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Wednesday, February 24, 2010

Pure coincidence or planting of the seed?

I often think of this, but especially was thinking about it today in the shower and it's been on my mind all day. I thought I would share it. It serves as a sort of foreshadow to future events, and I didn't even connect it, until much later. It may be sheer coincidence, or sheer fate. Whichever you believe in. For me, it was a way of myself preparing for some major events in my life, and maybe as a coping mechanism? I often wonder if life works this way all the time, but maybe we are too busy, too closed minded, or just closed off from your own feelings to connect it. Either way, it is pretty profound and I think it's pretty amazing how God and the universe do their wonders, and even better when you recognize it.

When I was pregnant with Gavin, I was pondering (with great intent) of pursuing training in ASL. I had thought about this degree when I was in junior college, prior to transferring to Cal Poly Pomona. I even requested a tour of Cal State Northridge and Fresno at the time because they offered such degrees in ASL. Life took a different turn of events, and I went into the computer industry. For me, in the arena I worked in, the highest paid jobs that are closest to me to commute are in LA or Irvine/Orange County area. I worked in both LA and Irvine, as well as around Orange County. At the time, working long hours and long freeway hours do not work well with having two small children (for me). Letting go of that career for the time being to be home with my kids was what I decided to do. I worked part time from home on different projects, basically doing freelance for short period of times. It worked at the time, but wasn't really for me.

Fast forward to the months of bed rest with Gavin, and having a whole lot of time to ponder life! I went over and over in my mind of having to put to rest my career drive. I loved my job! I loved the corporate world and working hard and being rewarded. The thoughts of wanting to connect to something more meaningful wouldn't leave me. I liked the thought of being a stay at home mom, but I go a little bonkers. I want my hands in... something. So, I thought, well... I can start taking some classes and start with possibly being certified in American Sign Language. I wanted to be able to provide a service to someone, and do it with conviction, and not just as a job. I so badly wanted to help someone, or just make their disability a little bit more connected to those that don't have it.

I remember in one of my college courses, we had an ASL interpreter for one of the students. She was SO incredibly disconnected. It's like she was literally going through the emotions, and the student was everyday hanging on by what seemed like a thread. There was no emotion, no life in her, no connection to her student. It really resignated with me. I just thought, what a different experience this young man would have in his classes if she were just present? (I don't know the issues here, if there were any, just stating what I observed over a semester period of time). The feeling of what I had in those days in class, came over me when I was pregnant with Gavin. Yes, my prior jobs were fulfilling, yes I felt challenged, but at the end of the day... it was a job. I wanted something with more substance. I wanted to be able to touch someone's life and make it better/easier/funner. How this came forth with my desire to get trained in American Sign Language, I have no idea.

I brought this up to my hubby. He rolled his eyes, and said "you're on this again?", mind you with much sarcasm. We laughed, I told him to shut it, and laughed again. He knew I wanted to do this years back, and we were both wondering why on bed rest, was I wanting to pursue something I had not a clue in? I would be starting from scratch. I began doing some research, and figuring out exactly what I need to do. Tried (in my mind) to time Gavin's age and when I can start, etc. I even had very vivid, lucid dreams of being an ASL interpreter for children and young adults in college and LOVING it. Oddly enough, I began to do my own training. From my laptop. While on bedrest. Because I had the time to do it.

We agreed, that this passion would be the new direction I would go, once Gavin was old enough for me to start back at school, classes, etc. I was so excited for the new direction I was planning on going in. It would be something I could do once the kids were both in school, and have some time for me to work, even just part time. I would be able to be the mom at home with the kids, as well as satisfy my urge to reach outside of the house and make a difference with someone. Someone who is deaf, and who would need me as a service to help them in their everday life, and I would be along with them in their ride as they challenge themselves and pursue school/college. I wanted to be the person to help make their day better/easier/funner.

Now, I want to know if you are beginning to sense the irony here? I went from working in the corporate world, to wanting to start all over and be an ASL interpreter. This decision was made and discussed with my husband as I was pregnant with Gavin. A tiny baby in my womb, who was blind (and we didn't know). Was there something out there shaping me before I knew what was going to happen in the coming months? Was I planting the seed with wanting to work with individuals who have a disability, and helping them to easily experience the communicative realm in which they are a part of? All the while, not knowing the child in me, had a different condition that would take all my energy and time to get him prepped for the world which is sighted?

None of this really hit me. Like hit me, until many months after Gavin was born. I mean, I knew it, and me and my husband talked about how "odd" it was. But now, having brought Gavin to the point of where he is today, and the dedication it takes, not just on my part, but all of my immediate family. It is the same dedication that I was ready to take on in prepping myself for taking those classes. It is the dedication that I was convicted in taking on, and starting something new, regardless of how difficult the road would be, starting on a road you have no clue in which it would take you. And most of all, it was the feeling I had inside me, one that I wanted to provide an amazing service to someone who faces daily challenges of communicating properly.

