Friday, August 31, 2012

The Weight of the World

A normal day for me is a great
one. I'm usually a look at the glass and convince myself it's even more then half full type of gal. I believe in smiling through pain and always finding the silver lining. And I can't help but balance a negative with a positive. This is no big doing on my part. It's just the way the Lord made me.

The title of this blog is Bloom Where You're Planted. That has always been my intention but it was more profound after my girls were born and I got divorced. I am built to smile and bloom despite the life I have as a single mom with twin girls and one who is special needs. I struggle everyday to make ends meet, provide a good balance of love, attention and discipline, organize, supervise and attend all of Riley's endless therapies and doctor visits, serve in my calling at church over the young women, do all that my Heavenly Father asks, maintain family and friend relationships, keep up on new research about therapies, treatments, medical equipment, help Riley with all the tasks for daily living that come natural to most almost 4 year olds and just plain survive. With all of this going on I occasionally feel I have alot of balls I'm juggling at once. It's a very delicate routine I'm doing to keep them all in the air, but one that I undoubtedly do happily. There's not one ball that I don't love having to juggle. But...

Last night the balls all came crashing down. Hard.

I read an article last night about one of the two of Riley's most serious diagnosis, Polymicrogyria. I have always known that this is one of the 4 diagnosis that come with a shortened life expectancy, but no one ever gives ages. Last night some researcher gave it to me.


A life expectancy of EIGHT years old.

I thought my heart would fall out of my chest. And today it's been dangling by threads. My brain is bouncing around in my skull and my stomach is lodged somewhere in my feet. EIGHT?!?! How can they say that?! My baby is half way there and she hasn't even begun to accomplish half the things her incredible life is meant for. She is just beginning to fulfill her mission on earth, and touch all the lives that she is meant to!

I want to so badly laugh in the face of the eight! I keep reminding myself that Riley has never been a statistic! She is a miracle and has surpassed all expectations set for her. But instead I'm crying. And not a pretty cry. That deep down painful ugly cry. Because I don't just love my baby and love kissing her beautiful face everyday. I adore it, cherish it and can not fathom living my life without it.

I am hoping sometime between tonight and tomorrow I will be able to pick up all my balls to begin juggling again and that very, very soon I will laugh at that stupid eight! Hopefully tomorrow I will again bloom where I'm planted. But tonight I pray and I definitely cry.

Maybe my tears can be the fertilizer my garden has needed all along.

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Wednesday, August 29, 2012

Imagine That

Miss Keagan is all about pretend play lately. Our game that we play almost everyday is Grocery Store. She sits at her play room table with her cash register and I come in to shop. Our conversations usually go like this...

K: good morning! How are you?
Mom: great! How are you?
K: I'm okay. How are your kids?
Mom: they are good! Especially my Keagan! How about yours?
K: uggg. Not very good! They have been naughty lately!

She cracks me up!! Once I'm shopping she will say things like "ohhh that is very expensive!" and "you might really like this! You can have it!" Such a big girl.

She is also totting around 3 babies these days. She is often telling Riley and I to be quiet because her babies are sleeping. You don't have to ask me twice! The babies names are Toby (from the show Good Luck Charlie), Riley and my personal favorite, Elephant!

I'm sure this little imagination is going to love Halloween being right around the corner. Every year I take finding their costumes very seriously! It's just so much fun! Well their owl costumes arrived yesterday and both girls love them! Riley cried when I had to take off her hat to go to bed! And she wanted it back on first thing this morning!

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Monday, August 27, 2012

Riley's 1st Day!

Today Was Riley's first day of Pre School! She was so excited because she loved school last year. But this year she is zoned to a new school and there are lots of new faces to get to know. There are 5 other darling little kids in her class. All with their own disabilities. Their teacher is Miss B for Benanti and their awesome aide is Mrs Kramer. They have such a cute little colorful room and alot of other great support staff. I'm really excited about our year at Brill!

Keagan and Nana came to drop Riley off with me. On the way there Keagan was whispering to Riley "be a good girl!" and "have a good day!" So stinkin cute! When we get there with a ton of supplies the supper nice principal, Dana Hernandez invited us all into the classroom to get Riley comfortable. They were all so sweet to Keagan and I felt good about leaving my Riley there. Once she realized we were leaving she began to cry. Just breaks my heart!

