Tuesday, January 15, 2013

10 Things About Raising a Turner's Girl

Long time no chat blogsphere.  Things are unusually good at the Bowen house.  Strange.  Lots has happened since the last blog, maybe that's why I have been slacking on my blogging.  We moved last year back to my home town (Marshfield) and we are loving being back.  Lily started a new school and we held her back in kindergarten last year (BEST decision EVER).  James also started preschool this year.  I honestly don't think my kids will ever be allowed to go away to college.  They are both gone for 2 days a week for 2 and a half hours and I feel like an empty nester.  Time for another one.  Good joke!

 So in my 6 years of Turner's wisdom I feel like I have learned a few things about raising a Turner's girl, here's what I have so far.

1.  Teach your daughter she is not a baby and that height does not determine maturity, intelligence or beauty.  The best things come in small packages.

2.  Get to know her doctors, ALL of them.  They will be your best friend or worst enemy.  You entrust your child's development to them.  Don't forget that they get a Christmas present too for all those times they put up with helping you hold down your screaming toddler for more blood work.

3.  Become knowledgable on IEPs, they determine how great your child's education can be.  We are our girls only advocates.  It is up to us to get them every single last service they not only need but deserve.

4.  Let them play Mommy all they want.  Although biological children are not in our child's future encourage them to love those baby dolls to pieces and show them on a daily basis what it means to be a great mommy.  Medicine is evolving daily, who knows where it will be by the time our girls are ready to have their own children.  If not, adoption is a fabulous option.

5.  Help them make great friends at a young age.  If they can develop meaningful friendships at a young age then guess who is going to be there to help them defend themselves against the cruel "Queen Bees" in high school? The same kid that helped them wipe away their boogers from crying after a skinned knee on the playground in kindergarten.  Encourage their friendships now and you will be thankful when those friends are there 10 years from now.

6. Don't hide it.  It amazes me that there are parents out there that don't embrace their child being a Turner's girl.  Hiding it from family, friends and your community will only make your child embarrassed of their syndrome.  Turner's is never going away, teach your daughter she is unique, not a freak.

7.  Educate yourself.  It is up to you to know every single medical issue that falls under the TS tree;  Celiac's disease, hearing problems, learning disabilites, cardiac issues, etc. etc. Being ignorant about the syndrome doesn't make it not real, it makes you an idiot.

8.  Keep your friends close.  You will need them often.  They will be the only ones there to listen to you vent after that little shit boy on the playground called your daughter a baby for the 4th time this week, or after you get yet another diagnosis of something else "wrong" with your child.  Oh yeah, and they always have an extra bottle glass of wine after you feel like you just cannot keep going.

9.  Make them strong.  Make them stronger than another girl their age.  They need to be tough, really tough.  Kids are mean, and as some of us know so are adults, so teach them to live the old mommy saying of "Sticks and stones may break my bones but words will never hurt me."

10.  Love them.  Love all of them.  Love them as they scream at night getting their growth hormone shots, love them as they struggle with that simple math problem that you can't imagine not understanding, love them as they cry over eating all the veggies and still not getting taller.  Love every little piece of them always.

Merry belated Christmas and Happy New Year Everyone!

 Gingerbread babies!

Silly Kids
Lily & James
Happy Halloween!
Lily and her cousin Brandon!

