Tuesday, June 21, 2011

Bored Song N Dance

Danny went to his first concert last Thursday to see Boogie and the Yo ~ Yo'z. What a WONDERFUL evening to be out. There were no bugs and the temps were perfect! Not to mention listening to some great music. Danny was able to listen to Eric play......his favorite lead guitar player. Not only does Eric play and mean guitar and other instruments BUT he works some magic architecturally. Yes ~ he put the ideas of our dream home into THE PLAN :) Poor guy.... he to work with us, but he does awesome work. It was so nice of Eric to acknowledge Danny being out in the audience ~ Thanks! Next time I will have to get a picture of Danny and the band when they are on break.Too bad the evening was cut short due to a poor attitude from Avrianna and her 2 friends that we took along as she had them sleeping over that nite. So much for me trying to do something nice. I learned my lesson and NEVER again will I take her n her friends out. Avrianna's always wanting me to take her n her friends out when we have someone over. I do and what do I get ..........attitude. They are "Bored and STARVING". Of course nothing there would do to eat so I said 30 minutes and we'll leave, giving us a few more minutes out. .... that wasn't good enough I guess as I was constantly asked if we were leaving yet. GRRRRR!! We left there and I was so upset and disappointed in the girls. They knew to stay clear and be quiet through dinner. I reminded them about how good they have it and I let them have it about being bored. Told them they could all sit in a chair ALL DAY LONG and not move ... then we'll see how bored they are. I was NOT going to tolerate them anymore that night. I was almost in tears I was so upset. I know it really wasn't that big of a deal BUT when Danny is out and everything was wonderful DON'T BUST HIS BUBBLE! Next time it's going to be just ME and My Lil Man to enjoy the night, away if we so choose.

LOVE that smile on his face ~ floating in the waterWe brought out the pool lift and gave it a try ~ I normally just pick him up (I still can do that now, but he's getting pretty big so......)He LOVED IT!And even better he LOVES being in the water. He's got it!!
He had the pool to himself and enjoyed every minute of it :) Take THAT!! I was told I wouldn't be able to get him in the water again when he got the trache.....when there's a will there's a way!

Avrianna and her cousin Tyler ~ sporting their glasses :)
I think the had fun.........

Here's my new Hobby ~ Cake Pops
And Truffles
They are so YUMMY!! And really easy to make. It's the decorating that is time consuming and detailed. Our first time we made them it was definitely a learning curve, but I think we've got it down already. Aleana and Avrianna have been helping me make them :) and the ideas are just flowing. So the house has been filled with these sweet treats. YUM!

The RV is ready! We needed to do some rewiring and altering to get the RV to work for us. The biggest thing was the shower doors had to come off ..... now there is tons of room for us to actually shower Danny in the tub :) Our first trip is around the corner and I'm hoping everything works out. Here it is with Danny's van attached to the back. The paint colors match perfectly...I couldn't have done that better even if I tried :) The green color is exact! I can't wait to drive it to see how it handles. Watch out here we come!!
The weather is still gloomy and blah around here with rain and overcast, but by the weekend I heard the rain might finally leave us for awhile. My plants are still loving it though. My Knock -Out rose bushes are just beautiful.
The garden is coming along too....I think some sun and warmer weather and it will just take off!

Friday, June 17, 2011

We are Blessed NOT Burdened

Special Needs Child-We are Blessed not Burdened
Poem written by my good Friend Kristi Mason

Just HAD TO share!!

You weren't like other children,

And God was well aware,

You'd need a caring family,
...With love enough to share.

And so He sent you to us,

And much to our surprise,

You haven't been a challenge,
But a blessing in disguise.

Your winning smiles and laughter,

The pleasures you impart,

Far outweigh your special needs,
And melt the coldest heart.

We're proud that we've been chosen,

To help you learn and grow,

The joy that you have brought us,
Is more than you can know.