What?!?

I know, it's a little bit out there, it's a little bit far fetched to convey the feeling of the want I had in me to help others. But it makes sense now, it makes much sense now. It's as if those feelings I had inside of me, for many years, truly presented themselves months before Gavin presented his beautiful soul to the world. It was my prep work, in all it's greatness, to help get me ready to raise a visually impaired/blind child. No, it's a different realm, but along the same path, and poses a parallel situation.

Call it fate or coincidence, but it was a force beyond what I was capable of knowing at the time. The great thing is, it worked. I didn't fight it, I didn't think too much of it, I just went with it. I followed what my heart, or the universe, or what God was telling me. Mind you, getting the news of his condition was just as devastating as you can imagine, but I feel all that we have done with trying to raise awareness, comes from a place that I feel I was already beginning to be shaped in for that position. The floor plan was laid out. It was already taking shape. It was happening before I knew it, and the dialogue between my husband and I took place with this new direction, before Gavin was even born. And within one year, I went from wanting to be trained in ASL to help others, to now teaching myself braille, so I can help my son.

Whatever you want to call it, I am glad we didn't fight it. It has helped me, and continue to fuel the fire of this new mission we are on. If Gavin's story touches one person, and raises awareness in fighting blindness, braille awareness, or just compassion of those with disabilities, then I know we have done our job.

Tuesday, February 23, 2010

Hide 'em and Find 'em

I have heard the Hide 'em and Find 'em Easter eggs are back (already). Wasn't it just Christmas? Well... it's time to get ready for Easter, even though half my Christmas village still sits in the garage still not all put in their boxes, and packed away in storage. Sheesh we are slackin'.



These are the "talking" eggs that helps kids find their hiding spot. I have heard rave reviews from my friends who have VI children, and this will be our first year using them. Although they are not specifically for children who are visually impaired, it is helpful for them. I think these are great for even the little ones. Honestly, now that I know about them, I probably would have bought them for Gavin this year, regardless of his vision. They are too cute! I know there are some other versions out there, but right now they are at Target, and last year they sold out quick.

Happy Hunting!


Monday, February 22, 2010

GG Newsletter

I am putting together a newsletter for Gavin's Groupies. If any of you new readers out there aren't familiar with Gavin's Groupies, it is our VisionWalk team name. We find new and exciting ways to raise awareness and money for the Foundation. We have SO many exciting events, news, etc.. that we decided to put together a newsletter. Your inbox will not be inundated with daily or even weekly emails. We plan on this being a once a month, or every 2 month newsletter. It will also feature new, wonderful blogs I find that have helped our journey, it may contain announcements from our sponsors, etc.

If you would like to be on our mailing list, you can leave your email as a comment, or email me.
jstevens04@gmail.com

Thank you for your continued support.

Saturday, February 20, 2010

Step away from your comfort zone

Gavin will be 17 months in a few weeks. He is still not crawling or walking. This is pretty typical for a blind or VI (depending on the impairment) baby/toddler. He is slowing getting the concept, but is not yet connecting all the pieces. He stands, but not independently. He pulls himself up to a standing position with no help from us, but while supporting himself against the couch, etc. Once he is up, he can safely get back down. I honestly think he is going to walk and not crawl, but his PT and myself still work on the crawling, many, many hours a week. He always wants to go back to his comfort zone, which is flat on his back, because it is full body contact to the ground. But yet, he can still kick his feet and move his arms, and have the safety of his full body touching the ground. This position he is getting better at, but when he goes into an uncomfortable position, his automatic response is on his back. He is safe there. That is a constant struggle, and he is strong (physically) and heavy! We get a work out over here. lol

Gavin's personality is a strong willed one. He knows what he wants to do, and won't allow you to put him in a position that he isn't willing to participate in, just yet. This draws a huge protest for his Physical Therapist. He loves her, and plays well with her, but when she (or I) put him in the quad position, and try to get him to not kick his feet out under him, it is a time for utter shrieks. On one hand, I try to hold him to the, "it's ok honey, you're fine" and try not to baby him. On the other hand, my heart feels for the little guy. Can you imagine not being able to see where you are, and be put in positions you are not used to, nor comfortable in? I put myself in his shoes, during his protests and at times I hold back my tears. But each position is a step closer. And each position we put him in, he will start picking up on his own, and he has. I am so proud of him!

I just know how much his world will open up to him once he starts walking/crawling. It will be a whole new world for him, and another daily pot of coffee for me, to keep up with him. I know the day is near, and we push him, but not to the point of where he is terrified. I believe the tactful way in which we are doing it is helpful to him. We have tried everything. Are there any other avenues you parents who have encountered the same issue tried that you felt worked? I am open to hearing any and all suggestions.