Wednesday, December 14, 2011


Seriously... no seriously... when did childhood get so complicated?  My mind will forever be boggled by the complexities of childhood which is supposed to be the simplest times of all our lives.  Who raises bullies? I really am dying to know.  No parent wants to admit their child is the one picking on other kids, but some really need to face reality.  While they are busy turning a blind eye to their child's down right evil behavior, I am busy cleaning up the pieces of a broken 5 year old heart.  Ok now I am rambling.  Here's the deal; I had parent teacher conferences 2 weeks ago.  I thought long and hard about posting about it because the last thing my kid needs is a pity party, but I am frustrated and mad and I want FEEDBACK!  Back in October, I had a conversation with Lily's teacher after she had come home quite a few times very upset because some little shit kid was picking on her.  I didn't want to call, so at first I gave her things to say back to him.  He would say "Lily you are too little for kindergarten," "Lily you look like a baby," "Lily you are too slow," etc. etc. I told her to tell him to "Worry about yourself and not about me," and other things that I felt were appropriate for her to say (even though what I really wanted her to say to him would probably get her expelled).  I mean, I am no fool, I realize she is at least an entire head shorter than everyone in her class, but no child has the right to ruin another child's self esteem.  The teacher moved his spot in morning circle time and kept a closer eye out for Lily.  It seemed to be working as she mentioned his name less and less and I thought it was over.  So I sit down for parent-teacher conferences and first I hear about how she is doing well in her academic areas.  Not great, but good.  She is well beyond where her teacher thought she would be after reading her IEP at the beginning of the year.  She is still struggling in certain areas, but is coming along and trying really hard.  What more can I ask of her?  Then I asked about how she was doing socially, which I thought was going to be a "Are you kidding me? She is the most social child in the class!"  I was wrong.  She has one best friend, and clutches on to her.  She is too timid to ask other children to play with her, so when her friend is playing with other children, Lily is alone.  The other day in line walking back from recess, the little boy behind her told her, "Lily you are way too small for kindergarten and you walk way too slow."  Sounds stupid to us; not to her.  Her eyes filled with tears, but she didn't let them roll down her face.  On the playground, she can be seen sitting alone and when asked by the teacher what she is doing, her reply is "Nobody wants to play with me."  This is all seriously like ripping my heart from my chest, spitting on it, kicking it, punching it, and throwing it into a meat grinder.  It breaks me.  I can't imagine being so little and feeling so put down.  It isn't how the situation seems to you or I, it is how a 5 year old perceives it.  When I asked her about all this after conferences she told me she doesn't like to ask other kids to play because they say no to her.  I also asked the teacher if she was mean to other children and perhaps that's why they didn't like to play with her; however she told me she is EXTREMELY kind.  After talking to my Dad about it we decided it would be best for her to go see someone, so that is the short term plan.  I need some help from you guys!

How would you handle all this? What would you say to your child?  I have the teacher involved as much as possible and I feel she is doing her best. How do I not let my child's self esteem get ruined at the ripe age of 5?  HELP!  Any feedback is muchly appreciated!

Monday, October 31, 2011

Long Overdue -- AGAIN!

Hello Blog World!

I have not been a good blogger ever  lately!  May 28th is my last update and as I am sure your life has gone crazy, so has ours.  This blog is a recap about what has been happening on our side of the fence.

Summer was FAB-U-LOUS! We spent this summer with our butts in the sand!  Duxbury Beach, my little piece of sanity, was where we had our most fun.  For those of you from not around this neck of the woods, Duxbury Beach is a drive-on beach where if you have 4 wheel drive/all wheel drive, you just drive your truck onto the sand, park it there and enjoy the surroundings.  Lily and James love it there, maybe even more than I do.
Lily & Nolan

James "Boogey Boarding"

We celebrated James turning 2 on August 14th, and on July 13th, Lily's 5th birthday, she got the best present ever.. Her first cousin!  Brandon Alexander was born on Lily's 5th birthday and I am finally a proud auntie and godmama!  We love him so much and he fits perfectly into our family!

Proud Madrinha!

This summer also brought an era of my life to an end.  I babysat for an amazing family, the Sypeks, for over 8 years! I watched Griffin from diapers and matchbox cars to iTouches and girls; and Nolan from formula to Sprite!  I am so so blessed to have been able to see them so much for 8 years, and leaving had me in tears for quite a few days, but I had to leave for a good reason because.....

I got a Nursing JOB!!!!! Woohooo! Finally!  I am working at a nursing home in Brockton, and I really like it!  I work with some really great people that have been super patient with me learning the ropes.  Nursing is so NOT what they teach you in school.  I am working the 3-11 shift and was full time for a month during my orientation.  I missed the kids so much! I would wake Lily up at 8, put her on the bus at 9, and not see her again until the next morning. Now that I am off orientation I am 24 hours a week (every other weekend) and enjoying seeing the kids again.

