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Wednesday, March 31, 2010

This and that...


"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has."

Think that quote pretty much sums up my feeling. I wrote in my first post, that Gavin has put his momma on a mission. I had no idea what that realy meant at the time. I do now. From morning to night my brain is non-stop thinking of the next fundraising event, Gavin's Groupies event, or how to perfect and tailor the upcoming events so that we truly leave a lasting imprint on those who cross our path. Ask my husband, he tells me to relax as if he's begging me to breathe. But I LOVE this. It takes constant devotion, I try to make sure I come through on everything, and that is difficult. This has turned into my passion, and I now know what it really means when people say they love what they do (and I'm not talking about a job, because this doesn't come with a paycheck). Half the time I don't know what I am actually doing, as this is all new (still). I am tapping into Social Media as a means of advocating/raising awareness (Facebook, Twitter, email groups, etc..).

There is nothing more than I want to do, but to educate myself and advocate for my son.

In other tidbits around the Stevens household, we've been busy!

- My oldest turned 6 and we had a four day celebration.

- Troy, myself and Gavin traveled to Children's Hospital to send some more blood work in to the Carver Lab for genetic testing.

- We signed up and booked hotel/flights for the LCA Convention in Philly (in July)

- Dining in the Dark for FFB last week was phenomenal. Something pretty fascinating happen, but I am waiting to see if I should talk about it. All I have to say is my complete faith in compassion and human decency is continually reinforced. A complete stranger did something for our family. It is something I will always hold in my heart and pay forward to someone else as I move forward.

-Gavin's article in the journal was very nicely written (thank you Ben).

We don't have one day free during the week right now. Troy coaches Landon's baseball team, between practices, games, field duty and our workshop we are taking once a week at church for the next 13 weeks we are running on fumes come Friday. It's such a super busy time, and all this with our mud run in 2 weeks, our Night without Light in 3 weeks and VisionWalk in June. We are also planning a Wahoo's night, where proceeds from a certain day will go towards Gavin's Groupies. We also have our golf tourney in Sept, and *hopefully a horseshoe tournament coming up. Phew! I also am sending out hundreds of sponsorship letters for VisionWalk, and reaching out to past teams who were involved in VisionWalk '09.

My point with the opening quote, is NONE of this would be possible without my circle of family/friends and their commitment to helping us. My grandma is hosting our Night without Light, my dad updates our website http://www.handsdownmonkey.com/, my mom helps with our kids (as do other family members), my friend John has taken point on the Mud Run (on his own), and the list continues. I am so very blessed, SO lucky to have the family that I do. I feed off their ideas and energy, and we build from there. On this blog you hear mostly my viewpoints as Gavin's mother, but the foundation to what has made me, me and where I am today - is because of my family. I am eternally grateful for the help, support and fun they provide me with as we continue on this journey! So, as the quote states, a small group can change the world! It all starts with an idea. Every concept in the world has. Why should our mission be any different?

And so we move forward; one step at a time. With each step brings an experience, a memory and an opportunity to further advocacy.

Thank you for your continued support, I can't say it enough. We are very excited for the upcoming events to raise money and awareness.

Wednesday, March 24, 2010

Beginning with Braille Books

I LOVE Braille books! There are some really cute ones, and it's fun to see Landon read (braille/print) them to Gavin. We are exposing Gavin to braille, and have been since he was about 6 months old. We have several of the smaller thick books w/ braille for little babies. He likes to turn the pages, and he is beginning to get the concept of looking for braille on a book when he is handed one. His tiny little hands will run over the pages of the book. Mind you, his attention span is minimal, which is pretty typical for one at his age. I don't want to give the impression that he sits and reads for periods on end. However, he is beginning to get the concept.

We are huge fans of braille, and have begun labeling his toys, his cube chair, his tray, etc. There is braille all over here. The other day, one of the braille stickers came off from something, and Landon found it on the floor and ran it over to me. I knew it came off the arm of his cube chair, but I told Landon we had to figure out where it belonged. Landon knows how to "spell" his name in braille, meaning he knows by recognition the dot placement of the letters in his name. He found an "a" in the name on the sticker and then we got out our handy dandy braille bug chart and figured out the rest, that it read CHAIR. It's fun!

