New Opportunities to Share Gabe's Story

Even as I prepare for our upcoming adventure/vacation at Disney World, I find myself being continually challenged. I was inspired late last night to type out Gabe's story and submit it to Guideposts which is an inspirational inter-faith publication that specializes in short stories about everyday people facing obstacles in their lives. The manuscript flowed well and was submitted successfully online, in the wee hours of this morning. I am praying that it find the hands and eyes of the person for whom it is intended.

Gabe and I will also be setting up a booth at the March for Life, in cooperation with Hawaii Helps Disabilities (a nonprofit organization run by our good friend Kimberly Selden) here in Honolulu this coming January. We will be utilizing the presentation board that Gabe created for his 5th grade class at school, and are excited about the opportunity to put the word out about CRD.

Gabe is also excited because he has been given yet another gadget to use both at home and at school. It is one of those audio readers which allows him to download books and then reads them aloud to him as he follows along. If and when the time comes, he will be able to hear his favorite stories, even if he can no longer see to read them.

Los Angeles IS city of Angels!

As I sit in the USO at LAX airport, I have just a moment to reflect upon the events of the past 3 days. First, Gabe and I were treated to a tour of LA by one of the angels in our life whom we met last year at Disney. Holly drove us around to see the Kodak theatre (think Oscars & red carpet), & also to see the walk of fame (all the stars). After lunch in the Hollywood Hard Rock Cafe, we drove down Rodeo Dr. (INCREDIBLE) We then retired to the hotel to chillax and wait for the main event! Gabe & I flew to LA to see & meet Tony Hawk, who is only one of the greatest skateboarders of..oh...I don't know...All time? My son was offered the opportunity of a lifetime by Lenore, director of Tony Hawk's fan club (also his big sister). He experienced VIP treatment at one of the most exclusive skate events of Tony Hawk's calendar in Beverly Hills. The Hawk family are all such good people...Gabe is returning home with memories that will last his lifetime as well as priceless memorabilia, all autographed. I am blown away by the generosity of the Hawk family & their willingness to reach out to my son to fulfill one of his dreams. I am forever in their debt. We will never forget all the acts of kindness we encountered in the city of Angels...

Beiber Fever, Beverly Hills, & a mouse

Well, thanks to a friend who developed a sudden case of Tourettes, Gabe found out about the trip to Beverly Hills/Tony Hawk. He almost peed himself he was so excited. LOL :P Showed him pictures of the hotel we will be staying at and a video preview of what the skate event will be like. Packing the suitcases already. Mom has to look good for Rodeo Drive. My money should last about 4 miliseconds there...

Tonight is Gabe's first big concert at the Blaisdell Arena in Honolulu. Beieber fever has hit the island! Concert tickets sold out in 20 minutes when they went on sale last month. My friend and I conspired to get a VIP 4pack of the highly coveted tickets so Gabe gets to attend with his "girlfriend" Anu, neighbor friend Stevie, and the babysitter. I refuse to suffer thru Beiber...Heck I don't even know if I am spelling the poor kid's name right.

I had a "mom pity party" moment the other day. I was scrapping (scrap booking) and had to put together Gabe's last karate page. It was kind of sad because he won't be going back to karate. He was able to earn a green belt before CRD decreased his vision. I suppose he could have continued on for a bit, but he said "gee mom, how many blind senseis do you know?" Smart kid. Too smart. Besides, he wanted to take weapons training and of course that could not be done due to safety issues. On a brighter note, he is taking to the guitar nicely.

We are planning a family vacation to Disney World for Gabe's birthday which is December 15th. Seeing Mickey Mouse for birthday/Christmas should be very memorable for both of my kids.

Playing a game of clue

So, the trip to Beverly Hills is all set up. My son STILL has no clue where we are going or what we will be doing there. *insert evil chuckle here* He saw that I had bought a new suitcase, and began to get curious. I decided to make the surprise more fun by playing a little game of clue with him. He can ask yes or no questions, and I have given him hints like "it will be between now and Christmas" and "it's happening on the West Coast" hehehe. This is fun. He is writing a list of clues as he gets them and I am waiting to see just how smart my son really is. Will he figure it out by the big day??? In order to up the ante, I bought him a Tony Hawk tech deck today and told him that the trip might have something to do with skating...He asked if we were going to Skateland U.S.A. (old stomping ground for me & the hubby back in the day). I just chuckled and said "no".

On the school front, homework has gotten much easier due to the teachers' enlarging his worksheets. He is still struggling with his reading which is somewhere in the early 5th grade level. Now that he has the right tools, he is beginning to read for pleasure once again. That is encouraging. If he sticks with it, I am sure his fluency and comprehension will improve.

