A BIG decision, being Christlike, Fibromyalgia, and Happy Birthday Daniel

November 13, 2013

It's cold outside, the chill and gray colors have slowly replaced our warm fall leaves and yesterday we had our first little snow fall in the morning.

I remember last year, anticipating Daniel's surgery with great fear but with great excitement as well. And now a year almost later, he has shown that it was definitely a great decision.

Daniels spine AFTER

Daniel's spine before!!

 

Making great decisions is not always that simple. There can be great risks involved that really completely lie on your shoulders. The life or death decisions for your child.  But I have felt all throughout Daniel's life that having a concept of "giving him the BEST quality of life that we can" has to continue to be the focus.  It doesn't mean we want him to do things that we do, even if he can't, like forcing him to eat and aspirate. It means preventing illnesses and dangers that will make him sick, and possibly fatally sick.

My life has been a non stop road of managing Daniel's care, dealing with troubled emotional relationships, facing the demons of depression, living in a world as a complete anomaly as a Mom. For instance,always being the only Mom pushing the wheelchair across the Night Hawks football

Daniel at football, number one fan, always with an entourage

field, accepting myself as a caregiver and accepting that I left a career behind to care for my child, desperately trying to make ends meet financially since only one full time job doesn't pay it all when you have a medically fragile child in your home, non stop advocacy and management of so many issues in the special needs world I simply can't list it, being there for my daughter as she went through High School and into college,

Sarah's graduation day 

and being there for my youngest son as he moves into his teen years.  Of of course there is a marriage of 21 years full of ups and downs with many days where I just cry myself to the point of dehydration, and then we face eachother and agree that we need to keep trying and do still have love, but need to heal,  and managing the home.

Probably should also mention, that I have been stricken with incredibly bad fibromyalgia to the extent that some days I am so stiff and in so much pain that I can't function.  The pain limits my enthusiasm for exercise, and my tendency to eat my emotions leads to weight gain.  Weight gain makes it harder to breath at night and then you don't get enough oxygen, and that prevents or slows down weight loss.   I spend every day in pain.  And sometimes the pain management is helpful, but other times nothing seems to help.

So the cold just rips through me like knives.  It is bad.  But I never falter in my daily trek of getting up to change Daniel and get him ready for school. 

Now we face the end of the 2013 year.  So much has happened since this time last year.  Good things and bad things.  Today, I am focused on birthdays that are coming. Sarah is 18 on November 20th. And Daniel is 16 on November 22nd.  

John says there will be no bonus for Christmas this year, and honestly I can't even think that far ahead. I have too many things juggling in every crazy direction.  I am in such a bad financial state most of the time, that just keeping things running is a great achievement.  Sometimes, it gets good, but then whammy bam bang boom, something goes wrong. Again.  And I carry on.

Working flexibly part time now, has been an interesting adventure.  I became licensed at the end of September for Property and Casualty, auto, home, life, etc.  for Allstate Insurance with an agency in Monroe, CT.  I really like the agent in the office, but he hasn't been able to pay me since August due to cash flow struggles. He is a great insurance agent, but his partner died in December 2012, and its been a rough road for him.   So ironically I'm working for free when I really need to be doing other critical Daniel related things.  And the money I am earning, is supposed to be paying bills.  I don't know what I am going to do.   

Isn't it ridiculous that my dream is to get myself into an excelerated BSN program and become a nurse.  If I can embrace the ugliest parts of the medical world, many which I have seen, I know that would completely love it.  

All I want to do is find a career where I can give back to the world.  I'm not sure that insurance is that place.   So how do I wriggle my way out of this when I can't seem to get to the end of each of month with a panic attack followed by a few days of meditation and prayer to revitalize my soul.  

So many people over the years have reached out to help Daniel.  In my heart, every time it happens, I just want to turn around and say God, What can I do?  How can I be your vehicle to give back.   

And the answer to giving back is never quite clear. Except sometimes a miracle happens when a child will meet Daniel, and learn about the world of a medically fragile child like Daniel, and that child will take on the task of volunteering, and helping a child like Daniel.  Years later, I learn that some of these kids are doing all sorts of volunteer work, and in a round about kind of way...letting them know Daniel, has given back.

I am just a 47 year old woman.  I'm no where near perfect.  I have many flaws, but I'm also not the career driven person that I was back in 2000.  I have an MBA, in Human Resources.

Before Work one morning...

Not only did I complete my degree while working full time, I was integrally a part of executive management and I truly most enjoy the training and development part of my job.  People make me tick, helping people, seeing them succeed.  There was nothing more exciting that promoting someone who had worked so hard, and seeing their face light up during that meeting when we promoted them.  I loved my job.  

