I could potentially be opening up a bag of worms here, and while I don’t intend to, I think it’s a hot topic that should be discussed in a healthy and respectful way.  Now, if you reside in the SOD/ONH community like we do, the topic of stem cell transplants is nothing new.  And, if you reside in that community, you know what a hot topic it is.  It’s the same as talking about religion or politics…a very sensitive and controversial topic.

To switch gears and give some background, Emma sees Dr. Borchert in Los Angeles every year.  We are SO blessed to have an amazing physician who knows SO MUCH about Optic Nerve Hypoplasia (ONH) so close to home.  We always take the opportunity to create a little girls getaway, just me and Emma, and this year we’re headed out there in November!!  You can read more about our visits with Dr. Borchert here and here.  He is extremely talented and knowledgable in the field of ONH and really opened our eyes (no pun intended) to what ONH was all about.  He is currently conducting an on-going study to try to find the cause(s) of ONH.  It’s still a mystery, but surprisingly the number 1 cause of blindness in children (someone please correct me if I’m wrong on that…statistics may have changed).  Every few months (quarterly? semi-annually?) he releases his findings on different things pertaining to ONH.  This is his latest release.  It pertains to the transplantation of stem cells being done in China.

“We are aware of the Stem Cells China program; however, we have not yet reached the state of knowledge with which stem cell treatment for ONH in humans can be done in the US or Europe. Research with stem cells for this and other optic nerve conditions is being done on laboratory animals. Stem cells research is the most promising form of therapy for ONH in the future; unfortunately, it is far from ready for use in humans. We have not yet even achieved success in treating mice with stem cells. There are considerable risks to this treatment as it is purportedly being administered in China, and the benefits are presently unknown. In the US and Europe, experimental research exposing children to potential serious risks and no known benefits, is considered unethical. The testimony of previous recipients that stem cell therapy resulted in improved vision bears little scientific merit as many children with ONH enjoy late, spontaneous improvement in vision. Based on this information, we are unable to recommend the Stem Cells China program as a safe and effective treatment of ONH”

I am here to give you my thoughts on the subject.  And while I have a very defined opinion of it, I do not intend to offend anyone who may be thinking of going to China, or has already taken their child to China.  I am coming from a mother with a child who has SOD/ONH among other disabilities.  My child is very blessed to have unilateral ONH, meaning only one eye is affected.  She is legally blind in her right eye, while her left eye is near perfect.  I say that because I fully acknowledge that my opinion could be different if she had bilateral ONH that left her completely blind.

My good friend, Marshelle, and I talk about this often.  And we share the same philosophy.  Emma has so many other issues that I would love for her to be cured of.  Her seizure disorder is nasty.  And she even has very mild and minimal seizures.  They are seizures, nonetheless, and they are scary.  Her imbalance of hormones is tricky, especially when she’s sick.  I’d love for her to be rid of that.  But even that’s not that bad.  I think mostly, I’d love for her to not have any behavioral issues (ADHD, mood disorder, whatever you want to label it).  I don’t think I could take my child to China, where their medical standards are not the same as ours, for a procedure that may or may not work.  Nothing is guaranteed.  I have read that many children do experience improvement in their vision, but I have not heard of any cases where the vision is completely restored.  To boot, this trip is also very costly.  If I remember correctly, the total is around $25,000 just for the treatment.  In my opinion, that’s a lot of money to spend on a therapy that may or may not work.  In China.

Again, this is strictly my opinion.  I don’t have any more knowledge of it than the average ONH-experienced person.  I am most definitely open to starting a healthy and respectful discussion on the topic of stem cell transplants done in China.  And I’m happy to answer any questions that anyone may have!  What I do know is that we all want the best for our children.  There’s not one parent who goes to China for this treatment that doesn’t want the best for their child.  And this is where we agree to disagree!

It’s been too long.  Way too long.  And for that I apologize.  To be honest, I’ve been so busy and so stressed that this blog fell to the wayside.

