Tuesday, September 29, 2009

My birthday angel

Have you ever had a moment that has literally taken your breath away? Your breathing is actually haulted because you are trying to process a moment that you can't begin to conceive? Words you can't begin to believe?

I have, this year.

Have you ever had a moment when you felt so defeated, because you can't fix something, you can't make it better?

I have, this year.

Have you ever felt so much gratitude from others that your attitude towards mankind and the sincerity of good-hearted people, has changed?

I have. It happened this year.

Has your passion for a cause actually take over and drive you towards an unknown destination, because the journey and impact is worth it?

We have experienced this... this year.

Have you been so saddened that the depth of your heart truly aches. Your body actually hurts and the sound of your cry is different than any other type of cry that you have experienced?

I have, this year.

Have you ever felt grateful for something that has happened to your child, as sad as it is, because you know other parents are holding onto the last living moments with their child?

I have, this year.

I have questioned everything, and at the same time relinquished all my questions to someone who has the answers. My faith, my heart, my soul has been changed.
I am a different person and changed for the better, all because of a little boy.

All in one year.

20 months ago, I was ecstatic to learn I was pregnant with you.
18 months ago, I was distraught, I sat in the ER thinking I lost you.
16 months ago, I was worried and hope to one day just hold you.
12 months ago, I was blessed to have you.
9 months ago, I mourned a part of you.
Today, I am thankful for you.

My promise remains as it was the day you were born. I will love you, guide you and help you become the best person you can be. I also promise to enjoy every single moment we have together, and make you smile and laugh. I will teach you not to allow someone else to narrow your soul by making you be unkind to the world, when the world is unkind to you.

It's the least I can do, monkey. I can never repay you for what you have done for me.

I am on this roller coaster sitting beside you in the front seat with your daddy and your brother. Our entire family joined our ride and took a seat, and I can't wait for the next turn...

Happy first Birthday Gavin.

I am so proud to have you, and even luckier to be your mommy.

I love you more than you could ever imagine.

And then some more.

We can all see...


This picture isn't out of the ordinary, however my 5 year old surprises me everyday with his uncanny, mature honesty. This picture was taken a few weeks ago, Landon was on his way out to soccer practice with daddy. Me and Gavin were staying home, Gavin was having a bad eye-pressing day, and was going to stay to put him in the bath to hopefully get him to stop.

Landon walked over to Gavin, and I eavesdropped on the coversation. I'm so glad I did...

Landon: "Bye buddy, I'm going to go to soccer practice. I wish you were going, but that's ok, I'm going to show you how to play and be the bestest soccer player. Remember I love you (he gets louder) SOOOOOO much (then whispers again) I would give you one of my eyes so you can see me play soccer. Ok Buddy!"

Oh hello tears! I'm so lucky to have them both, and they're so lucky to have each other. Landon's been asking again if Gavin's ever going to see. I told him one day he will, that's why we are dedicating ourself to the Foundation and everything we do. He said, "Why because if we do good, they'll give him new eyes?"
(This time, we were driving and I was taken back for a second.)

"No honey (deep breath), but the scientists are working really hard to find treatment to fix his eyes."

"That's ok mom, he sees me. He sees me with his hands, and people who can't hear very good hear with their eyes. Right mom?"

"Yes, honey. We can all see."

Landon glances to Gavin and grabs his hand as he's sleeping in his car seat.

I picked my heart up off the floor, and we continued on with our drive.

I love these moments.

Empty bucket equals happy monkey!

Two posts in one day... I should keep going and FINALLY get the golf pics up from the tourney -- I have been seriously slacking.

Part of Gavin's therapy is to take items one at a time, out of a bucket. We need to work on him putting them back in, but as you can see.... once it's empty - it gets tossed. I love his smile when he knows his bucket is empty. The innocence is so cute.

He's into tossing things left and right. I need to videotape me opening the car door, he tosses his toys, and when I open the door, they come charging at me and I look like a complete fool in front of everyone trying to catch these darn toys. I look like a drunk juggler. Of course this happens when I'm picking Landon up from Kindergarten, and there's a line of parents, already irritated there's nowhere to park, and then there's the drunk juggler taking her sweet ol' time. The trick is to make sure to grab them before they hit the curb and end up in the gutter. We come home with at least one gutter toy a day that gets tossed into the bathtub. Oh the joys!
video

*Disclaimer*
Apparently talking in high decibels when I get excited counting bucket items is something that is just too tempting too resist.

Firefighter's Fun Muster and Chili Cook Off













We didn't win the chili cook-off, but we had a lot of fun! Our usual Gavin's Groupies of family and friends showed up with their orange shirts to support us. We were able to get some people interested in Vision Walk, pass out information and answer a lot of questions!

