Our beautiful butterfly....

This girl...with her new smile and even newer haircut. She just beams. Always has had that zest for life. That zest making for some parenting challenges but so thankful for it as it seems she'll need to harness her inner warrior more now than ever.

We recently found out she has Turner's Syndrome. In short, she's missing her 2nd X chromosome. This causes short stature, difficulty reaching puberty without hormonal assistance and infertility. Scarier still, heart defects, kidney abnormalities, learning disabilities.....the list goes on.
We initially went to our pediatrician to have her headaches addressed. They were becoming more frequent and bothersome.  The doctor recommended an MRI which showed a nearly non existent pituitary gland. After more vials of blood than I've ever seen being taken,  the diagnosis was made.
We were a bit shocked.....we expected a growth hormone deficiency at worst and had no idea chromosomal tests were even being done.
Nothing is more difficult than knowing your child will likely face some heartbreak. She speaks often about being a mother. ....what if that is never possible for her?  Although there are amazing alternatives,  not having the ability to carry your own child can be devastating. For now, she only knows she'll begin shots for her growth.  That enough is difficult for her...daily shots...for possibly the next decade of her life. I don't believe she can fully comprehend the rest. ....we hardly can. Right now, our concern is making sure we educate ourselves and stay vigilant about the many consultations she'll face....cardiologist, nephrologist, ENT.....
My prayer is that her issues are minimal although the big things, like fertility and puberty seem to be problems for even the better case scenarios. I worry about the woman that she'll eventually become facing these things. While I know things could be so much worse, I hate for her to experience any sort of heartache.
She's a tough kid though, this one....I have no doubt God gave her that spunk to be able to face this and any adversity that comes along. She's gonna be juuuust fine......


From The Mayo Clinic:

Turner syndrome, a condition that affects only girls and women, results when a sex chromosome (the X chromosome) is missing or partially missing. Turner syndrome can cause a variety of medical and developmental problems, including short height, failure to start puberty, infertility, heart defects, certain learning disabilities and social adjustment problems.

Turner syndrome may be diagnosed before birth (prenatal), during infancy or in early childhood. Occasionally the diagnosis is delayed until the teen or young adult years in those who have mild signs and symptoms of Turner syndrome.

Nearly all girls and women with Turner syndrome need ongoing medical care from a variety of specialists. Regular checkups and appropriate care can help most girls and women lead relatively healthy, independent lives.

A star is born.... again!

 Man,  this girl is so brave.  She sang in front of a couple hundred people at 4 and now.... school plays.... She's fearless!

I did lots of this sort of thing but always suffered with terrible stage fright! This girl comes alive on stage. She's comfortable and having fun.  Makes this momma's heart happy!♡

She was a "greaser" in her 2nd grade dance recital and she. rocked. it.  I mean, it requires sass and hip action.  Done and done....

I just love this school and the way they are encouraged to have fun and be comfortable trying new things. Love watching this girl kill it onstage!

Gavin's first Basketball game!

So this character desperately needed an activity. He never.stops.moving.

Since Daddy's a basketball freak/coach/player, well, duh. He's never played or shown any interest but he sure seems to be having fun...can't say he's super skilled (he'd prefer to spin in circles and chew on his jersey) but, as Garret says, kids are starting sports sooo young. I mean, they have the attention span of an gnat. Some worse than others....

 

I'll say this, it might be one of the cutest things I've ever seen! Kids running aimlessly, all rules being broken....guarding everyone but the person that has the ball....worth the fee for playing all day!

Clifford the Big Red Dog

It's literacy week at Ft Myers High so the Little Waves were told they could dress as their favorite book character today. I asked Gavin who he'd like to dress up as, cause, frankly, he's not as into books as Maddie was...he can't sit still for long enough to finish one! I suggested Pete The Cat, cause he does love those books but out of nowhere, he says "Clifford!". Ok. We don't even own a Clifford the Big Red Dog book but okie dokie.

Turns out, it's his favorite at school. Also his favorite at school is Graysen. He talks about her constantly! After googling some Clifford DIY ideas, I kept seeing a girl with the dog. Gavin told me that it's Emily Elizabeth, Clifford's owner. In some of the pics siblings/friends were dressed up together and, LIGHTBULB, maybe Graysen could be Emily. Her mom loved the idea, and another shot for the wedding slideshow is born...

 

Ms. Hollan even got in one the fun!

I can't say enough about how awesome this program has been for us all....Gavin loves it and is learning so much, Garret gets to see him whenever he wants, it's affordable and most of all, fun!

Social Media's good for somethin!

 So, this blog has always been meant as a family journal of sorts. Who has time for scrapbooks anymore? And actually printing pictures? Never! 