Let me rewind.  On October 1st, Emma and I made our way westward to California.  Our favorite state (after Arizona, of course).  We had a fun mother/daughter trip planned and to be honest, I couldn’t get us out of here quick enough!  We spend Friday through Sunday in Oceanside.  We hung out with family for dinner, and saw our cousin play in his roller-hockey game.  Saturday we met up with some friends for a slightly noisy and chaotic dinner (sorry, Shauna!). The food was good and the company was great, even though we had a hard time hearing each other!

Sunday was a great day, as Emma got to go sailing on a real sailboat in San Diego harbor.  It was soooo cool and she had a great time!  We met up with Marshelle and Emily, our friends who live there.  I’ve talked about them quite a bit.  Emily is 11 and has SOD just like Emma.  And she’s an absolute doll.  Love that girl!  Marshelle is her grandma and such a huge source of support and strength to me.  Love that girl, too!  The girls were absolutely adorable (as they always are) on the sailboat.

Check out some of our sailing pictures.  Please excuse the quality.  My nice big camera decided not to work right before we got on the boat.  So I was left with my iPhone!

All secure and ready to depart!

Captain Emily sailing the high seas!

It took Emma a little while to warm up to it…

…but once she did, she didn't let go!

These two girls were adorable together!

We went sailing through a non-profit charity called Heart of Sailing.  I couldn’t have been more impressed.  They were awesome and so accommodating.  Our captain, Jamey, was awesome.  He was in the Coast Guard, was once a special education teacher, and had a daughter with special needs as well.  He was wonderful.  I would definitely recommend other families who have children with special needs to look into this.  It was awesome and Emma and Emily had a blast.  I’m  positive we’ll see them again next time!

After our trip to San Diego, we headed north to Anaheim…Disneyland was next on our agenda!

I have an admission.  I’m anal retentive justabit.  So, for this post, since I am having a hard time organizing my thoughts, I will bullet the highlights.  And WordPress allows me to bullet.  Score!  Bear with my and my type-A mind.

• We (me and Em) had breakfast on Saturday morning with 4 other people from our Focus Families group.  Score! 2 we had met before, 2 we had not.  It was a crazy busy breakfast, but fun to learn about new friends, and catch up with old.  And the highlight of that breakfast (can I sub-bullet? no I cannot) Marshelle got Emma got swallow her capsules!! This is huge news.  Huge.  And she didn’t even have to convince her, bribe her, or sit on her! Score!
• We went to Stuffington Bear Factory and took a tour and built our own bears with the whole group.  So fun!!
  

  The girls (Emily, Emma, and Jewelia) and their bears!

• We spent the afternoon at the hotel with Marshelle and Karen and their granddaughters.  Girls were so cute together.  Seriously cute.  Marshelle and Karen and I caught up.  This is where my former tweet and facebook post about being with people who 100% understand you comes in.  Right there.  No explanations needed.
• We got to visit the exhibitor hall.  Let me just tell you about it.  I’m at the ACB (American Council for the Blind) convention.  The exhibitor’s hall was full of blind people everywhere!  Of course I expected it, but to experience it is something else!  Canes, guide dogs, human guides, everywhere!  We didn’t really find anything for Emma, as she really doesn’t need any visual aides.  I’m glad we went, though!  Girls also got to swim in the pool in the afternoon. It was hot!!
• Dinner was SUPAH! I felt bad because they wanted authentic Mexican, but I only know good places up by us, not in Downtown Phoenix.  But I got the name of a place from a friend of my Mother In Law.  And it was fabulous!  Authentic, delicious, and everyone was impressed!  Score!  The only thing they need to improve is their margaritas.  I’ve had better.  Just sayin’.  Ooh, I should’ve tried a michelada though!
• This morning was another breakfast with the gang.  So much fun.  Unfortunately Marshelle, Karen, and the girls head back to California today.  It was a quick weekend for them.  I’m hoping to meet up with Sarah this week, but we’ll see how things pan out.  It’s a lot of driving from my house to downtown.