Thanks for sharing...

Thursday, February 18, 2010

Mommy time out

If many of you have kept up with this blog, or know us personally.... we are always on the go. Rarely home, involved in everything, and we like it that way. Couple this lifestyle with the emotional roller coaster that last year brought and that equals not a whole lot of time to focus on me. I didn't take the time to go to the gym, which I love doing. I didn't take the time to focus or even listen to my body. Honestly last year was a bit of a fog, for many reasons. Not just Gavin, but family tragedy and death and all that comes with that.

Let's forward to the beginning of this year. I did not do a New Year's Resolution, but rather I promised myself I will devote more time (and not feel bad about it) to me. I began walking with Gavin to pick up Landon from school. I began drinking more water (which I am horrible at), and I began taking time out to myself each night, to read, to research, and that to me is relaxing. I noticed that I was extremely fatigued, and realized I had been for many, many months. The Type A side of me, would have all these things planned out in my mind. I was, however feeling like I didn't have the energy, nor the desire when it came to wanting to do them. In my mind I did... I just had difficulty executing.

I sat and realized that I had been feeling this way for probably all of last year, but I chalked it up to emotional fatigue, and just overall being drained from all the events that last year brought us. It started hitting me, that I felt like what I was feeling was just more than stress. Needless to say, I had blood work done. I found out my hemoglobin count was barely on the charts (anemia). I was prescribed iron two times a day, along with a specific multivitamin and additional mineral (along with a dirty look from my doctor). *Low hemoglobin does not equal anemia, so I learned... but in my case, my problem was insufficient iron = anemia.

What I have learned from this is, I was in such a fog for so long, I didn't even realize I wasn't taking my multivitamin, and hadn't been for who knows how long. I am typically diligent about this, since I don't eat meat, and work everyday to maintain my protein intake, etc.. I guess I just took a whole year off from my health, and was paying for it. Big time. I am sharing this with you, because I know so many other parents, who have emailed me, in the middle of what I was going through last year. Taking a back seat to their health, and just trying to survive in a sense. Take care of yourself! I cannot STRESS how different I feel just a week into my iron pills. My thought process is quicker, I don't fight the want to take a nap during the day, I'm not as out of breath, and the list goes on. Just after 1 week! I feel emotionally and physically... refreshed.

Just after one week.

I am not giving medical advice here, I'm not saying to go buy some iron and take it 2x day (that amount should only be prescribed and monitored). What I am saying is, dang it... I let this go for way too long. I am a little bit bothered with myself for allowing it to go this far.

This isn't your typical blog post, since it isn't about Gavin, but about me. But I wanted to share with you, because I feel so differently in such a short amount of time. I had no idea (even though I've been anemic before) how horribly anemia can affect your day to day duties and attitude. I urge you to stay on top, and listen to your body. Us moms tend to worry about the little pitter patter of feet in the house, and not worry or focus on ourselves.

Listen to your body, and take a day to make a doctors appointment for YOU. Your family, and body will thank you :)

Wednesday, February 17, 2010

The road to a cure... why not?

You know, I feel compelled to write about this topic. It is on my mind a lot, and maybe I will be able to figure it out a little bit more if I put my words to blog and see what happens. I have read some articles, been a part of discussions, and read emails from some people who are visually impaired who have a different opinion about gene therapy. These opinions, as much as I respect them, are the furthest from what I feel. Some opinions out there, aren't really supporting gene replacement therapy or finding a cure for blindness.

I can understand that. It's taken me a while to understand. If this was 12 months ago, I would have thrown up my hands and say "What?!?"... "Not interested in a cure?" But today, I get it. I absolutely cannot speak from personal experience of being visually impaired, since I am a sighted individual. I can, however, speak from someone who has first hand experience at raising a blind child. I feel there is a distinct different 'feel' in this arena between parents of blind children and adults who are blind.
*Disclaimer - I am not speaking on everyone's behalf, just what I have personally seen myself

Some people wonder why I (along with other parents) want to pursue a cure. Why would we want to put our child through any more medical appointments/procedures or unnecessary painful interventions than there already needs to be? My argument to that, is we haven't! Yes, the ERG, which was done under general anesthesia, and was a procedure that needed to be done so we can see what is going on in the eye. But that would be done with us wanting a cure or not? My son's blood work is the only other thing that we have done to try to get some other answers from the geneticist at Carver Lab.