Gabe is religious about taking his supplements, and we bought one of those nifty pill cases with all the days of the week on it. He got a kick out of it because he noticed the braille dots on the covers. It is amazing how you begin to notice things only when they suddenly become part of YOUR reality.  He is thinking ahead (WAY ahead) and has expressed that if & when he needs a service animal, he would like a German Shepherd. Good choice ;) Smart, loyal, fiercely protective, hard working, and beautiful. Just like my son. I couldn't think of a better fit.

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Headed to Beverly Hills to meet Tony Hawk!!!!

God is amazing folks! When He promises in His word to "give us more than we can ever ask or imagine", He wasn't joking. I  had emailed  pro skateboarder Tony Hawk's fan club a couple of weeks ago, in the hopes of maybe getting an autograph or something like that for Gabe as a surprise for birthday/Christmas. Instead this is what I got in response:

          "Aloha Christine,

Thanks for the e-mail. We forward all of the e-mails to Tony and he reads all of them, but due to his traveling, demos and obligations he is not able to answer them individually.


What a rough time you have all been going through. Gabe is lucky to be surrounded by such a loving, caring and capable group of people. (I include the schools in that!) I have gone on your blog and read about what everyone is doing.


We would like to invite Gabe to one of our Stand Up For Skateparks events in October/November. The Beverly Hills event will be Sunday, October 17 from noon to 4 pm. There is another in Las Vegas Saturday, November 6 from 12 pm to 4 pm. You are welcome to either of the events. Please visit the website to see what they are about. I can escort you in so that Gabe is not lost in a crowd and so that he can personally meet Tony.


Stand Up For Skateparks 2010


Let me know if either of these dates work for you and we'll move forward with a plan. In the meantime, we'll have Tony sign an autographed photo with a message for Gabe."


Sincerely,


Lenore


---------


Lenore Hawk Dale


Director, Tony Hawk Fan Club


www.tonyhawk.com

God has miraculously provided us with the funds to actually take this opportunity! Gabe and I will be flying to Los Angeles on October 15th. While we are there, we will not only meet and greet Tony Hawk, and see a fantastic exhibition of pro skateboarders and BMXrs, as well as see Jane's Addiction (a band), but ALSO visit the Hollywood Walk of Fame and stay in a beautiful  3 star hotel. Gotta love package deals with Expedia.com. I am humbled and overwhelmed by the generosity and kindness being shown by strangers, famous ones at that. I am not on a quest to grab freebies from anyone and everyone, but simply want my son to enjoy the time he has left with sight. Making memories is crucial to his healthy adjustment and I will do all in my power to make sure they are good ones. I cannot begin to thank Tony Hawk for this invitation. Gabe has no idea what is happening and won't have a clue until we board the plane. The exclusive event we will be attending is actually a fundraiser for Tony Hawk's charitable organization which provides skate parks in the inner cities of our country for the youth to enjoy. It is going to be held on Green Acres Private Estate in Beverly Hills. I am so excited I could just burst!!!!

          http://standupforskateparks.org/

In other news: Gabe's most recent eye appointment showed no change in his vision (20/100 both eyes). He is currently taking 3 supplements: Lutein, Omega 3 fish oil, and Bilberry, all of which have been proven to support and repair eye function, specifically in the retina. These antioxidants/supplements are commonly recommended for those with macular degeneration. No improvement yet, but staying the same is a small victory. As long as his vision isn't getting worse, I am content. His next appointment will be in January with Dr. Ng of the Retina Institute of Hawaii. Please agree with me in prayer for a good report at that time.

Sixth Grade & Skateboarding

Kudos to the Hawaii Public School system! Gabe's low vision teacher(s) have been an absolute Godsend. The teacher came to our home, brought Gabe supplies to facilitate his schoolwork, and had all his textbooks enlarged. He is also now able to attend special field trips under special education that will help him navigate the community and help him gain self-confidence. All the magnifiers, and other tools that help him have been provided at no cost to us. I cannot thank his school (Pearl Ridge Elementary) enough. Everyone has been so supportive and empathetic.

Homework has been a struggle due to the increase in workload but he is a trooper. Reading is hard for him even with the magnifiers, as it is time consuming and causes eye strain/headaches. Computer work is hard for him as well, unless done on a large screen with larger font.

I emailed Tony Hawk to ask if there was any possibility that Gabe could meet him and/or see him skate. It might seem silly to randomly email a total stranger, a famous one at that, but who knows? Stranger things have happened. I feel so much grief over all the things my son has had to give up due to his vision impairment. First baseball, then karate. All he has left are his skateboard, his electric guitar, and folding origami. He is very good at origami. There are creations of his all over the house. LOL

Still praying for a miracle.

