We were supposed to go to Flagstaff a few weeks ago…remember this post?  That storm was labeled “The Storm Of The Century” in Flagstaff (capital letters added for effect).  I mean, they did shut down I-17 for like 3 days.  The kids were so bummed out.  We had a good weekend anyway.

Fast forward to this weekend.  We’re trying again!  And we should have no difficulties this time.  Roads are clear, and in fact, I’m wondering if there will be enough snow so we can sled?  I will keep you posted…and post pictures, of course.  We’ll be bunking with my cousins this weekend, too, which should be a lot of fun.

I am nervous, though.  I will admit it.  My parents got rid of their satellite TV to help trim down costs.  The sad part is that they have this beautiful new (47 inch?) flat screen that they can only use for movies.  I think under normal circumstances I’d be okay.  I don’t want you thinking we sit in front of the TV all day every day, but we do enjoy TV.  Like I was saying, normally it wouldn’t be too bad except I’m missing some good Olympic TV.  Women’s figure skating is tonight.  Apollo Anton Ohno is on Saturday.  Hockey is on Sunday (I think).  I don’t want to miss all that stuff…we are loving the Olympics right now.

And I gently reminded Brett that he wasn’t going to be able to head to a sports bar with Cousin to partake in the Olympic festivities without me.

How long could you go without TV?

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.

On Sunday we had Emma’s birthday party.  We decided to keep it pretty low-key since she gets overwhelmed pretty easily.  This year, we invited two friends from school, one friend outside of school, and her 8 year old cousin for a party.  Unfortunately, one friend ended up in the ER with a seizure (I’m happy to report she’s doing very well came home the same day) and another friend had a stomach bug.  So it  was a very small tea party, but just as nice.

First we all met at Build-A-Bear.  I gave the girls giftcards so they could build their own Teddy Bear.  Of course I let them pick out whatever outfits they wanted, but I told them that the Teddy Bears would be attending our Tea Party.

Yessalyn, Emma, and Cheryl waiting for Build A Bear to open!

We've picked our animals...now to stuff!

After Build-A-Bear, we went to my mother-in-law’s house for Tea.  She is one lucky lady who has an actual Tea Room separate from the house.  And it is so cutely decorated.  This is where we had tea with our Teddy Bears, complete with finger sandwiches, fruit, tea and juice, and cupcakes for dessert.  It was so adorable….check it out!

Emma sipping her "tea" (warmed apple juice)

Yessalyn loved the heart-shaped PB&J's

Cheryl borrowed her mom's hat that she wore at the Kentucky Derby...and I didn't get a picture!!

As you can see, the tea was quite lovely.  We had such a delightful time.  And right now I’m kicking myself because I didn’t get a picture of Emma and Grandma Janice, nor one with me and Emma.  I really need to get better about pictures.  This was probably the nicest party we had…quiet, small, perfect for little ladies!

What’s the best birthday party you’ve thrown (for adult or kid alike!)??

I almost forgot to show you the adorable cake we got for the Family party later that day.  The same gal who made the cupcakes made this adorable cake.

You can find Sugarlips Cakery here and visit their blog here. Yum!

I don’t ever think I’ve used the word “epiphany” before.  Sounds very deep.  Maybe I should make sure it means what I think it means.

It does.

So anyway, I had this epiphany that there just may be different kinds of bloggers out there.  I don’t mean bloggers of different topics (dare I say “duh”).  I mean their habits in which they publish their posts.  This is what I am not…a blogger who sits down every evening after the kids go down to post her daily blog.  Some days I’m tired.  Some days I want to watch TV.  And some days I’ve had too much wine…I shudder to think what I might type about.  I have found that once I sit down and have a chunk of time to myself, then I am more likely to whip out 3-5 posts at a time.  And I am loving the fact that I can schedule these posts to come on different days.  It definitely takes the pressure off of me to get one done every night.  My creative juices don’t flow that way.  They just don’t.

Speaking of creative juices (did this just turn into a stream of consciousness??), I have been thinking about getting back into scrapbooking.  Did I ever “get out” of it?  It’s been awhile since I’ve scrapped…probably over a year (try to silence the gasps, please).  And I have so much to catch up on.  It’s actually overwhelming.  And it’s kind of messy.  I clear off the dining room table, use the chair for all of my supplies, and I get to work.  Of course when this happens, I’m not ready to pack it all up at the end of the day.  So really, I need to make sure I can keep it out for a week or two.  Which means I shouldn’t be planning any BBQ’s or dinner parties over here.  Which is fine.  But we do like to entertain.  Hmmm, I’ll let you know what I decide.

So there you have it.  Blogging epiphany…the truth comes out!  This post was brought to you last week. You may now return to your regularly pre-scheduled blog.  Did that make sense?  I didn’t think so.  I will stop. Now.