Just yesterday Landon has a skate t-shirt he was wearing and parts of the design on the shirt looks like it is felt, and it's raised. He was feeling it, and there were raised felt dots and told me that it felt like it was braille. He then ran over to his brother and told him to "Feel it buddy". It's really fascinating how this has become the norm in our lives now, when just 2 years ago, I had no concept of braille, or how important it is to a visually impaired individual living in our sight dominated world.

Gavin's braille book collection is now close to 30 books. Although it is something he cannot read now (especially the thin, paper books - those would be trashed if I let him feel them), the thicker ones, we do read now. It's nice to build up his collection now and know we are saving them for his future. Some I have purchased at conferences, but for the most part, these have all been free. He is in the Dots for Tots program at the Braille Institute that mail him a new book every month. We get some from AFB, and I just read about this Braille Reading Pals Club from NFB. It's a pre-literacy program for blind and low vision children from from infant to seven years old. I didn't know they offered this, so wanted to share. He also gets books from his VI teacher.

I plan on all of us in this house, learning braille. It will be a part of our lives, for the rest of our lives. We need to be comfortable with it, and have somewhat of an understanding. I know for me, I was really bummed when I couldn't participate in the 3 day braille crash course that Braille Institue offered this past February, but I plan on next year. I know I will not walk out of there a braille reader entirely, but exposing yourself and immersement is key to anything you want to learn. It is really difficult, and I'm just talking about Grade 1 braille! I pretty much have the alphabet memorized, as far as knowing the dot placement, but do not have (and probably won't for a while) the touch sensitivity to read a sentence or even a word. (YET)

There are many options out there to begin a nice little library, some take searching. But I am so thankful these have been presented to us and we can help prepare both my kids to get comfortable with braille, and help to expose others in our circle as well. Braille is SO important on so many levels. I can't wait until Gavin can begin reading. ;)

Monday, March 22, 2010

Friday, March 19, 2010

Night without Light reservation being taken NOW!

Hi all. I've mentioned months back about our Night without Light dinner. Seemed like months ago, but now it's just a few weeks away! If you would like to read the post I originally wrote it is here. On our Hands Down Monkey website, I also wrote a page explaining what it is.

This is a FREE dinner in the dark to everyone who has given Gavin's Groupies a minimum $20 donation towards this years VisionWalk. Dinner includes salad, dinner, dessert and wine/drinks. We will also have a cocktail informative hour before dinner (if you wish to attend). This is put on by my family as our thank you for your support, and donation. We want to bring an unforgettable experience to you in the form of dinner, and experience your senses in a whole new setting.

You are still not too late to join us. Seats are filling up, the current weekend we are having dinner is April 16-18. We tentatively are looking at the following weekend as well.

Please let me know if you have any questions. Again, this is our family's THANK YOU for your support and donation. No one is providing funding for the dinner, and all money is going towards VisionWalk. So far, we have raised $760! We are SO excited for this!

Please don't miss out... contact me with any questions.

PS - I know I'm partial to this, but I have experienced a dinner in the dark before, and it brought a totally new, different world to me. I really want you all to be there!

Sunday, March 14, 2010

Get dirty with our pledge program!



Irvine Lake Mud Run is April 10-11

Our team, Gavin's Groupies has a team of over 175 people!

This started as a small team of 4, but has GROWN.

Our goal is to raise awareness of blindness, as well as to bring attention to VisionWalk on June 6.

We have a pledge program that we are opening to everyone, you do not have to be a part of our Mud Run team to be eligible.

The person who raises the most pledges for Gavin's Groupies team receives a
$250 VISA gift card from Troy and I.

Yes, $250.00!

All money must be turned in by April, 8th.

A great way to help us raise awareness, as well as get a nice gift card :)

Ask family, co-workers, friends if they would like to pledge for a cure for blindess.

Contace me if interested and I will mail you a pledge form ASAP.

It's easy, and you are helping us in our fight... plus who couldn't use $250 bucks?

*All money raised from this pledge program is money essentially raised for Gavin' Groupies VisionWalk team. You can view our team here.

