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Thursday, November 26, 2009

Dessert in the Dark and a thank you!

Happy Thanksgiving to all my blog friends. I have "met" many wonderful people whose situation is similar to our families thanks to this blog. I have also "met" many kind, people who continue to give their positive comments. Thank you to all of you!

We will be starting a new tradition and will be eating our Thanksgiving dessert in the dark. We will be bringing Gavin's world to us on this special day. I have so much to be thankful for, but I am especially thankful for my sight, which I have always taken for granted. I see things in a different way now, thanks to my son. And the world is a lot brighter!

Happy Thanksgiving to you and your family.

Thank you for all your support.

You mean a lot to us!

xoxo
Stevens Family

Monday, November 23, 2009

Paying it forward

Last night, I had the pleasure of speaking to Ethan Haas, the father of Corey Haas. Corey is the little boy mentioned here in the blog that is the youngest in the world to have received gene therapy and vision restored.

Ethan found my blog and reached out. I went to sleep last night with a much better understanding of not only the procedure, but of the the key names of doctors, research scientists, etc involved in the gene therapy. He mentioned Corey is now playing Little League, and does not need to use his white cane. Many times during our conversation I was moved to tears. The family has hit the nail on the head, and they want to help others just like Corey has been helped. They have helped me gain a better understanding as well as offer a deeper sense of hope for our future. They are now recruiting candidates possibly as young as 4 years old. This is a HUGE change from just a year ago, when I believe the youngest candidate was a teenager or young adult.

We are going to move even more quickly with getting Gavin's blood work done. I see a need to do this sooner rather than later. Just so we know what path we are on with the identified gene. We still do not know what gene Gavin is affected by.

Thank you Ethan. Thank you Haas family for sharing your wealth of knowledge and your son's story not just to me, but to the world. I appreciate your pay it forward attitude, that's what this is all about. Helping one another.

Wednesday, November 18, 2009

Eye pressing to eye poking

Gavin's eye pressing has moved to a whole new level. I knew this day would come, but I thought it would be later, and hoped deep down inside it never would come. Along with the fists in his eyes and pressing down on his eye sockets, he is also getting his index finger and pressing on top of his eyelid on top of his eye, and pressing back, deep into his eye socket. Almost as if he is gouging his eyeball out. It is done with force, and the first time I saw him do it, I broke down in tears. In the back of my mind, I had been watching out for this, and when he did it, and got a new sensation, I knew it would be another level of habit to try to break.

I think I have stated before, my days are dependent if it's a good or bad eye pressing day for Gavin. If it's bad, then almost all of my list of to do's are written away, and my agenda for that day is to keep his hands occupied and out of his eyes. At times with mild restraint, and I know that sounds barbaric, but at times it is needed. Today, is a bad eye pressing day. A bad eye poking day, and I am just now getting my break to shower and eat since he has just laid down for a nap. I am exhausted.

I think we will be moving forward with purchasing the rec specs/goggles and the snuggle wraps.

Just another little affirmation to those parents out there who are going through the same thing. I know in the end it will all be worth it, but I feel your pain and your exhaustion.

Don't give up, I know at times I want to because it's easier to just let him poke.

Hang in there. I'm trying to.

Monday, November 16, 2009

Funny Five year old

Funny things said/done the past week or so with my 5 year old, Landon. I wanted to document for me, to remember -- but thought I would share with you as well.

3. I was asked if Santa was real. *insert crying face* I did my explanation and further asked if we can make a trip to the North Pole. He said if we got in the car and started driving where it said "N" we would be there really fast.

* The "N" he is referring to is the digital display in the car that tells you which way you are going, North, South, etc.. It's that easy, right?

2. Landon asked his dad if King and Queens and castles were real. Troy answered, and Landon asked asked in surprisement (with wide open eyes) "Do the Jacks and Aces live there too?"