All in all, a wonderful weekend!  We had so much fun and it was great meeting people that really do mean a lot to me.  I don’t know if they realize how positively they affect my life!  They’re like a breath of fresh air!  I still need to tell you about Marshelle…she’s a hoot!  And a hero!

How was your weekend?

I have to tell you about my weekend!  But I have to try to find the words to describe it.  I knew it would be fun.  I knew I would get encouraged and inspired.  But it was even more so then I thought it would be!  For those of you who are new to my blog, I belong to two groups that support Emma’s condition (SOD)  They are the MAGIC Foundation and Focus Families.  They provide such a wonderful support system to me.  Always.  Whenever I need it.  They were especially supportive in the beginning when Emma was first diagnosed.  Through the emails, you become familiar, friendly, and in some cases very close with these people.  3 of my close friends came out this weekend!  One I had never met before, and I was really excited to meet her.  I picked Sarah and her friend up at the airport.  It was an interesting meeting as we had never met before, and Sarah is blind.  I couldn’t hold up a sign for her, and didn’t want to call her name out!  Fortunately it was easy to spot Sarah and her friend.  They had guide dogs with them, and Sarah had also told me what they were wearing (Sarah and her friend, not the dogs!).  And from that point there was an ease to the friendship.  It was like old friends reuniting.  Except- and I did admit this to Sarah- I didn’t have any experience with bling people.  What should I do?  How do they need help?  She laughed it off by joking that first I needed to kiss her feet.  This was not going to be as hard as I thought!

To say that Sarah is an inspiration is a huge understatement.  She’s my age and living completely independently.  While she doesn’t have the hormone deficiencies that many people with SOD have, she’s got her plate full of other conditions that continue to challenge her.  But she never is down about it.  She doesn’t complain about it.  She does what she can and she does remarkably well.  She is a huge advocate for teaching children some independence.  It doesn’t matter how severe the condition is, every child can have some independence and it’s so important in their upbringing.  Sarah most certainly didn’t get to where she is today because she was sheltered and given everything she wanted.  She has worked very hard to get where she is.  And I’m sure it wasn’t rainbows and butterflies the whole time, she is who she is because of her wonderful upbringing.  And she emphasizes that to the parents on the list who may want to coddle their child.  I love that she speaks her mind, too.  She’s a smart cookie and isn’t afraid to share her knowledge or her experience.  She’s helped encourage me to push Emma to try new things.  Or to back off when I want to shelter her more than I should.  If I have questions about her schooling, she’s willing to offer her two cents.  And then there’s her dog.  Fargo is C.U.T.E.  And so sweet and well-behaved.  We became friends fast when he laid on my feet the first day at lunch!

"Fantabulous Fargo"

I haven’t even told you about my weekend!  Or my other friend, Marshelle!  I will save that for tomorrow.  It’s worth sharing!

And…did you know I took 909 pictures during our 11 days in California?  I need to go through and pick a few of my favorites to share with you.  We had a GREAT trip!  So stay tuned….I have  more for ya!!  Also, I wanted to remind you that I have a Facebook page and would love if you liked me!  You can visit me here.

My friend posted an MSN article a few days ago about some new statistics regarding ADHD.  And they’re not that surprising.  The title is Pesticides in Kids Linked to ADHD.  The title says it all.  But is it that surprising?  Maybe some of the numbers will surprise you.

“Kids with higher-than-average levels of one pesticide marker were nearly twice as likely to be diagnosed with ADHD as children who showed no traces of the poison…. The most alarming finding was a near-doubling in odds of ADHD diagnoses among kids with higher-than-average levels of the most common of the six metabolites detected. Kids with high levels of dimethyl thiophosphate were 93 percent more likely to have the disorder than children with with undetectable levels of the marker.”

