A baseball reunion

 

One of my favorite things to witness, as a mom/wife, is watching your husband coach your little boy in baseball.  This is Landon’s 3rd baseball year, and the delight that Troy gets coaching his son’s team, makes me proud. 

Shhh… I’m actually more excited that our team are the Yankees.

Yes, it gets very hectic during baseball season.  Practice 2-3 times a week, and games every Monday and Saturday, do make for some even crazier weeks.  Add to the mix, that I’m the team mom, and there are a few things that I need to make meetings for, etc.

All in all, being at the baseball field, has been one of my favorite moments as a mom!  So much happiness, and the kids give it their all, it’s definitely our happy place.

One of the hard things though, is little Gavin.  Gavin and his dad are BFF’s.  I don’t exist when Troy is in the room (sometimes the break is nice – LOL).  Anyhow, Gavin is with me all day, and when he hears that garage door open, he is so excited.  He knows daddy is home! 

The thing with the schedule is, usually Troy rushes home from work, for about 5 minutes to quickly change into his baseball clothes, pick up the equipment, and he’s out the door.  This happens 4-5 times a week with practice/games/meetings.  Gavin is at an age, where he doesn’t understand.  His excitement when he hears Troy come home, quickly changes when he knows his dad is gone for a few hours. 

Games are just the same.  He hears Troy on the baseball field, but yet, he doesn’t understand why his dad is not coming over to rescue get him!  I can distract him for so long with his music, food, and his stroller, that he loves to knock over.  Thank goodness there are always grandma’s there to save me from the Hulk help me.  Gavin’s little two year old fits are a sight to be seen!  They can come in full force at the baseball game, and I completely understand why.  He can’t see that his daddy is on the field, and involved in the game.  He just hears him, and doesn’t understand that daddy can’t come play.

Why doesn’t daddy want me?  I hear him?

This particular game, Troy went straight to the field after a meeting at work.  He was late, and didn’t see the boys at all, before the game.  Gavin was ecstatic to finally hear daddy, and saddened at the same time. 

So I walked Gavin over to the fence, and they held hands during the duration of the game.  The BFF’s were finally reunited, after not being in each other’s company the whole 12 hours of the day. 

Gavin ultimately wanted to rip down the fence, it was a long couple of innings, but he finally ended up getting his daddy.  And all was right in the world.

25% chance

I'm not feeling like a long post is coming, but rather a question.  A question if you are a parent with LCA, or not.  Leber's Congenital Amaurosis (LCA), is an autosomal recessive disease.  Which means, both mom and dad must be carriers of the gene that causes LCA.

Since Gavin has LCA, Troy and I both carry the defective gene.  We carry the defective gene, but we are not affected by gene.  Our children are, or rather that chance that our children will be affected, exists.

This means, it is hereditary, and each of our children that we have has a chance of being born with LCA. 

A 25% chance. 

I have heard many different opinions about those who have this information, and opting to or opting not to, have another child.

If you had a child that was born with a hereditary, genetic condition, and you had the facts that 25% of every pregnancy would result in that genetic condition being dominant, would you have another child?

Why or why not? 

I know this answer will definitely vary, given the condition, but some have very hard stances one way or not.  Explain your answer in the comments, I would love to get some more opinions on this.  It's not talked aobut too often, and there is no right answer - just opinions. 

Disclaimer PS - I'm doing some writing, and your personal opinions will remain nameless.  It's for my personal piece of a project I am doing.

Gavin's eye pressing - another update

So, as you may know, we are on a new adventure with Gavin's eye pressing.  Read this post, from a few days ago, for more information.  In the past week, I have tried some new tactics.  I wanted to share, because I know so many other parents struggle with this.

And what a struggle it is.

The way I reprimand Gavin, and the way I reprimand Landon (our 7 year old), are totally different.  Obviously, because of their age, but I mean in the sense of how we handle a situation, when they are in trouble. It sure is a ride raising one sighted child, and one completely blind child!  If Landon is misbehaving, all he needs to see is my face (or his dads) from across the room, and he straightens up.  With Gavin, as he is getting older, I am finding myself having to be much more vocal.  I even need to get louder, to emphasize my voice in a manner that he knows I am not messing around.  This is so new to me!  He can't see my facial expressions, so he goes based off of our voice. 

I have to be very conscious and aware of the way I say things. This is a learning curve, like I mentioned. 

Back to the eye pressing.  If I tell Gavin "hands down", like I have a bajillion times in the past, he presses his eyes harder now (for the most part).  That is his way of being defiant (and a typical 2 year old).  He does this, and laughs at the same time.  He laughs!  He knows how to get under my skin!  I try so hard not to laugh myself, while I am thinking "What a stinker!"

Obviously, this is telling me we need a new way to handle this.  I have also tried tapping his little arm, and say "hands down monkey."  Almost like a prompt.  Yeah, that does nothing.  Again, he thinks it's a game, or he enjoys frustrating his mother, and he presses harder, and smiles/laughs.

Stinker!

