No one expects for their child to have a deletion in his genetic makeup,especially a deletion that doctors don't know much about. This is why we have started "Landon's Love," a developing organization/business to raise money for genetic research in order to help doctors better understand chromosome deletions such as Landon’s, comfort parents as they embrace this journey with their child, and ensure that people with genetic differences have the brightest future possible. Our son might be missing part of a chromosome, but he has captured the hearts of all who have met him. There is nothing better than Landon's love!

30 June 2012

license plate

i have ALWAYS had vanity plates on my car until a year or so ago when i became too cheap to keep up with it.

i've got the itch again and this time around i want to honor my boy.

although landon is FAR MORE than the chromosomes he does possess and certainly isn't defined by the one he doesn't, but i want to honor his awesomeness despite his deletion and bring awareness to his deletion.  i want the opportunity to explain his condition when someone sees my license plate and asks me what it means.

SO............

i need your help.

what are your ideas for a license plate that incorporates landon's deletion (-4p), but might have a clever twist. 

don't forget VA license plates allow 7 characters on the plates.

thanks in advance for your thoughts.  you can post your suggestions by leaving a comment on this blog.

14 June 2012

Marfan Syndrome

Not an official diagnosis, but our newest ponder after L's 7 year checkup is that he has many characteristics of folks with Marfan Syndrome.  I scored an appointment with genetics in July to hopefully get some questions answered.  At this point, little surprises me, but I still gets freaked out by the L's medical mysteries.  Only time will tell and no matter what, he's my bud!

Marfan Syndrome Information

27 May 2012

an awesome bday!

Lando didn't make it to school all week and Friday he still had a fever on and off, so we felt obligated to reschedule his par-tay for a later date.

without even leaving the house, i think he had an amazing birthday despite a rough start (getting stung by a wasp).

he got to play video games outside in the tiki hut, rescued a snake, a frog, and a toad from the pool, broke in his new bounce house/slide, roasted hot dogs and marshmallows, and watched his new wrestling videos!



there is nothing like seeing the smile on that boy's face!

i hope that he finds joy all throughout his life and that it is filled with everlasting joy and comfort.

he has faced more in his 7 years than i feel like i have in my 31.  i never thought i would look up to someones so significantly younger than me!

happy birthday, angel.  you are amazing!

7 years old, huh?!


it's his big day!  our mr mr is 7 today!  i haven't been up past 11pm in weeks, but i made it to see 1:29am last night and was happy to wake up this morning and move around a lot better than 7 yrs ago!

i hope that my actions and words express to him on a daily basis how much he means to me and how much he has taught me, but those emotions are so deep that i can often not articulate them in such a way that describes their intensity.

Dear Landon,

You have certainly turned out to be everything for which I could not prepare.  You teach me everyday that life is precious and no matter how difficult it might be, we can make it through and most triumphantly by doing it together.  I love your Landonisms, your empathy, and your charm.  You have taught me that by slowing down we can observe things, master things, and appreciate things.  Your determination and will is impressive.  You have developed the most unique and precious personality and unfortunately, have inherited your mother's lack of motivation when it comes to cleaning up after yourself :-)  Words could never accurately express how very much you touch my heart, my love.  You mean the world to me my sweet boy!  Whatever comes our way, we conquer it together!

29 April 2012

lost and low

I wish I had a very upbeat post, but the reality is, sometimes, I am just sad.  Not sad because of who L is, but sad because I feel like I want to 'fix' the situation.  and then i feel guilty because i know he's perfect just the way he is.  i guess i feel like i don't always know how to put into words how i feel even...fearful that i will sound ungrateful.  i guess i ultimately just want life to be fulfilling for L--always. 

it's been hard this spring hearing of everyone's kids (and i do mean EVERYONE) playing soccer and doing this and that.  i remember when landon was born i always wanted him to play soccer...somehow i always thought of that as a run sport.  it's hard to think that he might not every do it--and i guess, who cares, it's not like it really matters, but i guess it does or else i wouldn't think about it.

AGAIN--i don't want to sound ungrateful because i LOVE him.  i LOVE him for who he is and who he isn't.  he can certainly give you a run for your money on any video game, that's for sure!

i guess everything might all be hitting me because I feel bombarded with reminders of our circumstances lately.

We just recently committed to having him be a part of the elementary Functional Skills program at his elementary school.  I'm excited as I know it's what's best for him, but i also wish it could be different.  i wish he could 'hang' (so to speak) with his age-appropriate peers.  Academically, I know it's best and that is what matters.  He is a smart kiddo and this will only foster his growth.

We also just had track and field day at the school where I teach on Friday and everything from walking over to the high school where it is held (the noise and confusion and the noise and the lack of structure) to the activities just made me think of him.  I wondered all day what he would be doing if he were there.  Would he participate in any activities on his own?  Would he be willing to do something if someone encouraged him to do so.  Would he be so intimidated and overwhelmed that he would have a difficult time? 

His 7th (yes, 7th) bday is coming up and we're looking into adaptive tricycles.  a part of me wants nothing more than to get him one, but i really wish i could just go to Walmart and buy him a bike just like any other family.

okay--i'm rambling.  i could go on forever, but i feel like i'm talking in circles and making no sense.

for those of you who read this and don't know me, i certainly hope you don't think i'm the worst mom ever....just having one of those days, i guess.