Friday, July 28, 2017

WOW summer is almost over for us already ~ The struggle is real!

In 14 more days Av's Sophomore days start with an athletic code meeting and then a band practice to get started on memorizing music that they will be playing at football games and such.  Then the next day Dive season starts.  Along with band and dive Av is on a 3 different leadership programs for the HS so they have meetings and retreats throughout August too.  BUSY BUSY BUSY!!  We will soon be taking a trip to Ohio as Av is once again a Nationals qualifier.  So the Osero's will be off to Columbus Ohio to Nationals for both 1M and 3M boards.  Stay tuned!!

For the most part no news has been good news...nothing earth shattering to report over here.  I will recap the last month and half (I can't believe it's been this long since a post.)
Unfortunately this summer has been VERY rainy so we only were able to get on the boat the beginning of the summer as if it wasn't raining the others had things going on.  Hopefully we will still get out out on the water before the temps get too cool.  Thankfully we have the pool so on those hot days I've gotten Danny in the water.
I even put him to work ~ helping me clean the pool for his swim party
 Danny and his BFF Griffin
Grif's mom and brother
 Danny and his nurses  ~ too bad his new pool float didn't work for him like I was hoping it would
But we made the float work
 Mr Raymond and I hanging out
 Danny and his BFF Raymond
 I held Danny in the pool for about 2+ hours.  It was great!!  I miss holding him like this......BUT my arms were like Jello afterwards.  Want to freak out 5 nurses.....take a trache/vent kid out of pool float and hold onto him ~ LOL
 Raymond and his Momma!!
Danny chillaxing on the Lily pad with his pups ~ yes it's a "ruff" life

After being here for 8yrs we finally have a fire pit ~ Bring on the SMORES!!

Once again, Av had a great time at Dive Camp in Iowa ~ GO Hawkeyes!!
 The coaches!!
 This is Av's 5th year of going to Iowa for their summer Dive Camp with Head Coach Todd
I hung Av's awards from her Freshman year on the wall.  We got her last award a couple weeks ago....All~American to got with her All~State, State Champion, Diver of the Year, and her collage of newspaper articles and photos of the season.  She keeps this up and I will need a bigger wall

Danny had his annual body xrays to make sure all is well with this orthopedic hardware and procedures.  Impressive ..... Isn't it?
 We were not able to pin point the cause of his irritability, but thankfully he's calmed down for the moment.  It's still a mystery that we will NEED to find out.

Danny also had his dental appt.  No xrays but they were able to clean his teeth.  They found 2 deep pits in his back molars that are turning into cavities, so they will need to be filled.  I am trying to coordinate a day surgery with dental to fill them and with ENT to deep clean his ears (possible reperf if needed) and a bronc to check out his trachea (and large granuloma in his throat).  Unfortunately trying to schedule the 2 and in a timely manner has presented to be challenge so we shall see when that is actually going to happen.
He's a cool dude at the dentist!
 For not biting the dentist he earned himself and new balloon and stuffed animal.  Ms Emma picked out the cow ~ LOL

4th of July Fun ~ We hung out in town this year
 We walked through Riverside Park to see all the activities and people there
 It's not a 4th without a Funnel Cake and an Orange/Lemonade drink.
 Trying to win at a game of Cribbage
 We piled into Danny's room/bed and watched the Macy Firework display.  We watched them on tv in his bed last year and I think we found a new tradition. Macy's puts on a an amazing firework show along with music from the military band/choir.   No bugs, No crowds = perfection!
Maybe one year we'll have to go there and watch them in person.
Av spent her 4th of July at a new summer dive camp in Indiana at the Hoosier facility.  It was a rough start for her as she wasn't feeling the best (hurt her foot), it was a new place, and she went solo so she didn't know anyone.  BUT by the end of the week she was enjoying herself, meet some new friends, and has shown her diving abilities off to a new group of college coaches.
We managed to have some fun on our way home
 Detour to stop at a candy store and a mall to find some Indiana Apparel

We had the annual Dive Mini Golf/Pool party
 All the kids are eating their ice cream while watching us adults finishing our round
 Then is was back to the house to play yard games and cool off in the pool
 Coach and part of his crew
 Av, Tim, and Izzy
Av's new friend....Rubber Duck "Roy"
They had fun with Paint
 I just LOVE looking out the window and seeing wild life.... this is right out my bedroom
 With all the rain, it's made for some amazing skies
 It's NO secret that Danny has a HUGE crush on Av's good friend Lydia.  He was having an off day and I told him he better behave as Lydia was coming over....he turns to me and grins ear to ear.  I just had to get a photo of them together.  As you can see he's trying to she where's she is standing.
 Just stilling out with my Lil Man ~ he's been having some rough days with dysautonomic storms (can't pin point why yet) so if crawling in bed makes him smile.....I will gladly do my part.
 Ms Cori and I took Danny on a road trip to High Cliff State Park to walk the Butterfly Pond trail.  On the way it just poured, but thankfully a trip to their ice cream shop to waste a few minutes and there was break in the rain for us to get out a walk for a bit.
 "I will be by your side in all storms"