My feelings thus far

This past few weeks has been an overwhelming whirlwind of doctor appointments, school testing, special education arrangements etc. I have had little opportunity to reflect on where I am emotionally. As a mother, I am broken hearted over the challenges that my son will now face in his life, and bitterly disappointed over all his lost dreams. He wanted to play major league baseball one day, and to drive a classic muscle car. Those two dreams are forever shattered, unless there is a miracle. As we rode back from his low vision clinic consultation, he quietly remarked that "Anu won't want to marry a blind dude". For an 11 year old to know who he wants to marry and to also be capable of contemplating the potential impact of his disease on that desire is astounding. Thank God I was wearing sunglasses, because I didn't want him to see the tears in my eyes. I told him that when the time comes to find a wife, God will send him a woman who will appreciate him for his abilities and be able to look past his disability. What a tough topic to discuss with a boy who is on the cusp of puberty, and facing a lifetime of darkness...Later, in a separate conversation he broke down and cried a bit saying "if God has such a great plan for my life, why am I going blind?"
 I pointed him to Isaiah 42:16 which clearly demonstrates God's special care for the blind. It was a great comfort to me and I think it made him feel better too...But still his question has merit. I mean there are healthy adults who struggle to find God or a plan for their lives...How much harder will it be for my son? Later, I threw a temper tantrum with God and expressed all the frustration and doubt that I feel festering just below the surface. I try to hold it together, especially around my son because he can't afford any more doubt. I also don't want to be a hypocrite. How can I tell him to trust in a loving, fair God when I myself am suffering from lack of trust. I cry in private. I fully understand and empathize with the bad attitude that occasionally rears its ugly head within my son. Besides hormones going berserk, he is going through stages of the grieving process. Denial, anger, blame etc are all normal parts of healing. I confess I am in the anger phase myself. I find this whole thing horribly unfair. This child was rejected by his birth father, witnessed awful things prior to his life here in Hawaii, and once adopted by my husband struggled  with low self-esteem and anger management issues. He was diagnosed at age 6 with mild to moderate reactive attachment disorder. He has been in therapy ever since, and has made impressive progress. Now this setback. It has been almost too much to bear. I also have a younger son who is special needs, so my life is exhausting and immensely stressful. Some days I don't even want to get out of bed. I alternate between taking joy in my sons' small victories and crying my heart out over their torment. Being a mom is so hard. I wouldn't miss a day of it for the world though. My sons teach me every day, the true nature of perseverance. No matter how hard their lives are, they always manage to wake up each morning with a smile and a zest for life.

Quiet Cars could pose danger for my son

http://news.yahoo.com/s/ap/20100704/ap_on_bi_ge/us_quiet_hybrids

I have always been concerned about my son's safety walking to and from school, but now that he is no longer allowed to cross major intersections alone, I understand why. His central distance vision is distorted and messages take longer to get from his eye to the brain, decreasing his reaction time. This article illustrates how sound (or the lack thereof) may further hinder his future mobility. I agree with the idea that all silent vehicles should be required to have the SAME type of warning sound so that they are easily identifiable and won't get lost in the barrage of sounds that we hear every day. Even at that, there is still the risk that they will be ignored much like car alarms...Even I am guilty of that. I hear a car alarm and get annoyed rather than being alert. My son won't have that luxury one day...

How Retinal Diseases are Diagnosed

Foundation Fighting Blindness

God provides scholarship to summer camp!!!

http://preteen.kidsforthenations.com/

I am so excited for my son! He gets to attend the Christ for the Nations Pre-teen Impact overnight camp in July. The camp is in Dallas, TX (our home state). The school was kind enough to offer him a full scholarship to go. All I had to do was send a detailed email explaining our current situation, and they approved it. He and I will be flying to Dallas to visit friends, family, and of course so he can go to camp. I attended the Youth for the Nations camp at CFNI when I was 15 and it was life changing awesomsauce! I expect great things for him during his 3 day adventure.

Life has been frustrating as of late due to slow doctors. We STILL don't have the results from his ERG test at Pali Momi, as the doctor there seems to think we can wait until next Christmas to know what is what. I don't suppose it really matters at this point though...The results of that test will tell us which don't work, cones or rods in the retina. Either way, there won't be any changes whatsoever to his treatment or follow-ups.

Speaking of follow-ups, the one with Dr. Yeun last week was encouraging. He prescribed polycarbonate, polarized lenses for Gabe in order to protect his eyes from sun and accidental trauma due to sports or life in general. He stressed that it is imperitive that we maximize the remaining vision.

Appointment at HoOpono Low Vision Center in July.

Beeping Baseballs!