We, as his parents accept his condition. If you are around us for 5 minutes, you will see that. We don't change our language around him, we aren't afraid to talk about it, and share his story. I don't shy people away when I get the question, "How did you know he needed glasses?" 20 times a day. We have over 30 braille books in our collection, we are actively exposing him even now to Braille. We have taken ownership of his blindness, and I feel that radiates to our friends and family. The LCA condition is another genetic makeup that makes Gavin, Gavin. The same as the genetic makeup that makes you have blue eyes, or blonde hair or to be 6' 5'' tall.

HOWEVER, with all that goodness all said.... I will go to my grave with the pursuit of a cure/treatment for blindness and have played my part. And I will feel pretty darn good about it. Finding a cure for blindness, does not mean that I do not accept my son or other blind individuals? I am not defying fate here. Most of us pursue interventions to make our lives easier and better, ie prescription glasses, hearing aids and as far as chemo treatment for cancer patients. We all want the best, fulfilled life possible. I am not stating that my son cannot have that being blind. I am saying, from a parent, I will do all that I have in me to challenge LCA and what it has done to his vision.

If this is never in God's will for him to have gene replacement therapy, then it isn't. If he is old enough to make that decision, and feels that he does not want/need treatment, then so be it. But as long as I am in the driver seat, I will pursue all avenues of options for him.

And I don't think that is a bad choice.

Friday, February 12, 2010

Perspective for me?

I'm getting a little tired of starting each new post with something to the effect of "...sorry it's been so long". yadda yadda yadda. But seriously, can we add another 20 hours to the day? I'm going to attempt to layout our day, maybe that will help me try to get some of my own perspective.

6:00 am, wake up, feed both boys, dress both boys (or direct Landon), help with hair, yell "take your vitamin, brush, floss and rinse your teeth" 100 times (and this is to both Landon and my hubby - ha). Play time with Gavin, throw in a load of laundry, attempt to jump in the shower before Troy leaves for work (otherwise I don't get one until Gavin's nap). Dress, unload dishwasher, clean breakfast mess, ... you get the picture.

8:00 am Landon out the door to school, either Troy or I take him. By 9am, we are back at the house if we run errands in the morning, because Gavin's teacher will be here. By 10:30, I throw Gavin in the wagon and we go walk to pick up Landon. If we're running late, we take the car. Get home, lunch for both boys, start on homework, attempt to put Gavin down for a nap, I'm up and down the stairs 20 times making sure the diaper isn't coming off *this is getting old*. Attempt to clean up lunch mess, and Gavin's mess from the AM (toys, puzzles, etc that is thrown across the entire living room). Continue to work on homework with Landon, if Gavin is sleeping, Landon rides his bike for a bit, I attempt to do more laundry, clean EVERYTHING, and you get the picture.

2:00 pm Gavin awake from his nap and the next teacher arrives. Stays here for about an hour, then me and Gavin work on his therapy until daddy gets home. I have to be cleaver and plan out dinner the night before (this isn't always successful). And then it's a race against the clock to get dinner prepped and served when dad gets home from work. After dinner, clean up mess, finish cleaning what didn't get finished before, then it's baths, books and bed by 8pm.

Not only do I feel like I don't have anytime to sit in front of a computer and hammer out a post, I also don't feel like I have the creative juices to make the post worth reading. Of course, again, the above is complicated by the fact that Gavin's eye pressing doesn't allow for him to "play" on his own and me be off doing my thing. It is constant monitoring, and Murphy's Law prevails all the time. Just when I think he's good and content, I turn my back to attempt to pick up or just sit for a minute with my cold coffee, there he goes! I found it's easier to not fight it, and get frustrated with trying to do everything, so I have thrown things out in my life to just focus where I need to be focused. I'm still part of the Little League board, but have taken a step down in position. I was not team mom for soccer, and I will not be team mom for baseball again either this year. It's easier to remove the pressure from doing everything, than feeling like I am not giving 100% to everything. It was tough for me to reach this place, but it has helped me. :) I refused to cut out helping in Landon's class. It's important for me to feel like Landon is getting as much attention as Gavin. We have also included Landon in with Gavin's therapy, where we can.

I know this craziness is typical for all parents, it just varies in details. I love devoting all my time to my children, this is only a small amount of time they are with us. Before you know it, they will be off in college, married, etc. Right now, I have all this time with them, to really be a part of their life and involved, and I want to be proud of that when I am older. As difficult, stressful and time consuming it is, I would never have it any other way. That doesn't mean I don't have a right to complain sometimes, right? lol

So, needless to say. We are still working on the Gavin R Stevens Foundation, we are still working on events for Gavin's Groupies, we are working hard to prepare for our "Night without Light" dinner event (which I'm so excited about). I hope you guys sign up for it! As well as VisionWalk in June, and I am also trying to get some coroporate sponsorhips (hint hint). So, in short, we are still here.... and promise to continue to update with important events with Gavin.

My favorite part of my day right now is sneezing (even in another room), and having my little man say "Bless you" and smile. ;)