Your Path Always Has a Purpose

As a young girl, I loved to write and was apparently good at it.  Writing seemed to just come easily to me.  I would often times—and still do—find myself waking in the middle of the night to record or write down what I had just literally  “written” in my sleep.

When I was growing up, my parents often said I should be an attorney because I was just too good at arguing.  Debate fascinated me.

I was always known for standing up for myself and for things I didn’t agree with.  My teachers didn’t always appreciate my enthusiasm for banter.  I recall a particular Biology teacher, in fact.  I don’t believe I received a good conduct grade in his class. Haha

Entering college with a Business major seemed logical, yet it didn’t move me.  Despite my love for arguing, being an attorney didn’t intrigue me either.  I still yearned for the ability to express my creative side.  I seemed to have an interesting mix of the use of my left and right sides of my brain.  This led me to a BA in Mass Communications/Journalism declaration.

At the time, I thought I was supposed to use that degree towards a position as a TV Anchor.  Not what God had in mind…

I could argue.  I could write.  I was born to stand up and write to right the wrong.

While growing up and working on my skills, I had no idea what my path was preparing me for.  The wrongs I would be fighting against would be wrongs against my own child.

Fast forward a few years and I’m using my debate skills to gather information and stand up for my special-needs daughter.  I’m using my writing abilities to spread the word of what’s going on with her struggles in social settings, school, health…  I’m able to reach out to other parents in similar situations.  I’m able to help people feel like they’re not alone.

God gave me Sienna because I have the ability to write and the ability to fight. Sienna inspires me to speak out for other children.  My heart aches right now thinking about the children who don’t have a voice…I see it too often and these children deserve a fight.  Special children bring so much joy and perspective to life.  They’re incredible human beings—angels on Earth.  I accept it as a blessing to be able to use my tools to speak for them and fight for them.

Do I have all the resources and talents needed to take on the entire world of injustice?  No.  What I do have is the knowledge that my path had a purpose–that I’ve been given talents and it’s my duty to use them for the greater good.  It is my duty to focus on changing just a few lives so that others can focus on doing the same.  I’m honored that God would trust me enough to allow me to be Sienna’s mom and that together we can speak up for those who can’t do so for themselves.

If you’re trying to figure out your purpose in life right now or if you’re discouraged because of all the things you can’t do or tools you don’t have; I encourage you to take a look at what talents you HAVE been given.  Look at what you CAN do.

You have been given a talent of some kind that you can use to take part in changing the world.  Take part in making people happy.  Take part in easing someone’s journey through a difficult time.

Find a way to use what you CAN do to make a difference.  Don’t focus on perfection of the world.  Focus on progress. One person at a time.

It’s Baaaaaaaaaaaaack!

It’s Baaaaaaaaack!  School, that is.

Sienna’s pretty excited about school this year.  She’s going to be an 8th grader…” Top of the Totem Poll”…Top of the proverbial junior high food chain.

She wasn’t too pleased with the school clothes shopping.  I wasn’t either. 😦  This is the first year that our bags weren’t filled with matching and coordinating outfits.  I love seeing them in matching outfits.

At 5’4″, Sierra is easily in the Junior’s clothes, but unfortunately, Sienna hasn’t really grown much in a while.  She’s gained a bit of weight, so that’s nice, but she still has the waist of a 2-year-old.

The doctor said she was most likely done growing now, so we’re really focusing on forcing her to do as much on her own as possible.

We don’t really have to buy any new jeans or shoes.  We found a few basic tops that we can accessorize with some necklaces and cute earrings.  She really wanted some bangle bracelets like Sierra was getting and cute belts, but they were all too big.  So, I’m going to call on my jewelry making friends and scour the internet to see what I can find for her. 🙂  Too bad I didn’t take Home Ec. in school. Haha

We did find a fedora, though.  She can’t wear it to school, but it was just too sassy for me to pass up! (Size 12 months, btw hee hee)

Next up is hair cuts and a few more school supplies!

Little People Conference 2012

We were blessed enough to have the Little People Conference in our state this year.  So, it wasn’t too expensive for us to attend.

It was a wonderful week. Sienna made new friends and was delighted each time someone recognized her from the media coverage.  She was on Cloud 9.

We learned so much about the advances in the genetic testing that’s currently being done.  In just a short while, the geneticists have discovered another mutation that allowed them to identify another form of Primordial Dwarfism.  That is so exciting!

Sienna’s particular form of Primordial Dwarfism is still unidentified, but this discovery means we’re on the right path.

Many have asked me why this is a big deal.  Why does it matter if they identify a particular type of Dwarfism?  Each form of Dwarfism has its own medical concerns.  So, identifying someone’s particular variant of Dwarfism affords them the ability to seek the appropriate medical testing and take appropriate cautionary measures if needed.

When we returned home, Sienna almost immediately started bickering with her sister.  It took me an entire week to figure out why.

She had been in a “safe zone”; in a bubble per se.

At the conference, Sienna was able to feel judgement-free.  She was no longer the shortest in the room.  She wasn’t treated like a baby.  She wasn’t the only one.

When she came home; she was back in the real world.  Back to staring at people’s backsides.  Back to heavy doors and restaurants automatically offering her a kid’s menu.

So, we’ve gotten her to talk through her frustrations a bit better and have forced her to be even more independent than she already was.

She’s a resilient kid and astounds me with her joyous attitude always!

Tall Enough to Pay

At the movies recently, someone made a comment to us about how it must be nice to save money on admission since Sienna looks like a young kid.  Since it was someone we just met, I didn’t really stop to correct them.  I just gave a crooked, but polite smile and brought the small talk to an end so we could get on our way to the movie.

