May 30, 2013 SUMMER IS HERE!!!

May 30, 2013

It's a BEAUTIFUL day here in Sandy Hook, CT .  Seriously, the sun is shining and its supposed to be summer time warm today.  Hard to believe that June is around the corner.  May has been a whirlwind of concerts, plays, events, stressful things, sickness, broken washing machine, more concerts, Sarah getting her license, and more.   Daniel, in his quiet life, watches it all smiling from his wheelchair.

I am so very proud of my children.  Sarah has just excelled over the years and followed her heart.  Now she is getting ready to go off to college in August.  Unreal in so many ways.   Thomas is my little sweet big guy.  Taught himself how to play Trombone this month.  And can't wait for football.  I have to find something to do for the summer.

I still have not been able to get Daniel anywhere that he could swim, although I know how much he would love that!!

Fun with paint at school!!

Water time!!

He's been sick with an upper respiratory infection that created alot of congestion.   Off to the ER we went on Monday and the x ray did not show pneumonia!!!  Thank you GOD.  But he's pretty sick, even today not looking too well.   But his resilience never ceases to amaze me.  I honestly never know what to expect with this kid.

I am sitting here in my office writing.  My office that is also my bedroom because John exiles me in the middle of the night due to my snoring.  I have to remember to call the ENT to look at my sinuses.  I never have time for me.   Anyhow, just sitting here thinking about how many things kids are doing in the Spring, whether its sports, theatre, dance, or whatever.  Graduations every where.  Proms, and weddings and life changing events for families all around.

And then, there is my Daniel.  He is my buddy.  I adore spending time with him, and it is nice that he clearly likes his one on one time with Mom.  I just wish for once, there was some special event. Some special exciting new thing for Daniel.   So I have been praying that somehow we can figure out how to get a dog for Daniel.  I can't afford to buy a puppy these. days.   But a friend of mine is helping me reach out on Daniel's behalf to possibly acquire a dog for him.  That would be a big event!!

All I can say is, please be grateful for the gifts that your children have.  Don't be sad that they are growing up and becoming independent. It's what is natural and part of life's process.  Moving on and carrying forward to the next moments of life.  Time doesn't ever stop.  I have to remind myself to be grateful for the positive and wonderful family that I have.  Well, children anyhow.  But even with our dysfunction somehow they manage to be smart, resourceful, talented, and loving kids.

It's May 30th.  The sounds of birds and lawn mowers.  And in here, the sounds of nebulizer, vest treatments, oxygen machine humming and feeding pump whirring and beeping.  I don't like congestion.  Too many scary variables there.

Enough for now.  Praying for Daniel to get a dog somehow.  Praying for our family and that financially things will get better. Praying that I will finally pass my P and C exam. Praying that God will touch our hearts and heal the things that harden our hearts.  I am grateful.  Very grateful.

Peace out from Julie, Mom to Daniel, (bi-lateral diffuse Polymicrogyria secondary to CMV infection in utero. Non verbal, feeding tube fed, wheelchair, seizures, respiratory problems, othopedic problems, severe gastrointestinal reflux.)

Senior Prom and The Wizard of Oz... Emerald Green....

May 20, 2013

Green.  Everything is green and damp and fresh.  Over the past few weeks Spring popped into life and lawns turned from brown to bright bright green.

It's a strange time of year for me as I watched Sarah get her drivers license and go to Senior Prom all in one week.  She wore a beautiful Green silk dress with Rhinestones around the waist.  Long red hair and blue eyes.  After the pictures as the kids drove off in the bus to the Prom I cried.  But I went from there to Thomas's school that evening.  

Thomas was in the school play the Wizard of Oz.  Playing as the Winkie Guard for the witch.  Green. The Emerald City.  Searching for answers in the emerald city.

Sandy Hook.  Green.  The symbolic color of our beloved Sandy Hook School. The green ribbon magnets are on more cars than not in this town.  And as normal events here for Spring have unfolded so have many many other special events for the town since the tragedy of 12/14.

Green is even the school color of the college Sarah will be going to this Fall. Wagner College, New York City.

Green everything.   

It's just a rough kind of morning though.  Monday and all.  My washing machine is broken now, and I have an incontinent 15 year old boy.  Which means MEGA laundry.  Ugh.  I have to drag it all to the laundry mat.  


I have not been feeling well either.  Of course I need to lose weight. But more than that, the blood pressure is high, my resting heart rate is fast, and my sinuses are incredibly sore.  I sometimes have chills and I'm more often than not extremely fatigued.   When I motivate to exercise I get even more sore from the fibromyalgia and just want to curl up under blankets.