Gabe is learning new ways to compensate for his blurry vision. At baseball practice last Tuesday, he got his very 1st hit of the season which literally brought tears to my eyes! He timed the pitches and to him it felt as if he were swinging early, but in reality it was just right. I was so happy for him that we went to Baskin Robbins to celebrate! This was a huge accomplishment for him, as striking out had become very discouraging.

Also, found out that one can buy beeping baseballs to help sight impaired kids enjoy playing catch!

http://www.nbba.org/equipment.htm

On a similar note, we spoke to Gabe's Sensei at Karate and were able to agree on individual kata but no modified sparring due to safety concerns. They were also kind enough to waive the annual dojo membership fee for us.

Facebook

Facebook: "Vitamin World Like other parts of the body, the eyes can be affected by the stresses of time. Lutein plays a role in the maintenance of eye health and is the principal Carotenoid found in the central area of the retina called the macula.** Carotenoids are fat-soluble antioxidants found in fruits, vegetables, marigolds and other plants.**"

We started Gabe last week on a daily regimine which includes Lutein, Omega 3 fish oil capsules, and Goji Juice which looks, smells, and probably tastes like a$$. Poor kid. Considering the possible alternative though, he has gone along with it fairly willingly.

As a mom, I am struggling a bit. His Dr. has informed us that anything with wheels is probably no longer safe for him. That is to say that he won't be allowed to cross any major roads alone. He can still ride his scooter, bike, skateboard etc, in confined areas free from vehicular traffic. I will let Gabe decide when he cannot do even that any longer.

Brandon Heath - Wait and See [ Christian Music Video + Lyrics + Download ]

Facebook | Christine Steed Dunaway

Facebook Christine Steed Dunaway: Gabe had his ERG on Monday, May 3rd. It was a long and painful test for him, because his eyes are so sensitive to light. He was a trooper though and wanted me to be in the room with him. The technician said that he actually did better than some of her adult patients. I am so proud of my son because he was brave. We sang worship songs together in the dark while waiting for his eyes to dialate. It was a beautiful time of peace and I knew God was watching over him at that moment. Later, following the test, we had our "funny moment of the day: at Big City Diner, Gabe was still in dark glasses due to the eye test. The waiter/manager is joking around with us and trying to get Gabe to laugh. He says 'would you like me to bring you a scratch and sniff menu son?' We all died laughing. Sometimes you have to laugh when you would really rather cry...Makes bad things seem more bearable some how.

http://http://www.medicinenet.com/electroretinography/article.htm

Mine eyes shall see the glory! | causes.com

Mine eyes shall see the glory! causes.com: "Monday the 10th we have the 'round table' meeting at the school with teachers, special ed, etc. to determine the best ways to help Gabe in class. He will of course need special accomodations. I am curious to see what types of resources are available in the Hawaii Dept of Education's arsenal, considering the kids can't attend school more than 3.5 days a week due to 'furlough fridays'."

Mine eyes shall see the glory! | causes.com

Aloha to all! This is my very first attempt at actual blogging. Previous notes on fb and Myspace don't really count. This is where I will pour out my feelings, share information, publish personal research, and post prayer requests with regards to Retinal Dystrophy. Why write about such a rare, incurable, degenerative disease? My 11 year old son Gabriel was recently diagnosed. This has been a life changing, faith testing revelation. He is a courageous boy, and we are going to get through this together, no matter what the outcome. This first post is an overview of Cone-Rod Retinal Dystrophy.


Cone-Rod Retinal Dystrophy
What is Cone-Rod Retinal Dystrophy?
Cone-rod retinal dystrophy (CRD) characteristically leads to early impairment of vision.

What are the symptoms?
An initial loss of colour vision and of visual acuity is followed by nyctalopia (night blindness) and loss of peripheral visual fields. In extreme cases, these progressive symptoms are accompanied by widespread, advancing retinal pigmentation and chorioretinal atrophy of the central and peripheral retina.

The onset of decreased central vision with concurrent progressive constriction of peripheral visual fields occurs prior to age 10. Unlike other cone dystrophies, there is an inexorable progression to no light perception.

Evans et al. (1995) reported on the clinical features of 34 affected members in 4 generations. Loss of visual acuity occurred in the first decade of life, onset of night blindness occurred after 20 years of age, and little visual function remained after the age of 50 years. Central and, later, peripheral retinal fundus changes were associated with central scotoma, pseudoaltitudinal field defects, and finally, global loss of function. Psychophysical and electrophysiologic testing before the age of 26 years showed more marked loss of cone than of rod function.

When is it transmitted?
Typically, Cone-Rod Retinal Dystrophy is diagnosed following a loss of visual acuity and progressive constriction of peripheral vision before the age of 10."