Some people might be okay with not paying the adult price for her ticket, but my husband and I collectively decided to always pay the appropriate price for Sienna despite how young she looks.  (Disclaimer: Most of the buffets we frequent charge us for a younger kid despite us telling them her age since they know she won’t eat as much.)

We feel that if we don’t pay the appropriate price that it’s teaching the kids that it’s okay to cheat someone out of money.  It may seem easy to just go with the flow and pay the cheaper price, but we try to show the kids that the right way is usually the harder way.  And that just because someone doesn’t know you owe them more money, doesn’t mean you should take advantage of that.Image

7 Things You May Not Know About a Twin of Someone Special-Needs

7 Things You May Not Know About the Twin of Someone with Special Needs

Most people know that Sierra and Sienna have been interviewed many, many times about them being such a unique pair of twins.  Recently Sierra was asked what question was most often asked of her when being interviewed.  She said the one that sticks out the most was “How much do you love your sister?”

It got me to thinking that it’s unfortunate that the question that sticks out to her is really about her sister and not about her.  Since most posts cover topics about Sienna, I thought I’d do one from Sierra’s perspective.

1. I’m still a kid.  I’m growing up faster than I have to.  I feel a natural need to care for and watch over my twin, so I’m growing up faster than most of my peers.  So, even though I act older most of the time, give me an opportunity to be a kid, make mistakes like a kid and dream like a kid.

2. I’m still my own person.  My twin and I like many of the same things, but we do like some different things and want to do different activities.  So ask about me sometimes, not me as the twin of someone special.

3. Please don’t make me choose between you or my sister.   Yes, my sister may be immature at times or do things you don’t understand, but please be gracious and patient.  I love my sister more than anything in the world and can’t tolerate her mistreatment.

4.  We’re individuals, but we’re also a packaged deal.  My twin and I understand that we have different friends and that I’ll be attending events with friends I don’t have in common with my twin.  However, if you know both of us well and you don’t invite me to something because you can’t “handle” inviting my twin, that’s going to show me your true colors and I will know you’re not really that great of a friend.

5.  I feel ignored some times.  My special-needs twin gets much attention because she’s cute and she requires additional attention for schooling and some daily activities.  I’m a great kid, too.  Please remember to see my accomplishments and make sure you say “hi” to me, too.

6.  I’m doing my best to find balance.   I’m doing my best to discover who I am as a person while being sensitive of and understanding how lost my twin is without me.

7.  I worry.  I know my life will eventually contain fairly normal situations such as dating, graduation, marriage…and I’m not sure what the future holds for my twin.  I worry about growing up and my twin feeling left behind.  Please know that I don’t care if you agree with decisions I might make in the interest of my twin on how my life is shaped.  I understand that having a twin with special needs requires some sacrifices.  I love my life and wouldn’t change it!

Being a twin is a unique bond that I’m blessed to have the opportunity to have.

Choir Field Trip!

The long awaited choir field trip to Fiesta Texas finally arrived.  Sienna had been to Fiesta Texas once before and remembered having a great time with the family, so she was ecstatic when she learned that was where they would be going after their final choir competition.

Sienna knew you had to have the proper behavior and proper grades in order to go, so she made sure she would make the cut.

She had the grades, the proper conduct marks, the heavily altered choir dress and she was ready for the field trip!!

We checked in at the school super early at 5:00 a.m. to catch the buses.

Sienna walked into the choir room and was greeted with “Hey, Sinny!” & “Sinny!” It was nice to see her greeted with such enthusiasm.

The seats on the bus were assigned, so everyone took their seats.  Sienna was a couple rows in front of my husband and me.  She looked super cute with her feet dangling off the seat.  She played on her tablet and engaged in conversation with those around her.

Once we arrived at the location for the choir competition, the kids quickly raced to the changing rooms to change into their concert attire.

Sienna was a bit shy in the changing room and chose to change in the corner.

One of the other girls sweetly offered to braid Sienna’s hair.  She did a wonderful job, too!  Sienna looked so pretty in her dress with her hair braided back.

They did a wonderful job during the concert.  They actually got such a good ranking that they won the overall award and took home a super big trophy!

After the competition, it was time for Fiesta Texas!!

The kids were instructed to get into groups of no less than 3 and check in a pre-determined times.

I was worried (and I think Sienna was worried, too) that Sienna would get “stuck hanging with her parents” the whole time rather than spending time with friends.

That wasn’t the case!  An amazing couple of girls gladly paired up with Sinny!  Bonus! The mom who was with them was fun to hang with, so it was great for us, too.

We grabbed some food first and then it was time to hit the rides!

This is where I thought it would get really tricky.  Sienna’s usually not tall enough to ride the regular rides and certainly doesn’t weigh enough to securely fit into most of the chairs.  I was afraid the other girls would get frustrated.

They didn’t!  I was so impressed with them!  They politely took turns doing rides suited for Sienna and games she could do and Sienna and I waited for them when they did rides she couldn’t’ do.

It was fantastic!

Those girls treated Sienna just like any other classmate.  Not once did they make her feel bad for not being able to do the big rides.  The major thing that impressed me was that they didn’t treat her like a baby and they weren’t patronizing!!

What amazing children!

I wish all children shared the same “blinders” as those girls!!

March of Dimes

From Sienna’s mom:  I know a thing or two about premature babies. Having twins early and being told that one of them had a 10% chance of living, I know how valuable the NICU is and how necessary it is to continue discovering ways to help mothers carry their babies to term.

I’ve joined up with some other amazing ladies to form a team to walk at the March of Dimes fundraising walk.

You can help us in our efforts by either joining our team if you’re local or donating towards our team goal.

Click here to view our team page.

Thank you in advance!