Speaking of the bus...
Lily & Olivia 1st day of school!
She love love loves school!  She has the routine down and her teacher informed me at Open House how funny she thinks Lily is.  At Open House everywhere we went everyone knew her,  I swear she is the mayor of kindergarten.  We have run into a little bullying problem with a certain little kindergarten boy.  He chooses to tell Lily she is a baby and too small for kindergarten so I talked to her teacher and had that nipped in the butt real quick.  I refuse to let one little boy make my child no longer feel safe at school.  I knew that one day she would get picked on for her size, but I was blindsided that it happened in kindergarten. I keep telling her that only small people speak badly about others and that even though in size she may be tiny, she has a way bigger heart than he does.  However, if he wasn't 5, I think all 5 of her uncles, Grampy and her Daddy may have had some words for him.  (Note to potential daters in 10 years: yes, she has 5 uncles and a Daddy, and the uncles range from 5'10-6'4 so stay away from her unless you wish to have a death sentence.)  Since I spoke with the teacher 2 weeks ago Lily has not mentioned this boy picking on her anymore (she was coming home upset daily) so I am hoping that since he was spoken to he has learned a lesson.  

Lily also played soccer this fall.  She is no David Beckham and I won't even lie and say she liked it, she actually hated it.  I find it devastating since I played for 15 years and couldn't wait to sit at the soccer fields.  It looks like I have a ballerina and cheerleader on my hands.  She is so much more girly than I am!  I am still adjusting!

Other than that, life has been good!  James was recently diagnosed with moderate hearing loss.  He is 26 months and still wasn't speaking, so I called early intervention to come in and evaluate him.  They recommended that I take him to an audiologist so I did just that.  He was diagnosed with fluid in his ears, moderate hearing loss, and he is also tone deaf.  We are going to see an ENT doctor on Wednesday and he will need tubes put in his ears.  He will regain full hearing after the procedure (as he can hear behind the fluid block) and hopefully his speech will come right along.  The speech pathologist told me she thinks he has actually been lip reading for quite some time.  Kids are so resilient and know how to compensate for their losses!  I will keep everyone updated on that as well.

As far as Lily's health, ALL IS WELL *knock on wood*!  It feels really good to be able to say that.  Turner's has become the background music in our life instead of being the loud rock music that was all I could hear!  I am proud to say my daughter is a miracle Turner's girl, but it does not define who she is.  She is strong and kind and she is just like you or I yet I wish I had the strength she does.  

I have had a few different mom's of daughters with Turner's get in touch with me and I am so thankful that this blog has opened the door for them to get in touch.  I remember how alone I felt in the beginning and it is nice to know that even if it is just one email, for one moment in time, they are not alone and we are forever bonded through this syndrome.  Keep your heads high, our daughters learn strength through us.  Feel free to email me!

Happy Halloween everyone! I hope you all had a fabulous night and get really chocolate wasted!
Love, Rocky and Minnie Mouse!

Saturday, May 28, 2011


Well hello there blog followers!
I know it has been far too long since I last updated, but it has been CAARAAAZAYYY at the Bowen house!  It seems like the May/June months every year is always the busiest.  We have been lucky enough to be parts of such great celebrations the last few weeks and it is just AMAZING that we get to have all of these memories.

First, we want to send out a BIG congratulations to our favorite newlyweds, Andrew and Kristen Bowen!  All 4 of us were lucky enough to be a part of their GORGEOUS wedding!  Lily of course made a beautiful flower girl!
Girlfriend was ALL business!

We got home after the wedding and Lily told me she was so happy that Auntie Kiki fell in love with her Uncle A.  She told me the wedding music was magical and that Kiki was the most beautiful bride in the whole world and Uncle A was so handsome.  It is always cute to get a 4 year olds perspective on things, and it looks like Mommy and Daddy will one day have to put on a perfect wedding!  It was a beautiful weekend in Newport and we had a lot of fun.