So, I have moved onto raising my voice with him, and getting close to his face, so he knows I mean business.  This has worked!  It kills me, because I am not a yeller, and I am not yelling, but I feel like I am, because it is not me.  I don't raise my voice, all that often.  Sometimes to be heard in my house full of boys, I need to get louder, but I'm not necessarily a loud person. 

Let's see how long this new tactic will last, until he catches on, and starts yelling (or laughing) back at me.  I'm hoping this will just break the habit, for now.  Yes, I understand the need will still be there, but breaking the habit (like we did when he would rip off the glasses), is what my goal is right now.

If you have found another tactic working for you, please email me.  I would love any information I can gather, from all those seasoned parents out there who have dealt with this!

I will keep you posted on our progress, and how the crazy screaming lady is coming along with her new approach.  Kidding, of course.  Kind of.

Nap time, bed time is the best.  I know his little eye sockets are getting some much needed rest.  The pacifier continues to still help him as well.  He is soothed much quicker, and does much less of the eye pressing when going to sleep.

Gavin's Groupies BLOG

Here is Gavin's Groupies BLOG.  Please bookmark if you would like to keep up to date with the Foundation side of our lives!  This blog (All Children... Should be able to See a Sunset), will remain more personal.

I will try to keep the Gavin's Groupies blog up to date as much as possible.  I personally run the day to day operations of the non-profit, and I do all my blogging, after family and work.  So, please be patient!  You may hear of an event, but not have all the info up about it.  We do about 2 events/fundraisers a month, thanks to the help of our awesome board!  Some months, every weekend.

Hope you pop in every once in a while!

Thank you! 

An update on Gavin's eye pressing

I'm so glad we have had about a year of not much eye pressing (there were phases of a month or so, where it was bad, until we broke it).  His glasses (non-prescription) have really helped.  He would go to eye press, and feel the glasses and put his little fists down.  It was a great deterrent.  Of course, the eye pressing would happen as soon as the glasses came off (for bath time, or bed time).  He had been doing extremely well at leaving his glasses alone, and not taking them off.

At two and a half years of age, things have completely changed. 

About 3 weeks ago, I saw him playing the piano only with one hand.  Where was the other?  UNDER his glasses pressing his right eye.  I knew that was it.  Once he made the connection that he could slide his fingers under his glasses, I knew a new habit had started.

Sure enough, this is now a constant struggle, that occurs 100% of his waking hours.

There are some things that really just frustrate me with Gavin's blindness.  One being, watching my little guy walking with his 'bumpers out' (hands out), and run into a corner of a door or a wall, directly into his face or head.  The other is the eye pressing. 

Oh the eye pressing.

Eye pressing takes the trophy, hands down, as the most difficult.  I don't want to sound frustrated, but we are.  Of course, the objective would be to keep his hands occupied, and busy.  Of course they are, but it takes one split second, or a pause in playing, or one hand, to just slip under the glasses.  I can set him up with a toy, or one of his piano keyboards, turn around to walk to another room.  All it takes is for me to be without hands distance with him.  It's troubling to turn around, and see 3-4 of his little fingers, about one inch deep into his eye socket.  In a split seconds time!

We have tried everything.  The car rides are awful, especially sitting for 45 minutes in the car line to get Landon from school every day.  Toys help, but not with both hands.  The Snuggle Wraps we had used previously, did work.  I couldn't do that to him now.  They are so constricting, and he cannot stand them.  Yes, they serve a purpose, but I think we are past the stage when they worked really well for Gavin.

You can really tell he has been pressing, even with my constant guidance.  It's something you cannot escape.  My house is a mess, I'm behind work, as my time is devoted to keeping Gavin's fingers out of his eye sockets, trying to break him from this habit.  I know he will always have an urge, I get that... but trying to break him the habit right now, is my number one priority.  Sorry this is a frustrating felt blog post, but it is what it is, and comes with the territory of having a child with LCA, with no vision.

My biggest concern with the eye pressing, is the damage it can cause to the bone structure in the face, and of course the damage to the cornea/lens of his eye.  He is more precise now with the pressing, since it is not just his fists, as he did before.  He is actually inserting fingers now into his eye.

I was feeding him soup for lunch today, turned to get another spoonful, and turned to feed him, and the above picture is what I saw.  This is us, all day long.  I feel for all the parents who deal with this.  I'm hoping for a break soon, and hoping we find something that helps Gavin.

* If you are interested in why Gavin may eye-poke/eye-press, please click on the link to the right of the blog that ready "Why does Gavin wear glasses if he is blind?"  I go into pretty fair detail about it.

Thanks for hearing my rant. :)

New blog!

This blog will be moved to WordPress (FINALLY).  Phew!  I have been wanting to switch to WordPress for quite some time, and to it's own domain.  I'm finally in the process of it.  Hold tight, the finished touches won't be for a few weeks, but once it is up, I will no longer have a blogspot account.