A precious gift from Heaven,

A treasure from above,

A child who's taught us many things,
But most of all "Real Love

Wednesday, June 15, 2011

"Blue Sky July" A Mother's Story of Hope and Healing by Nia Wyn

I had just read an inspirational book about a mother's story of raising a Special Needs Child and I had highlighted MANY points that touched true to me and my feelings. Danny's nurse Gail is reading it right now and had made up this wonderful page for me full of the quotes that I had highlighted in the book. I had to share :) I hope you enjoy them
Thanks GAIL!!
*************************************************************************************I’m nothing like the girl I used to be
"The need to heal him is overwhelming
Beyond sense and reason.
He is not my nightmare.He is my son… I am lost in him.
… Joe has severe cerebral palsy,and if there is no cure,I want to explore his world with him.
I want to paint it brighter colors.I want to turn the music up.
I want the world to know he’s special…He gives the world unbearable intensity.He gives me insights I could never have understood without hime, and he gives me heartbreak.To separate these two responses would be impossible. He is equally beautiful and terrifying.
We’re ghosts of ourselves by the time we get here.
It is another world, this network that collects us from the mainstream.
He doesn’t reach out. He never does.…he doesn’t say or do anything,… nothing to work with, that there’s “no initiative”.
I want to know my son.I yearn for something to believe in.
This sadness still swallows me whole as the moon.
He has a will
He complains he can’t get a look in,and just can’t reach me anymore.
Love revolves around…signs of a past life that has lost all meaning.
Today I feel so lucky to hold Joe in my arms,and feel his heartbeat next to mine.
He feels my love.
My arms move for him, my eyes see for him; I bring the world to him.When I’m despairing, I always turn to him,to what I can touch and hold.
We are one. Quite inseparable.
We’ve lost an intimacy, Alex and I. We’re out of balance. He says I’ve disappeared into a world that he can’t access and that I only think of Joe these days. He says he feels left out, as if he’s running ahead or falling behind, as if we’re journeying without him. Alex says there’s no love anymore,no love life.…wonder how I ever got to war with my world … life’s a bitch!
Others say God chooses special parents for special children. Alex laughs when he hears this one. He says he still remembers his press trip to the orphanages in Minsk, where thousands of special children lay abandoned in iron cots, staring at the ceiling all day long.
We share one heart; we share one will. And sometimes we’re such separated souls

nothing worse than being with someone you love and watching the distance grow between you.…somewhere in the process we have shrunk ourselves. It’s too late to piece back together what is falling apart. Perhaps I don’t want to deep down. Perhaps there just isn’t the time.…like we’d been given “a life sentence”, with no explanation of what we’d done to deserve it.

ordinary days, the most extraordinary things can happen.…I need to find myself again.…it might help to write…

I don’t know if Sian knows what it means to me when I see the way she talks and plays with Joe, and when the sound of their laughter reaches me as I’m lying quietly listening, on my bed

…it’s amazing what hard work, love and faith can bring …it’s so important to appreciate what we have, while we still have it

I need to join the world again.

It is what I would have wanted for him had we been normal, and it is what, after countless sleepless nights, I still want for him now.
He is accepted....And to me it is enough. They don’t know him like I do. It’s the little things that make wonder. Sometimes I wonder if this happy child,that smiles and giggles by my side,might also want to die one day.Sometimes I wonder if the time just comes when it seems easier that way.
The world’s a topsy-turvy place,and despite all his best intentions,Superman still can’t move a muscle
it’s more important to be loved, than cured.
…one less barrier, one less thing to fight against.I am beyond the staring now.
Today I discovered that fear comes second to love.
The experts don’t see Joe like I do.…they don’t appear to listen to a word I say. nothing’s black and white,that kids can’t really be defined,and I’ve learned to take,one daybreak,at a time.
It’s hard to consider what is “necessary and adequate” for any human being.Especially my child. His is the life that sustains me,the blood that stops me growing old,his is the hand that when I die,I’ll want to hold.He’ll always deserve better.

The physical separation has a unique numbness to it.We can’t complete each other anymore.

I can’t stand the fact that I can’t heal him.
My whole world has cerebral palsy, wheather I am with Joe,or not.I’ll never give up……my heart’s become a warrior’s shield……I grow enough to know,that life is what we make it,with a child like Joe.…
when it was silver and nothing was broken,and there are times, just for moments, when silver turns gold.Life feels good enough to celebrate,exactly as it is.…I have arrived at a place called Acceptance.…life is reaffirmed. Generally the bad days don’t floor me like they used to.“Your lucky”, I say, “because you have two that love you, and to be loved is better than anything.”
For all life’s tragedies,I still believe in miracles.It’s him that gives me strength to fight for him forever,and the strength to claim my life back.…changed the way we see things… He’s changed the way we think and the kind of places we find meaning.…changed the way we grow.…we feel things more deeply……an inspiration…I have learned…never to underestimate children.I see that all kids are different,I see that all kids are special.Because sometimes, even if just for a moment,I wish you could imagine what it’s life for me.Just for a moment I’d like you to know,that within the shadow,there is a constant interference of light.…I wonder at how much he’s changed me, and the ways I’m so much stronger than I ever was before.…I appreciate far more.

If, without him, I’d ever have confronted life,and cared and fought for anything the way I have for him.
If I could have ever learned
all I’ve learned through my heartbreak…
Standing here a thousand things can cross my mind.
My heart has reshaped a thousand broken pieces,and for every moment I still want to heal him
there are a thousand when I know he’s perfect,
exactly as he is.
The most profoundly beautiful, and exquisite, moments I’ve ever had have been those I’ve spent with Joe.
…that my life is as big and as close as life gets,
and that I am truly,
We are still the proudest parents in the world!