Next, we got to celebrate my brother Brian and Ashley's baby shower.  I cannot believe my baby brother is having a baby! And a son at that!  Nobody could be more proud than me of the man he has turned into and I am POSITIVE that he will make a great Dad.  Ashley is beautiful and a nervous first time mom to be.  She will be great.  Seeing her with the kids shows me her heart is huge and this baby is going to take up every last space of it.  I am so happy for them both!  Lily prays for her "baby cousin in Ashley's belly," every night at bedtime.  We all love this little man so much and we haven't even got to meet him yet!
Lily with Uncle Brian and Ashley
Lily, James, and my family were also on hand at my Nursing Pinning.  AMAZING and CRAZY just the same to finally be done with school.  I have kind of been on an emotional roller coaster since the pinning Thursday night.  Part of me is sad and I feel like I am missing a part of who I am; the other part is in awe that I actually did it.  Nursing school was an experience like no other and I got to meet some absolutely amazing people.  When Jimmy was sick, my classmates collected money for our family, and with it being so close to Christmas, they collected toys for Santa to give to them as well.  These people truly impacted my life in ways that they don't even know and I will always carry my Nursing crew in my heart! We did it guys!  Lily also told me that night how proud she was of Mommy and that when she grows up she wants to be a nurse.  
I did it!

We also got to have a "Thank you" read at pinning, this was mine:
"First and foremost, thank you to my Lily for showing Mommy what my true calling in life is; you continue to amaze me every single day.  Thank you to Jimmy, Mom, Dad, Kellie & my entire family for the countless pep talks, childcare, encouragement, love and support over the years; you all kept me going when it would have been easier to just give up.  Lastly, thank you to Maureen, Sue, Andrea and especially Anne for teaching me that bring a nurse is so much more than a job, it's who you are."

Now on to the medical stuff...
We have adjusted well to a gluten free way of life.  Once you get going on it, it is a lot easier than you think!  We still eat out, Lily still eats all her favorite things, it just is missing the gluten!  She is doing well, although sometimes she still has her days where she says, "I wish I wasn't the gluten free girl anymore."  It kind of sucks at school because her teacher is not good at letting me know when they are having treats so Lily is usually left out.  Bummer.

We are back on the growth hormones and I think I have the only 4 year old around who LAUGHS when she gets shots.  A while back, her Papa told her to laugh when she gets one because she is way too cool to cry.  Well apparently girlfriend took what he said to heart.  Her face says sad, but she manages a fake laugh EVERY SINGLE night when she is getting her shot.  It is amazing how resilient kids are and how she just assumes it is part of her life.  This kid is something else!  I am LOVING our new docs at The Floating Hospital for Children at Tufts.  They are amazing and LISTEN to me.  Finally, someone who doesn't think I am a dumb young mom!  

We got to go to kindergarten orientation at the beginning of April.  Lily LOVES her new school and cannot wait to go.  She hates the idea of the bus, but we continue to talk about it and hopefully by September she will be getting on with a smile!  I cannot believe she is going to be 5 in a little over a month.  I want to freeze time forever.  She loves her momma so much right now and I cannot imagine when there is ever a time where I have a teenage daughter who hates me for not letting her stay out past curfew.  UGH! Anyways, I am getting ahead of myself.  I will enjoy every single millisecond with her at this age and not take one of those seconds for granted.  

So overall we are such a blessed family right now.  I know the Big Man up above is watching over all of us carefully because things have been going amazingly well.  I feel like good karma is FINALLY coming for the Bowens!  

I am going to try to update more frequently now that I am done with school.  A lot of you have been asking me questions about Turner's Syndrome of what is going on with Lily, so please feel free to email me at shannonedauwer@yahoo.com, post a comment or facebook me and I will answer all of your questions honestly and to the best of my ability on my blog.  Nothing is off limits! I love that people are hearing about Turner's Syndrome and hope that this blog can in even a small way spread the word about it!

Enjoy your long weekend everyone!

Tuesday, February 1, 2011

Rambling & TS Awareness!