As time went by, however, little Daniel in daycare became bigger Daniel with seizures, surgeries, sicknesses, and school issues.  His needs would make me worry at work.  Phone calls would come and I would have to leave, always promising to come in at 6 the next day.  My company didn't care about Daniel.  And the race home to Newtown worrying about him, because so bad that I would pray for changes.  

Daniel had his first hip surgery in 2004 I think??  I don't remember exactly. But by then I was no longer working.  I remember sitting with him, right after that double hip osteotomy and hamstring lengthening, and watching him in pain. I would demand that the nurses get the pain team, because he was having a reaction to morphine, and I learned how aggressive I needed to be to help my son.  It was during that stay at Yale when looking into Daniel's eyes I promised him I would be completely there for him.  No more nanny, just Mom.  No matter what it would take.

Now this also came at a time when our medical bills were so enormous, and our other bills were piled high, and we had exhausted all resources to make minimum payments, and more kept coming.  John's insurance didn't cover everything.  Daniel had to go on a long long waiting list for state insurance through a title 19 waiver.  So it was 5 more years of hell.  Of almost losing the house, of filing a partial bankruptcy to clear out the giant pile of debt, thankfully keeping the house and assets.  Well, whatever assets there were.  We had a very helpful and compassionate lawyer who helped us get through a bad time.   And of course, any past debt issues like that haunt you for years, resulting in problems from a parent perspective with Sarah's college.   I just keep going.  It's all you can do.  And I say it, again, and again, and again, and again, "this society, our social programs, our country, does not care about the middle class families who have this type of extremely debilitating circumstance." They want us to be living in poverty with absolutely nothing before they provide any help."   I posted an interview with Russell Brand a little while back, on one of my blog entries.  I won't keep going on that topic.  It makes me cry.

At some point, once I had become full time advocate, Mom, financial manager, care giver of Daniel, something inside my body triggered the Fibromyalgia.  I began hurting physically.  Hurting all the time.  Depression got worse, and I was not sleeping.  Everything got harder and harder, even though I tried to keep a smile on my face.  I kept wondering WTF am I being punished for now? 

As I've mentioned in the past, Daniel had a virus in utero called CMV, Cytomeglia Virus. It attacked the formation of his brain. The virus came from me, obviously.  And it is quite logical that the virus also was the trigger for the onset later in life, of the Fibromyalgia.  There is medical evidence, even though no one can admit it.  If YOU have never heard of CMV, and you are pregnant or planning on having children...please educate yourself about it.

So the journey goes on.

 Julie managing pain. Julie managing Daniel. Julie managing Sarah and Thomas with all of their unique needs and dreams. Julie managing the financial state of affairs. Julie reaching out for help. Julie going to years of pyscho therapy, which I am not afraid to admit.  And Julie begging her husband to deal with his own depression, anger, and physical issues...all to no avail.  So the anger cycle in the house was never broken, and Julie had to do all of the above, always never knowing when an explosion would rock the house.   With compassion, and patience, praying for her husband to understand things from her, well, from MY point of view.  I'm not sure that he has ever accepted the fact that I believe Daniel needs a full time care giver and "manager" per se.   He blames all of our problems on my decision not to work full time.  Which is completely ridiculous in my opinion based on all that I have done for Daniel's life.

So you see, there is so much when you peel away at the layers.  One thing attributing to another thing...  complicated.  I have always been a type A person, wanting to resolve problems. Desiring to talk things through. Advocate of therapy. Wanting to put things out there and face things.  But within my midst was the opposite point of view.  Such as, keep things private. We do not discuss our family issues in public.  Things should be kept quiet. People should take care of their own, and not others. And so on.  This, to me, is a torturous and lonely existence.  Because I believe that God calls us to be brothers and sisters.  I believe that we are on this earth together as one, and part of our love for Jesus is to let him live through us.  That is my spirituality. I don't prescribe to a list of specific "you must do this, and you must do that" or else you do not get into Heaven.  

ON my baptism day at Walnut Hill  community Church

I have let my spiritual self evolve by opening my eyes to the Lord and letting his spirit guide me.  A personal relationship.  And through our personal relationship with God, he calls on us to be loving and to help eachother.


So, no, I will never live in a bubble of "our family is a quiet, non spoken, private, affair".  As you clearly can see, I affirm that in my approach to life.

As do many many other great prophets, philosophers, and just people in general.  But needing eachother, and helping eachother, we are learning and growing in Christ.  To be Christlike, to me anyhow, does not mean to just care about yourself.  

