All of this at some point in my head has been logical.  When I am in my zone of taking care of business there is little room for anything emotional to complicate the logic of getting it done.  Yesterday was not so.

Guardianship: An enormous amount of court documents to be filled out.  Hiring an attorney is one option, or doing it yourself is another. The process entails a TON of paperwork, a court visitor to the home and court hearing with a judge.  I had the court visitor yesterday.  She explained to me and to the girl that because of her disability, her rights to make decisions about her life (money, housing, medical) are gone.  Not exactly the moment in a mother’s life that you dream about for your child. While logically that all makes sense, my heart was heavy.  Very very hard.

SSI: Going from minor to adult would seem like a logical process.  Seem is the key work.  Not so.  Because there is so many contributing factors with child support, arrears on unpaid child support, her fathers potential SSDI claim that would factor into her income, and the unbelievable amount of paperwork, AND I was still under review for last year, I opted for the lesser of monthly support for her until the dust can settle and all those others factors have time to fall into place.  The  nice man/case worker said that if I was to decide at a later time, say when she finishes high school, or a few months down the road, that if I want her to start paying her fair share AND be willing to document every penny,  then come in and tell them that and it can be a quick change (not sure anything with Social Security is quick). Once I submit the pay stubs from my income for last year, then the case is closed as far as the girl being a minor and I can go out a win a million dollars and it won’t matter.  It will be done, but not until he gets the final stuff.  So, I can see the finish line but not yet cross it.  More time sitting at SSA and more time gathering paperwork to play the game.  AND she still has to go through 4 hours of testing next week to determine that she is still disabled.  Of course she is still disabled.  In the midst of over an hour of questions, I realized that it is incredibly freaky that a man at a desk in a social security office can click a button and see ALL of my bank balances and personal information.  Freaky cannot even being to describe it.

Life:  Time for back to school and football season sport physical at the doctors. The youngest boy is showing some signs of a potential endocrine dysfunction.  Poor sleep, or in his case, sleep apnea, can cause low levels of testosterone–likely indicating the lack of puberty and big growth.  Adding to that, on exam the doctor felt his thyroid and said that for a teenager it was very enlarged and full. His lack of growth is not an easy topic as he really wants to go from boy to man, and he feels so frustrated that it may be potential result of sleep apnea and seizures.  Since he is still within the growth plates being open, now is the time to do anything about these hormones if it indeed is that either one is causing trouble. Add in another overnight sleep study and a few new doctor appointments for him.

I get home from all of this (keep in mind I also taught two yoga classes, drove all day, back hurts, return to full-time work tomorrow, etc).  I did my very best to explain it all to the man in my life–though he cannot begin to comprehend the emotions involved, the stress of it all, and the feeling of hopelessness for the future–he is very  supportive, but he cannot truly understand.  While I know that he would take all the stress if it was that easy, he cannot.  He cannot fix her disability, he cannot fix the system.

The entire evening was tense and ended up with me losing all of my ability to hold together the bullshit of unfairness that a disability brings to a person’s life.  From the days of sitting in the pediatrician with a screaming 3 week old unable to soothe her to the people who shunned her in elementary school, to her dad walking away, to her not having any friends, to the constant battle at school, to the huge fear of the future, to the task of finishing up guardianship, to getting a will to claim someone as back up guardian, to the day of testing for her redetermination of disability, to the process of managing her money, to the very very real fact that the battles will be part of my life for a very long time.

And then what.  Who will go to bat for her down the road.

I cried like I probably never have.  I cried for the girl.  I cried for me.  I cried for the boys.  I lost all my logic and allowed the deep-rooted feelings of sadness and fear to make their way to the surface.


One thought on “Logic

  1. I can understand your sadness. At every step in the life of a child with a disability, there are challenges…more challenges than a parent of a child without a disability can imagine…just all of the time spent in the waiting room to see doctors or at the emergency room and all of the medical studies, along with trying to hold down a job, would be enough to make a lot of parents throw in the towel. You have held on…congratulations! You are allowed those tears!!

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