But just like what I knew would happen, she stopped crying within one minute and had a fabulous day! When I called her teacher once to check on her, they were playing the guitar and singing. I'm sure Riley was in heaven!

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Sunday, August 26, 2012

Last Day of Summer

Tomorrow is the 1st day of school for Miss Riley! Miss Keagan starts next week. We had Riley's meet the teacher last Thursday and it went so great! I love her teachers and within minutes they were down on the floor with her making her laugh! It's really going to be a great year!

My last summer weekend was spent in pain and on some serious drugs. I fainted because of a bursting ovarian cyst. Good times! This sure has been one interesting summer.

These two have been peas in a pod all summer! Keags is obsessed with Kellie! And I think Kellie is a better mom then me!

Miss Riley's fashion sense has kicked into high gear lately. She is very particular and very demanding about what she wants to wear. Don't worry this panties over the pants look didn't leave the house.

My baby and her baby...

She's so sweet and innocent. When she's sleeping.
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Wednesday, August 22, 2012

We Heart Grandparents!

Today makes it 5 years since my dads passing. That's 5 long and hard years of missing him terribly every. single. day.

One of the hardest things is knowing what an amazing Grandpa he was and how much my girls would adore having him here. I have no doubt the feeling would be mutual.

Tough days like today help remind me how thankful I am to have all those that love and support us here. This week our three Grandmas have been amazing!

Nana is great at working around Riley's crazy schedule and keeping Keagan when Riley has therapy or doctors appointments. That is when Keagan doesnt call Aunt Sa and beg to come over there to be with Kellie. This week while she had her, Nana taught Keagan the art of organized grocery shopping. Like many of the Ginn women before her, Keagan went to the store with her sectioned list in her purse. So cute!

On Tuesday night Gama Linda watched the girls while I attended Relief Society Enrichment. Riley was giggling all day in anticipation. It was probably the best two hours of their week! And I'm sure they got more then one kiss and hug along with their tea party!

And a great package came in the mail from Grandma Debbie. It had press on nails in it! The girls were both immediately thrilled and wanted them on. I've never seen such tiny hot pink zebra nails. Let alone on my tiny girls hands! They made Keagan saunter around even more dramaticly then usual. And Riley cried when I had to take them off when she went na night.

I wish my dad was here to be the incredible Grandpa he is to my girls. I wish he could teach them and love them like I know only he could. But he's needed in Heaven. So I'm so grateful the Lord left so many others to love a cherish my sweet girls. Cause there's nothing like the love of a grandparent.

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Monday, August 20, 2012

One Big Heart

When Riley was 3 months old she was diagnosed with Dialated Cardiomyopathy. My little girl has an enlarged heart. I can still see the Texas Children's ER doctor's face when she said "her heart is so big we can't see her lungs." Since that horrible night I have looked at many, many ECHOs of that big heart.

From the long list, Its probably the diagnosis that describes her best. Because her personality is ALL heart. Her heart, and the emotions that flow from it are all enlarged. Just like her anatomical one. She laughs harder, smiles bigger and loves deeper. It's a real gift and a blessing to all of us who are lucky enough to laugh along with her and love her back!

But she doesn't just smile and laugh bigger. Where as smiling is something she does almost all day, she also can be very sensitive and sympathetic. When she sees sad things on TV or particularly when she hears sad music, my sweet girl pops out that lower lip and often bursts into tears.

It's horrible to actually admit but we all love this darling pouty face so much that we have been known to try and get it to make an appearance occasionally. Recently she really showed her sensitive side at a Speech Therapy appointment with Miss Christina. Apparently the dramatic music on the princess iPad game was overwhelming.

Riley's enlarged heart has caused some terrifying times in her short life. That condition has resulted in too many hospital stays, doctor visits, tests and medications. But that big heart makes her who she is. It gives her a rare capacity to feel her emotions in a spectacular way. A way that is admirable and wonderful to get to watch each day.

The number one question I get about my smiley Riley is "is she always so happy?" And my answer is always a resounding "yes!" And it's all because my Riley has one big heart!

