I feel like a have a few too many balls in the air right now.  Ever feel that way?  Perhaps the question is “ever NOT feel that way?”  We’re all busy, I know.  I often feel a little jumbled when I have too many things going on and then things slack.  And I don’t ever like giving less than 100% to any project.  That being said, I’m just taking a quick hiatus for a few weeks from Jumping Waves.  I will be back.  And when I do come back I’ll be able to share my awesome news.  But until then, I need to work with the balls in the air and get some more to come down.  Because frankly, I can hardly juggle two balls at once, let alone multiple!  Thanks for your understanding and keep popping in to see if I’ve shared!

Until then, don’t forget to check out my Etsy shop…up and running and ready to be shopped!

On Friday, this was my personal FB status update:

We had Emma’s parent/teacher conference today. To see and hear all that she is learning made us SO happy! It’s so nice to get confirmation that you’re doing the best thing for your child! And it shows with Emma. She’s such a happy little girl again. We are so blessed!

It got 32 likes and 7 comments. (read: we are loved!)  Here are some more important numbers from that Parent Teacher Conference:

• Emma knows 22 letters (names and sounds).  At the end of first grade in May, she knew 6 letters (names and sounds).
• She knows all of the lowercase letters except for “j”.  She didn’t practice lower-case letters last year (mostly due to our insistence that she not).
• Emma can count to 29 (missing 16 and 23).  At the end of first grade she could count to 16 on a good day.
• She can remain on task for 30 MINUTES.  It is in her IEP that she can only maintain concentration for 3-5 SECONDS. (that fact, right there, almost brings tears to my eyes)
• She is on the “chip system” at school.  She earns chips for performing positive behavior.  When the jar is full she gets to pick out a treat.  She didn’t have a system like that at her old school.
• She has 2 best friends in class.  She doesn’t get jealous of them.  She doesn’t act rude toward them or lash out when they perform a task better than her.  She hugs them daily and has wonderful relationships with them.  Last year she had 3 best friends but would occasionally act out when she saw them progressing in school.

We couldn’t be happier or more ecstatic about Emma’s progress.  She is proving to EVERYONE that she has the ability and the capability to learn and to love to learn again.  And to the director of special education at the district, I ask, “what do you have to say now?”

Don’t forget…only 3 more days left of the jewelry sale on my Etsy Shop!  My mom made all of the jewelry on here to help offset all of the educational costs that Brett and I have had to endure.  She’s done a really nice job.  Here are some of my favorite pieces.

Jumping Waves Double Strand Bracelet

Jumping Waves 3 Piece Set

Beaded Double Strand Memory Wire Bracelet

Beaded Triple Strand Bracelet

These pieces are perfect gifts for teachers, friends, family, etc.  Get a head start on your holiday shopping and enter BLING15 in the check out at my shop!

Something that’s a trend with Emma (and a lot of kids with her condition) (and a lot of kids, in general) is her knack  for perseverating.  It’s frustrating!  The girl won’t give up.  Some things Emma is perseverating on right now:

• Pumpkins that are growing in our “garden”. (Are they growing? Can we pick them?Will they become jack-o-lanterns? Can we carve them?)
• The plate and screws in her hip.  This is one topic I don’t mind her constant questions about.  When it comes to her medical issues, we are very honest with her- in an age appropriate way, of course.  But still.
• Her costume. (Can I wear it? Can I wear it to school? Does it fit?  Do I need shoes? Can I grow Rapunzel hair?)
• Halloween. (Is it Halloween yet? Are our decorations up? Can I have some candy corn? Where’s my trick-or-treating bag? Can I get my bag? Can I see my bag?)
• Daddy. (Sweet and endearing, yes.  But when you’re mom on the receiving end of “Is Daddy on his way? Is Daddy coming home? Can we call Daddy? Daddy’s going to love…  Adorable, but for the mom who listens to it from 3:00-6:00 or later, whenever Daddy gets home.  Hello?  Am I chopped liver?)

~~AND THE BIGGEST ONE…

• Disneyland. (Is Disneyland over there? (usually pointing west) When can we go to Disneyland? What will I wear to Disneyland?  Can I get cotton candy? Can we go now? Will we stay in a hotel room? Can we go faster? (that question relating to the rides and the actual travel west) Who is going to Disneyland with us?  Not Daddy? Oh, I’ll miss Daddy (see previous perseveration) Can we go on Thunder Mountain? (which sounds like Funder Mountain, which is kinda cute) The questions keep coming.)

On the tea cups!