Ahh... bedtime... My personal favorite part of the last couple of days.  It seems like the kids are secretly hatching plans every night before they fall asleep as to what they can do to torture me the next day.  Kids 1 Mommy 0.  Today it was the loveliness of James dumping out a newly opened bag of potato chips on to the freshly vacuumed floor at the same time Lily was having the MELTDOWN of the century.  Cute guys, real cute.  I guess I learned that James is now big enough to grab stuff down from the counter, either that or his trusty sidekick "Sissy" got them for him.  Lily's meltdown started when I told her and her friend Olivia (play date today!) to clean up her room before Olivia's mom came to get her.  Lily told me it was "WAYYYYY too hard" and "I refuse to do it Mama."  Seems like I am raising a rebel already.  She did it, crying the entire time, and then her friend's mom came which took the meltdown to an entirely new level.  NAP TIME quickly followed for her.  The kid is 4 and I can honestly count on 1 hand the amount of times she has napped since the age of 6 mos. so it was truly amazing to watch her sleeping when the sun was still up.  No complaints here.  I will take a daily meltdown if it means an hour and a half of nap time follows.  Mom's of little napping babies, cherish every second of nap time; you will miss it the most when it's gone. 

The weekend was pretty uneventful.  Saturday morning was Lily's dance class.  It is like a top secret CIA meeting in that room.  No moms/dads allowed in or even to peek.  The secrecy makes the recital so much more fun, but in the meantime I am dying to see my little ballerina tapping away. (I know, ballerinas do ballet and not tap but I can't think of the name of little tap dancers right now... I'm tired.)  Saturday night, Grammie stole the kids for the night and Jimmy and I were able to do dinner and a movie which is always super refreshing because nights out are few and far between.  Sunday was a lazy day here.  Like I said, completely uneventful, but sometimes those weekends are the best ones.

Ahhh that is all for now.  Nothing too new going on.  The snow all around is starting to make me stir crazy.  It was fun at first, but now I want winter to have a Xanax and chill out!   

I have been getting some awesome emails from people regarding this blog and gluten free stuff etc. so PLEASE keep them coming!  I love it!


February is....
Here are 7 facts of TS that were emailed to me from TSSUS.. Become aware!
1. TS affects only females.
2. One in 2000 female births is affected by Turner syndrome
3.      The average height of a women with TS without Growth promoting therapies  4’8”
4.      Half the girls with TS are not diagnosed until they are teens or preteens.
5.      Individuals with TS have an increased risk of non-verbal learning disorder.  In school and work, these impairments can cause problems in math, visual-spatial skills, and executive function skills. 
6.      Early diagnosis and treatment with estrogen from the teen years into adulthood is essential prevent crippling osteoporosis in the adult woman.
7.      Ask TSSUS to send a “Short Happens!” button to your doctors to help crush ignorance of TS!

Friday, January 28, 2011

Lily's Baby Book

So I may now be reffered to as "Slacker Mom."  I have my baby book (which is actually a calendar) and I remember being prego with Lil and thinking how I would do what my Mom did and for her entire first year I would let her know at LEAST 4-5 activities we did that week .. Yeah well it's funny how life always has other plans for us, so needless to say, her baby book stops around page 3.  So a while ago I decided to put her pictures together and make her a "video baby book."  Cool idea I thought.  I added some more pictures recently and put it to some tear jerker music (REALLY LISTEN TO THE LYRICS OF THE 1ST NATALIE MERCHANT SONG -- WONDER!) <--- I don't know why that's in caps.. It made me feel powerful.  So I thought it was a cool way for the newbies who are now looking at my page to be able to put a face to a story.  I know it's obnoxiously long so I promise I won't be disappointed if you skip some of it.  Enjoy!
Lily had a fabulous time watching it!
She made me play it at least 6 times and cried when it ended.

On another note, we went to the optometrist today to get Lily's eyes checked out because I swear every time I back her away from the TV she is like swiper the fox and back there faster than I can turn my back.  Needless to say, its developmental and she is fine, eyes are great!  We will be going back next year because with TS does come the possibility of eye problems in the future.  Geesh -- What isn't a possible problem with TS?  Even I am overwhelmed with keeping up with it!  Oh well, looks like our road of life just has a little more traffic than the rest of the world! 

