Thursday, February 28, 2013

Dear You, When It Comes to Professionals...


I felt blindsided when Gavin was born. 

Not the "I expected a girl and got a boy" kind of blindsided.  Or the "I planned for a natural birth and had a C-Section" kind, either.  I felt blindsided because I realized rather quickly that I was out of my league.  With my own child.  He had so many issues and I had to rely on nurses in the NICU, doctors attempting to diagnose him and well meaning social workers trying to make things right in my world.

I needed all of them.
I hated all of them.

In the beginning, I expected so much from these professionals.  I hung onto every word - and then resented their every breath.  


I know what you mean about expecting people... expecting anyone!... to say the right things.  But I have bad news for you.  They never will.  Just like I said in my "about those friends" letter, no one will ever know exactly what you need.  You can tell your close friends and family, but you can't really do that with professionals.  You can tell your Mom or your sister or your friend, "Listen, it would really help me, emotionally, if you didn't say 'Wow - your life really sucks.' every time I tell you something about the baby's issues.  But you can't really say to a professional, "Listen, Doc. Can you hold my hand while you break more bad news to me about my child?"

But.  There are some things you CAN do.

When Gavin was an infant and I had to bring him to the pediatrician for developmental visits, the nurse would always run down her "typical" checklist.  "Is he holding a rattle?"  no.  "Is he making eye contact?" no.  "Is he sleeping?" no.  I would leave there in tears every time thinking, WHAT THE HELL??  Why would they ask me these things knowing that my child can only lay there and is CLEARLY not following the "developmental checklist."  I felt so defeated - and so hopeless about Gavin's bleak future. But they didn't know  - they were only doing what they were used to.  I know they didn't intend to crush my spirit or hurt my feelings, so it was hard to be upset with them.   So I took control. I brought in a typed up sheet for each visit listing "All The Things Gavin CAN Do" and asked them not to go through the checklist with me anymore.  They were so relieved - they had always felt awful asking me those questions.

For the rest of your life with your child, you will encounter lots of professionals with lots of advice and opinions.  I have a great, great respect for people who devote their life to helping our special kids.  Whether they are doctors, therapists of any kind, psychologists, teachers, personal aides or nurses.  I come from a place of trust - so I always assume that professionals come from a place of compassion and are well meaning.

That being said... you will need to get used to hearing things you don't like.  Getting advice that doesn't fit.  Hearing statements that rub you the wrong way.  Getting a suggestion that seems ridiculous.  Or  feeling offended or judged.  "How could that happen??" you may ask.  "Why would she say that?" you might wonder.  "Who does he think he is?" you might shout.  Here is the secret: they are human.

You'll encounter professionals that give you advice based on what they've learned from books. Or, very often people will bring what worked well with one family and assume it should work well with yours.  It's hard, but you have to imagine a filter in your brain and heart.  Take everything in with some nodding and smiling - keep what you can use - and disregard the rest.  I think most of the time people's intentions are good and they are trying to help, even if they're not helping at all.  Just appreciate their efforts internally and let go what pisses you off.  It will only hurt you if you hold anything against a professional (or anyone, really!) who isn't involved in your every day life.

It's critical to follow your gut.  The doctor treating your child isn't communicating well with you?  Find another.  Your child cries and cries when one particular therapist comes to the house - but doesn't cry for any of the others?  Find another.  The social worker assigned to help you isn't really helping you at all?  It really is okay to find another.  The worst thing you can do is to internalize things that people say or do.  And I think your biggest downfall in getting used to having a child with special needs will be expecting people to make it better with their words or actions.  They will fail you every time.  YOU have the power to change your perspective and your feelings - and YOU have what it takes already to know what is best for child.  It may not feel that way, but it's true!!  