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Thursday, August 16, 2012

Big Win

Me + SIX kids + CiCis Pizza and bowling.

It was fun.

I must be crazy!

Keagan was seriously intense about the game. And it paid off because she beat everyone! Had several spares and even broke a hundred! Compared to my bowling skills, that is seriously impressive!

I guess that level of success is exhausting!

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A Whirl of a Summer

This is what our summer has looked like. As it comes to a close in a little over a week, I'm getting alot of "how was your summer?" It was pretty much like this picture of a flying Keagan. A whirl. We didn't go on vacation or do anything particularly exciting. But summer 2012 was a good one. A reminder girls are getting big, they love to laugh and be loud, theres nothing like a cousin, that I adore being with them but that all of us do love when they are in school. So we have been busy getting ready for the back to school days!

Riley got new "boots" and "gloves". Miss Keagan was happy to help fit them. But the appointment reminded me why I normally get a babysitter for Riley's doctor appointments. After an hour in a confined room with the three of us, disaster strikes. As I turned around to help Keagan, Riley fell off the stool onto her face! Yeah I'm a good mom! The small egg above Riley's eye is total proof!

Keagan finally got her haircut! Something I've been working on all summer long! I've taken her to the salon with Kellie and she wouldn't even sit in the chair. Sa took her to the Sweet and Sassy salon and I got a text from her saying "your Asian had a full on meltdown." So we had to resort to Sa and I cutting her hair at home. It makes her look like such a big girl!

Our house turned 22 years old. You better believe we had a birthday party! Some days it's a cool thing I have brought my babies to live in my parents home. Other days its not the best. But everyday I am SO thankful for these walls and for the home both my parents have provided.

Now I'm ready for school, more structured days and definitely cooler weather! Back to school here we come!

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Sunday, August 12, 2012

Cuddles and Chaos Nights

Tonight I was so frustrated that Keagan wasn't falling asleep. She didn't have a nap after church today so I thought she would be out fast. To my barking threats and sighs of frustration, she just responded with more giggles and summer saults in her bed. Right when my firm and irritated voice was going to turn into a near yell, my sweet girl said "mommy I want to cuddle with you." Sweetest. Thing. Ever! We had such a great 15 minutes after that request that I just might have missed out on.

The score on the sweetness scale tonight was similar to last night. I cuddled with both my babies and got lots of hugs and giggkes from Miss Riley. And Keagan hugged me several times while giving her amazing I love yous. Always a character, she then went to sleep with her sunglasses on. Those night lights can be pretty bright!

I have fully earned the last two nights! I worked hard for those parenting pay off moments! Because Thursday and Friday nights could not have been more opposite then these heartwarming ones!

Thursday night I packed up and took Riley to a sleep center for a sleep study and an 8 hour EEG. I was prepared for it to be a really rough night as Riley likes things to be exactly the same each night for her to go to bed. I planned on it being a difficult situation and not getting much sleep. I wasn't fully prepared for how horrific the night was.

We arrived at 8:30 to a very nice nurse and a comfortable room. Riley was fine with all the measuring and the probes on her legs and abdomen. But as soon as we got to the ones on her face and head...all hell broke lose. I ended up trying to hold my baby as still as possible and trying to distract her anyway I could while she kicked, bucked, squirmed, screamed and cried for over an hour!! It was horrific! Not only was it physically hard for the nurse to get the probes on but Riley was sweating so much from putting up such a fight that they kept slipping off. It was a nightmare! After an hour we had only gotten 12 of the 32 probes on and then Riley threw up because she was so upset. Thats when I had to pull the plug. I just couldn't put my baby through anymore! Or myself frankly. I immediately pulled everything off, somewhat cleaned her up and we were on the road home at 11:30 at night within minutes. Riley's calm snore in the backseat was my reassurance I had done the right thing. Her pulmonologist and neurologist will be disappointed they aren't getting the studies they want. But frankly I don't care! There is a line that a momma has to draw. And that was my line.

