Thank You...

Today is the last day to vote in the Parents Magazine Blog Competition...up until midnight tonight... and I have to say, I'm relieved.  I am tired.  I am grateful.  I am glad that it is over.  And I am proud that I accomplished what I set out to do - bring as many eyes and smart minds and tender hearts here to try to help Gavin.

My writing has always been about Gavin.  To be honest, I often feel that my life's purpose has always been about Gavin.  I was sent here - and he was sent to me - so we could heal each other.  And we will. And maybe in the process we will help heal others, too.  

There's something about this little boy with the sweet smile and the fierce determination that has captured more than just his family's hearts.  I feel honored to share Gavin with the world.  And I truly mean the world.  Here are some of the countries you all visit us from...

Having all of you here means more than just a rising visit counter and collecting flags.  It means I learn from other parents who have travelled this road... I learn from medical professionals with advice to share... and, most importantly, I am reminded that I'm not alone.  Having a special needs child can be quite isolating.  You all have been the greatest company - whether you've been here over the last five years or just the last five days.  

The added exposure here has gifted me with new friends, wonderful suggestions, interesting referrals and a list of different syndromes and disorders to present to Gavin's medical team.  One of the referrals was to a medical intuitive, Anthony Williams.  I just finished an hour consultation with him and it was fascinating.  (Please read THIS UPDATE before you consider contacting Anthony Williams!!! A LOT has changed since I wrote this post) He is sure that I have high levels of mercury in my body - and that I am highly sensitive to mercury, which is causing my medical issues.  He also said that the majority of my miscarriages (I've lost 9 babies to date to miscarriage) were due to mercury toxicity. (Darcy's death - my 10th loss - was a true cord accident) This makes sense to me.  In my twenties I was very sick and no one knew what was wrong with me.  I was so weak that at one point I had a short stint in a wheelchair.  Luckily, we have a family dentist who has a holistic approach and he insisted that my mercury fillings needed to come out.  Out they came - and sure enough I quickly got better.  Anthony Williams thinks that Gavin has the same sensitivity as I do - and suffered from mercury poisoning in utero.  He told me that it can cause birth defects and neurological issues and it's not something that would show up in chromosome testing and we never thought to test it through blood work before.  There are supplements I can start adding to Gavin's diet (and mine) to start pulling the mercury out of his system - and won't harm him in any way in the process.  He sees Gavin making tremendous progress... walking and talking and eating... and living a long life.  The way I see it, working on removing mercury from our systems is something we can easily do while we continue our conventional quest as well.  It can't hurt!  I will be calling Dr. Kang, our wonderful acupuncturist, tomorrow.  I bet she'll be able to muscle test Gavin and me for mercury - and maybe she can help us with balancing our bodies and removing it at the same time!

I am so grateful for all the love and support that has come my way because of (and before) this competition.  And I'm grateful to those who voted - some every single day!  I know how busy life is so thinking of you taking the time to click into a site and vote for this blog - it's humbling.  Thank you.

And I want to thank the editors of Parents Magazine.  Thank you for choosing me... the girl who uses "..." and exclamation points entirely too much.  The girl who pours out her soul and overshares on a regular basis.  The girl who used your competition to expose her son's medical mystery to the world without having him sign a HIPPA form.  The girl who tweeted Snooki to "Vote for Chasing Rainbows."  (I'm sad to report she never tweeted me back.)

I am grateful for the validation that you gave me along with the nomination.  Validation that I should keep on doing what I'm doing.  That I should keep on working hard to help my children be the best that they can be using any means possible.  Readers may reach for tissues when they come to this site... 

...but you should all know that the Leong family is reaching for the stars.

 

Calling All Genetic Junkies!...

I am overwhelmed with gratitude at the outpouring of love after yesterday's post, Platform. People have shared it and then those people have shared it and then those people have shared it...and on and on, creating one big circle of love around our family.  I wish all of you could see the comments on my Facebook page, on others Facebook pages, in my email, on Twitter... it would restore your faith in humanity.  I received advice, suggestions, referrals, ideas, thoughts... and just plain love and support... from all over the world.