Saturday, June 11, 2011


Catching up so it's a long one! Well really when isn't it ~ LOL.
Summer, or should I say winter, break has begun. Wednesday was the last day of school (I have a 4th and a 2nd grader now, OMG) and the temps were in the 90's with the heat index just about 100. For only the weather to drop out of the sky on Wednesday evening after another storm that passed through (yes we've been in the basement ALOT this year already) and now temps have not even reached the 60's. NOT NICE! I guess the weather is going to start to be more "normal" next week, so until then we really had to turn on the heat ~ in mid June???
I do have to say the sky was in all sorts of colors and clouds with this storm...unlike any I have ever seen.
The North West side of our Home
The South Side ~ Love the lightening strike!
Directly above our house ~ These are so COOL!
The East Side
With the end of the school year the school has been doing alot of fun activities for the kids. Here's Avrianna with her Principle Mrs. Renning at the Ie Cream Social... what's better then ice cream at school?
On Tuesday Dan and I volunteered to be chaperone's for a Field Trip to the Milwaukee City Museum. Not the day to be stuck on a school bus with temps almost 100, but the kids all had fun. Avrianna really liked the Butterfly exhibit ~ Or did the butterflies like her being there?
My bushes and plants are loving this weather. I LOVE the blooming flowers. The Rose bushes have buds on them but just haven't opened up yet, I can't wait!
The GREAT Hunter staking his ground....waiting patiently. You'd think these animals would get a clue and know by now that if you are in the yard YOU WILL BE CHASED! This week alone he's gone for 2 sand hill cranes (twice), deer, a turkey, and a cat. Really??
The pool is OPEN and it's getting alot of use already
My Sunbathing Babes! Oh Tis the Life!!
My good Friend Joe came over this week and put some "Personality" to my car....Thanks Calico, as always....I LOVE IT! You're amazing and so detailed ~ THE BEST!!
Check out my @$$ ~ LOL
My family symbol on the driver door :)Can you believe ALL of it free hand....it's an awesome thing to watch :)
Last night was the first night in some time...like since Feb/March that Danny didn't need any Oxygen through the night. I can only hope we can give that machine a break now for a while. I have an email into the Pulm Dr to see if we should put Danny on a C pap machine (ventilator) during the nite to help him breath and open his lungs, which we hope will slow these respiratory illness's down a bit. The Dr has been out of a couple weeks so hopefully she'll back to us with her opinion. We went down to CHOW on the 1st for appts with Danny but it was really a flop. Danny was able to get into see the ENT for a follow up with his ear, which is still draining...the Dr sucked out the goo (GROSS) and had it cultured. The culture came back with no bacteria but now Danny has a fungus there, great ~ NOT! From ENT we were suppose to see GI, suppose to be the key word here. We haven't seen a GI, other then when we've been in house in a LONG time. It's way over due and still ticking. Appts were running late that day and I had to get to my treatment on the other side of Milwaukee (I couldn't miss it) so we walked out of the exam room before the GI Dr even got in, UGH. I'm looking at see if we can get Danny into one of the GI Dr's that satellite here in the Fox Valley, as the one we would like to be followed by is nearly IMPOSSIBLE to get into see :( With Danny improving in his health we've been working his Lil Butt with therapies as he's been laxed with them this last school quarter. I'm sure he's thinking he thought it was summer break....BUT not with him. So back to work for him ~ LOL.
I've been a busy bee with end of school activities, dental appts, doctor appts, getting the RV set up, planning my summer activities. It's going to be a CRAZY busy summer..if it all goes smoothly it should be a FUN time. I have 4 possibly 5 parties planned here....Support Group meeting, Brownie/Junior bridging camp out/pool party, Eye Candi party, and a Block party. I'm looking at putting a get together with some of our "old" friends with their families....amazing when we all have families how time flies and we grow apart. It would be nice to start an annual reunion with them so we can stay in contact :) We have a family vacation planned to St Louis this summer and we're all excited to go. We just hope it's not so ungodly HOT. When we get back from there "A" goes to a week long summer Girl Scout camp. So READY.... SET.... GO for this summer!
Salon Osero was up and running....I had to wash those grays right out of my hair and then (with some help, thanks Gail) added some highlights in it. Now those grays will be camouflaged more and harder to spot :) Lil Man had to get a serious hair cut ~ He's so HANDSOME!!
Getting into clothes that fit better has been so emotionally lifting...there isn't that constant reminder EVERYDAY that I'm getting bigger. If you don't look at the # stamped and the back of the clothing it makes it easier. As long as I can feel good and look good, really what do I care. Not to mention going out on a shopping spree was a BLAST! I so appreciate all the kind words and support from my last post. Unfortunately there really isn't anything I can do. I'm eating right and exercising, but with the meds I'm on to control my MS and a DYSFUNCTIONAL thyroid ... I have to roll with the punches. I can only hope my thyroid decided to swing the other direction (which it tends to do) and I start losing some of it. I just had to post about it, get it out, and then I'm MUCH better. I'm so glad I was able to help others with it...that's the whole point of the blog. I received many private messages thanking me for posting as they too were having issues, thanking me for speaking up. Well you all know me by now ~ I say what I feel, I tell you what's on my mind .....even if it's about myself. Why not ~ If I don't speak up who will? I'm NOT PERFECT and I'm not afraid to put myself out there. My whole hope for the blog, the whole reason I started it is for an outlet for ME and OTHERS. ENJOY! We LOVE you guys and we're always excited to see you stopped by to check in on us.
Some of my favorite pictures of the Memorial Day Parade ~
So Proud :)All I can say here is "DOUBLE TROUBLE"!
So Sweet!!!