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.

Mom does have an education, where did the career go?

About 9 years ago I was an up and coming HR Manager with an MBA and a strong desire to learn and implement everything there was about positive change.  I love working in the corporate design of succession plans and strategizing with Management over goal accomplishments.  I also had an open to door to employees who needed help, had questions, wanted to talk.  I worked hard, and I LOVED Human Resources from both the technical side of systems and technology advances to the people side of employee relations and benefits. I even topped off my resume with OSHA consulting and Safety Management within Manufacturing.   My salary was great, because I was a positive contributor and never turned away a challenge.  Exemplary performance reviews coupled with bonuses that helped keep our family going.  

I had dreams of moving up to a VP of HR one day, and always had hoped that somehow I could transition myself away from manufacturing and into medical technology.

There was not an association or program about Human Resources that I wasn't affiliated with.  I truly loved it. I still do.  I miss it.

But I fell off the planet when my company "downsized" my position and gave my job to another senior level employee.   I interviewed diligently and I was flown everywhere, had countless meals and meetings...  in 3 cases that year (2003) I was ONE of two finalists.  Always beat out because I was the younger of the two and had less global experience.

Now....today....I have been reflecting on the pain of having lost my job. And the pain of realizing that the job search world was a cold hard war.....  And that Daniel's needs pulled me into another place in my life.  All the while living with a spouse who feels that I "sold OUT" by not going back into a full time HR Role.

I don't think I sold out.  I think I realized that all of the education and work can't replace advocacy and the BATTLE which is from a different war. The war of maneuvering the system of special education and disability needs.  Not mention being THERE for a sweet little boy who needed his Mom over the span of many years full of surgeries, and doctors visits, and hospitalizations, and tests....etc etc. etc.

But as I sit here today, reflecting, I realize that I could walk into an HR office, and given a little bit of leg room.....pick right up where I left off.    But they won't even call me back.   So why even keep trying.

The world punishes you for being a dedicated career woman who chose to side track and dedicate herself to her special needs son.  A Mom...  just trying to give this boy a great quality of life in a catch 22 world that puts a GIANT price tag on the disabled and strips a career Mom of her ability to embrace her years of training.

And I have days like today, where I wonder which way to go.  I have a passion for the medical world, and GOD would I love to go back to school for Nursing.  There is a place where all of my skills would embellish a new trade.  I have not a sqeamish bone in my body and I'm a tough ass when I need to be, but I love people and have passion that spans all kinds of situations.

I have a need to make money....because we can hardly pay the bills, make the mortgage, and our cars are petty decrepit. My daughter is facing college soon, and Daniel needs so much.  Keeping our home, and keeping our sanity ride on the same level of importance.  And both have been a massive struggle....

So Where Did THE CAREER go...or is it simply in a state of metamorphosis.  How can I find my way back into nursing school, and actually be able to afford it...  Is it possible for me to make that dream come true, because I do have time for school...  and time for flexibility.

I feel like my family needs me to be the best I can be.  But I struggle with just exactly how to get there when they also need all of me at the same time.

What do you think?   Jhasselberger@snet.net or text me 203 788 9602   Julie