Gavin's genetic journey has been a long and winding road.  When he was an infant, I spent a few months living in the hospital by his bed.  He was very sick with RSV and Botulism and was either lying lifeless in bed or screaming in pain.  It was then that I started googling and researching diseases, syndromes and disorders and bringing them to his Geneticists attention.  One of the first things I brought up was Mitochondrial Disease.  It has been brought up a few times since, and over and over I've been told it doesn't fit Gavin.  It's ironic that many, many people suggested Mitochondrial Disease after yesterday's post.  Even perfect strangers who came to my blog for the very first time.  

Today I set up a phone meeting with the genetic counselor at the hospital.  We spoke for an hour and went through everything that Gavin's been tested for, which is listed below.  I will also create a permanent tab at the top of the blog to have this information (and any new additions along the way) always handy.

When we got to the testing we did that supposedly "ruled out" Mito, there was a pause.  Apparently, there was part of the test that could have been seen as a red flag.  I have decided to make an appointment at a different hospital with a Mitochondrial Disease expert.  Hopefully they'll be able to fit us in soon so we can receive some guidance.  Gavin has never had a muscle biopsy, mostly because he is very challenging to sedate.  The last time he underwent sedation was for ear tube placement and adenoid removal and he ended up on BiPap in the PICU for six days.  So if we can rule anything out with blood or urine, we do.  And that's what happened with the Mito - we thought if certain things were elevated in blood or urine, they would lead us to pursue it further.  And we were led to believe it wasn't worth pursuing at the time.

Most recently, Gavin had Exome Sequencing through Baylor University.  It came back saying that he could possibly have Congenital Merosin Deficient Muscular Dystrophy, but that was ruled out by Carsten Bonnemann from the NIH.  He did not have Whole Exome Sequencing done.  I was told that it is not typically used in the clinical setting.  That the results are usually very detailed and overwhelming and hard to decipher.

The information below is overwhelming.  Unfortunately, I've become quite the "genetic junkie" myself over the years.  It's not rare for Gavin's geneticist to open an email from me that I sent at 2am after being up researching a possible syndrome. Thank you in advance for taking a look at this and passing it on to anyone you think might have some ideas or input.  And don't forget, you can continue to vote in the Parents Magazine Blog Competition once a day until Sunday at midnight!  

This is a list of the syndromes, diseases and disorders that I researched and presented as possibilities to Gavin's geneticist.  They were either ruled out through testing or I was told none of them were possibilities.

Pitt Hopkins Syndrome

Congenital Lyme

FG Syndrome

Partial Trisomy

Wolf-Hirschhorn

Cardio-Facio-Cutaneous Syndrome

SeSame Syndrome

Russell-Silver Syndrome

Congenital Hypomyelination Neuropathy

Multiple Sclerosis

Cystic Fibrosis

Mitochondrial Disease (I've been asking about this since he was 5 months old)

Pendred Syndrome

Williams Syndrome

Below is the list that Gavin's geneticist generously typed up for me of all the testing he's had done:

According to notes from Birth Hospital: A karyotype was normal and DNA methylation to rule out Prader-Willi syndrome was negative.

2/15/2008: CJB2 (Connexin 26) heterozygous mutation c.109G>A; p.Val37Ile

2/21/2008: Signature Chip BAC Array: normal

1/28/2008 Plasma Total Lipids Very Long Chain Acids and Branched Chain Fatty Acids (screening for Peroxisomal disorders): normal

7/6/2011 Chromosome microarray through LabCorp (specifically a SNP array; results are from build 36):879 KB INTERSTITIAL DELETION OF 3P12.1->P12.1 INTERPRETATION: POSSIBLE FAMILIAL VARIANT

arr 3p12.1(85,927,122-86,806,315)x1"The whole genome chromosome SNP/CN microarray (CSM) copy
number analysis revealed an interstitial deletion of the
chromosomal segment listed below. This interval includes 1
OMIM annotated gene* (CADM2) and minimal known copy number
variant overlap.
At this time, no clinically established disorders have
been reported with imbalance in this region, although this
could change as studies progress."