3. I told Landon it would be fun as a family if maybe we got a karaokee machine for Christmas, as our family gift. He replied, "No, that wasn't on my order." "Order?", I ask in utter surprisement, but knowing where this was going. "Yes", he said. "My order to Santa is already done, and I didn't put the karaokee machine on the list".

* Um.. hello!?! ORDER? I wanted to ask him what his method of payment was.

Wednesday, November 11, 2009

10 things

I had 2 emails sent to me to repost this on my blog... so here it goes. I think it's pretty boring, but fun, nonetheless. Let's see what is on the top of my head of 10 things you may or may not know about me. This is a little out of my element since this blog is for my boy/family -- but hey I will give it a shot.

1. I don't eat meat, but don't consider myself a vegetarian. Weird? Yeah, I just say, "I don't eat meat"." I haven't for about 16 years.

2. I think a sandwich is a waste of time if the bread is even remotely on the road to becoming not fresh. The same with chips and salsa. You can have the best salsa, but if the chips aren't any good -- waste of time. Bring on the lard and some good chips! lol

3. I don't like leaving my kids. I enjoy being around them all the time, and relish in every moment. Yes, I need a break from time to time, but I choose to always be with them. I know these days will only be memories one day.

4. I LOVE going to the movies. I don't care how expensive it is now, I am a happy person at the movie theatre. I think that is what I miss most about having kids and not being able to get up and go and make my 2x week trip to the movies.

5. Inside I truly feel like an old soul. I feel like I should have been born in the 1800's, I get such a nostalgic feeling when I look at pictures, etc... from that era of time.

6. I secretely miss my maiden last name as my last name.

7. A few years ago, a little boy named Anthony came into my life unexpectedly at the mall. I still carry the sorrow, and helplessness as he lay dying in my arms. I kept him alive until help arrived, only to have him pass away 12 days later. The reason, CPR performed too late -- I always have the "what if" nagging at me when I see little boys his age. What if I helped him quicker, what if I yelled louder at the people around who stood to stare, and not help...

8. Komodo dragons and cockroaches make my heart skip a beat in pure, utter fear.

9. I very much dislike hospitals, and have passed out before from pure panic being in one. Along those lines, giving blood can have me on the floor as well. When I was pregnant with Gavin, since there was so many problems w/ the pregnancy, I was giving blood 1x week to check my hormone levels. Troy and I would drive 40 minutes to visit this ONE nurse who knew how to draw my blood without having me pass out. I would call before to make sure she was on shift. Wack - O! lol

10. Always wanted an "outie" belly button when I was pregnant. All I got was a deeper "innie", it looked like I had a doughnut under my shirt.

I hope you try it, that was interesting! Post 10 things about yourself that you may not think others know. Let me know, so I can check it out. ;)

Love Disney

I think this is pretty cool. We are Disney freaks, and it's so nice they are making this an option for visually impaired. I'm sure this is a start to many more accomodations.

Monday, November 9, 2009

Happiness and the choice to choose it

Your success and happiness lies in you.
Resolve to keep happy,
and your joy and you
shall form an invincible host
against difficulties.

- Helen Keller
I have said this before, I am always moved when I read Helen Keller's quotes, and really try to understand what point she is trying to convey. This is one that really hits home. My happiness here in my home for my family, lies within me. Regardless of the trials, if I strive to be happy, if we strive to be happy, we will be. I truly think happiness is an innate force we are all given when born and something we strive for subconsciously. It's a conscious decision however to live your life, happy. We can get be led astray with life's difficulties, throw our hands up and cowardly have our pity party (trust me I have done that). We can lose focus, play the victim, and allow adversity to get the best of us and lose our destination. The day to day shuffle, the pressure of finding balance between family, work, obligation, life can become overbearing and unweildly. However, if we choose to continue to stay on the path of happiness, we will not get lost.