Friday, March 12, 2010

Sign us up (LCA Conference)

We are signing up for the LCA Conference this weekend, that will take place in Philadelphia. We have decided to not take the kids. I want to be able to take my time and really talk with the doctors, researchers, as well as other families and that can be challenging with an impatient 5 yr old and a stubborn 17 month old! I know they will have child care, but to me, I don't want to be rushed in anyway.

Is this not a wise decision? Anyone else been prior? It would be nice to take Gavin, and for him to meet other LCA families. But then I wouldn't want Landon to feel left out. Blah blah..

I will also post this on the Yahoo Group email list and see what I get back in responses.

I am SO excited to connect with other families and hear and learn from them. I am still so new to this arena, and there is so much wisdom to take away from a conference like this, I am sure. I can't wait to hear what is next in the line of trials, and also get to meet many of the wonderful parents I have connected with in the past year.

My HOPE, and I pray about this everyday is that we get the genetic mutation figured out and sent to me prior to us boarding that plane. They said it would take approximately 7 months for Phase 1 (his blood is at the Carver Labs) to get back to us. We submitted his bloodwork in the middle of December, which puts us right in the middle of July as being our 7 month mark. The conference is the end of July!

Talk about timing. :) This conference takes place every 2 years, and it would be our luck to receive his genetic information the day we get HOME from the conference!

Tuesday, March 9, 2010

Irreplaceable (and a rant... fair warning)


ir·re·place·a·ble – adjective "incapable of being replaced"

I have a thing for the universe. I feel like we kind of get each other.

We have a relationship, and I think I am on the right path of understanding the big picture of what it all is. When I really sit in the quiet and think of the galaxy, and picture its enormous size, I can really get dizzy. Even to the point of feeling a little bit queasy. Does it ever end? Where is the end point of life, in the universe of what exists? How tiny are we really in the grand scheme of all that there is? I often watch the Planet Earth shows, and others like it and can honestly say my breath is actually taken from me at times.

I am a ginormous fan of the planet, nature and especially sunsets and trees. Not to where I'm overly tree huggy, but just mesmerized by its beauty and really captivated by the magestic aspect of nature.

When I see pictures or video of planet Earth from a great distance, to where it looks just like a little round ball, I get an overwhelming feeling over me that we are truly ONE. One that is, human. I even have told people that I wish all these individuals who are fighting, be it politicians, countries, racists, or just plain old jerks would be sent up to the moon (on the same shuttle, and all together) and take a look down at Earth. Take a good, long, hard look at the one planet that gives them life, the one planet that allows them to make all their dreams come true, the one planet where they coexist, whether they like it or not.

Call me cooky, in my mind, that is the way I would save the world. In hopes they would see their lives differently, and what they were doing and what they were fighting (each other) and just take advantage of existing, and living. Come back to earth with a renewed energy and have a change of heart.

Ok, back to reality.

And how funny, that it is true that we really fight with one another. Human against human. We even get bothered that we can't keep up with the Jones' or irritated that we aren't skinny enough, pretty enough, or have enough. The point of this is, nature really is a part of me. I mean, it really brings over a change of attitude when I see the beauty in which nature and the world, the universe has to offer. Not just knowing it's there, but visually seeing it. Being captivated by the magnitude of its greatness and know, really know that you have to obey nature and respect it. Just by seeing it. It is that big, that spectacular. Without sounding trite or cliche, we really are just a speck of dust in all that exists, and just a blink of an eye in the big time frame of existence.

And that makes me mad at times. Why? Because my little boy doesn't have that visual. He doesn't know what the moon, the rainbows or what the trees look like. He has his own vision of what it might look like, but no point of reference for what it actually looks like. I think I have the right for that to bother me. Days like today, I get really ticked. In all the positive we try to see in what his vision loss has brought us, I would never change, but that doesn't mean that it still does not really get me, and get me hard with sadness, anger and doubt.

