what we thought was the worst....
That's the first time we heard the word "blind".
That peaceful morning we headed to my work to pick up my pay check and show off our little boy to all my coworker friends. As we passed him around and everyone ooohhh and ahhhed over him, one of my friends and bosses, APN Karen Martin, approached to see our little bundle. She'd seen him before at his one month check up where he had checked out in perfect health, but that was weeks prior. As she swaddled him, chatting with him sweetly I relaxed and sat down for a moment to catch up with my friends. I watched as she waved a stuffed teddy bear in front of his little face, watched as her face turned to a look of bewilderment, then concern, then very grim.
In the wourlwind that followed over the next few hours I can recall every single moment in great detail....
My bosses examining Liam's eyes, trying to get him to track toy after toy, standing over his crib for HOURS trying to get him to SEE me standing there crying over him, endless praying, begging, pleading ... The feeling that my heart could explode, the feeling that I could just collapse from the grief and worry, the questioning my every decision during pregnancy, the worry that I had caused this, the numbness, my family members hugs, their tears, every text message I received, every phone call... Counting swirls on the ceiling as we try to sleep cuddled next to our baby boy....the words "I'm not sure Liam can see anything, Amy" clarification "there's a chance he may be....blind."
Blind.
BLIND.
B-L-I-N-D.
That word rang in my head over and over again the entire day and continued through the next week and months as we plunged into doctor appointment after doctor appointment. Until finally, months later, we started to see the light at the end of the tunnel. We found friends, found a community, found peace and found our niche. We spent long hours talking and praying each night and are firmly convinced that God didn't give us Liam for no important reason, he gave us Liam, Liam's condition, so that we would take action. We never want any other family to feel as lost as we did, helpless in helping their child. It's an awful feeling when you hear that your child is blind and you cannot do anything for him or get anything that could help him due to your finances.
So our solution?
It's been building for along time, it started out as a whisper at family dinner, then began growing into something larger, something we found our passion in......our family's calling.
LIAMS Project.
Lending Individuals with Albinism More Support.
Because that's what we want to do, give them more support....financially, physical, emotional, social, all of it.... Support to be independent, to have vision to it's fullest potential, because that's what we want for Liam. We don't have all the answers yet but we do know that these parents, like us, need help to be able to provide all the devices, aids, specialists, surgeries, glasses, and sun protection that their children desperately need, and we want to help.
Yes a year ago today marks a lot of bad news and painful memories that are forever burned into our brain, but it also marks something else as well.... A new family and community in our Albinism friends, a new strength as parents, a new respect for parents of special needs children, a renewed heart for the hurting and disabled, a united family for Liam and for a better cause, but most importantly it marks the beginning of our family's passion.....the passion to help those in the albinism community with everything we've got, and fight along side them for our childrens' sight.
ISAIAH 42 : 16
"I will lead the blind along an unfamiliar way; I will guide them down paths they have never traveled. I will turn the darkness in front of them into light, and level out the rough ground. This is what I will do for them. I will not abandon them."
Then the morning came, a year ago today, that rocked our perfect world for what we thought was the worst....
That's the first time we heard the word "blind".
That peaceful morning we headed to my work to pick up my pay check and show off our little boy to all my coworker friends. As we passed him around and everyone ooohhh and ahhhed over him, one of my friends and bosses, APN Karen Martin, approached to see our little bundle. She'd seen him before at his one month check up where he had checked out in perfect health, but that was weeks prior. As she swaddled him, chatting with him sweetly I relaxed and sat down for a moment to catch up with my friends. I watched as she waved a stuffed teddy bear in front of his little face, watched as her face turned to a look of bewilderment, then concern, then very grim.
In the wourlwind that followed over the next few hours I can recall every single moment in great detail....
My bosses examining Liam's eyes, trying to get him to track toy after toy, standing over his crib for HOURS trying to get him to SEE me standing there crying over him, endless praying, begging, pleading ... The feeling that my heart could explode, the feeling that I could just collapse from the grief and worry, the questioning my every decision during pregnancy, the worry that I had caused this, the numbness, my family members hugs, their tears, every text message I received, every phone call... Counting swirls on the ceiling as we try to sleep cuddled next to our baby boy....the words "I'm not sure Liam can see anything, Amy" clarification "there's a chance he may be....blind."
Blind.
BLIND.
B-L-I-N-D.
That word rang in my head over and over again the entire day and continued through the next week and months as we plunged into doctor appointment after doctor appointment. Until finally, months later, we started to see the light at the end of the tunnel. We found friends, found a community, found peace and found our niche. We spent long hours talking and praying each night and are firmly convinced that God didn't give us Liam for no important reason, he gave us Liam, Liam's condition, so that we would take action. We never want any other family to feel as lost as we did, helpless in helping their child. It's an awful feeling when you hear that your child is blind and you cannot do anything for him or get anything that could help him due to your finances.
So our solution?
It's been building for along time, it started out as a whisper at family dinner, then began growing into something larger, something we found our passion in......our family's calling.
LIAMS Project.
Lending Individuals with Albinism More Support.
Because that's what we want to do, give them more support....financially, physical, emotional, social, all of it.... Support to be independent, to have vision to it's fullest potential, because that's what we want for Liam. We don't have all the answers yet but we do know that these parents, like us, need help to be able to provide all the devices, aids, specialists, surgeries, glasses, and sun protection that their children desperately need, and we want to help.