Yeah, those are some big numbers.  But there are SO many other factors that go into ADHD.  Take Emma, for example.  She has at least 2 other factors that contributed to her diagnosis.  First, kids with SOD have a tendency toward an ADHD diagnosis.  Secondly, it can be hereditary and her Dad had/has ADHD (truth is, he is able to control the tendencies).  So it was almost a given Emma might have it.  Hence my persistence in getting the right evaluations.

Which leads me to my next question.  I wonder how the diagnosed kids in the article got diagnosed.  It’s no secret that ADHD is widely over-diagnosed.  I have had people tell me, “well every kid these days has ADHD.”  Which is precisely why I went through the measures I did to get her diagnosed correctly with a trusted pediatric neuro-psychologist (who is wonderful, if you need someone from PCH).  But practically any doctor can diagnose ADHD these days.  And they can all write out that prescription for Ritalin, too.

So what do we do about this?  Well, the article suggests buying organic as much as possible and washing all produce.  I think the last one is a no-brainer.  I do try to buy organic when it’s cost-effective.  That stuff can be expensive!  I DO wash my produce every time with Fit Spray.  I find mine at Fry’s.  Whole Foods also has a spray…actually a few to choose from.  I believe Fit is made from citrus.  So is the Whole Foods spray, and their’s is organic, too.  Oh, and I will try to stay away from frozen produce.  Which actually will be easier said than done.  Eek!  At this point, what more can you do when it comes to produce?

I realize this is quite a hot topic and I am not trying to step on toes.  But I would love to start a dialog about this and see what you all think of the ADHD topic and this article in particular.

I started a discussion in my Blog Frog community over here…come on over and join in, won’t you?

I’d like you to meet George.

He is running an AMAZING race for Luci and the MAGIC Foundation.  This is Luci.

Their story is completely amazing.  And George’s journey is nothing short of inspirational.  On April 25th, he will set out on a 150+ race throughout the Kimberly region of the Australian Outback.  George’s goal is to race an ultra-marathon on every single continent in order to spread the word and information about growth disorders.  What’s even more amazing is that Luci isn’t even George’s daughter!!  Luci is the daughter of a co-worker of George.  I really encourage you to read George’s story here and click on ‘George’.

You can read all about Luci and her situation here and click on ‘Luci’.  Her story sounds a lot like Emma’s except Luci was diagnosed shortly after birth.

Keep up with George’s blog during the race here and click on ‘Australia blog’.

I LOVE these stories!!  We don’t get to hear enough of them…don’t you agree?

Knowledge Safari is a social network catering to parents, grandparents, aunts/uncles, siblings, friends and teachers of children who have special needs and those living with special needs. On their blog they discuss hot topics and raise awareness about various special needs.  And on Friday, they spotlighted (is that a word?) SOD with a link to my lil’ ol’ blog!  How special is that!  You can read their spotlight right here.  They also gave a shout out to my good friend, Bree, whose daughter Avery also has SOD.  You can read about Avery’s story here.  I met Bree and her family in Chicago last summer when Emma and I attended the MAGIC conference.

Thanks to Knowledge Safari for helping spread the word!!

I was never in a sorority.  In fact, my University didn’t even have a Greek life.  For real.  It was is a very small Southern Baptist University located in the ghetto.  Anyway, no alcohol on campus, no dancing (heaven forbid), no co-mingling in dorms except for open dorm night (once a week for 2 hours where “all 4 on the floor” was the rule).  However, that’s not the point.  The point is that my friend (whose daughter also has SOD) sent me this story.  It rings so true for me.  I hope you enjoy it.

Thoughts of a Mom
By Maureen K. Higgins

Many of you I have never even met face to face, but
I’ve searched you out every day. I’ve looked for you
on the Internet, on playgrounds and in grocery stores.
I’ve become an expert at identifying you. You are
well-worn. You are stronger than you ever wanted to be. Your
words ring experience, experience you culled with your very
heart and soul. You are compassionate beyond the
expectations of this world.