Gavin has been sick, really sick actually with pneumonia. The only thing I have to soothe him all day long, is my (horrible) singing and music. We can't curl up and watch cartoons, I can't take him for a drive and drown him out with the magic that peers through his window. I can't look down at him at the doctors office and make funny faces at him to keep him entertained for hours on end. Not that I don't mind it being hard for me to try to console him, I am his mom and will do what it takes. It's just these times that his vision loss is really brought to the forefront of our reality.

I have a right, and it at times, really hits me.

The ability to see, it's irreplaceable.

I don't understand a lot of things. All that I have described with the greatness of nature and seeing these enormous creations, and you're telling me my son can't see?

Whaaaa... wait.

What?

Yeah, that's how I view it at times. I know it's greedy, it's irrational and a bad perspective. But it's relevant to my life and I go there at times.

I understand others suffering, and my son is healthy, but this is my rant for the evening. I don't often go here to this place, it's in me, but I try to cover it up with whatever I need to do to help me on this journey.

I want him to get that feeling that I get when I see the ocean, and when I gaze up at the Sequoias in Kings Canyon (my favorite place in the world). The view from the top of the clouds on a plane ride, or the happiness that my oldest gets when he sees the beginning AND the end of a bright rainbow, with dark clouds behind it making the colors burst. That breathtaking sunset, the sight of those snowcapped mountains, or the happiness his soul can feel, by glancing my way and me giving him my smile or nod of encouragement and approval from a distance.

Yes, he views it differently, yes he feels it, but dang it... I want him to see it. How can I EVER communicate this glory to him, effectively?

It's irreplaceable. Regardless of how good of a job I do, to help him find that connection to nature and feel it to see it; he can't.

Treasure nature, and really try to understand it and relish in it's offer to you, visually. It's there, it's waiting for you to embrace it and see it.

See it for Gavin, and for all those out there who cannot see it the way you can. Or see it for those that just don't get it. Don't worry about the nonsense that we so often get wrapped up in, appreciate it.

Appreciate the irreplaceable with your eyes. And see the irreplaceable with your heart.

Sunday, March 7, 2010

Beating blindisms and vestibular stimulation

We are flying by the seat of our pants with what we know. Everything we learn, is as we go. We come to a point, do some research, network with other parents of blind children, and figure out what to do. One big challenge everyday is providing enough vestibular stimulation for Gavin. I will share with you how we handle it, and hope you can help by sharing what you do as well.

1. Jumper. We thought he was over his jumper months ago, until daddy tried moving it to the garage. He heard the music and went nutso! He now uses it every other day, and it is still great for him, even at 17 months. He jumps up and down (with great force) and laughs while doing so. We will keep using it until he is done with it, or outgrows it. Until then, jump away.

2. Sit and Spin. We bought this for him months ago, but he was still too small. We bring it out for him to play now, it's great for him to spin around, and provides fun times for him and his brother to play with.

3. Bucket swing. We installed a bucket swing in our garage. We are usually outside everyday when Landon gets home from school, or right before dinner. Landon rides his bike/scoooter and Gavin swings. The bucket swing is great, it's cheap and all we needed to buy were two eye hooks from Home Depot to install. He gets to be outside, with fresh air and puts his hands up when he swings (which is great to keep them out of his eyes).

4. Row row row, your boat. Gavin LOVES this song, and we sing it about 50 times a day (no joke). He sings it to himself too, and it is my cue he is needing some vestibular stimulation. We typically do it with my holding his hands and him standing. I've also tried doing it with his in a sitting position, to also give him a different sense of movement. We "row" back and forth throughout the duration of the song, and then it's a game when he starts jumping up and down mid song and then I sing the words faster. When the song is over he jumps to the floor and claps and says "YAY!". It's a big production, and then we start again. This is something we do all the time, not just at home and it has saved us when we are out, shopping, at a wedding, or an unfamilar area for him. Best part, it's free!