We were invited to participate in another chili cook-off in October. I have already perfected our chili recipe, and am out to win. hahaha ;)

Wednesday, September 23, 2009

Dr. Bill and eye pressing series

As many of you, who are faithful readers (are there really any out there?) know, my huge obstacle right now is the eye pressing (eye pushing, eye rubbing, etc.). Gavin, on some days digs so hard in his eyes, he leaves marks, his eye socket gets bruised, and his eye balls actually get and look very irritated and red, and they start tearing. Beyond that, his eyes appear very sunken, and his face does look distorted. I have been noticing more and more looking back at pictures from just a few months ago, how the shape of his face does appear to look different. I thought it was just me, and he is getting older, so obviously I know facial characteristics begin to grow and appear different and change. Tonight, however, I learned some new facts about eye pressing from Dr. Bill Takeshita. (The story about Dr. Bill is fascinating, he is the Chief of Optometric Services at the Center for the Partially Sighted. He was fully sighted eye care professional, who is now visually impaired).

We had a small conference, and had some parents who had children who are visually impaired (most of them were parents of LCA children), actually I believe all were. Anyway, Dr. Bill discussed some facts about eye pressing. I learned a lot, and thought it was imperative to share and be able for me to look back at this post, and remind myself of a few things.

I realized I need to restructure some things in my life that I have taken on. His eye pressing, has gotten that bad. I am in tears daily. Many times a day. We do our play, and our interaction, and after a minute he's done.

My job every minute, every hour, of every day is keeping hands occupied.

He is getting older, so I don't have this baby on my hands anymore like I did a few months ago. I have a curious beginning stages of a toddler on my hands, who is blind. It's nice to hear other mothers from tonight, even though we have all previously met and discussed this frustration. As a parent with a child with a disability, I am not put on a pedestal, and I did not lose my right to get agitated, irritated and frustrated. I do. I handle it appropriately, but I break down every day. The eye pressing has gotten to that point and that bad. It is haulting some motor skills, because he is totally content to sit in a room and his fists in his eyes. He would be perfectly content with doing that hours on end. I'm not joking. I, however, pull his hands away so we can work (play), he gets irritated, so I redirect him, to get his focus back, and we begin working again, he's over it, fists goes in the eyes, and the cycle continues.

Dr. Bill explained the reason behind the eye pushing (pressing), and as I have previously heard before, they see streaks or glimpses of light when you apply pressure to the retina. This is Gavin's way of "seeing", he is stimulated by the flashes of light you can say. I know there are other theories behind this as well. You can do some damage if pressure is too forceful (which Gavin's is). You can damage the surrounding bones around the eye, and not allow them to grow properly (causing some distortment in the face). You can actually thoroughly damage the eyeball, as well as cause the eyes to be pushed very far back in the head.

What can you do to help this?

We bounced many things back and forth, many great ideas were brought forward. We are going to look into Snuggle Wraps, which my friend, Kris already mentioned to me a few months back. As well as REC specs, the goggle type glasses athletes wear. I heard they have cute color ones for children at a Child's View. Gavin, as little (and spunky) as he is, grabs a hold of his glasses and tosses them. The older little ones, I hear are actually getting their little fingers and sticking them under their glasses and pressing. The wraps are for a last resort, but it is something we need to buy for those days when it's really bad and Gavin is doing himself serious harm to his eyes and needs to be restrained for a short period of a time. I know it sounds barbaric, but compared to the damage he is causing his eyes, bones and face as a whole - it doesn't seem like there is another alternative for those moments.

Another thing is the lumination in your home. LIGHT IT UP! Maximize and stimulate your childs remaining vision so they do not get bored and resort to eye pressing (even if they only see light). Suggestions included, paint walls white/off white. Track lighting, torchiere lamps, etc... Even a corner of the room with some poster board that is white and illuminated with lamps to give them their spot in the room where their vision can be maximized, hopefully stimulated, and eye pressing down (make sure light is diffused or you will bleach out the area). You, however do not want the light to be blinding, this will have an adverse effect. You can also use grey sheets, blankets, when your child is on the floor. One of the parents even suggested maybe a type of bracelet that makes noise or has a small bell on it, that reminds them to put their hands down, since it is a reaction for those who do this behavior, almost as if they don't know they are doing it. Other parents suggested reward boards, for keeping their hands down, and a treat for going periods of time, and eventually spanning that time out. Gavin will roll to his tummy and rest his entire head, even body on his fists. Looking back now, Gavin's room is not lit up, his walls are a very neutral beige, the carpet is beige, his furniture is a light wood, etc.... We have some work to do here, and when Dr. Bill was talking about this, I felt like an idiot! I had a DUH moment, like really... I should have known that! It's pretty obvious. I didn't, and it's part of this live and learn, and share attitude.

