Sunday, December 22, 2013

My Day!

It's that time of year again.......December 22nd.  The day where I allow myself to bring out all that destructive thinking.  All the what if's, why's, and every other question a special needs mom dwells on.  I try my best to bottle it up, but today is MY DAY.

10 years ago today ......

Was the last day I was to ever be pregnant
It was the last day my Son was to be "healthy"
Oh ~ All the dreams I had for my family....... little did I know everything was going to forever be changed and the dreams I had, were in fact ..... just dreams.

How does one recover from this?  Not just this small helpless lil baby boy ...... but how does a Mother, whose sole purpose is to protect her child.....could not FAILED




These words will haunt me for the REST OF MY LIFE.  Not to mention remembering the ungodly screams and cries that came from my sister the moment he was born.
I knew my son was in the fight for his life, I knew I didn't keep him safe,  I didn't do my job.

The hours that followed his delivery delivered one blow to my heart after another.  Seizures, Brain Bleed, Brain swollen, Brain Damage................

My son was in a tailspin!!  I heard the words death, vegetable, and failure to thrive.

What is a Mother suppose to do?

I was devastated, I hurt in ways that are indescribable.

How awful is this ... all these painful memories of my sons birth.  A time that is to be happy and a celebration but my sons experience is FAR FROM THAT.

Myself, my family, and most important my son were robbed of so many things that day.

How naive were we?  We were to have a baby boy 2 days before Christmas, be home in 24 hours, and live happily ever after.

There are SO MANY things I would have changed that day, looking back I get so angry and sad with all the what if's and why's?  What I would give to be able to rewind and go back to that day.  I look at his life and how hard it is, how painful it's just not fair.  WHY?  What did he do to deserve the life that he got?  Why couldn't I make it better?

Danny can't be fixed!

He has been through and will go through things in his lifetime that are just wrong, painful and terrible.  He never had a chance to just be a lil boy.

If things turned out differently ~ I can't help but wonder......what would he have been like.

Would he have been into mischief?
What sports would he have played?
Do you think Avrianna and he would have gotten along?
I think he would have been a smart cookie. Don't you?
Would he have fallen in love and had a family?
What do you think he would have been when he grew up?

Even something is simple as.....
What would his voice sounded like?  This one hurts, not hearing him.

So today I sit and look at this Handsome Lil Man my son as become and dwell on all the lots dreams I had for him.  I will hurt, I will be sad, I will be angry for the Lil Boy my son was never allowed to be.

As for Tomorrow ~ tomorrow is a NEW day!

Tomorrow IS a day to CELEBRATE!  To celebrate MY SON'S BIRTH and celebrate another year that we were able to make wonderful memories with him.

Danny is here and I am forever grateful he is!  I am so proud of him!  He has taught me more then I will ever be able to teach him.  He is a warrior and My HERO.
I LOVE you Danny, more then you will ever know.

To add insult to injury I sit here and wonder how long I will have to be the mother my kids deserve.  Multiple Sclerosis is a scary disease that doesn't care how hard I've work to take care of myself, or that I have 2 kids the need me.  It as its own agenda.
My body is attacking itself, there's no cure, it doesn't play nice.
I had another MRI on Friday which has multiple new lesions (sores) not only in my brain but in my spinal cord.  Here are some photos for you to see what they look like.  These are NOT my images but close to mine.
This shows new "Hot Spots" active lesions (they are bright white).  I have a new significant sized one on the left side of my brain.
This one shows the lesions after the lesions have calmed down.  They are still there and the damage has been done, but instead of bright white they are more grey on the images.  I have multiple grey spots in my brain.  These ones are probably contributing to my concentration, balance, and headaches.  It's so humiliating when the Dr asks me to close my eye with my arm out and stand straight as I tip over or my favorite ~ sit down, close your eyes, arms out in front and try to touch your nose with your pointer finger..... I can NOT.  Yes, I would fail a field sobriety test without even drinking.  Sigh
If you are as "lucky" as I am you can get lesions in your spinal cord.  These lil bastards or "waegners" as I call them can cause alot of grief.  As there isn't alot of room for the sore in this space without them reeking havoc to your system.
You can see the grey spots in the spinal column here (long black matter between the vertebrae down the back)
 The Dr. believes the lesions in my spinal cord are the ones causing most of the issues for me at the moment.  I have at least 5 in my neck.  We didn't take imaging of my back, so we don't know for sure how many are down there, but the Dr feels I probably have more there also.  With the issues I am having in my legs and feet for the last month, she believes the lesions are more then likely lower in my spinal cord.  She believes the lesions are more along the side of my spinal cord as I'm only have sensitive issues (tingly, numbness, and electric), if they were more in the middle of the cord I would have more functioning problems. UGH!!  So I get to be on a steroid fun filled holiday,. I chose to try the lower dose oral steroids vs the BIG dog IV this time around to see if it helps calm them down.  I've worked so hard and be "healthier" and I don't want to just throw that away with being on these steroids.  I also was sent home with a couple different med pamphlets to go through.  It's kinda scary as MS meds are NOT fun.  I'm trying to fix one thing and there WILL BE something else getting screwed up.  SIGH!  I will do some research and ponder on them, but it's not a choice I will chose lightly...if at all.
This just SUCKS!!