You are my “sisters.” Yes, you and I, my friend,
are sisters in a sorority. A very elite
sorority. We are special. Just like any other
sorority, we were chosen to be members. Some of us were
invited to join immediately, some not for months or even
years. Some of us even tried to refuse membership, but to no
avail. We were initiated in
neurologist’s offices and NICU units, in
obstetrician’s offices, in emergency rooms, and during
ultrasounds. We were initiated with somber telephone calls,
consultations, evaluations, blood tests, x-rays, MRI films,
and heart surgeries.

All of us have one thing in common. One day things were
fine. We were pregnant, or we had just given birth, or we
were nursing our newborn, or we were playing with our
toddler. Yes, one minute everything was fine. Then, whether
it happened in an instant, as it often does, or over the
course of a few weeks or months, our entire lives changed.
Something wasn’t quite right. Then we found ourselves
mothers of children with special needs.

We are united, we sisters, regardless of the diversity of
our children’s special needs. Some of our children
undergo chemotherapy. Some need respirators and ventilators.
Some are unable to talk, some are unable to walk. Some eat
through feeding tubes. Some live in a different world. We
do not discriminate against those mothers whose
children’s needs are not as “special” as our
child’s. We have mutual respect and empathy for all the
women who walk in our shoes. We are knowledgeable. We have
educated ourselves with whatever materials we could find. We
know “the” specialists in the field. We know
“the” neurologists, “the” hospitals,
“the” wonder drugs, “the” treatments. We
know “the” tests that need to be done, we know
“the” degenerative and progressive diseases and we
hold our breath while our children are tested for them.

Without formal education, we could become board certified in
neurology, endocrinology, and
psychiatry.
We have taken on our insurance companies and school boards
to get what our children need to survive, and to flourish.
We have prevailed upon the State to include augmentative
communication devices in special education
classes and mainstream schools for our children with
cerebral palsy. We have labored to prove to
insurance companies the medical necessity of gait trainers
and other adaptive equipment for our children with spinal
cord defects. We have sued municipalities to have our
children properly classified so they could receive education
and evaluation commensurate with heir diagnosis. We have
learned to deal with the rest of the world, even if that
means walking away from it. We have tolerated scorn in
supermarkets during “tantrums” and gritted our
teeth while discipline was advocated by the person behind us
on line. We have tolerated inane suggestions and home
remedies from well-meaning strangers. We have tolerated
mothers of children without special needs complaining about
chicken pox and ear
infections. We have learned that many of our closest friends
can’t understand what it’s like to be in our
sorority, and don’t even want to try.
We have our own personal copies of Emily Perl Kingsley’s “A Trip To Holland” and Erma Bombeck’s “The Special
Mother.” We keep them by our bedside and read and
reread them during our toughest hours. We have coped with
holidays. We have found ways to get our physically handicapped
children to the neighbors’ front doors on Halloween,
and we have found ways to help our deaf children form the
words, “trick or treat.” We have accepted that our
children with sensory dysfunction will never wear velvet or
lace on Christmas. We have painted a
canvas of lights and a blazing Yule log with our words for our
blind children. We have pureed turkey on Thanksgiving. We have bought
white chocolate bunnies for Easter. And all the while, we have tried to
create a festive atmosphere for the rest of our family.
We’ve gotten up every morning since our journey began
wondering how we’d make it through another day, and gone
to bed every evening not sure how we did it. We’ve
mourned the fact that we never got to relax and sip red wine
in Italy. We’ve mourned
the fact that our trip to Holland has required much
more baggage than we ever imagined when we first visited the
travel agent. And we’ve mourned because we left for the
airport without most of the things we needed forthe trip.