Many of you may know, we have Gavin's Foundation that we started about 10 months ago.  I have kept to my promise that I do no inundate posts on here with foundation info.  We have our website, we have our Facebook, and our Twitter and Flickr accounts all with the foundation info.  I wanted to keep Gavin's blog, Gavin's blog, more personal, and dedicated to his development, trials and triumphs, and to be resourceful.  I do pop in every once in a while, when we have a big event coming up... but I did not want to turn this blog into a Foundation blog.  Not that it's not important, but it's really second to everything.

I also want to thank those who have put me in the "mommy blog lists".  I get frequent emails from people who have found the blog through those, and I am thankful.  I, however, do not consider this a typical "mommy blog".  I choose to not blog about "mommy" activities, or day to day events.  We also have another older son, who is 7.  I didn't start the blog to be a "mommy blog" and update our daily events. Absolutely nothing wrong with that, I just choose not to.  I'm sorry if I have disappointed those who have come here to read about that.  If that were the case, only every other post would be devoted to Gavin, to keep fair to our oldest, wonderful son!  Landon is not talked about much on here, but because I didn't start the blog to blog about both my children or my family in general.  It was a way to have an outlet with Gavin's diagnosis, and has taken a life on it's own, since.

I appreciate all my loyal readers, and even when this gets moved to its own domain, it will be kept more informational, and just about Gavin.  It will also be my opinions on certain things, and our emotions regarding the day to day challenges.

We have also decided (I actually started this about a month ago, but with allthefreetimeIhave I haven't made it live, yet), to do another blog just for our Gavin's Groupies and our events.  This blog will be an extension of our Foundation website, for those who are interested in reading.  I think this is great, because you will not get overwhelmed with all the postings of our events (we have about 2 a month), and all the Foundation talk!

Not that it is not important, but I know there are many here who come for support, and who are not interested in fundraising.  I completely understand!  I don't want the foundation/fundraising info to be shoved down your throat, so to speak.  We have A LOT going on with the foundation, it would not be fair to share it ALL here - when you may be here just to get resources. Now you will have an option to read about our upcoming, past, and ongoing projects, events, fundraising, and all the incredible things that go into running a non-profit (including the headaches).  snicker

I will never give up the fight for my son, so he may one day have an option!  I will first, however be number one as a mom to both my boys, an advocate for them, and the foundation falls into line where it may in our lives!  Today, it is my full-time job, outside of my full- time job <mommy> (neither of which I get a paycheck, but it's the most rewarding job I could ever imagine).

Thank you all for being here, and showing interest in reading about our son, Gavin, and our journey.  There are so many different layers of being a parent to a child who is blind.  I love reading your comments and emails!  You inspire me, and I'm glad you are with us, as we take on this journey, that we are now so blessed to be on.

By the way, how can you not be inspired by this hair?  LOL

The million dollar smile, however, is another story. :)

What a show off!

Count the garden by the flowers, never by the leaves that fall. Count your life with smiles and not the tears that roll. ~Author Unknown



Celebrate life

This past weekend, we spent in Las Vegas.  My cousin got married, and I was honored to be a bridesmaid.  It was a fun weekend with family, many I have not seen in a while.  It's always so nice to reconnect, hug, and have an understanding that we are all so close, regardless of the distance between us.

I had a realization, as I was standing shoulder to shoulder with the other bridesmaids, waiting for the beautiful bride to walk down the aisle.  I looked into the crowd, and saw my aunt, who lost her husband (my uncle), and my grandma #2 (my grandpa's wife) who lost my grandpa, both within one month of each other. It hit me, as we sit here as a family, celebrating life, and love - there is an emptiness that will always invade our hearts, regardless of the occasion.

It was truly bittersweet. 

I have mentioned before that the past two years, have been a turning point for me, in the way I perceive life.  Gavin has played a role in that, and the grief in my heart for those I love and miss, play a role in that.

Thanks to some things that have happened, I have so much peace now!  It's taking me some time to get to this place.  I thought I knew the "big picture", but now I feel I understand it.  People utilize so much of our precious time that we are given to live our life as a human being, on such irrational, and insignificant things.  I know we all have our own path, but things are so much clearer to me.

To call life a series of processes, is an understatement.

My life is at peace, even though I have sadness in my heart.  I am learning to be able to compartmentalize those feelings, and that is thanks to so many things.  My relationship with family members have become stronger, and some relationships, I choose not to be as close to anymore.  Albeit, family, friends, acquaintances.  I put energy into positive people and those who I have learned to trust with all my heart.  I often wonder how people can carry on their life with judgement, and criticism, and I wonder how happy they really are?  Thatsanotherstory.

Those moments, like the sadness I had for my aunt, and my grandma #2, is a moment that is life.  It is what we are now.  I have learned to appreciate it, as it is a recognition of those who are no longer with us.  I have learned to appreciate those who are living, just as much, as well.  Working on myself, so that I am a better person to those who I love and cherish with my whole heart, is a life long process, that I am so thankful to do, because I am here.

Fighting the tears as my heart broke for my uncle and my grandpa who were not there to watch my cousin walk down the aisle, was difficult.  Realizing they will always be here with us, and they are a piece of us, carrying on their legacy; was easy.

When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, "I used everything you gave me." ~Erma Bombeck