For a while, at the beginning of my learning time (that's what I like to call the phase right after getting Gavin's diagnosis), I did not want to be happy. Sure, I would say I wanted to be, but I did not want to be happy. I did not want to be happy with the news I was given, our new life with our son and a disability I knew nothing about. Being happy meant I was accepting it. I did not want to accept it, you can read that about here. But now, after the acceptance, comes happiness. I am naturally a happy, see the glass half full type of person. I went off track a little with my pursuit of happiness, but it was always inside. It was my choice to choose it. For a while, I did not choose it.

I hope you realize it is a choice to choose happiness. Whatever it be, defined only by you. Not by society, not by a measure of success, not by your peers, not by things, but by you. Our days are numbered, our life a blink of time. Find your joy, define it by your definition and choose happiness. Our life with Gavin, is a much happier place than 365 days ago. This time last year, I was confused with my inner turmoil that something is wrong with my child, and feeling like noone else shared my torture. Today, we are happy, I am happy and our choice to live our every single day full of happiness, is a choice we will continue to make.
I hope you do the same, life is so much better making the choice and knowing it is an option.


Disclaimer: Just speaking from my heart, and my experience. I know life throw some pretty scary, sad times at us. Not meant to put an easier-said-than-done overtone on this. Just looking back and sharing what I have learned through my sadness.

Tuesday, November 3, 2009

Understanding

I'm having difficulty uploading the video, so I will just add the URL here so you can link to YouTube to view it. There was a lot of buzz last week about Corey Haas. He was on Good Morning America, explaining the gene replacement therapy he received. He's 9 years old, has LCA, and was involved in a study that left him with sight. It's pretty inspiring, hopeful as well as emotional to watch this. We all know, my hope is for my son to one day have some vision. I cannot but help to put myself if his mother's shoes. I also cannot help to think that may one day be Gavin.

As I watched this, with a very heavy heart, the only thing I can think of is "we are on the brink of something amazing happening, sooner rather than later." The articles I have read 8 months ago, compared to what I have recently been informed of, just in those short few months I have seen progress. Whether it be more awareness, or younger participants, etc. Maybe I am just more aware, but the momentum is continuing, and I will do my best to raise awareness in my little corner of the world.

Let it be known. Gavin was created by God, just the way he is. I love him just the way he is, I accept him as he is, I treasure him. Just as he is... which is perfect. I have said it before, I will NOT let his vision impairment hinder him from being the best person he can be. I also will NOT let it define who he is. He is more than his disability, it is only a fraction of who he is. These are words I have said many times, but they are so true. His world, his life, is not any less meaningful than any of ours, just because we do not live in the darkness he does. One day, this gene replacement therapy may be the norm. I have to prepare myself with the reality that he may choose NOT to have it. I will respect that and we will continue on.

I speak so highly of gene therapy, for one, I am in complete awe with what researchers, doctors, etc.. are capable of doing. And, two... to give someone sight, I am just speechless. I am speaking from a parents view point here, and not someone who lives with a visual impairment. I know there are two different views on this topic, and some of those views, honestly, are quite shocking. It just shows how much I am learning, and how you truly cannot judge one's position in life without living where they have. There are people who live with a visual impairment, who accept the impairment, and do not view it as a hinderance, or as something they would want to change. On the other side, you have those who would jump at the chance to see a little bit more. Of course, for my son, I am on the side who would go to great lengths to do whatever it takes to give my son more vision.

I will also sit on the other side with him, if he one day chooses not to go forward with therapy, if he is so given the chance. I hope to one day have this be an option for him, but I have learned, what I want more than anything is to understand. I want to understand his perspective. I will always respect it, but would love to understand. I'm sure he will show me, he already has, and I am going into this with a complete open mind, letting Gavin and God guide me down this road.

As a parent we want to fix, fix, fix our child if we can. Fix the broken bike, fix the scraped knee, fix the bump on the head, fix the blindness.

Now as a parent with a child with a vision impairment, all I want is to understand, understand, understand. In my eyes, Gavin does not need to be fixed. He is just as he should be. Would I like him to see more? Definitely. If he chooses to make that decision not to, and old enough to make that decision, would I support him? Definitely. He is who he is, just as he is.

And I will understand.