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.

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.

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.

Aww man!

I tried posting this a few weeks ago, but ended up uploading the wrong video - so I'm trying again (finally). I guess I do say "aww man" an awful lot. This is his first phrase, or two words together he has said. He says it now with no problem, on command. It's pretty funny. One morning I was feeding him breakfast, he got a little too happy and knocked the bowl of oatmeal over. It splattered all over the place, including me. I said "Oh Gavin!", and he replied "Aww man!" I about died. It was the funniest thing... here is a snippet I caught a few days later. He says it towards the end.. I'm his mommy and of course I think it's the cutest thing.

I Know

This was written for me by my beautiful cousin, Mary. It took me a few reads to get through its entirety. It sums up exactly how I hope Gavin feels about me. Thank you Mary! I love it, and can't wait to write it up in braille and hang in his room.

I Know

Never think I don’t understand how beautiful you are
Sight is not important to recognize you
I am the one who knows you best by far

I know you are elated with joy
When I hear that melodic sound in your laugh
To hear you makes me the luckiest boy

When I taste the salt from your tears
I know you are scared and confused
But I will try to kiss away your fears

The wonderful scent of your perfume
Fills the air and smells so sweet
I know you have entered the room

I know you best by feeling and touch
Memorizing every curve of your face
You are the one I love so much

I am the blessed and grateful one
To have you to guide me along
God was right to choose me as your son.

Paradox of Time

I'm sure we have all read a version of the below, and many parts sound very cliche. However, there are some points that reflect my past year. I have grown, learned, and changed internally through my trials. I have a keen sense of the importance of life, the moments that my children will carry with them. The realization that "things" truly don't matter, regardless how nice they are. I hope you take a little bit from it.

Paradox of Time

The paradox of our time in history is that we have taller buildings but shorter tempers,

wider freeways , but narrower viewpoints.

We spend more, but have less, we buy more, but enjoy less. We have bigger houses and smaller families, more conveniences, but less time. We have more degrees but less sense, more knowledge, but less judgment, more experts, yet more problems, more medicine,

but less wellness.

We drink too much, smoke too much, spend too recklessly, laugh too little, drive too fast, get too angry, stay up too late, get up too tired, read too little, watch TV too much , and pray too seldom.

We have multiplied our possessions, but reduced our values. We talk too much, love too seldom, and hate too often. We've learned how to make a living, but not a life.

We've added years to life not life to years.

We've been all the way to the moon and back, but have trouble crossing the street to meet a new neighbor. We conquered outer space but not inner space. We've done larger things, but not better things. We've cleaned up the air, but polluted the soul. We've conquered the atom, but not our prejudice.

We write more, but learn less. We plan more, but accomplish less. We've learned to rush, but not to wait. We build more computers to hold more information, to produce more copies than ever, but we communicate less and less.

These are the times of fast foods and slow digestion, big men and small character, steep profits and shallow relationships. These are the days of two incomes but more divorce,

fancier houses, but broken homes.

These are days of quick trips, disposable diapers, throwaway morality, one night stands, overweight bodies, and pills that do everything from cheer, to quiet, to kill. It is a time when there is much in the showroom window and nothing in the stockroom.

A time when technology can bring this to you, and a time when you can choose either to share this insight, or delete it.

Remember, say a kind word to someone who looks up to you in awe, because that little person soon will grow up and leave your side. Remember, to give a warm hug to the one next to you, because that is the only treasure you can give with your heart and it doesn't cost a cent.

Remember, to say, 'I love you' to your partner and your loved ones, but most of all mean it. A kiss and an embrace will mend hurt when it comes from deep inside of you.

Remember to hold hands and cherish the moment for someday that person will not be there.

Give time to love, give time to speak! And give time to share the precious thoughts in your mind.