On Friday while both Riley and I were struggling to recover from such a traumatic night, it was clear that Miss Keagan was sleep deprived and over stimulated after a slumber party at Sa's house Thursday and also the two previous nights here with her cousins. As the night was coming to an end with her cousins here, I knew getting her to sleep was going to be a task. It ended up sparking a meltdown of epic proportions that this house has never seen. And probably not many houses. Again I was faced with over an hour of my baby kicking, screaming and crying. Just for very different reasons then her sister the night before. After she fell asleep and the agony stopped, I was left in a heap of guilt and tears. Not fun.

Thank heavens I've had two remarkably enjoyable nights to balance out the others. In fact the greats of motherhood don't just overshadow the not so greats and the downright awful, they wash them away. To recover from Thursday and Friday nights I pretty much needed a power wash. To my surprise the cuddles, smiles, and I love yous of the last two nights did just that! Thank heavens! Now hopefully we can keep this going!

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Monday, August 6, 2012

Celebrate the Little Things!

"Hi" is a word I hear and say many, many times a day. The greeting can be mundane and repetitive. Simple at its best. Until today!

As I went to get Riley out of her car seat at Target, my baby responded to my "hi" with one of her own!


My heart skipped a beat while I second guessed what I had just heard. I couldn't stop my eyes from filling with tears because of the simple miracle that had just occurred! My amazingly persistent almost 4 year old had spoken a word for only the second time in her entire life! The first time being the same word more than a year and a half ago. I was thrilled beyond words!

People ask me all the time how I stay so positive while facing some serious challenges as a single mom of one typical and one special needs daughter. The answer is simple. I count my many blessings and celebrate the little things! Hearing my sweet baby say "hi" may be a little thing from the worlds perspective. But to me it is monumental and it is worthy of a huge celebration! This is a big new step with hopefully many words to follow!

Of course the rest of the day I tried all of my tricks to get a repeat of the miracle. But to no avail. I know we just might all have to work hard for the 3rd, 4th and 5th word too. But eventually I pray those words will come easy. It is my greatest wish for my sweet girl!

There was other points to the day of course. Since Keagan slept at SA's house last night, Riley and I had a quiet morning. We were cuddling while watching Barney when Baby Bops sadness from losing her butterfly sparked a full meltdown from Miss Riley. It was sad and adorable at the same time! She just feels emotions so deeply. Her concern for Baby Bop..

And once Barney cheered Baby Bop up...

Then this afternoon while we were having our carpets cleaned and doing laundry, Riley was more then insistent that Nana put her favorite jammie shirt back on her and that she wore Nanas socks! Evidence of this silly girl..

Both Riley and I missed Keagan all day so we were happy to be reunited! I told Keagan about our little miracle today and she responded with an "awww" and attempted to get her sister to give her a repeat. Again there was no luck. But we did get this...

Without a doubt a wonderful day! Celebration worthy indeed! A simple "hi" never sounded so amazing!

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Saturday, August 4, 2012

Summer Time Girls

The lazy days of summer have been eluding us lately. Until today. We didn't even leave the house all day. Instead we played, watched the Olympics of course and napped. A good summer day.

We have been so busy lately. Of course Riley has had her busy therapy schedule and Keagan had Science Camp for 3 of the last 5 weeks! That meant she was back at the best preschool in the world from 9-1 Monday thru Thursday doing some really fun things!

We have also squeezed in fun things like go carts, play dates, and doctors appointments! Riley had a really great swallow function study this week that didn't show any aspiration! I was thrilled! We were also able to go to the Abilities Expo yesterday. I came away really wanting a wheelchair accessible car and happy that we got Riley's wobbly handle on her wheelchair fixed. The girls and Kellie came away having fun seeing so many different people of all ages in wheelchairs like Riley and riding the longest escalators ever!

Keagan of course never takes a break from her hilarity! While watching the Olympic divers the other night she looked at those boys in Speedos and said "mom they are wearing diapers!! Ewww!" And today after she had a supper fun trip to time out she told me she wanted a new mom! That one definitely hurt my heart a little bit, but she quickly changed her mind! Maybe that was just the effect from how proud she was after getting herself dressed today.

Her middle name should have been sassy! And yes she...A. Is standing on the table so I can get a good picture of her whole outfit and B. she wore the sequined puppy purse most of the day!

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