Yes a year ago today marks a lot of bad news and painful memories that are forever burned into our brain, but it also marks something else as well.... A new family and community in our Albinism friends, a new strength as parents, a new respect for parents of special needs children, a renewed heart for the hurting and disabled, a united family for Liam and for a better cause, but most importantly it marks the beginning of our family's passion.....the passion to help those in the albinism community with everything we've got, and fight along side them for our childrens' sight.
ISAIAH 42 : 16
"I will lead the blind along an unfamiliar way; I will guide them down paths they have never traveled. I will turn the darkness in front of them into light, and level out the rough ground. This is what I will do for them. I will not abandon them."
Dear Liam- White Cane Rule No.2
Monday, August 13, 2012
Dear Liam,
Your white cane is not for pole vaulting. Launching it at Daddy's head is not funny, though Mommy did laugh quite hard causing a snowball affect of giggling, we keep the ball of our stick on the ground and the handle in our hand at all times.
Much appreciated by all, but with love from,
Mommy
Your white cane is not for pole vaulting. Launching it at Daddy's head is not funny, though Mommy did laugh quite hard causing a snowball affect of giggling, we keep the ball of our stick on the ground and the handle in our hand at all times.
Much appreciated by all, but with love from,
Mommy
Dear Liam- White Cane Rule No. 1
Friday, August 10, 2012
Dear Liam,
Just so you've been warned,
If you hit the tv again with the swing of your cane I will be taking it out of your allowance for the next five to ten years... Once you actually start getting allowance .... So make that the next ten to twenty years.
Thanks, with love
Mom
Boy Flicks
Thursday, August 9, 2012
Need some suggestions on "boy flicks" because apparently as my hubby calls them, all the Disney movies I have from my childhood that I have been saving for my children are "chick flicks". Apparently all the princess movies (Beauty and the Beast, Little Mermaid, Snow White, Cinderella, etc.) are not little boy appropriate. Excuse me for holding out for a girl one day!! Now yes I know a few little boy movies (Robinhood, Brave Little Toaster, Land Before Time, Sword in the Stone) but not near enough. So I'm open to suggestions but be advised I love the old classics and hate a lot of the crap movies they put out these days so keep that in mind..... And GO!
*Also please note blind children prefer movies with good sounds, or music, bright colors and if possible non-chaotic scenes that have toooooooo much going on at once! Much appreciated!!
Okay NOW go!!
The Trenches-- The Never Ending Nap-Time Continues...
Saturday, August 4, 2012
I tried something new today for nap-time..... As silly as this sounds remember I'm desperate!! I'll try anything at this point!
So the new plan hit me when I was sitting in the floor next to Liam's crib Friday afternoon as he cried for the second half of his two hr nap time. I sat down on the floor next to his crib and rested my face on the rails. He finally quieted and lay there watching me, occasionally slipping his tiny hand through the railing slots to touch my face or beg me to hold his hand but NOT getting up not once. Eureka!!! Why didn't I try this before !!! So as I sat there for what felt like forever and a half, Liam slowly drifted in and out of sleep. The longer I sat the longer he slept but the boneyer my butt got. So today as I went to lay Liam down when the screaming began he looked up to find me siting in our living room rocking chair now stationed in the middle of his bedroom floor. (And yes i drug it in there by myself!) Insert my dad here saying "shock an awe baby shock and awe!" By the look on Liam's face and the silence that struck him, I knew.... Insert mommy win here!!! So I sternly instructed him to lay down and he did. There he lay watching me rock in the rocking chair watching him and catching up on some writing until low and behold sleep snuck up on him! It took AWHILE, with several moans and whimpers and one or two "lay back down !"s but he finally rested. Tomorrow we will work on mommy sneaking out of the room without waking him (which was the unfortunate result today) but I'm sure after a few days this will be our new system. So write this one down as a mommy win!! FINALLY!!! There's a light at the end of this long, loud, stressful tunnel! Until tomorrow at least .....
Amy
So the new plan hit me when I was sitting in the floor next to Liam's crib Friday afternoon as he cried for the second half of his two hr nap time. I sat down on the floor next to his crib and rested my face on the rails. He finally quieted and lay there watching me, occasionally slipping his tiny hand through the railing slots to touch my face or beg me to hold his hand but NOT getting up not once. Eureka!!! Why didn't I try this before !!! So as I sat there for what felt like forever and a half, Liam slowly drifted in and out of sleep. The longer I sat the longer he slept but the boneyer my butt got. So today as I went to lay Liam down when the screaming began he looked up to find me siting in our living room rocking chair now stationed in the middle of his bedroom floor. (And yes i drug it in there by myself!) Insert my dad here saying "shock an awe baby shock and awe!" By the look on Liam's face and the silence that struck him, I knew.... Insert mommy win here!!! So I sternly instructed him to lay down and he did. There he lay watching me rock in the rocking chair watching him and catching up on some writing until low and behold sleep snuck up on him! It took AWHILE, with several moans and whimpers and one or two "lay back down !"s but he finally rested. Tomorrow we will work on mommy sneaking out of the room without waking him (which was the unfortunate result today) but I'm sure after a few days this will be our new system. So write this one down as a mommy win!! FINALLY!!! There's a light at the end of this long, loud, stressful tunnel! Until tomorrow at least .....
Amy