I applaud all of you who struggle with this. I know Gavin's age is at a very difficult one, he is not walking, so he is not too mobile to keep his hands occupied. I know as he does more, this may diminish for some time, but I know the parents who have children who are older than Gavin, struggle so badly with this behavior. Dr. Bill expressed, it's something you do need to break, and you do need to stop the behavior. That being said, we at home, have decided to restructure things we/I have taken on and I need to concentrate even more time with him, to break this. My full time job is "keeping his hands down" and occupied. My new job will be the same, but coming up with new ideas to keep him stimulated so we break this. Wish us luck, and I wish all you parents the same.

PS.. If you were in on the conference, and I left some info out, please let me know so I can include it.. thank you!

** Here is a great link for home modifications for people who are blind or have low-vision. Thank you Vision Aware!

Makeover

Yes, I need a makeover, but what I'm looking for is a blog update/makeover. Anyone have anybody they can point my direction to get a little updated look and feel to this blog? As we are fast approaching Gavin's first birthday, I think I need to invest some time to appropriately represent his age with his picture. With that, I want a new look....

I did a quick search, and even sent out a few emails for blog design, but not much luck hearing back.

Anyone know of a good blog designer?

Monday, September 21, 2009

Role reversal

“While we try to teach our children all about life, our children teach us what life is all about.”

That's all I got. It can't be more true.

Thursday, September 17, 2009

Rant, Rant and more Rant

With this blog, I bring the raw truth. The truth of Gavin, our emotions, as well as the good, happy times. Right about now, what you are about to read is a rant. I apologize in advance, but here it goes:

Dear fellow grocery shoppers,

When my son and I are walking through the store, and you tell me how adorable he is in his glasses, my heart melts (he is pretty darn cute). When you ask about his condition, and I pour my heart out explaining quickly about his blindness - I appreciate your concern. But when you start waving your hands in front of his face, for the mere hope, that in that given second he will miraculously have vision and prove all my words wrong, I don't appreciate it. When I tell you, he sees well with his hands (as you can tell by the endless toys pouring out of my purse as a way to keep him occupied while I do my shopping), and you try to grab his hands (right after I tell you he is very sensitive and does not like hand grabbing), I do not appreciate it. When I tell you his glasses protect his eyes, and act as a deterrent to the eye pressing, please please please don't tell me he is probably just tired, and he is rubbing his eyes because possibly he skipped his nap. Really?

I am the first to raise awareness and am open to questions, even on my darkest of days when I feel like crawling under my rock. When I see you staring at him, I tell Gavin to wave, as acknowledgement. I know it isn't everyday you run across a blind baby. I understand the curiosity, and welcome it. All of you who personally know me, know this.

Just please don't blatantly disrespect my words, as I truly am trying to help you understand. It is unpleasant to be disrespected, and even though he is only 11 months -- he hears you and understands you.

This has been a service announcement from the Stevens Family. ;)

Thursday, September 10, 2009

Trading expectations for acceptance

People often say time will change things. I, however, understand you need to change those things yourself. Today, for some reason, I was very nostalgic. I think because we have some kind of confirmation about Gavin, and we are out of this holding stage we have been stuck in for so long. I started sorting through some emotions of the past 11 months, and have realized how much progress I have done. I am going to share with you, my moment, where I think was my absolute saddest, lowest and challenging moment. It was a brief few minutes, but from that moment on, I continued to make baby steps and have come now to a place, where I believe Gavin will be ok and they are not just words that leave my lips to get me through the moment.

This occured when Gavin was 3 months old. We were told to wait until the 4 month mark by his pediatrician before we pursued a specialist. I was playing with Gavin, and I was at home by myself, just him and I. Everyday leading up to this point, every moment I got a chance, I was testing his vision. It was a nightmare. I would wave my fingers in front of his face, test one eye then the other. I was driving myself crazy. I would go back and forth with my feelings. At one moment, I would tell myself I'm overanalyzing and need to listen to his pediatrician. The next, I would be in tears. This one moment in particular, I completely broke down. I had just put him down for a nap when we finished playing. I sat on the couch and began to sob. I then began saying outloud

"Please don't let my baby be blind"
"Please don't let my baby be blind"
"Please don't let my baby be blind"
"Please don't let my baby be blind"

I said this for about a whole 5 minutes continously and with each sentence, I got louder and louder. With each sentence, more sadness was coming over me. Before I realized, I was practically screaming at the top of my lungs and I was on my knees. I was uncontrollable. I was yelling. I was a mess and it was my lowest point. I picked myself up off the floor (actually I crawled to the bathroom), washed my face, and called his pediatrician and told him I HAD to see him.