But we, sisters, we keep the faith always. We never stop
believing. Our love for our special children and our belief
in all that they will achieve in life knows no bounds. We
dream of them scoring touchdowns and extra points and home
runs. We visualize them running sprints and marathons. We dream of them planting vegetable

seeds, riding horses, and chopping down trees. We hear their

angelic voices singing Christmas carols. We see their

palettes smeared with watercolors, and their fingers flying
over
ivory keys in a concert hall. We are amazed at the grace
of their pirouettes. We never, never
stop believing in all they will accomplish as they pass
through this world. But in the meantime, my sisters,
the most important thing we do, is hold tight to their little hands
as together, we special mothers and our special children,
reach for the stars.

Sorry for the delay in this…it wasn’t my intention!  However, I do have to share with you that we had a wonderful trip up north this weekend to visit the Polar Express!  This was our 4th year doing it and we had a wonderful time!  The kids got to play in the snow, they saw Santa, played with their friends, and overall, a fun time was had by all!!  And you know how it is, after a trip comes all the fun that unpacking can bring…laundry, groceries, tidying up again,  and a wishful early bedtime for me!

In my last post, I described to you what the meaning of ONH meant.  It’s more than Emma not being able to see well.  Of course we didn’t know that during her diagnosis at 4 months old!  But boy did we learn!  If you need a refresher about how Emma got diagnosed with SOD, read this.  Oh, and just a refresher, SOD is the acronym for Septo Optic Dysplasia.  In this post, I’ll tell you what exactly SOD means for Emma.  The interesting this about SOD, is that there’s no such thing as a textbook case.  I haven’t found two children that present the exact same symptoms that SOD can bring.  It’s a HUGE spectrum disorder, just like autism.

In my opinion, Emma’s case of SOD is pretty mild.  I had a medical professional disagree with me on that, once.  She said that there are no varying degrees of SOD.  I beg to differ, and I’ll tell you why.  First of all, there are 3 components of SOD, and you need to have 2 of them to be diagnosed with it.  The three components are hormone deficiency, Optic Nerve Hypoplasia, absence or malformation of the septum pellucidum and/or corpus callosum.  What?  Foreign language?  Click on the terms to get the wikipedia definition.  Or I’ll give you my very short answer.  Both of those (SP and CC) divide the brain into their hemispheres.  If I’m correct, there’s a bit of a debate as to how much they really contribute to a person.  One helps with communication between hemispheres (SP, I believe).  The other one helps with emotions.  I don’t know much about the corpus callosum or the septum pellucidum because Emma’s are both in tact.  However, she obviously has the ONH and she also has  hormone deficiency.