Thursday, January 27, 2011

Enjoying the Small Things

We all remember the anticipation of a snow day as children.  Sleep with your jammies inside out, put that spoon under your pillow, do the "snow dance;" try to deny it but we have all done one of those! Well, not Lily, Lily was pissed when she woke up this morning and there was no school. "But Mama, it's gym day with Mr. Harrington, and we were gonna do sledding at recess!"  Yes, I know, she's still too young and naive to realize that snow days are the best days ever!  I secretly hoped she would have school today as well.  I've never been much for loving to play in the snow and I know that if there is no school, it is written somewhere in the "How Not to Screw Up Your Kids Handbook," to take your kids outside to play in it. So needless to say, against everything in me, Lily and I went sledding.  I was not looking forward to going at all, but we as Moms do a lot of things we do not want to do (i.e. nighttime feedings, crappy diaper changes etc).  We were lucky enough to have Daddy home for the day, so we were able to do something just "us girls."  Girls days are few and far between these days now that we have a little boy tagalong in our James.  Don't get me wrong, we love him to pieces and I swear he is the comic relief of my life, but hanging out with this little mini me I have created is a blessing in itself.

James and Daddy made a mess of the house while we were gone

So off to the park behind Middleboro Police Station.  I actually had to call a friend from the area and ask the best places to sled around here.  Usually when we go play in the snow it's just outside our building and sledding was something we had yet to attempt.  This hill was pretty decent.  Being from Marshfield, I was spoiled by Coast Guard Hill, and this one just couldn't compare.  Apparently it was the place to be today though because there were kids everywhere.  To know how Lily would react, you have to know this kid is petrified of her own shadow.  If you say the word "Santa," she goes running and hiding because she is horrified of Santa.  We took her to Storyland for her 4th birthday and got her on 2 rides in the whole park (talk about a waste of $$!). So I didn't give her enough time to think about anything.  I put her tiny butt, and my not so tiny butt on the sled and down we went.  She SCREAMED bloody blue murder the whole way down, and as soon as we got to the bottom she got up with an ear to ear smile and started laughing her little butt off! 

"AGAIN AGAIN MAMA!"  So up and down we went 4 or 5 times and by we, I mean her sledding down with me and me trucking her back up the hill.  Then she decided she wanted to make a snowman.  Over to the field we went to make one, but if you have been out in the white stuff, you too will know this is not good snowman snow, so we settled for a "snowball fight" which consisted of Lily just throwing snow at my face and thinking she was the funniest human being that ever walked the Earth.

making snowballs

After the joy of pelting me in the face subsided we made some fabulous snow angels.  

My angel making an angel

Our Matching Snow Angels

So my dread to go and experience sledding was overwhelming and when I sitting there getting snow thrown at my face, I realized this was the best time I had had in so long!  I feel like I am so caught up in getting the house cleaned, dinner cooked, studying, working on Lily's letters and numbers, bath time, story time, and bedtime that sometimes I forget what really matters.  It isn't the hundreds of toys under the tree Christmas morning, or the lavish vacations we take that matter to our kids; It is the times like these when Lily was running through the snow, falling, throwing snowballs, making snow angels, and laughing the entire time that really matter.  As we were leaving she said "Thank you so much Mama; This was the BEST day ever!" That is what matters.  Enjoying the little moments that mean the most.  She won't remember all the dolls she had when she is older or the trip to Disney World we took when she was 3, but she will remember the spontaneous dance parties we have in the living room where she teaches her brother the basics of booty shaking, the bike rides that take hours to get around the block because she walks and rides and smells the flowers, making sand castles at the beach and then smashing them to pieces, and the snow days we spent sledding, throwing snow, and making angels.  To top it off I had a blast myself!  I loved every second of playing in the snow, and if the domestic duties of making dinner hadn't called me home, I probably would have spent even longer doing so.  Lily really hit the nail on the head, today was the best day ever!