My intention has been to document the important moments of our family's lives. Mostly, it's about the kids cause they're cute and stuff but if they are to one day look back at this...I'd like them to see this part of the story. My story.

Last week, I got a message on Facebook. Because this person was not on my friend's list, I got a quick notification and I honestly forgot to check it. It came from an unfamiliar, albeit very German name, Monika Dorsch. As I was checking another message, I noticed it there again, in bold letters, unread. I opened it and it was all in German, which I can speak very little and read even less. I could however make out that she lived in Germany and the names of my brothers, myself, my mom and....my father. Let me pause to fill you in on that part of the story....

My parents divorced when I was 3. As has been told to me, my father was in prison for 3 years for robbing a bar. While there, they divorced and my mom met my Air Force Master Sergeant Stepdad, Wayne, stationed in Germany. They soon married and had my sister, Monique. After his time in prison, there was no contact between my father and I. He apparently would take my brothers on occasion but never me. I'm not sure why...shame? Guilt? Fear?

I don't know the full story and exactly what happened but I know we lived on base and moved to America when I was 8. I never even knew the story of my father until I was a teenager and what I just shared is all I know apart from the fact that he and my mom were high school sweethearts and he played guitar. That's it. That's all I know.

I saw a photo of him for the first time ever in my 20's.

 He and my mother's wedding photo.

I've never had much emotion about him one way or another. I was well cared for and although my stepdad wasn't very affectionate, he took in my mom and her three children and treated us like his own until he and my mom eventually divorced. He passed away shortly after from cancer. I will always be grateful to him for being the only father I ever knew.

At that time, I started to feel oddly curious. I have never wanted a relationship, as I felt he clearly never pursued one but I became interested in that side of my family. It's odd to be missing a piece of the puzzle. At the time, my aunt lived fairly close to him and had seen him out one day. I decided to write a letter and ask her to help me get it to him. I did and he never responded. Again, I wasn't upset but I decided to just let it go. I tried to reach out and he wasn't interested. Ball dropped. No biggie.

Fast forward to last week. This lady, after very awkwardly trying to communicate with each other is my aunt. My father's sister. She also contacted my mom so she was able to tell me what I was missing. She was Monika DITSCHER Dorsch. She just searched Ditscher and found us. She and my father don't have a relationship, although I'm not sure the reasons.

 She's been so excited! She sends photos and emojis every morning and signs off as TANTE (Aunt) Monika. It's really been amazing. I feel like I have this whole other family I never knew. Her mother, my grandmother is 91 years old! Monika is married and has a grown son. She began just sending photos of herself, her mother, her view, her dinner, her cats. Then she sent a couple of my father as a boy/young man. I assume she doesn't have a recent one due to their falling out but again, the communication is minimal so I don't know the details.

 My mom told me she spoke to my father's wife and she also wanted to reach out. Then, as if all of this isn't overwhelming enough, she sends me this photo:

She says, in her awkward attempt at english, this is my "brudder". I have a half brother! I immediately could see a resemblance to my brothers, especially Andy when he was younger.

I have no idea where all of this is going and if I just keep communication with her, that would be ok. She seems to be very happy to have found us and I have really enjoyed knowing that someone from my father's side was curious and did want to know us. If that's as far as it goes, that's just fine by me. 

Gavin is....*gulp*...four!

Calling all Superheroes! 

Super Gavin turned FOUR! Whaaaaaat? And it.was.awesome. I mean, after the tears (mine), we had a super fun party at Caleb's Memorial Park which just made it all the more special!

It was cold. I mean like, bone chilling, freezing for us blood thinned Floridians kinda cold! And the park was fully in the shade. Br. 

BUT, I'll take that over the 89 degree Elmo party a couple years back thank you very much.

 The kids each got a cape...

 Themey food, cause well,I'm a dork.....

 

After some mask decorating.....

...It was time for Superhero training camp. I mean, you have to have basic Superhero skills to call yourself one, no?

Leaping over tall buildings in a single bound!

Capturing the Kryptonite!

Running faster than as speeding bullet (Garret and Scott pelted them with Nerf guns while they ran and enjoyed it a whee bit too much...)

Diffusing "bombs"

And, of course, testing your web slinging abilities.....

All his best buds were there! 

 

 

 

 

 

I feel so cliche and redundant when I endlessly complain about how fast time is going....

You could say at the speed of light...see what I did there?

But it is. This is my baby. And four is so....not a baby anymore. He is becoming more independent and wants to go play and just be. I just crave his little self snuggled into my arms, from which he now overflows. 

But I adore the little guy he is becoming....so silly and sweet. He knows nothing of just walking. His mode of transport is running, skipping, jumping....walking he does not do. He is so loyal and loves fiercely. And that smile and laugh...I dare anyone be exposed to it and not feel better instantly. 

He is super in every way.