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.
Friday, September 24, 2010
Tuesday, September 14, 2010
Comments Now Allowed
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Mahalo!
Mahalo!
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,
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.
"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.
Thursday, August 26, 2010
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.
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.
Wednesday, July 7, 2010
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.
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.
Sunday, July 4, 2010
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...
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...
Monday, June 14, 2010
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