Daniel isn't getting any smaller though.  If I don't get myself into better shape what good will I do him.  It's like I'm in a trap most days, trapped by everything around me that I have to do and trapped by the fact that I don't have freedom to just do whatever I want either.

Daniel had his annual IEP meeting last week.  That's always the headache of the year.  It went fairly well, but I always come out of the meeting wondering and feeling guilty.  Wondering if I am doing enough for Daniel, and knowing that there  is so much more that I probably could be doing.   

Insurance company denied him hand splints last week as well. And I hear that they are denying many more claims now.  If I have to pay for denied medical needs there is no money left over for other things.   I'm scraping, and I'm stressing every day.  
s.

It's the way of the world I guess .  Trying to find my way back to a solid faith and solid positive energy focus, but I'm inherently weaker than I seem.  I need to get to church.

But, for today I just need to go to the laundry mat and get the kids clothes done.  Visiting with my favorite "head" doctor today.  As the depression gets cooking when I think about the changes that are coming when Sarah goes to college.  Green.  Green makes me feel hopeful.  Sarah in that green dress summed up the beautiful red head that she is with glamour and personality.  Thomas helped Dorothy by giving her the broom of the Wicked Witch after she melted her.  Green.  

I wish I had a Glenda the Good Witch

The green ribbons on our cars, symbolizing memory of the 26 angels killed here on 12/14.

How the heck am I going to make it through all of this.    Daniel needs me, Sarah needs me, Thomas needs me.   That is about where I am at right now.

Hyper Vigilant... and a rainy day

Today is May 8, 2013.  Its Wednesday.  It's raining out today.  The leaves are all popped out and things are green and colorful outside.  A very welcome change from the crap weather we had, and all the bad things that have haunted us this past winter as well.

Daniel was revisited by the demon called seizures last weekend.  A Sunday night, around ten. Shaking and white in his bed.  Had to do the rectal diastat thing to stop it.  Thankfully didn't have to call 911, but it was close.  Now I am back to that state of hyper vigilance wondering and watching what will happen next.  An EEG is scheduled to see what has changed.

New for me....  I now seem to have a problem with high blood pressure.  I have been monitoring it for two weeks, and today it is 170/110.  I don't know.  Weight, yes thats a problem.  Lack of exercise, yes that's a problem. Lack of sleep, definitely a problem.  Stress, every day.. no reprieve.  Sugar is even slightly on the high side.  True, I have never been this heavy in my life.  Yet, I am 46, and I am completely exhausted.

But as I sit here listening to the rain... Daniel's school just called twice.  Medical and educational issues to resolve.

There are so many things I wish I could be doing to enhance Daniel's life, make Sarah happier, and give Thomas more than what he has.  But I am struggling to keep depression in check, you know.  And although I generally feel happy, its hard to be happy and "hyper vigilant" all of the time.

This morning I looked in the mirror and asked myself when was the last time I prayed?  Couldn't quite remember.  Need to do that, for sure.

I am worrying about Daniel right now as I write this.  Always wanting to be with him.  Because two days ago I found out that one of the sweet children in our CMV group passed away.  A beautiful boy named Jorden whose family live in Seattle.  Aspirated on his own vomit.   This family has been through hell and back with Jorden and they maintain every ounce of faith that a family should.  I am so amazed by their strength.  But just as well, I am also deeply saddened by Jorden's loss.  He was a fighter.  Had been through so much and always came out with an award winning smile.

We always wonder don't we?  Will the day come when I will sleep through the monitor and wake up to find Daniel still and blue in his bed.  I know how morbid that sounds.  But that's what Mother's of Medically fragile children have to live with.

So when the seizures came back.  I sunk 10 feet into the muck.  It will never stop to be a concern because he will always a deformed brain.

Today as I listen to the rain fall.  I have to get ready to go out.  And run typical errands.  But I feel like crying and I'm dizzy.  I should go over to the doctor, but I'll call them just the same.

There is no way for me to put into words how life goes in a life like this.  Medical issues, fear, lack of sleep, incredible happy times, incredible laughter, tears, anxiety over money and not having enough, wanting to do as much as I can for my entire family.

And they say I should do things for me.  They say "take care of Julie" .  So I try for a day or two, but the damn stress comes right on back when the pressure sets in.  "Need to get to CVS", "Need to have enough money",  "cars are old and dying", " Thomas needs new sneakers"."Sarah needs a Prom dress" ....

Oh it is not enough enough that I just have to keep the boy smiling and happy.  Is it.  Sheesh.
Being a mother, the kind of mother that I am.  Is feeling just like this rainy day right now.  Gotta kick myself in the ass and keep being vigilant.   I have no choice.   I LOVE THEM MORE THAN ANYTHING IN THIS WORLD.

Nuf said.