5. Windows down. This is what we call it anyway. This is a LIFESAVER when we are driving. As I mentioned before, we do not go anywhere without his Snuggle Wraps on (while in the car). Imagine how boring it is for little ones to sit strapped in their car seat, and for a blind baby, not able to have the option to look out the window. Even if we put his favorite music on, automatically this is a huge opportunity for eye-pressing. We can't really disturb him while trying to drive safe, and so he eye presses unless his Snuggle Wraps are on. Even being said, with the wraps on, he LOVES to have the back windows down and feel the wind against his face/hair and he puts his hands up to feel the wind go through his little fingers. When I tell him we are getting ready to "go", I make it a big production and say "we're going to put the windows down!", he instantly laughs and puts his hands up. He can't wait for car rides. ;)

6. Side to Side. This is something I made up with him, while just playing on the ground one day. He stands up, holds my hand and we sing the side to side song. All I do is say "Siiiiide to Siiiiide", trying to carry a tune mind you. (I'm glad he doesn't care that mommy has a horrible voice - LOL). When I say "side to side", he moves side to side. Then I say, "Up, down" and he jumps up and down, then it's on to "back and forth" and he moves back and forth. We do it fast and slow, and I mix it up and he LOVES it. It's a game, but he is getting used to direction and where he is within his space.

7. Ding Dong. This sounds funny, but my grandpa would do this to us grandkids when we were small. We have carried on the tradition and have been doing it with both kids since they were very small. What you do is, we have Gavin on his back on the floor, we tell him to give us his feet and his hands. With your left hand, you hold his right hand and his right foot (at the ankle). With your right hand, you get his left hand/left foot (ankle). You pick him up off the floor, and you swing him up and down between your legs, The song goes like this, "Ding dong, ding dong, one, two, three!". At three you release the feet. We haven't done this yet with Gavin, we will wait until he is older to release his feet. We just gently put him back on the floor after "
three", until he stops requesting "MORE". Which is usually after the 20th time! We build up the anticipation with the counting, and put a lot of emphasis on the count. Both boys LOVE this, and we are usually pretty beat after it's over! Also FREE!

8. Airplane. This is usually something daddy does with him. Gavin is getting bigger, and I'm afraid I'm going to drop him. This is your usual, pick him up under the tummy, ask him to spread out his arms and legs and you act like an airplane. We've added some big up and down and swooping movements for him for additional vestibular stimulation. They go flying all through the house, just make sure he/she hasn't just eaten. May get a case of the air sickies. ;)

These are some of the things off the top of my head, that we do at home to provide the much needed vestibular stimulation he requires. He has his wagon, his little car, etc that we also use. With those we do fast/slow back and forth movements, kind of like the song Side to Side.

Gavin's does display some blindisms. He does eye pressing, he will rock back and forth, and he has even started with the head banging on the floor. The thing for us is we constantly try to redirect him. When he rocks, I will scoop him up and we will do one of our songs, or I will ask if he wants to swing, etc. I notice the head banging started when he started to use communication, but can't effectively communicate all the way with what he needs. He will usually start by getting irritated for a few minutes, and if his needs aren't met, he will bang his head on the floor. Normally this is when is tired of one of his toys he is playing with, etc. It's typically out of boredom or a need. We redirect him, and this has been very effective for us. Everytime we redirect him, it works. We don't tell him no, we just point him in a different direction and he is usually pretty happy with it.

I hope by me sharing some of what we do, can help some of you. I would also LOVE to hear what has worked for you, or if you do other things that we haven't yet. You can email me/comment and I can even write another post with what you have done just to share with everyone. This is a stumble, learn and try again process for us. I love learning from you, and applying. ;)

PS... What's great with what we have done, is his older brother can do these with him too. It provides great bonding/play time between them, and Landon is offering stimulation for him, but it's through play (short of ding/dong and airplane).

Saturday, March 6, 2010

Upcoming dates for Gavin's Groupies

I've had a few people contact me regarding dates of upcoming Gavin's Groupies events. So here is a quick run-down of what we have going on so far.

Irvine Lake Mud Run - April 10th - We are almost 175 people strong for this! We are also holding a pledge program, so if you cannot join us, but would like to help pledge, please contact me. All money pledged/donated will be going towards VisionWalk (Foundation Fighting Blindness). We are also having an incentive for everyone who raises over $300. Troy and I will be giving the person who raises the most money a $250 VISA gift card, as our thank you. ;)

A Night without Light - April 16-18 - Click to the left for more information. For every $20 donated to VisionWalk, you will receive a ticket to our dinner extravaganza. This dinner is our way to thank you for being a groupie!