Now this topic, it’s my fault.  If you know me, you know I have an absolute affinity for Disneyland and anything Disney related. And I got so excited thinking about our upcoming trip that I let the cat out of the bag.  And I will pay for that.  For 29 more days until we’re actually driving to Disneyland.  And if you count the car ride there and the additional night stay that we have to endure before we actually go into the park, then 30 days.  I am the adult.  I should’ve contained my excitement.  I can hold it in better than she can.  Shame on me.  I really shot myself in the foot this time.

Please tell me I’m not the only one who’s done this!

Not that I’m going to be asking a question daily, but I do want to know what your answer would be.

If you could write articles or posts about any topic(s) that interested you, what would you write about?

Please share! I think I might write about technology that would be helpful and easy to busy moms. I think.

On a similar note, RIP Steve Jobs.  I think President Obama summed him up nicely.  ”Steve was among the greatest of American innovators – brave enough to think differently, bold enough to believe he could change the world, and talented enough to do it.”

I have found a new blog that I like.  It’s inspirational. Relevant. Thought-provoking.  Please check out Being Exceptional in an Ordinary World.  I think you will enjoy the reading, some of the fun pictures and captions, and I hope it gives you a little food for thought on any given day.  It definitely has for me.  Today I read this on Dennisse’s blog, and I really enjoyed the different perspective it showed.

A while back, at the entrance of a gym, there was a picture of a very thin and beautiful woman. The caption was “This summer, do you want to be a mermaid or a whale?”

The story goes, a woman (of clothing size unknown) answered the following way:

“Dear people, whales are always surrounded by friends (dolphins, seals, curious humans), they are sexually active and raise their children with great tenderness.
They entertain like crazy with dolphins and eat lots of prawns. They swim all day and travel to fantastic places like Patagonia, the Barents Sea or the coral reefs of Polynesia.
They sing incredibly well and sometimes even are on cds. They are impressive and dearly loved animals, which everyone defend and admires.

Mermaids do not exist.

But if they existed, they would line up to see a psychologist because of a problem of split personality: woman or fish?
They would have no sex life and could not bear children.
Yes, they would be lovely, but lonely and sad.
And, who wants a girl that smells like fish by his side?

Without a doubt, I’d rather be a whale.

At a time when the media tells us that only thin is beautiful, I prefer to eat ice cream with my kids, to have dinner with my husband, to eat and drink and have fun with my friends.

We women, we gain weight because we accumulate so much wisdom and knowledge that there isn’t enough space in our heads, and it spreads all over our bodies.
We are not fat, we are greatly cultivated.
Every time I see my curves in the mirror, I tell myself: “How amazing am I?”

Picture I took this summer of a statue in the Tuilleries Gardens, Paris, France

In a country (culture, population, what have you) that is so focused on appearances and being thin and skinny and youthful and wrinkle-free etc., etc., let’s focus on us.  Real women with real curves.  For people who know me, I have gained too much weight in the last 2 years.  It’s true and I don’t deny it.  And I don’t deny that I am an emotional eater.  I know it’s not healthy and currently I’m working to correct it.  HOWEVER, I need to be done feeling self-conscious about how I look.  I am who I am because of the journey I am on.  It’s a stressful journey right now.  And it becomes evident that this is how I deal with stress.   It could be worse, I tell myself.  I could be depressed, addicted to alcohol or drugs.  I could be negligent with my kids or my husband.  I’m not any of that.  I enjoy food and I do enjoy a nice glass of wine after a long day.  After reading this, I don’t want to be a mermaid!  Though I’ll be honest, while my curves will never go away, I would like to be a skinnier whale.

Who’s with me on this?

Side note: 15% off of all of our jewelry on my Etsy site!  Perfect timing to beat the holiday rush.  Check our our bling here and enter BLING15 to receive your discount!

Emma and I were driving to pick up Mason before gymnastics last week.  While driving she had a lot of questions about where Mason went to school.  Amidst this discussion I asked her if she wanted to go to Mason’s school.  (I feel like I should do this every once in awhile to make sure that I’m doing the right thing by her.  It’s like trying celery every once in awhile for me…do I still hate it?  Yep!  So, upon talking about Mason’s school and asking if she wanted to go there this was her reply.

No, Mom.  I go to a real school.

And there you have it, friends.  Does anyone need anymore convincing?  Certainly not me! She’s definitely a smart cookie, and no one will tell us otherwise.

On a side note, please check out my newest cards in the Paris Collection!  I am in love.  And I’m also working on a new product that will be perfect for the upcoming holiday season!

Click on the picture above to go straight to my Etsy store!

Have you started shopping for the holidays yet? Not me!

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!