The other day, a friend posted this quote on Facebook and I felt it really summed up my philosophy:

“If you don’t have garbage, you have nothing to use to make compost. And if you have no compost, you have nothing to nourish the flower within you. You need the suffering and afflictions in you. Since these feelings are organic, you can transform them and make good use of them.” ~ Thich Nhat Hanh

Having a child with special needs is not easy.  No one will every say that it is.  And you will have feelings of anger, resentment, grief and sorrow many times along the way.  Don't stay there.  Use those feelings to empower yourself into action.  The more positive YOU are about your child's possibilities... your child's future... your child's daily life... the more positive OTHERS will be, too.  I promise you this is true.  Take this blog for example.  I can make a fuss over something simple like this photo which, to any outsider would not be a big deal.  But because of this community I've created, everyone knows that this photo is a dream come true for our little family.  Seeing my two sons holding hands and walking together?  There's nothing like it.  And because I shared, people can celebrate that moment with me.  I can assure you - feeling the excitement of people over this photo empowered me as Gavin's Mommy.
And because I have created a space where Gavin (and Brian!) are celebrated and lifted up and encouraged on a daily basis, people want to join in and participate!  People love to be a part of positivity.  Create it - and you will attract it.  You'll see.  And you'll see a difference in your child, most importantly.  

Positive energy is contagious.
The professionals that will come into your life are people first.  Make sure they know your child.  Not just know the diagnosis or the features or the medical conditions.  Make sure they know your child.  Get them excited to see your child.  Include them in your child's great accomplishments so they feel like they are part of this great ride into the future.  

Just don't expect them to make it better for you.  Truly, the only person that can make anything better for you... is you.

With every good wish for a positive future, 

me.

Tuesday, February 26, 2013

Our Sweet Star...

Brian is the "Star of the Week" at school this week!  He's a star every day of the week around here... but this week he gets extra appreciation at school.  Today he got to bring in one of his favorite books to share with his class...
This Sammy The Seal book was mine when I was little, so it was extra special to me that he shared it with his friends today!
Gavin and Brian love books.  LOVE them.  And thanks to a long time reader, adopted Grandmother and retired schoolteacher... our wonderful Miss Barb... we have years worth of books.  Four bookshelves filled... and boxes and boxes of extra so we can keep switching them up to keep things interesting.  Miss Barb was looking for a home for her huge collection... and we were the VERY lucky and VERY grateful recipients!  Books are treated like gold in our house.

Brian has been "reading" to us lately which I love.  He tries to remember the story - or he'll make up his own.
 I especially love when he "reads" to Gavin.  They love hanging out together in the new "book nook" I set up.
I love when Brian does anything with Gavin.  It warms my heart when he tries to play with his big brother or engage him in any way.  But it means even more to me when Gavin sticks around and enjoys his brother!  Sometimes Brian is just too much - too loud - too "in Gavin's face" - and he crawls away as fast as possible.

The  mornings have been very cold here and we all bundle up and wait in the garage for the bus to come for Gavin and Miss Sara.  Gavin isn't keen on keeping mittens on, so after he is bundled in his coat and hat I wrap one of Ed's fleece jackets around him and tie the arms behind his chair.  
Brian is our entertainment in the morning and keeps warm by running around like he's on fire.
This morning Brian wanted to help push Gavin onto the wheelchair lift which just about made me cry.
I've been told that Brian is very sweet in school and helpful when some of his friends need assistance.  I hope this never changes.  I hope that having Gavin as a brother has already influenced him in the best and most empathetic ways possible.
My little star with a heart the size of his Daddy's.

Speaking of which...how handsome is Daddy in his new headshot for work?  
I love my little family.

**Please take a moment to vote for my "Share Your Heart" entry on CaringBridge!  I need about 200 votes to catch up to the current lead.  If each of you who reads this blog votes, I may pull it off!  The winner with the most votes by March 6th wins two iPads!  I'm hoping to win so I can give one away to one of YOU on this blog!**




Monday, February 25, 2013

Fascinating Discovery...

I mentioned in yesterday's post that I had contacted a "Medical Intuitive" named Anthony Williams. Basically, he's  a psychic who can tell you what's wrong with you. We wanted to see if he had any insight into what might be going on with Gavin. I'll admit that Ed and I are open to these types of things.  Sure, there are some quacks out there - "Boardwalk Psychics" and people who take your money - but there are also people who really have a special gift.  Not knowing which one we'd encounter yesterday - we really took a chance.  A $350 and hour chance.  We figured we had nothing to lose...except $350.

It paid off.

Anthony Williams told me that he believed Mercury was Gavin's issue.  And mine, too.  That I passed on a mercury sensitivity - along with actual mercury - to him in utero.  That it caused neurological damage and even explained his features, or birth defects.  He told me his suggestions for supplements that I could give Gavin to help eliminate the Mercury slowly and safely from his system and he really thought we'd see great improvement from Gavin rather quickly.