Addendum: Inherited from parent 

8/29/2011: MED12 analysis (mutations in this gene are associated with FG syndrome): No mutations detected in exons 1-45 of the MED12 gene

10/11/2012: Creatine Kinase, Total, Serum 193 [normal is between: 24 - 204 U/L] 

10/22/12 Plasma Amino Acid analysis: slight elevations of leucine and valine. "Not suggestive of a specific aminoaciodopathy. Could be due to normal metabolism, patient diet, or treatment."

10/22/12 Urine Organic Acid Analysis: URINE ORGANIC ACID ANALYSIS OF THIS SPECIMEN REVEALED ELEVATIONS OF
GLUTARATE AND MEDIUM CHAIN DICARBOXYLIC ACIDS (ADIPATE, SUBERATE AND
SEBACATE).
THIS PROFILE MAY BE SECONDARY TO DIET (FOR EXAMPLE, FORMULA). HOWEVER, ELEVATIONS OF MEDIUM CHAIN DICARBOXYLATES CAN BE ASSOCIATED WITH FATTY ACID OXIDATION DISORDERS (FAOD) AND WITH DEFECTS OF THE MITOCHONDRIAL RESPIRATORY CHAIN. HOWEVER, NO OTHER ABNORMALITIES SUGGESTIVE OF A FAOD WERE DETECTED IN THIS SPECIMEN, MAKING A DIAGNOSIS OF A FAOD LESS LIKELY. PLEASE NOTE THIS SPECIMEN WAS DILUTE, THEREFORE ANALYSIS MAY FAIL TO DETECT CERTAIN DISORDERS WHICH ARE CHARACTERIZED BY MINIMAL METABOLITE EXCRETION.
IF CLINICALLY INDICATED, CONSIDER A REPEAT ANALYSIS OF URINE ORGANIC
ACIDS TO DETERMINE IF THESE ELEVATIONS PERSIST, AND CORRELATIONS
WITH LACTATE AND PYRUVATE LEVELS AND PLASMA ACYLCARNITINE ANALYSIS.

10/22/12: Plasma Lactic Acid 15.5 (Normal is between 4.5 - 19.8 mg/dL)

Whole Exome Sequencing did not detect a specific underlying diagnosis

This is a list of Gavin's features:

Gavin was a diamniotic/dichorionic twin gestation with one twin lost at 13 weeks

Cerebral ventriculomegaly (enlarged ventricles) noted during 2nd trimester

Born by C-Section at 37 weeks, breech, transverse lie, head was tightly wedged; circumvallate placenta with partial cord avulsion noted during delivery of placenta.

Apgars:  1 at 1 minute and 8 at 5 minutes

Born with blonde hair and blue eyes (with a Chinese father and a caucasian mother)

Eye color just recently changed to hazel/brown at 4 years old!

congenital ptosis

high arched palate 

sparse eyebrows

elongated philtrum 

epicanthal folds (but note that he is half chinese)

broad thumbs and toes

hypoplastic thumbs

tracheomalacia

he was born with sensorineural hearing loss in both ears (which has since been miraculously restored. seriously)

blonde hair (prompted prader willi which was negative)

high forehead

flat nasal bridge

simple ears with the left one minimally overfolded

extremely flexible joints

single palmar creases bilaterally

slightly hypoplastic distal flexion creases on 3rd and 4th fingers bilaterally, relatively tapered fingers

failure to thrive

esophageal reflux (severe) as an infant

mild, intermittent asthma

cerebral palsy

low tone

non verbal

flat feet

developmental delay

Whew!

If anything, I hope you leave here with a greater appreciation of how far Gavin has come despite all the obstacles thrown in his way.

Platform...

There's not much I wouldn't do for my children.  Gavin in particular who, let's face it, kind of got the short end of the stick in our family with all the things he has to deal with.  Over the years I've hunted down specialists... researched therapies and syndromes and supplements and more until the wee hours of the morning... we put a Hyperbaric Oxygen chamber in our living room... we've taken Gavin to shrines and Shaman healing ceremonies... I've brazenly hunted down doctors and specialists online and convinced them to help us... I truly could go on and on.  Many of the things we've done have helped tremendously.  But there is still one thing that continues to seem out of reach.

