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.)

When still legs meet the water.

There is something quite magical about taking a child with spastic quadraparesis, out of a wheelchair and bringing their non moving legs into the fluidity of the water.  Therapeutically it goes without saying, water is very healing and effective for range of motion and exercise.   Thankfully this summer, the warm weather has made the town pool at Treadwell Park warm enough for Daniel to tolerate.  He is getting tall, and heavier...and we find that we have to take turns working with him in order to give our arms and shoulders a rest.  Seeing how much he loves the water...  is such a joyful thing...  priceless moments as they would say in a VISA commercial, right?

Summer has been warm and cheerful this year, with Daniel receiving a hefty daily dose of additional phosphorus and calcium supplementation to really build up his bones.  We are still waiting to see how much improvement in bone health and strength has been achieved, but just seeing him kick and thrash and throw his body around in the pool....convinces me that there is quite clearly some degree of strength improvement.

But even the pool, as much as he loves it, is risky business.  One swallow of water will go down into the airway and cause problems with breathing so we have to be very careful not to ever let the head go into the water.   NOT always an easy task.  Sometimes even a splash from a nearby child can land in his mouth and cause a rattle of congestion.   But so far, no respiratory emergencies.  Watching the children flinging themselves off the diving board...or swimming underwater to retrieve a diving toy...I wonder if they know how lucky they are...but some things are just assumed...  motor skills... check...moving on.

I've been telling myself every single day, that a positive heart has to take control. And that as a strong woman and Mom...I will find a way to get through all of the ups and downs...  we've come this far.  Its a story of triumph, of compassion, of people helping people, and of never giving up on my child.  Never giving up on my family...and giving them what they need.  It is not easy....and quite frankly...more like a war than a struggle sometimes.  

Today is July 24th.  I have been looking for a job but have had absolutely no luck.  I am studying to take my property and casualty exam but that will take alot of time.  I am always on the look out for some grant, program, part time opportunity, anything that will help bring in funds.   Here is where I deep sigh at myself.  The piles of issues are still there, like a big thick wall that encloses me.  Every day I pray with all of my heart that this will be the day a miracle comes our way...  that somehow God will continue to shine his light on us.    

We are a Mom, a Dad, and three kids.  And Daniel is the one kid who needs 100% of our attention, 24 hours a day in order to keep him safe, healthy, happy, and lets face it... Alive.    That degree of attention steals away from making money and being prosperous...because 1) our expenses are ridiculously always increasing for him and 2) my career aspirations have been stomped on because I'm out of the work force for 10 years now.   I have an MBA and they all tell me, no thanks.

So there is some solace in the warmth of the sun, the ability to swim and be together...  God has blessed our family since June by bringing us closer together... and that has been wonderful.  

Daniel is a quiet, non verbal, teenage boy with big wide eyes studying the world.  I can only imagine what it must feel like for him to be immersed into a swimming pool!!!  You can feel happiness just radiate from him.

 Daniel is in Special Needs summer school until August 9th.  He is receiving physical therapy, occupational therapy and speech therapy there.  He is also receiving physical therapy and occupational therapy at home. We are doing everything we can to keep his scoliosis flexible and keep his positioning safe.

Father's Day and Swimming

Daniel has been doing well...  so far no illness or setbacks in our quest to quench his weak bones with phosphorus and calcium supplementation.  He will have blood work at the end of this week to see how much  progress has been made....and the surgeon for the scoliosis surgery will consult with the bone doctor (endocrinologist) to see when surgery will be possible.

Still having alot of doctors appointments, and dentist appointments and normal daily life.  Dealing with insurance, and equipment suppliers, and wheelchair repairs, and lift van repairs, and medications (oh my Gosh so many prescriptions) ...  its a jumble of non stop multi-tasking.  

Throw into this salad of life....  managing the life of a soon to be senior in highschool and a soon to be 6th grader...a house, and trying desperately to earn money with whatever spare part time work I can find.  Its a recipe for insanity.

But one saving grace has been the YMCA of Brookfield. They have a financial scholarship and we have been able to take Daniel to the therapy pool there several times a week to swim.  He loves to swim...his body responds miraculously to the water.  

This is the last week of school here in Newtown, CT... it officially ends this Thursday the 21st.  Then what?

Mommy anxiety is still at all time high...because just when I seriously start considering going back into Human Resources (which is not my desire, but my backgound) they all tell me ..."sorry, even with a masters degree and 15 years experience...you've been out of the workforce for 10 years and we wont even look at you"    Its kind of humbling, because you work so so so hard to become the best and the brightest you can be...and then you have to go away to be a full time Mom to a disabled boy...and BOY with that comes more advocacy and intelligence than ever.  But they won't even talk to you.  WHAT IS THAT!!!!!

So I  keep on going... taking care of these kids.  Praying for miracles. Praying for daily strength and good health.  Many blessings are here...we just need to see them.  Here are some pictures from Daniel's swim on Father's Day with John.  Swimming with Daniel is a great joy for us...

Daniel. And Water.

This is why I do what I do.  Daniel loves the water.  He can feel freedom in the water and when I swim with him I sense that he can use his entire body and not have the limitations of gravity.  

I had him in Aqua therapy for a long time with Angel Fish...but could no longer afford it.  Now I am the therapist..and he seems ok with that.  At least he swims.

Water is magical.  I don't feel right unless I'm near the ocean.  I don't know why.  I miss Naples Florida desperately because there...we can swim every day... multiple times a day.  I long for a chance to bring Daniel back to a warm climate.   Sarah and Thomas like it too...

Here are some pictures of Daniel in water.  All that I do...I do for him.... to provide him with the simple things in life that so many people just take for granted.

I dream of the ocean at night... and being near water.  Someday.  Someday. We will be able to do this every day.