My friend, Amy, at The Adventures of JAMC, passed on this adorable award, for which I’m thankful!!  How did she know that Gerber daisies are one of my favorites?!?  They are so bright and cheerful, don’t you think?  Like Arizona Mamma, I’m going to have to respectfully break the “rules” on receiving this award.  There are so many wonderful blogs out there, and I have found that Blog Frog is a wonderful venue for getting to know some wonderful women out there.  I hope that if you like my blog (or even if you don’t!), go check out the stories of other women out there who choose to share their lives with others! And, like Arizona Mamma (sorry, I’m stealing your ideas because we’re totally on the same page here), I think that if you would like this award, I would love to pass it on to you!!  I certainly agree that you deserve it!

The family has been watching the Olympics every night and the kids are really getting into it.  We took out the easel and on the chalkboard side we wrote down everyone’s favorite sport.  Emma’s favorites are ice skating and skiing.  Mason’s favorites are skiing and hockey.  I was trying to think of “activities” to do as a family to incorporate the Olympics…perhaps keeping score on the medal counts for U.S.A. and Canada?  With a 3 year old and a (newly) 6 year old, I need to keep the activities pretty elementary.  Also, the kids get to watch the Olympics for at most an hour each night.  Their bedtime is pretty early.  And with the Olympics running 4 hours a night, they really don’t get to watch too much.  I’m looking for any ideas on activities we can do as a family.

Do you have any Olympic activities you are doing with your kids?  Do share!

I’m also discussing this in my Blog Frog community…hop on over to throw your two cents in!

My good friend suggested that I write about what it’s like to travel with a special needs child.  I thought that was a good idea…it’s not like traveling with a typical child, that’s for sure!  But, for us, it’s not all that bad, either.  It just takes more planning and organization.  And fortunately for me, that’s one of my strong suits.  I will say this…it gets easier and easier the older they get.  And that’s not necessarily due to her special needs.  That’s mostly due to the fact we don’t have to lug around so much crap!  Bye bye to pack-n-plays, extra diapers, lots of toys, bottles, baby food, etc.  I am so happy those days are behind us!  (can you tell we’ll be sticking with or 2 kids and not adding anymore to our brood?)

However, in place of some of that “crap”, is my son’s nebulizer, the steroids that go into it, his inhaler, nose spray, and everything else allergy/asthma related.  And that’s just for Mason.  With Emma, it’s a careful organization of medication, and making sure not only that we have enough, but that we have extra in case our trip becomes extended.  Since she can’t swallow pills yet, we also take enough oral syringes, Sunny Delight (the sweetest juice to mask the bitter pills), and applesauce for those pills whose contents don’t dissolve (called “sprinkles”, FYI).  And for her shot, we make sure there is enough “juice” for the duration…otherwise we pack another vial.  Don’t forget to add extra needles in case one is defective, and extra alcohol swabs as well.  Oh, and last but not least, her patch.  For without that, our days become really long with a child who is bouncing off the walls and everything in between the walls!

It sounds daunting, I’m sure.  And it was at first.  But like I said, it just takes a little extra planning and organization. A wonderful pill organizer that I use is something similar to the picture below.

So if we go on a short getaway for the weekend, I don’t have to bring the appropriate days. (I found that organizer here.  For everything else, I use labeled gallon-size Ziplock bags.

The other consideration that is always in the back of my mind is the bathroom.  My daughter has a big ginormous fear of bathrooms.  It started when she went potty at an airport that had an automatic toilet.  Well, it flushed on her, of course, and she’s been leery of every public bathroom since, even the ones with levers.  For those situations, when she’s going to have to use a public restroom, I use positive reinforcement or bribery.  I’m not above bribery.  For example, when she and I went to Disneyland in October, I scoured the Internet for tips on potties.  Wouldn’t you know there’s a whole website dedicated to the toilets at Disneyland?  I kid you not!  You can visit it here.  That website saved my sanity!  (an FYI for anyone in my situation traveling to D-Land, in the baby center they have “small” potties perfect for those tiny tushes.  The “cast members” tried telling me that she was too big for them, but I gently let them know she has special needs and wouldn’t use the other ones.  Perhaps next time she’ll be ready for the regular restrooms that are smaller in size with lever flushes (like the ones by the AAA kiosk at City Hall and the ones by Big Thunder BBQ).  Is this sad that I know all this?  Perhaps.  But you know what?  It makes my life and her life much easier.  And she knows that she can’t go on her favorite ride,  Thunder Mountain, until we take a trip to the potty.  Worked for me every time!

Okay, that was a total side track.  That last paragraph wasn’t supposed to be about Disneyland.  And now I just want to go there!  Okay…potties.  Obviously every place we go to won’t have a whole website dedicated to the potties of that place.  So we make sure she potties before we leave, and if possible, while we’re out.  In the car, however, it’s another story.  We set a portable potty seat in a hidden place and she does her business!!  The seat she uses looks similar to this one below.

Convenient?  Not always.  Does it work?  All the time.  And again, it makes life easier for her and for us.  And if we pack really efficiently, we put it in the back of the car for even more privacy.  The baggie comes out, gets tossed, seat gets wiped down, and it comes with a neat little carrying case!  Perfect for the situation.  However, I’m not sure what we’ll do once she outgrows it.  That time is definitely coming!