A diagnosis.

It's a very helpless feeling to not have a diagnosis.  In the short run, a "title" for Gavin's collection of features and behaviors and medical issues wouldn't change anything.  It wouldn't change how we treat him, feed him, love him, and work with him.  But a diagnosis could change everything in the long run. A diagnosis may tell us that Gavin's life span is significantly shorter.  It could tell us how to plan for his future in a more appropriate way - financially, medically and emotionally.  And it would be a huge factor in deciding long term care - if we were to pass away before him.  These types of issues are rather overwhelming if I let myself go there - which I don't very often.

Insert this "Parents Magazine Blog Competition."

Before this competition, the blog had a slowly growing group of followers that quickly feel like friends.   That's just how it is around here - a bunch of friends.  (Well, except for the occasional meanie or troll which, luckily, I don't encounter too often)  Since I was nominated by the editors of Parents Magazine (which still shocks me!), the amount of traffic I've received has been incredible.  And when one of the other women in my category, Glennon Melton from the wildly popular blog, Momastery, generously endorsed Chasing Rainbows... even encouraging her readers to vote for me... it practically crashed my site.  The traffic had me thinking of one thing...

A diagnosis.

What if - regardless of whether I "win" this competition or not - I was able to gain increased international exposure for Gavin.  What if I used this competition as a platform - and worked my butt off to get people to my blog - all with the hope of getting more eyes on my precious son?  And, while doing so, I could bring more people to the page with the list of all the other blogs - in turn, getting more exposure for them!

Each of us write for our own reasons.  Jo from "A Sweet Dose of Truth" writes about her family, including her son's autism.  And right now, she could use some help so if you're familiar with autism, please click her blog name above.  And Deanna from "Everything and Nothing From Essex" writes about her family, including her sweet daughter's Down Syndrome.  Dan from "Single Dad Laughing" has a deeply personal blog that touches on his life with his son, bullying, sexual orientation issues and more.  And Glennon from "Momastery" shares her life so openly and honestly that she changes the world, one person at a time.  I mean that quite literally.  Her blog is a life changer.  The platform we've all been given by Parents Magazine makes all of us winners.  And I've been happy to promote their blogs as I've promoted my own.

We all need each other.  And where else can we put our needs out there and get near instant feedback than the internet?  The increased traffic that I've received... and probably the other candidates have received... may lead each of us to something big.  Maybe it will lead to a professional contact... or a great idea for our children... or a writing gig... or maybe, just maybe, it could lead to...

A diagnosis.

Can you imagine if someone finds my blog somewhere in the world and recognizes the features and behaviors in Gavin?  Maybe their child - or one of their patients - looks and acts the same way and has had a similar history.  Sometimes those kinds of random connections can accomplish what the medical world has been unable to.  You just never, ever know.  

(You can find an entire post devoted to his genetic history here!)

I've never "promoted" my blog anywhere before.  It never really occurred to me!  But this competition suddenly gave me a reason to put myself out there.  Put Gavin out there.  Asking for votes for the competition felt better than saying "Can you come read my blog?"  Now it felt like asking for votes may lead to more exposure for Chasing Rainbows which, in turn, could lead to connections which, in turn, could someday lead to...

That diagnosis.

So, I've been begging on Facebook.  And I've been taking to Twitter.  I've tweeted celebrity after celebrity to bring them to the Parents Magazine Voting page.  Celebrities are generally wealthy and have access to the best of the best.  It is possible that one of their connections may lead ANY of the candidates in the competition to something important!  Or, when they retweet my tweet for votes, any of their followers could find my blog.  It's a long and winding road through people to find my one elusive thing.  A diagnosis for our son.

It's also been a little fun, I'm not going to lie.  I'm a big Bravo fan - and love the Real Housewives franchise.  I've had support from Kyle Richards (Paris Hilton's Aunt!), Yolanda Foster (David Foster's wife!), and Camille Grammar from Beverly Hills... Carole Radziwill (Jackie O's niece, Mom!!), Heather Thomson and Aviva Drescher from New York... Caroline Manzo, Jaqueline Laurita and Rosie Pierri from New Jersey... Lea Black from Miami... Tabatha Coffey from the show, "Tabatha Takes Over"... and I also got support from one of my favorite bloggers, CJane Kendrick.  (Love her)  Oh, and I got a random, shocking follow from Kevin Costner.  Not sure why - but cool, right? 