And so, I reach out. I embrace others. I love the children, and the animals. I ask for help because I honestly and completely need help. The universe will present to me a miracle some times, and other times I face stress.  I love this town of Sandy Hook, CT. It is my home.  It is the home of my family.  I do not want to leave here, because the schools and the teachers are so incredible.  My friends and neighbors are beautiful people.  Yes, it is the place where tragedy struck on 12/14/12 and yet, the compassion and love that emerged from that surely made the bonds much tighter.   So I do everything I can to keep my house, to provide for my family, to support my husband while he works so very hard at his job, and to, again, keep the concept going of "giving Daniel the best quality of life that we can".

No matter what it takes.  

Please send a birthday card to Daniel, he is turning 16 on November 22 and we are having a "Card Shower" for him.

35 Bennetts Bridge Road
Sandy Hook, CT  06482

Thank you, if you are one of my friends who has come to the end of this blog entry.  I love you.  I am so grateful for friendships, for prayer, and people who genuinely understand how hard this journey is.  I will be forever grateful and forever have you in my prayers.  

Wow.  All that I just wrote there..  Came out of me like lava.  lol.

Wednesday morning, staring spells, the Hallway of doors and keys to resolution

Wednesday 8:01AM     November 6, 2013

Today started out with me so grateful to have Thomas offer to take the puppy outside.  I woke up, said a prayer, found a nice video prayer on YouTube.  Meditated for a few minutes.  Took my daily pile of medications and went to get some coffee.  Typically in the morning, I get up quickly and take the puppy outside right away, then I come in, feed the dog and make sure Thomas is all set.  Thomas is pretty independent.

Before I even take the dog out, I always check on Daniel and change his diaper because 99% of the time its a badly needed situation.  Today included.  After Thomas gets himself on the bus about 6:40am I begin getting Daniel ready for school.  I get him dressed, lift him into his chair and if the nurse isn't there yet I will start the meds and prepare the feeding pump for the day.

Today, Daniel was having one of his "bad" mornings where he cries alot and just seems very uncomfortable. The dog, Henry, was wandering the house but I couldn't get him because Daniel was so upset.  Then I heard screaming of my name coming from upstairs. I will refrain from the obscenities but the dog had a poop accident on the floor next to Daddy's bed.  Of course I was screamed at, did you feed him, did you take him out, do we have any carpet shampoo, get it for me now,  you know.  It's stressful I guess when the dog poops while you are trying to get dressed for work.  But really, why do I have to be the one at fault for every single mishap.

I decided that I didn't care.  And kept tending to Daniel who was acting kind of weird.  And by that time Henry was sitting at my feet looking kind of sheepish.  My gut tells me that when Thomas took Henry out, Henry did not fully do his "business".  He probably rang the "bells" on the door but no one was around to hear it. It's not his fault.  He is 5 months old.

My day flipped upside down in the blink of a flash and now I've got that sad sick feeling in my stomach again.  That "no matter what I do, you will never stop the mean nasty tone and lack of compassion for what you do to me" feeling.   And yet, today I have many things to do, including some work for Allstate and getting groceries.  That's a laugh.

Daniel was looking a bit bizarre once I wheeled him into the kitchen, just a funny look on his face so I took a video of him.  At the end of the video he fell into a short staring seizure, or spell, whatever you call it.  I wasn't comfortable sending him to school today.  It's good to have video coverage because you can send it off to the Neurologist.

Daniel.  I have to get back into the mood I was in, when I first opened my eyes today.  As always I check my stupid bank account, its an obsession of fear.  AND then I prayed via a prayer I found.  Through writing, as I am doing now, I can journey my way back to peace and out of the sad sick feeling that I have.  I will take the goodness of the universe and place it in my hands, hold it to my heart and let it warm me and fill  my mind with positive thoughts.  Positive focus.  Positive healing.  We all have a choice.  Choose Happy?  Choose sad??  Choose ANGRY??  Choose complacent?  Whatever.  As human beings we are actually strong enough to make the choice.

It's not designed to be easy.  Sometimes you even need to get some help to "choose" your way, to a better place.  But denial locks the door to choice.  Seals the deal.  Cuts the life line.

I have to call doctors today, schedule things like a sleep study for Daniel and a review of the EEG that we had done recently.  Positive results will come from my efforts.  I have to do this.  I have to push away the mean things, the hurtful things, the anger, the sarcasm, the lack of money, the lack of resources, the lack of independence, and do ALL that I can, to make the light shine bright on the things I have control over.  And also turn on the light to the hallway of doors where the keys to resolution can open them up, only if, and I mean ONLY if you have a positive heart and a spirit of faith and optimism.  I don't thing negativity ever brings anyone closer to a better life.   So, that being said, I'm grateful that I am a positive person.

Shine bright my light Lord.  Please keep my spirit and my faith strong.  I am only a 47 year old woman.  Not anything more.  It's your love that makes me strong and special.