I wasn't a total disbeliever yesterday.  But I wasn't sure I was totally "sold" on the idea.  I would definitely say I was intrigued.  The way I saw it, giving Gavin supplements and making small changes in his diet couldn't hurt him.  And I knew my next step would be to consult Dr. Kang, our acupuncturist immediately.  She has successfully tested the boys for allergies before and has not only been 100% accurate with her non-invasive muscle testing... but she helped me to ELIMINATE Brian's peanut allergy.  (Much to the shock of his traditional allergist)

After school today, Gavin and I headed to see Dr. Kang.  I explained the entire situation to her.  The blog competition - the influx of traffic - the tons of suggestions and referrals - the "medical medium" - and the mercury theory.  She seemed a little bit skeptical of the medium, but agreed to test both Gavin and me for mercury.  Sure enough - Gavin and I both tested for mercury.  First she had me hold a vial representing mercury in one hand while I held my opposite arm straight out in the air.  She pushed down on my arm with all her strength and asked me to try to keep my arm in the air.  I could barely keep my arm up.  Then, still holding the vial, I had to hold Gavin's hand.  She would test him using me as a surrogate.  This time, I had ZERO strength when she pushed down on my arm.  Looks like Gavin has it worse than I do - the mercury has to go.  Dr. Kang told me to get both of our blood drawn to test the mercury levels, so I'm looking into the best ways to do that.

Is this it?  Could this be the "diagnosis" I've been searching for?  I really don't know.  Ed and I are both on board with working to remove the mercury from my body AND Gavin's and see what happens - knowing it can't hurt.  In the meantime, however, I will still pursue other avenues and genetic testing.  It's very possible that Gavin has a mercury issue and a genetic disorder on top of it.

I've already started Gavin on the supplements today!  Anthony recommended that he take the following:

Liquid B12 - He told me that Gavin uses up more B12 in his nervous system because he has to work much harder than we do.

Liquid Zinc - This will support his endocrine system and boost immunity.

Hawaiin Spirulina Powder - This is to support his brain and nervous system.

Liquid Ginkgo Leaf - Not as a "memory booster"... but to support his neurological system.

Melatonin.  We have been giving him Melatonin routinely at night for the last two or so years and had no idea it had other benefits besides to help him fall asleep!  Gavin really needed assistance - otherwise, he'd be up every night playing in his bed until midnight!  Anthony said that Melatonin acts like an anti inflammatory agent in the brain.  It also helps repair nerve damage and electrical impulse issues.  I feel good that we might have been "helping" him without even knowing it!  Gavin also had a head start with nutrition thanks to Dr. Coralee Thompson.  I consulted with her when Gavin was a baby and she designed an entire nutrition and health program that he follows to this day.  She ended up writing a fabulous book that I highly recommend - "Healthy Brains, Healthy Children" - whether your child has issues or not!

As for his diet, Anthony simply suggested decreasing the fat somewhat and increasing sugar.  He told me that Gavin needs ten times the amount of sugar (natural sugar - not candy or juice) than 'normal.'  He expends more energy to do things and overworking his electrical impulses.  We generally add butter to every pureed meal he has - so we will just substitute that with applesauce.  He also told us to increase his fruit intake in general and to add cilantro to his veggie stew.

I've added "Zeolite" to my regimen.  I took the first dose this morning and - holy cow.  Let's just say it has already started to work.  Trust me.  You don't want to know the gory details.

These are all very easy things!  I'm really excited to see how Gavin progresses over the next few months.  I hope you are, too!

Over the weekend, Gavin shocked us by deciding to walk more than he ever has.  He was even turning himself around on his own to walk in a different direction!  I was too busy hovering over him to grab a video, so Miss Sara took one for me today.  Check out these two videos...and prepare to be amazed.

If Gavin is making this much progress now... can you even imagine what's ahead a few months from now?  I can't wait!

In other news... Brian has been kicked out of school!!
He has been attending a pre-school for help with his speech delay since January of last year.  He really loves it there - and we love his teachers, his speech therapist and his little friends.  But he really hasn't "needed" the extra help for quite some time, so the news didn't come as a shock to me.  I'm so grateful to his teacher, Miss Laura, and his speech therapist, Miss Maggie, for how hard they worked with and cared for him.  I'm currently "pre-school" shopping if anyone in the area has any suggestions or referrals!