So win... or lose... it really doesn't matter.  I am beyond thrilled to be nominated, especially in the company of the other bloggers.  And if, years from now, it was the Parents Magazine Blog Competition that was the springboard we needed to get Gavin a diagnosis... I will be eternally grateful.  

There's really nothing I wouldn't do.  Including tweeting Snooki.  Oh yes, I did.

Share Your Heart...

As many of you probably know, I have a lot of love and loyalty towards CaringBridge.  CaringBridge is where my "blogging" began... in the corner of a hospital room next to Gavin's crib when he was two months old.  For the first few weeks, I used the site just to update friends and family to let them know how our very sick baby was doing.  But it turned into so much more.  CaringBridge allowed me to share my fears, my thoughts, my joy and sorrow...along with Gavin's health updates, his progress and the exciting day, months later, when he finally came home.

I thought that was where it would end!  But when I came home and we added nursing, feeding tubes, therapies, and multiple medical issues to our daily schedule - I realized just how important writing was to me.  It was my therapy.  It helped get everything out of me which, in turn, allowed me to be a happier, more positive Mommy to Gavin.  It also connected me with other parents who were going through similar challenges.  They even featured our family's story on their site.  (You can see that here)

I started on CaringBridge on January 24, 2008 and left there for this blog on May 31, 2011.  I am in touch with some of the CaringBridge folks periodically and am always more than grateful to support them in any way I can.

So, when they asked me to submit an entry in their "Share Your Heart" contest, I was thrilled!  Entrants  submit a photo or video and a short write up about a way they "share their heart" with loved ones.  In my entry, I explained how I  "Love Bomb" the boys.  You can read more about my Love Bombing days here.

Anyone is free to enter - and the entry with the most votes when the contest ends March 6th, 2013 wins TWO iPad minis!!

CaringBridge did not ask me to promote or share this on my blog.  If you notice, I very rarely (if ever) promote anything outside of our family.  I have a hard time saying no, so if I never do it at all - I never have to pick and choose who to say yes and no to.  Get what I mean?  But because CaringBridge has been such a big part of our lives, I am more than happy to share this contest here.

Click HERE to get to the voting page.  It will ask you to connect through Facebook.

There's one more thing...

If I am to win, I would like to "Share My Heart" with one of my readers by giving away one of the iPad minis here on my blog.  I don't know how I'll do it yet, but I want to come up with a contest of my own.  So, head on over and vote - the iPad mini could end up being YOURS!!

Oh, and this is also how I share my heart.  Nightly dance parties in the kitchen.  These boys have skillz...

While you're in the voting mood... don't forget to vote for Chasing Rainbows in the Parents Magazine Blog Contest! We're in the final stretch!!

Permission to Be...

This weekend, Ed and I gave each other our Valentine's Day presents.

Freedom.

I proposed that, in lieu of gifts, we let each other have a day all to ourselves.  No strings attached.  No guilt.  Dare I say - this was my best gift idea ever.

I tend to feel a lot of guilt when I do things for myself.  I don't think it has anything to do with the double whammy of being Irish...and raised Catholic.  I think it's just because I'm a Mom.  I could list a hundred things that I feel guilt about...but then I'd feel guilty for boring you to death.

I'm the type of person that needs "permission to be."  If I want to skip out for the day to go shopping... okay, that's not realistic.  If I want to skip out for the day to do anything BUT go shopping... I feel guilty the entire time for being away from the kids.  But if Ed says to me, "Why don't you go do something for yourself this Saturday?" it changes everything.  I can't explain it.  

Then...add on to that having a child with special needs.  I think special needs parents have a whole different level of guilt.  

Well, today - I am giving all of you a gift.  I am giving you permission to just be.  No guilt. Permission to take a break.  To ask for help.  To let your child have a break - a free day from all therapies and regimens.  To let your child skip school and go to a matinee.  To stop blaming yourself for your child's disability.  To spend the day in your pajamas.  I'm giving you permission to be...