"EVER BENDING, NEVER BREAKING" ~ I have to say the emotional funk I've been in has been OVERWHELMING!!  Feeling invisible and unappreciated ...... THIS TOO SHALL PASS ~ and I can't wait as it's a very lonely place to be.  With talking with some FB friends I have found that many felt the same way I have been, but they felt they were the only ones.  So here I post to let you all know, even when it may look like I have my shit times I'm so far from it.  YOU ARE NOT ALONE, some are just really good actors.
Drowning my sorrows with a beer in the pool
I found this on another blog and it hits home so I thought I would share (revisde alil to fit us)~ The Uncut Confessions of a special needs Momma!

-Every morning, the first thing on the to-do list is to make sure my child isn't dead. 
Sounds scary right? But it is our reality. Every morning, without a doubt- my first thought when I open my eyes is: 'is she breathing?' 
I did mention that this is uncut, right? 

-I am jealous of you.
Have I told you how jealous I am of you lately? That you get to go to lunch with your friends, worry about what you're going to wear on your night out, or talking about your awesome camping trip last weekend? I am even jealous of your long showers, and trips to the grocery store with your children in tow. 

-I hurt inside when I see your healthy children.
I wish I could look at them and relate. I wish I could look at them and just think about how cute and precious they are. But that isn't even close to what I think when I see your babies. I wish that I had healthy children like you. When I see your healthy kids, I wonder what I did, or didn't do to deserve the same thing. I wish my son could be healthy, like your kids are. I can't even begin to imagine how wonderful it must be. You are very, very lucky. Never forget that... Not even for a second.
-I am blessed beyond the comprehension of most people.
Jealous, confused, sometimes down right angry.... But blessed more than most will ever know. 

-I know things that you don't.
I bet you know a lot of things that I know too. But- there's a very exclusive group of people on this earth that I just so happen to be in... And we know things that you don't. We have seen too much to ever go back. I'll just leave it at that. 

-I have post traumatic stress disorder.
Self diagnosed, but I have also diagnosed my son with before any doctor could even get their hands on him. Yes, I suffer from mental illness. Most nights, it's nothing but horrible nightmares. Sometimes, I pull my hair out. I have anxiety, flashbacks,  and live in a world of never ending stress and every single second of my day is a huge unknown. This is enough to drive even the strongest person absolutely insane with guilt, fear, and worry. Soldiers get to come home from war. 
But I live here.
I live in a war, that I hope never ever ends.
see, I told you. Straight up crazy. 

-my heart hurts for him
I can pretend it doesn't, but then I see a healthy little boy around the same age as him and I realize how very different they are And God damn... It hurts..... Bad. 

-I think that He is perfect just the way he is, all the time.
HE is so.damn.perfect. 

-when you say the word retarded, I lose all respect for you.
More like..... I hate your guts. And you can just go away, forever. Have some respect.
If you try to justify it--- it makes it even worse. Just don't. 

-i can go up to three days without sleep.
And you would never even know if I didn't tell you. But you can look for the hints- black coffee in one hand, hair in a bun, and most of all... The darker the eye circles, the longer it's been since I've been on the dream train. 

-we would never want to be "just like everybody else." Normal is very, very scary to us.  When we have to leave, the streets are packed with people shopping, laughing, biking, eating ice cream, without a care in the world. And it scares the hell out of me. I don't want to be like everybody else. 
- I neglect myself. So much so that I never had a follow up after being diagnosed with Multiple Sclerosis and Fibromyalgia. I know that I am sick, but where the hell do I find the time? There is no time for me. I deal with it. end of story. 
-we live minute to minute.
Sorry that I didn't message you back. Sorry that I can't come over. Sorry that I can't go to lunch. Sorry that I don't feel like talking. 
I am always busy.

-this is the hardest thing that a person could ever be faced with.

But don't get it twisted-
I wouldn't change this for the world.
I think all of us go through some lonely low points in our lives....BUT we will make it through to the other side.  I want my kids to remember that their Mother gave it her all. She worried too much, she failed at times and didn't also get things right....but she tried to teach them about Love, Kindness, Compassion, and Honesty.  Even if she has to learn them through her own mistakes, she loved them enough to keep on going, and even though things seemed hopeless, even when life knocked her down. I want them to remember I am a Woman that ALWAYS GETS BACK UP!

1 comment:

Anonymous said...

Every morning the first thing on my to do list is make sure my child isn't dead.
That made my eyes water as I know that feeling all too well and it never goes away.