Sunday, December 15, 2013

Party ~ it's always exciting

He's ONE IN A MINION ALRIGHT ~ Crowned head Minion
The cake I made him ~ along with Avrianna's help.  She made the Twinkie Minions :)

 Yesterday we had Danny's birthday party.  I can't believe that in about 1 week he is going to be 10.  AMAZING!!  I can't say the party went like I had planned it to, but then again what does.  LOL.

This party, I believe, was our smallest group we've had for his party.  I had invited 80 people, about 44 were going to come and due to illness' 30 people were here.  It was a wonderful group and we definitely had lots of food to eat with the last minute cancellations.  It's SO GREAT to get together with these families.  They are wonderful people that we are truly blessed to have them as our friends.

Our first guest to arrive.  Danny's girlfriend Wyllow.  Isn't she a doll!!  I'm happy to say that Danny's Special Needs Columbia car seat/stroller has found a new home.  Doesn't Wyllow look like a big girl in there :)   I Love that she will put it to good use.

About 30 minutes after the party started.  The BIG MAN from The North Pole came to visit.  Santa has come to all of the parties we've had for Danny....blizzards and ALL he has come!!  We LOVE this man ~ What a heart of Gold!!

Here's some pics of Santa and the kids ~ He's so good with them :)

 Madi and Henry
 Jacob ~ that smile says it ALL!!
 My Other One in a Minion ~ Avrianna
 Just warms my heart!!!
 Thank you SO MUCH Santa for coming to make Danny's party extra special!

Danny with his "Girls" ~  All four nurses together in one place!!  Of course I'm going to to take a photo.  I can't tell you enough how much we appreciate everything you girls do with Danny.  We wouldn't be the family we are today without you.  We LOVE you all very much and we are SO BLESSED to have you in our lives.

 What was to be a party and celebration took a terrible turn.  Just as we were finishing up some photos we notice that my 81 grandfather was looking very pale, diuretic, and for a few moments even passed out.

 Dan went into EMT mode and the 4 nurses went to work until the other EMT's and ambulance arrived.  So the party got alil bigger with the extra medical help. A HUGE Thank you to our nurses for being there and stepping in to help.
I moved the party downstairs to keep the kids occupied and so they wouldn't freak out.  They had fun watching a movie, Despicable Me 2 (of course).  Once the ambulance left along with 6 of my family members we were back into entertaining mode, but with ALOT more extra food.  Too bad the EMT's didn't stay for dinner.
Danny wasn't the happiest Minion as the party went on, so we put him in his daddy's recliner, took some pictures and sang Happy Birthday so we could cut the cake.      
 Singing Happy Birthday!

The party was a success, but I have to say I was thankful today was a low key day for us.  Lots of excitement over here, planned and unplanned.  I was alil bummed that with all the commotion that I didn't get a group photo of Santa and all the kids together like I have in years past.  At least we were able to get the ones we did get.  Until next year!!
Grandpa is doing well...they discharged him from the hospital that night with really no answers as to why or what happened.  I'm sure there are a few things that play a factor in what went on here at the house but thankfully the tests for his heart and such came back good.  I know what I saw and it wasn't just from low blood sugars or a GI thing.  We'll see.....kinda makes me wish I was at the hospital with him to get more to the bottom of this.  It's not my first time at that kind of rodeo, lol.

Monday, December 2, 2013

Danny Is going to be 10!! Birthday Card Shower

Wow my baby is going to be 10!!

For the 2nd year we are going to do a Birthday Card Shower for Danny's birthday.  If you want to send him a card for his BIG 10 we'll save it and open all the cards on his big day.

This is the 2nd year of Birthday Card Showers!!
As most of you guys know Danny has overcome and still faces many medical challenges during his short time here. Danny has his 10th Birthday coming up on Dec 23rd. I have people always asking what can I "get" him. He LOVES for us to read to him and when I saw this idea from a FB friend in which they had a card shower for her son, I thought what a wonderful idea. 
I am asking everyone that can to please drop a card, or a piece of paper with a Happy Birthday Message or maybe even have your children color a picture for him.
I ask you to take the time and help me celebrate Danny's B-day by sending a birthday wish through the mail. Thank You so much in advance for your thoughtfulness, you all are amazing! Feel free to send them whenever before Dec23rd and I will save them all up for his BIG day ♥

The Address to send his cards to is ~ 2686 Towerview Dr Neenah, WI  54956

December is HERE

I'd better get you caught up with November.   
The weather here has been so up and down.  One day it's darn near 50 and then it's in single digits with the wind chill.  It's way too early for that crap!!  On one of the last nice days out Ms Krista took Danny out for a walk....he just loves being outside.  Another reason we hate WI winters ... we're pretty much confined to the house not just because of the cold crappy weather, but the illnesses that are all over.  It's warmer and healthier to stay indoors. 