I have a feeling before you know it Brian will be reading to Gavin... and Gavin will be complaining that he wanted a different book... and soon I'll be telling the boys to stop fighting with each other and to "keep it down"... and all my dreams will have come true in a big happy ending with a bow on top.


Sunday, February 24, 2013

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.  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.
Parents Blog Award Finalist 


Friday, February 22, 2013

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.

I want you to know that I am taking every suggestion and referral seriously - and am grateful to each of you for taking time out of your busy lives to write to me.  Someone even suggested that we contact a medical intuitive named Anthony Williams.  We are open to this type of work so I didn't hesitate to look into this.  When I went to his website and saw his connection to Padre Pio, it felt like a sign.  Ed and I have taken many trips to the Padre Pio shrine which is not far from our hometown.  I sent our story, and yesterday's blog entry, to Anthony Williams - and he set up an immediate phone consultation with me this Sunday!  I'm really looking forward to hearing what he has to say about Gavin.  And if he has time, maybe me!

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.
Parents Blog Award Finalist



Thursday, February 21, 2013

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.
Parents Blog Award Finalist


Wednesday, February 20, 2013

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!!
Parents Blog Award Finalist


Monday, February 18, 2013

I Should Have Stood Up For Love...

To the lady at the Adventure Aquarium in Camden today:

Hi there.

You and I were at the Aquarium at the same time today.  I was there with my husband and two boys.  You were there with three boys - and a baby in a car seat.  We seemed to be on the same tour as we meandered around the aquarium.  Except I think our children had vastly different experiences.
You see, I have a son with special needs.  I took a chance and decided that Gavin would walk as much as possible today.  It was so crowded and kids were running everywhere - but Gavin, who is really just learning to walk at five years old, really held his own.  Sure it held us up - but from what?  We brought the kids to the aquarium to have a fun morning and we certainly weren't in a hurry!  Plus, Gavin walking is such a huge accomplishment as it is.  It's amazing that he walked amongst the overwhelming crowds for such a long time.  I hope you noticed how encouraging we were towards Gavin and how even his little brother would frequently pipe in with a, "Good job, Gavin!"  

Words matter.
Meanwhile, it was hard not to notice you.  You seemed to isolate your wrath on just one of your sons who looked not a day over seven.  The first time I heard you, your son was lagging behind your family.  

"COME ON!  HURRY UP!!  WHAT? ARE YOU SLOW?  CAN...YOU...NOT...UNDERSTAND...ME??!!??"  

I hurried Brian along and hoped that he didn't hear you.

Lately, Brian has been obsessed with snacks.  He tested me at every corner with "When are the snacks, Mama?"  "Is this when we have our snack, Mama?"  "Is it time for a snack, Mama"  "I'm hungrrrryyyyy, Mama!!!"  It got a little irritating, but I came up with a compromise.  I wasn't going to fight with him to "STOP ASKING ME FOR A SNACK!"  It wasn't important to me.  I hope you noticed that I picked my battle.  

Patience matters.
Meanwhile, you were having your own battle.  We were in the same place at the same time again.  Ironically, at the shark exhibit.  As I stood with my sons, watching the sharks circle above us... it was hard not to notice the sharks circling your son.  You were berating him for his shoe being untied.  

"GET DOWN THERE AND TIE YOUR SHOE."  
I glanced over several times to see his huddled body kneeling on the floor trying hard to tie the laces while your eyes - and the eyes of his brothers - pierced his rounded back. 

"WHY CAN'T YOU DO IT?"  "YOU'RE NOT DOING IT RIGHT, STUPID!"  

At this point, Brian caught on to the angry energy and caught my eye.  I just smiled and said, "Look at the sharp teeth on that shark up there!"  When I really wanted to say, "Hear the sharp words from that angry lady over there?" as loud as I could.  

I felt the urge to say something to you.  But I didn't.  And as I heard whispers and saw eyes dart your way, I noticed that nobody did anything.  We all minded our business.