VisionWalk 2010 - June 6 - Gavin's Groupies plans on having the largest team, and also wants to raise the most money! Click on the link on left for more information, as well as to be linked to our team page.

Wahoo's Dinner - TBA - We don't have a date yet, but sometime soon Wahoo's will be donating 20% of their total sales for a specific date/time to VisionWalk 2010. Thank you Wahoo's!

Scentsy Party - TBA - I will be holding a party at my house for Scentsy Candles. Kristie, the wonderful rep will not be making a profit, but will be donating all proceeds to Gavin's Groupies. :) Date to be determined.. will keep you posted. You can also purchase online if you cannot make the party.

... I think that is it so far. Lots going on. We are very excited!

PS - Become a fan of Gavin's Groupies on Facebook. I try my best to keep it pretty updated with our events, as well as links on latest updates on blindness, etc. Our button is on the left panel as well.

Friday, March 5, 2010

There are no footprints too small...

Don't know where to start with this one, and figured I need to just post this. I have a feeling if I don't post about it, I won't ever get back to posting again about the intent of this blog, which is Gavin, his progress and what we are trying to do with raising awareness.

I tried posting on a different topic, without facing this (publically to you), and it sits in my drafts unpublished. In a way, I feel if I carry on without even mentioning, that it didn't happen. And that is not my intent.

Last Friday, a week ago from today, right at this time actually.... I sat in a hospital bed, with my husband beside me. I thought the next time we would walk out of the hospital, would be in September of this year, holding my baby in my arms, and as a family of five. Instead we walked out distraught with paperwork, confirming that I had lost my baby.

I was 11 weeks pregnant.

My heart is with every mom (and dad) who have had to struggle with this loss. To say the word 'miscarriage', which indeed it is, I feel, removes the human element from this. I lost my child. A human being that my husband and I created has passed away. A much wanted, highly anticipated little fully formed baby. I struggled with my last pregnancy for many months, and it seemed like this was the direction I was in with this pregnancy as well. Complications from the start. What makes it even more heartbreaking, is 2 days before losing our baby, I was seen again by my dr., (due to some minor complications) and I saw my baby's heart, and was dancing around. I knew I was still in the "high risk" for the time of miscarriages, but to see your child's ultrasound, and see/hear the heartbeat on two seperate occasions before losing him/her.... is just something I can't even put into words. It was another level of bonding, and it just hurts. I was told everything was "ok" two days before. God had other plans 48 hours later.

My heart is with everyone who has lost a baby at any development.

We are surrounded by some of the best people. We had dinner made for us on many occasions, offers to help do our laundry, clean our house, take care of my kids and the list goes on. I thank each of you from the bottom of my heart for helping us. I was ordered to "rest and take it easy" for almost a month before we lost our baby. That is VERY difficult with two little ones. Thank you my family and friends for your help and endless little gestures of kindness. Not just for me, but for our kids, as well as Troy. Thank you for taking the time and making sure Troy is ok. His loss as a father, is just as great.

I went back and forth whether or not to post this. But then, it hit me. If I don't share it with you, the public, even if I only have a handful of readers then I am not publically acknowledging our baby we lost. There is no birth certificate, death certificate, or even a piece of paper telling the world that he or she even existed. If even for a short time in utero. All I have is tears, a sense of loss and a broken heart.

I also feel better knowing that there are some pretty awesome people in heaven who are watching over our little one.

I will always be a mommy to two here with me, and one little angel in heaven.

I will never forget my baby. Until we meet again.

I love you and I miss you.

"There is no footprint too small that it cannot leave a lasting imprint on our hearts"

Wednesday, March 3, 2010

Be back soon

I just got back on track with trying to be diligent with my updates. Life works in such ironic ways. The reasons why I was able to have some time on my hands, do put some dedication on this blog - is the same reason why I will be now taking a break for a bit.

We will be back to keep you updated with all the events that will be coming up in the next couple months.

We are all, or will be ok. Just taking some time to love on my family, and be thankful to have such happy, healthy boys to enjoy. I need some time to regroup and refocus.

Big hugs.