 The High School Girls Diving season has come to an end, but not with some exciting State competition.  I took Avrianna and some friends down to Madison to show our support to the girls that dive with the Fox Valley Diving Club along with Avrianna.  It was a first for me, but I'm sure it's not the last time I will be at the state pool.  Avrianna is looking amazing on the boards, but she has some pretty BIG shoes to fill with her team mates :)  Way to GO Hazel who won State Champ!! Congrats to Becky, who hit her head on the board during practice, but still managed to place 12th ~ Caitlin placed 18th ~ Lauren 22nd.  Woot Woot!!

 Now lets see what the boys can do!!  I've started a new "job" and I'm working the scoring boards for the diving meets.  It's exciting!  I have alot to learn yet, but by the time Avrianna is in high school I'll know it like the back of my hand.

Gunner just checking out what Danny is up too.  How cute!

  We've already seen a few snow flakes fall here n there.   The fireplace is ready and has had some pretty amazing fires in it already.

I got a start on decorating the house for Christmas on opening weekend of deer hunting.  To my surprise my schedule was open, and with Dan being gone Up North hunting.....Let the decorations BEGIN!!  I only did the basement as we had Thanksgiving here at the house so I left the fall decorations up upstairs.  Here are some photos ~
My Willow Tree Nativity on the stairwell.
 The Bar area
 The living room
 The whole basement view
 The corner when coming out the elevator.  With my window full of our Christmas cards of years gone by.

On Saturday Nov. 23rd, First Day of the 2013 Deer Hunt, I got a phone call from Dan around 5pm saying that one of the Shack members and a close dear friend, Jay Leggett had passed away.  I'm sure it was a very somber mood up there this year, and deer hunting will NEVER be the same without Jay.  Jay will be missed dearly.  Jay came back to the shack on his ATV 4-wheeler, they found him collapsed over the wheeler, and his brother did CPR until the paramedics arrived.  It was found through an autopsy that Jay had a massive heart attack.  The only humbling thing is that Jay died doing what he LOVED to do and in a place he LOVED to be.  His memory and stories will live on at The Newwood Club.
Jay 50,  lived in LA where he lived out his life's dream to be an writer, producer, actor and comedian.  Some of the shows he appeared in where "Ally McBeal", "In Living Color", "NYPD Blue", "Employee of the Month", "Factory" and he went on the write, produce and act in several movies.

Dan's 2013 deer ~ a very nice fork :)

We had ourselves a "white" Thanksgiving ... and of course Dan had to try out his new plow.
 We had my nephew over and the kids were out there shoveling.  They are definitely not related to me as I try my hardest to stay out of the cold snow and they just LOVE it.  Brrrrr

Danny and I stayed in doors.  Seeing we had no nursing he was "stuck" with the "head nurse".... MOM.   He had a great day!  Sporting his Turkey tubie whoobie :)

 Happy Thanksgiving !!
 Danny was smiles all day :)  Later I found this was the calm before the storm as the next day and still today he is having alot of discomfort.  So this smiley face is no longer and it's replaced with frowns and tears.  We are heading the Dr tomorrow in hopes to figure it out.
 The kids were warming up from being outside, before the guests arrived for dinner.
 We ended up having 13 people over for dinner.  It was a great day, with amazing food, and wonderful company.  Another perfectly smoked turkey!!

Then it's game on with Decking the Halls!  The weekend was full of me getting the rest of the house decorated and getting our tree up.  Here are more pics of the house
Elevator hallway, stairwell, and front entry
 Our 2013 Tree
Living room
 Living room

If you can even believe it there is an ice shelf already on Lake Winnebago.  Avrianna slept over at a friends house this weekend, they live on the lake, and even know the weather was gorgeous there was lots of ice.  Eeeekkkk!

There is more building and craziness going on over here.  We are finally getting our garage in the backyard done.  It's been another "Osero" project with dead ends and loop holes, but it's finally been approved and in the works.  The RV will get it's home soon :)

As I said before Avrianna has been doing amazing on the diving board.  This last week her coach had sent me these videos of her on the 3M board.  He is so impressed with her and I couldn't be any more prouder.  Her Coach is so excited that Avrianna is the youngest he's ever taught the Back 1.5 somersault 1.5 twist off the 3M.  She's a pro!  

Unfortunately since Thursday evening my MS has decided to show itself.  It started with both of the bottom of my feet numb and tingly, then I could get the back of my legs of tingle when I dropped my head down, now I'm finding myself dropping more things along with not so great coordination.  Working out has proving to be an even bigger challenge so I've had to cut back...but I'm going to keep moving.  I didn't work this hard to have it all go away.  With that being said I'm going to try my best to get this in check myself and not go in, as the first thing they will want me to do is steroids. But I do have to say 4 days of this and it's getting old real fast ~ UGH!!