As far as the rest of the trip goes, I always create a binder for our trip.  It contains all the information on our flights, hotel/s, car rental, and always contains information on the nearest children’s hospital.  That last part is SO important to us, and really I think it would benefit every family to have that information when going on a trip.  We’ve been to several Children’s Hospitals around the country now.  I’m so happy I have had the necessary information with me!

If I forgot anything about travel, or if you have questions please let me know.  I would love to be able to help people out with simplifying their travels!

What travel tips do you have to share?

Today my sweet little girl, Emma, turns 6.  It’s funny, ever year I go throughout the day thinking back…”what was I doing x years ago at this time” (in this case, 6 years).  I replay the day of her birth the whole day long.  Actually, the day starts the night before.  See, I was at 41 weeks gestation.  It was obvious Emma was comfy and cozy and NOT ready to come out!  Poor thing didn’t know that she didn’t have a choice!  So, at exactly 12:01 am on February 17th (I’m not kidding), the hospital called me to let me know there was a bed available and they were ready to induce!  Was I ready?  Poor thing…I didn’t have a choice!  So, we got there around 1:30 (I wanted to shower first) and they hooked me up by around 2:30.  I was good to go.  And go.  And go. And go.  It. Took. Forever.  Long story short (because the labor was long), after not dilating hardly at all, and finally her heart beating in distress, they did an emergency C-Section at 7:29p.m on that Tuesday evening.  And there she was!  She was perfect…so tiny and cute.  She was 6 pounds, 11 ounces, blue eyes, and no hair whatsoever.

Happy Birthday Emma!

To say that raising her has been easy would be stretching the truth.  Many days have been anything but easy, truth be told.  But would I take any of it back?  Absolutely not.  She has taught me so much about life and its lessons, and it would be a shame if I hadn’t learned anything from her.  God has a funny way of improving on our habits.  I’m not a patient person, by nature.  But raising a child with special needs has forced down my throat a huge dose of patience!  I’ve learned that I’m much stronger than I ever could have imagined.  And that my marriage to Brett is pretty strong.  It has to be.  I often say that being put in situations like these will make you or break you.

My little girl…not so little anymore!!  Thanks to growth hormone, she is in the 50th percentile for height and about the 30th for weight.  She is long and lean! (and man, do I wish I had her body!)

She LOVES to read.  It’s her passion.  I wish I could say she really knew how to read, but she doesn’t.  However, it only takes one or two readings of a book before she can “read” it back to you.  Such a smart little girl.  She adores ballet right now.  She thinks she’s the coolest little girl to be able to go to ballet class.  She can’t get enough of school.  In fact, during the Christmas break, a few tears were shed because she missed it so much.  What will I do when summer comes??  She and Mason get along really well, for the most part.  Sure, they have their sibling squabbles, but who doesn’t?  They’re a good team.  She gets sad when other people get sad.  She wants to please others, too.  But she always stays true to herself…even when that means she doesn’t want to finish her dinner.  And there are nights she doesn’t.  The girl knows what she wants!  She loves music.  She gets that from me!  She loves to sing and dance, and watching musicals is her favorite.  In fact, her Daddy took her to see Mary Poppins (the Broadway musical) last week and she sat through every minute…and it was 2 hours and 45 minutes long!  She will watch, sing, and dance through the entire Sound Of Music movie.  The girl can’t get enough of music!

My piano player!

On this day, I will remember the gift that God gave us.  And be very thankful that He chose us to raise this little girl.  She’s truly a delight and I am so blessed!

I went out with some girlfriends last night for dinner.  I ♥ GNO.  Anyway, usually Brett will take the kids to this Chicago hot dog place around the corner.  They love doing that with their daddy.  They didn’t get to this time, though.  So I had to fix dinner in a pinch and figure something healthy to give them.  I was tired of the regular chicken nuggets (I know, sounds bad, but the ingredients aren’t that bad in the ones I have) and mac and cheese (no excuse- that’s bad).  What do you do in a pinch if you need to get them dinner quickly?

Their dinner last night.  But they did get blueberries, full of antioxidants!!

You can also hop over to my Blog Frog community here to partake in the conversation!

I am desperate for some new ideas for these guys!  And fortunately, my kids aren’t that picky!!

Saturday was the day Brett and I headed north to Huntington Beach.  It’s such a beautiful drive up the 5….love it!  However, it rained on us the whole time.  That didn’t do well for my nerves!  It stopped once we got there, and we were able to check into the hotel, meet up with my parents (did I tell you my mom ran this half-marathon with me?), and head to the running expo to pick up our bib and race packet. I also got some fun stuff for myself for the race!

Fast-forward to race day.  What a  BEAUTIFUL day!  It couldn’t have been a prettier morning.  There wasn’t a cloud in the sky.  There was hardly a breeze blowing.

I will include my iPhone photos…I think they turned out great!

At the Start Line!!

Taking it in before the race starts

Going uphill...see Arrowhead in the background with the snow?

Around mile 10...the view was amazing!

I’m not sure if I’m ready to do another one quite yet.  It was really hard…especially the last 3 miles.  And I underestimated how steep 6% really is, and that I ran uphill for 1 1/2 miles!

I’m still really sore, and I have 2 toenails that I will be losing.  I wonder if I’ll get a discount on my pedicures?!?