I did a lot of nothing on my "Me Day" - long shower, errands and manicure.  To be honest, I felt like I was wasting my time - staying out because I was supposed to.  Ironically, my "Me Day" had ME missing the one's I was supposedly needing a break from!  I can't win.

Today we saw Ed off as he left for his day.  Hopefully he heard us yelling goodbye as he tore out of here!  Just kidding.  Kind of.

In the "funny how things turned out" department - today ended up being a better "Me Day" than yesterday!

(Brian wanted to take a picture of me taking a picture of him)

Gavin and I enjoyed several puppet shows - very long ones.  The best parts were Gavin's attention span...

...and Brian's vivid imagination!  

He has been cracking me up with his stories and jokes lately.  Our favorite joke with each other?  "Knock Knock"  Who's there?  "Pooch and Jimmy!"  Pooch and Jimmy who?  "Pooch your arms around me and Jimmy a kiss!!!"  (I know, I know - I'll keep my day job.)

We also had fun finger painting!

Well, Brian did anyway.

Gavin was not impressed.

It's been a great day doing a lot of nothing.  I even stayed in my pajamas all day!  

I highly recommend "Me Days" - whether you ask for permission or not.  But, for the record, "Us Days" are pretty awesome, too.

(Thank you for continuing to vote every day until February 24th! It means the world to us!)

My Funny Valentines...

First things first.  I owe America... maybe the world... a sincere and heartfelt apology.

I am not a Pinterest Mom.

Why an apology?  Because I can see what people search for on Google to land up on my blog.  Sometimes it's "Chasing Rainbows"... other times it's "Kate Leong" or some version of that name... "Cerebral Palsy"... "adorable children" (okay - I made that one up) and many other search terms that are quite curious.

But I get a TON of traffic from crafty Moms who search for the Chore Chart I made last year and even more traffic for last year's Valentines.  I gulp whenever I see them land here... because what they will find is not at all what they're searching for.  That chore chart?  We used it for maybe two weeks before it found it's home in the basement with all the other rejects from our playroom.  And the Valentines?  I felt so bad after making them last year.  Because that was just it - I made them.  The boys had very little to do with the Valentines for their friends.

So this year, the boys were very involved in the Valentines for their friends and family.

Brian took this very seriously.  The other day, the two of us sat down and he wrote his name and decorated the ten cards for his classmates, teachers, Daddy and Miss Sara.

He's getting really good at writing his name independently, so it was great practice!!

Then he dictated to me exactly what he wanted to say to each of his friends.  Like his friend, Josh. He likes holding hands and playing in the gym with him.

Some cards got a little... deep, shall we say.  But hey - the kid has a big capacity for love, what can I say?  I wasn't going to edit him - every card had a personal note from his heart.  You

won't find that on Pinterest.  It's too... simple.  And simple is what I do best.

I scrolled them up, put them in a dollar store bag with a Valentines pencil for each of his friends and VOILA!

Don't get me wrong, I love looking at Pinterest.  But I don't like to feel pressure to always have perfect crafts or perfect cupcakes or perfect birthdays... it's just not me.  

Getting Gavin to participate is not as easy.  He's not a fan of most things that seem like therapy.  So the hand over hand I'd have to do to write his cards or even help him draw on them is not fun for him.  So we went shopping!  Lucky for me, I have a spy in Gavin's classroom.  Miss Sara told me what Gavin's four other friends' favorite things were and we bought gifts accordingly for each of them.  One little girl got bubbles... a little boy got a truck... we  made it personal for each of them!

Tonight, my Valentine and I will be going out to dinner at the Capital Grille - courtesy of Miss Sara.  She gave us a Christmas gift for free babysitting and a gift card to this restaurant!

Thank you to all of you who continue to vote for me in the Parents Magazine Blog Competition!  It means so much to me to have your support.  The way I see it, the more exposure this little blog gets means the more exposure my little boy gets.  Wouldn't it just be the craziest thing if someone out there in the world saw Gavin and led us to a diagnosis for him?  Hey - my tagline is "A Mommy's Quest to Make the Impossible... Possible."  This is definitely true and why I am begging you so much for votes.  I am, as always, so grateful for the love and support from my readers!!