Little did I know then, that my baby would be blind.

I realized as I was going through my screaming, in the back of my mind, I was hoping God would hear me. It was my way to shout out, that I am not ok with my son being blind. I was no ok with these cards he had dealt me. I was NOT ok with going through my stressful pregnancy, knowing I could lose him at any moment, coming home with, what seemed like a perfect little baby. And, now, you want me to be ok with my son being blind?

I was not OK with it, and that was my way of shouting it to the world. I wanted everyone to hear it, and I felt at the moment, I couldn't stop until someone did.

I am putting myself back in that moment, and I have tears streaming down my face. This is difficult to put myself back in that moment, and I look back realizing how broken I was. I needed to go through that transition point. That was the start of my acceptance, without realizing it. I was defying God and what he gave me. It was an absolute breakdown of my spirit, my soul, and my emotions.

I carry that moment with me. I relive it from time to time, at moments when it just hits you. Out of the blue, I see something, something I know he can't see or touch, like the sky or the sun, and I relive a brief moment of my breakdown. I expose myself to that pain for just a short time, because it's something I don't think will ever leave. It is embedded as part of who I am, and it's a moment that my soul needed to experience before I could truly, really accept Gavin's condition. Not Gavin, but the blindness.

From that point forward, I began to trade expectation for acceptance and as a family we have not looked back. We have had our fair share of bumps in the road, but nothing to make us stop and turn around.

Today, I am ok.
I am ok with our obstacles. I am ok with these cards.

I am ok with my son being blind.

I traded expectation for acceptance and, to not sound corny, it truly has made a world of difference. God did hear me. But, the difference is, I began to hear him.

Thursday, September 3, 2009

ERG - complete!

Gavin's ERG was a success. He did great. We started the day with a few bumps, Gavin had a little cold and we were unsure if we were going to be able to proceed with the procedure. He passed his physical, and the nurse cleared him, but the anesthesiologist has the final say. Talk about shaken nerves. The nurse came by and said she wanted to prepare us, but typically a cold is a deal breaker as far as anesthesia. Lovely!

We were paid a visit by the anesthesiologist and she ordered a nebulizer, breathing treatment for Gavin and then she was going to see how he was doing. Mind you, he was already sedated with a liquid sedation, and his eyes were dilated, and we were STILL unsure if we would proceed. UGH! After about 4 hours from the time we stepped foot in the hospital, Gavin got the green light, we kissed him and off he went. My heart feels for all the parents who have to send their child into surgery. His procedure wasn't even evasive, it was very minor, but still major since they had to put him under -- but, that is the worst feeling. A last kiss as he lays in the bed, and gets wheeled off by the team of nurses. My heart sank.

The ERG confirmed everything we had expected. Dr. Lee called us in for a consultation as soon as everything was complete and brought in all the equipment so we could actually see the pictures of his eyes. Fascinating! Both of his eyes are pretty much mirrored copies of one another (a clear sign of a hereditary condition). Dr. Lee has the only machine in the country that will show detailed pictures of over 100 layers of his eye. We were able to view everything, as well as the atrophied areas that are causing his condition. There is a representation of cone/rod abnormalities in the RPE layer of his eye. All of what he saw pointed in the direction of Leber's Congenital Amaurosis. Only blood work detecting the gene will 100% confirm, but basically he did confirm that he has LCA.

The next topic was onto what Gavin can see. The ERG readout on someone who is sighted will have big spikes in activity like an EKG basically. The spikes are the brains reaction to the light. Gavin's ERG was pretty much flat. We were prepared to hear this. I expected it. It is still a daggar to the heart when his doctor is confirming everything. I could tell it was difficult for him to give us this information. I semi-interrupted and told Dr. Lee, we were expecting this news. He put his head down, and nodded and looked at the readout and showed us. There was hardly any activity. I looked at it and looked away and cried. Not that I was surprised, but to get it confirmed, is another layer of sadness in a way? It's hard for me to put it in words. It is fair to say, Gavin is blind. He can detect light, but no visual acuity.

He ended our consultation with a glimmer of some big hope. As I have stated before, science is on the move with finding treatment for blindness. There is not hope that one day there will be research. Research is happening right now, all over the world, and he confirmed with what I have researched, that LCA is a huge area of study. Gavin may be a candidate for a study in the upcoming years, which is wonderful to know.

There is hope for Gavin, and many others who are in the same boat. It's an exciting time in the area of research, and we can't wait to see where it will take us. Thank you for your kind words and messages of hope, from people I don't even know. It helps me to move forward and march on to raise awareness!

Waiting for the physical

"Not liking these funky hospital jammies, mom."

Fighting the breathing treatment, even though sedated. I have a little spitfire on my hands!