The hormone deficiency is a big deal.  She doesn’t produce hormones!  Now, it’s a little embarrassing to admit to this, but I don’t know exactly how many hormones a child her age produces.  I just know the ones she doesn’t produce.  Shouldn’t I find out the answer to that?!?  Anyway, she doesn’t produce thyroid, growth hormone, and cortisol.  Of those 2, the growth hormone and cortisol are the most important.  The growth hormone is a shot that we give her every night.  Our body naturally produces GH and releases it at night time.  The interesting thing is, GH doesn’t just help with lateral growth.  It helps all of our organs function!  So when people ask if she’ll stop taking it as an adult, the answer is NO.  She’ll need it for life (or, like Brett says, “until medical science catches up”).  Does she mind the shot?  Not now.  In fact when we tell her we’re getting it ready, she’ll pull her sleeve up and have her twiggy little arm waiting for us! Of course it wasn’t always like this.  It took quite a few months for her to not scream every time we came near her with it.  I can’t say I blame her!  Personally, I couldn’t get myself to give it to her for about 2 months after her diagnosis.  Just couldn’t do it.  But now that she’s on it, she’s about 50th percentile for height and about 35th for weight.  Perfect.  (It should be mentioned that before her diagnosis, she was falling off the growth charts)  Now for the cortisol.  For anyone who doesn’t know, cortisol is a hormone that our body automatically produces more of when we’re stressed, injured, or sick.  It’s our “stress hormone”.  Our body is always producing it, which is why she gets it 3 times a day…breakfast, lunch, and dinner.  The critical part of her not producing it is when she gets stressed, injured, or sick.  Our bodies produce more of it naturally…hers does not.  So, if she’s sick with a stomach bug, and can’t keep anything down, it isn’t possible for us to give her a “stress dose” (which is 3X her normal amount of medicine).  It’s imperative that we make the right decision: do we give her solu-cortef (which is her emergency cortisol that is injected into the muscle with this HUGE needle) or do we take her to the ER.  Fortunately for us, we’ve never had to give her the solu-cortef shot.  We’ve always gone to the ER where they pump her full of fluids and extra cortef (the brand name) if need be.  We are supposed to give her the solu-cortef when she goes into adrenal crisis, basically when her organs start shutting down.  There are signs to look for…fortunately we have never gotten to that point.  That’s the scariest part: the fear of adrenal crisis.  It can happen quickly and without warning.  We carry around the solu-cortef everywhere we go.  We also carry a blood sugar monitor to test her blood sugar, as low blood sugar can be a sign of adrenal crisis.  Remember when I took her to the ER that first time?  Her blood sugar was 11.  It’s supposed to be anywhere from 80′s-110′s.  You could say she was in adrenal crisis then.  We just didn’t know it.

Did I mention that 80% of kids with ONH also have hormone deficiency?  80%. Are you wondering why Emma’s opthalmologists didn’t share that with us when she got diagnosed?  Us too.  That would’ve saved us a lot of stress, heartache, and turmoil, and all that for Emma as well.  That is why I feel it is so important to get the word out about ONH and SOD.  Here’s another little tidbit of information.  ONH is the leading cause of blindness in children.  Ponder that for a bit!

Finding out your child has special needs is not an easy pill to swallow.  For me, finding out Emma had developmental delays was an even harder pill to swallow.  When we were in the hospital was when we got her medical diagnosis: Septo Optic Dysplasia (from now on I’ll use the acronym SOD).  To us, that was all medical.  Those “special needs” were going to take getting used to, but we’d get there.  Like I said, it was a life sentence, not a death sentence.  However, it was when we had her tested in the public school system that we learned she had developmental delays.  What does that mean?  Well, with Emma, it included cognitive, emotional, social, physical (gross and especially fine motor skills).  She had delays pretty much across the board.  As a parent, that brings up a whole new set of concerns.  We already had concerns for her medical well-being, and now we were facing so many questions regarding her mental well-being.  It was like a dark cloud hanging over us.

When things like this have happened, and they’ve happened quite a few times for us, I’ve learned that it’s best to figure out how to deal with it.  Nothing can be accomplished by wondering “why me?” “why her” “why did this happen?”  It happened…let’s find a way to work with it.

The first thing I typically do is research.  I look up information online, and I look for support.  With Emma’s new diagnosis of SOD, I came across 2 groups.  The first was FOCUS Families.  One of the founders lives right here in Arizona and she’s a great lady!  Her adopted daughter has SOD.  I immediately connected with their online email group and I shared Emma’s story.  I received so many emails of support and encouragement.  To find a “family” out there that can understand what we were going through meant the world to me, especially since SOD is not all that common (estimated 1 in 300,000 kids).   The next group I found was the MAGIC Foundation.  They are based out of Chicago and MAGIC stands for Major Aspects of Growth In Children.  Their foundation deals with any condition related to growth.  Again, just another support system that helped me keep my chin up when it wasn’t easy to do.

My recommendation, when someone is dealt a blow, is to find support.  It’s good to research and find more about the condition, but hearing stories from people who “have been there” is invaluable.  If anyone needs help with finding support for a new diagnosis, or for anything, please leave me a comment and I will do my best!

When you’ve got a Dark Cloud Above, what do you do?