It got a little too crowded for us, so we decided to leave.  As the elevator door opened to the lobby, my heart sank.  There you were, sitting on a bench with your family... still yelling at your cowering little boy.  Ed was kind enough to run out to the car on this frigid day and warm it up for us... which meant that you and I were across from each other for ten whole minutes.  

"PUT YOUR COAT ON, DAMN IT!"  

Mama, why is she yelling?  I don't know, Brian.  She seems pretty angry, huh?

"Can you help me zip it, Mom?"  I heard your son sheepishly ask you.  

"WHAT???  YOU KNOW HOW TO ZIP YOUR OWN FREAKING COAT.  DO IT.  NOT LIKE THAT!  YOU'RE GOING TO RIP IT!  I SWEAR TO FREAKING GOD, IF YOU BREAK THAT ZIPPER OR RIP THAT COAT YOU WILL NOT GET ANOTHER COAT I DON'T CARE HOW COLD IT IS. YOU ARE SO STUPID.  STOP CRYING! STOP IT! I'LL GIVE YOU A REASON TO CRY, DUMB ASS."  

As your other boys giggled at their brother getting pummeled with insults, one of them spoke up and asked, "Want me to zip it for him, Mom?"  

"NO! THE CRY BABY KNOWS HOW TO ZIP HIS FREAKING COAT - NO ONE HELPS HIM."  

I stood there frozen with my back to you - staring at my two boys.  I know what it's like to feel impatient.  It happens to the best of us!  And I'm surely not perfect and don't have any "Mom Awards." But as I looked at Gavin and Brian, and saw Brian's eyes as he heard you yelling... I wanted to cry.

I turned around towards you.

I stared.  And I stared.  I was beaming energy your way and praying that you would look up at me.  But if you did - what would I do?  I wanted to show you a compassionate smile.  It would have meant, "I can see you're struggling, friend.  I don't know what's going on in your life that is so bad, but I'm sorry.  I hope you can stop taking out your anger on your beautiful son."  But I was afraid you'd misinterpret my look of compassion as collusion.  I didn't want you looking back thinking, "Yeah - see what I have to deal with?  This stupid kid??"



I continued to stare.  And stare.  What if you looked up and I shot you a look that clearly said: "What the hell, lady???" Would you get it?  Would that "check you" enough to stop yelling at him?  Or would you jump over your baby's car seat and try to punch me?


At this point, I realized I had to address this with my sons.  I leaned down and loudly said to them, "Boys, I promise you - I will never talk down to you.  I will always respect you as people.  And I will never, ever shame you... in public OR in private."  As I lifted my head, I caught the eyes of an old man sitting on a nearby bench.  He gave me a nod as if to say, "Well done."

Did I think my two little boys, only four and five, would understand what I was saying?  Not really.  But it was my promise to them, nonetheless.  And if they don't understand my words, they will surely feel that I respect them through my actions.

It's possible you are really struggling.  Maybe you have depression or mental illness.  Maybe your husband just left.  Maybe your house just burned down.  I thought of a thousand different scenarios in my head until I realized... nothing would justify your behavior.  Nothing.  

And it became clear to me that you were not new to this rodeo called abuse.  This child was not a stranger to shame, either.  If I had to take a guess, I bet you were treated that way as a child.  And I'm so, very sorry if I am right about that.

But ma'am, as much as you feel "in control" when you put that little boy with the sandy hair and untied shoe in his place... you are actually the exact opposite.  And as much as you think your other sons aren't paying attention... I can assure you, they are.  Every one of your four children will learn how to love, how to respect, how to make healthy choices and how to handle stress... from you.  You can be the one to break what is probably a generations long cycle.  That would be the most powerful thing you'd ever do in your lifetime.

Words matter.  Patience matters.  Changing matters.  
YOU matter.

I feel a tremendous amount of remorse for not stepping in.  And as I shared awkward glances with others around us that heard your stinging words, I know I'm not alone.  I should have stood up for your boy.  I should have stood up to you.  I should have told you it's possible to love yourself.  

I should have stood up for love.

(Please consider voting for my blog? I am hoping increased exposure might give us a lead on a diagnosis for Gavin!  You never know, right?!?  And check out the blog I vote for in the category "Blog Most Likely To Have You Achieve A Personal Goal - The Orange Rhino - which is devoted to not yelling at your children!  Very apropos to today's post!)
Parents Blog Award Finalist




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