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.
Thursday, August 26, 2010
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
Tuesday, June 8, 2010
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.
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.
Monday, May 17, 2010
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.
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.
Monday, May 10, 2010
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$$. Poor kid. Considering the possible alternative though, he has gone along with it fairly willingly.
As a mom, I am struggling a bit. His Dr. has informed us that anything with wheels is probably no longer safe for him. That is to say that he won't be allowed to cross any major roads alone. He can still ride his scooter, bike, skateboard etc, in confined areas free from vehicular traffic. I will let Gabe decide when he cannot do even that any longer.
We started Gabe last week on a daily regimine which includes Lutein, Omega 3 fish oil capsules, and Goji Juice which looks, smells, and probably tastes like a$$. 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.
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