I'm feeling the love today!  Hope you are, too.

Happy Valentine's Day!

A Funny Thing Happened On The Way...

This past weekend has been a head trip... in a good way and a not so good way.

The not so good way had me slightly obsessed and paranoid about this Parents Magazine Blog Contest.  Many times over the weekend I was checking numbers - how many new visitors?  What is my vote percentage?  And I was feeling very paranoid about my writing.  I mean come one, the other nominees have books and newspaper columns and millions of readers and...well...they use correct grammar and punctuation.

The not so good way had me feeling under pressure about my content.  As I replayed old blog posts over the weekend, I fretted about today's entry.  And tomorrow's.  And next month's.  Should I stop posting day to day things?  About getting ready for a consignment sale... or Gavin's new shoes... or Brian's snack choices... or our butterfly experiment?  Is this post or that post "tissue worthy?" Do I need to be deeper?  Expose more of myself? Be... different??

But as the weekend went on, I realized many things... about this "contest," about the other nominees and about me.

They chose me before I even knew I was being considered.  That was what I had to keep telling myself all weekend.  The editors at Parents Magazine didn't choose me for what they thought I might turn out to be.  They didn't choose me for how my writing may change.  They chose me for who I am today and the stories I tell about our real life.  (Because let's face it - you can't make this crap up!)

Over the weekend, I delved into each of the other nominees blogs.  Suddenly they weren't "the competition" anymore.  I found myself reading Jo Ashline's entries out loud to Ed as we were lying in bed.  Her post "And a Little Child Shall Lead Them" reminded me so much of my relationship with Gavin and spirituality.  Jo and I corresponded several times over the weekend and I already feel like I met an old friend.  And Deanna's blog about her two children found me relating left and right.  Her daughter has Down's Syndrome and her younger son is very close in age - much like Gavin and Brian.  Her post, "The Milestone Competition" had me nodding the whole time.  I remember how bittersweet it was to watch Brian soar past Gavin in that department.  I feel like the whole world is aware of Glennon Melton over at Momastery - she's an extraordinary person and blogger.  She has written many posts that have gone viral, but her post called "Fourteen" is my all time favorite.  It's one I think about often - even months and months after I originally read it.  I remember my struggles with an eating disorder and it was like she had written my words.  Finally, there's Dan.  A single Dad who I wasn't sure I'd relate to much at all - but I was sucked in, as millions monthly are, and clicked on the post that summed up this whole experience for me.  It's called "The Disease Called : "Perfection" and I hope you'll read it.  His main message?  Be real.

Be real.

So the time I spent worrying about changing for a new group of people that may never come or stay was wasted.  I need to just stay me.

I'll still report when the boys get impossibly adorable buzz cuts...

And when they have visitors - like our former helper, Miss Katja, who we love...

I'll still write about Gavin's progress and post unbelievable and inspiring videos of simple things like this...

...and tell you that this Wednesday, Gavin will complete his "5K Marathon" at school.  I'm charging my camera batteries as I type this.  There is going to be a big celebration as he walks the final leg in the school hallway.  You won't want to miss it!!

And I'll keep you up to date on my Mom as she sells the family home and creates a new life after losing my Dad.  

We were all at the house this past weekend helping her with some things.  I took this photo of Gavin near the top of the stairs and didn't expect it to come out looking like it did.  But when I looked at it, it took my breath away.  This child has such a bright future ahead of him.  I just know it.

I was lucky enough to bring home this desk from my parent's basement.  I used this desk as a kid and spent many hours playing "school."  It's so sweet to see my little boy enjoying it now.

So yes... a funny thing happened on the way to today.  I realized that this "competition" has changed many things.  It has brought new friends into my life.  It has increased Gavin's exposure to the world and, in my eyes, could possibly bring him closer to someone recognizing his diagnosis.  It has exposed me to new blogs that are written by wonderful people that I could learn so much from.  And, most importantly, it has reminded me how important it is to stay true to myself.

To just be real. 

 Thank you, as always, for loving our family like you do.