Tag Archives: waiting

Thirty nine minutes until midnight….

14 Jan

Just Keep Swimming.....

It’s almost midnight.  1 hour and 32 minutes and our health insurance expires.

I’m not irresponsible.  Really. If anything I’m too responsible.

I have faith that my husband will be approved for an individual plan and that my son will be approved for the care he needs, but it is taking some time.

The next time I will be covered for medical care will be July of this year.

I’m terrified.

I feel the countdown in my veins the way I felt the anticipation of the feeling of falling –that gut in your throat verge of crapping your shorts feeling of falling- when I jumped almost three stories into the azure Caribbean bay almost 10 years ago. 10 years ago.  My body was healthy and strong. Complex in it’s nuances, but nowhere near as damaged as it is now.

1 hour 28 minutes.

I am without medical insurance because I did the right thing. I called customer service two years ago and again eighteen months ago and asked questions to make sure I understood the material, so nothing could possibly go wrong.  Unfortunately, customer service has, as it turns out, less of a grasp on the materials than I do.  The agency has concocted it’s own definition of one small word that is worlds apart from any other definition.  And it is that discrepancy that leaves me wondering what will happen to this broken body in the next six and a half months.

I paid $2000 per month for COBRA + copays for the three of us.  Because of this, I have to wait. F&$% being responsible. I could have just said screw it and lapsed and the boys may have qualified for medical care (better medical care than under our COBRA plan- at least for kiddo’s autism related OT and language therapy). But putting kiddo at risk of not having coverage, and risking spouse being unable to find a plan because of a pre-existing condition, was not an option.  And we couldn’t risk me going over to the medicare plan I had turned down due to group/employer coverage under spouse’s job because medicare was out of our financial means-more so than $2000 for COBRA and copays (or $750-$1000/month which is my share of that expense).  (Yes, you read that right-medicare more expensive out of pocket than COBRA/private coverage. I’ll share my comparison chart here once I update it.)  So for my forty five minutes on hold, I got an incorrect answer. And now the costs could be a burden until I die. Perhaps even longer.

I don’t even get my 45 minutes back to spend with my kid.

I am furious. I am sad. I feel, like my broken body has been pulling me away from my little boy since I got sick and now somebody who was completely incompetent in their work is pulling me away from that sweet child even more.  And I’m furious at the economy and the spouse playing Spore while I sweat and struggle to make sure everyone else is taken care of.  I want someone to share the energy and the drive for something better, for providing for our child, to share the load and the burden so I don’t have to be buried faster.

I want someone to say “Hey, I’m here. Slow down. We can do this together. We are in this together.  I won’t stop to rest while you carry on with your broken back and your unbalanced and heavy load. We’ll carry it together and then we can sit back and enjoy the world together.”

1 hour 14 minutes.

I warned my family last night, “If you are going to get sick do it tomorrow”.

I feel like there should be fireworks.

Or some sort of fanfare.

Or maybe we should have juggled knives or eaten fire or something before the 24 hour countdown to this particular midnight.

But regular activities, the danger of everyday things looms over me for the next 6.5 months.  On top of my already dysfunctional body. My personal time bomb.

My quest for answers about my newer inflammation – in my chestwall, my ribs, my joints, the inside of my eyes, the growth in my sinuses- is paused.  But the discomfort persists. It’s not white hot pain and pressure like my busted and deformed spine.  It is a deep ache when I move, like I feel asleep (in my pasty whiteness) on the beach for hours… My fingers, my knees, my ankles, my feet, my elbows, and my ribs feel like that sunburn pulling raw skin taut. But there is no aloe. And the pain meds don’t relieve it and I’m allergic to NSAIDS.  And it feels like pneumonia too, but it isn’t, it’s just the inflammation in the cartilage of the ribs.

This on top of osteoarthritis, and Type 1/Juvenile Diabetes, and a laundry list of other things. And I’m just so exhausted and I haven’t had a day off in almost 7 years.

So I’ll wait. And I’ll sleep. And I’ll hope. And I’ll sleep when kid is at school. And I am realizing how many things I do in a given day, even when mostly bedridden, that under these circumstance, could be risky.  And I can’t afford that.

I will have to make what art I can without flame, without grinding equipment.

For six and a half months.

58 minutes left.

I only hope that I make it through.  When I come out at the other end, I hope I will have moved on, but I can never forgive the time lost, that belonged to my sweet little boy.

54 minutes.  If I’m going to get sick, I had better do it soon.

My dark humor is coming in handy during this challenging (read: totally miserable and f’d up) time.

Things that occurred to me:

If I’m going to off myself, I had better succeed.  Oh well, 50 minutes left, surely any attempts to resuscitate me would fall after midnight, and no coverage and I know 911 and the hospital do not have a money back guarantee.

To paraphrase Dorothy Parker:

I might as well live.

The other thought I have:

That this is an opportunity to test some alternative (at home, dietary and physical therapy) ideas regarding my bone and joint pain.  Nothing risky, but perhaps I’ll track my personal routine changes here, as well as the results and the costs….

And to top it all off, school wants to put kiddo in 1st grade NOW. More on that tomorrow.

I think I am rapidly becoming exempt from managing all of this with any grace.

My smother calling to complain how I don’t bother to bring Alex to visit her or have coffee will seriously put me way over the edge. How far over the edge?  Like point of no return over the edge.

Please, nobody test this.

I have 44 minutes left. Perhaps I should shower now, so I won’t risk falling in the morning, when my coverage is nil.

I am a bit grateful that I accidentally ordered a refrigerator size box of bubble wrap from Amazon.com.  I’m thinking that a suit of bubble wrap and a helmet would be a good start for me.

Anyway, hugs all around.

Xo

B

41 minutes to midnight…..

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Old pictures and updates…

10 Mar

Found this today.. This is Alex and me. Just before his 1st birthday, he was admitted to Children’s Hospital in Boston for every neurological test except the one the doctor wanted him admitted for (an MRI).  The cribs are solid steel and built like tanks. The nurse told me I could climb in if I wanted to…So I did.

Bek & Lexo the Great (2004)

Bek & Lexo the Great (2004) *click for all blog entries about Alex...*

Anyway, I love this picture and so does Alex and I just felt like sharing on this sleepy Tuesday night. (Can you believe how big he has gotten? Can you believe that his head is now only a couple of centimeters smaller than mine? And mine is in the >98% to begin with!)

For those of you that are curious, we still don’t have results on my MRI from last Monday (yes, it has been almost 9 days. We were supposed to have the report within 24-48 hours.  The neurologist’s office finds this odd as well but hopefully the radiology peeps are just reading and rereading it and writing a thorough report).  I am still having the jello legs/weakness thing and the arm thing. I’ll post when we have more info.  Needless to say I am steering clear of power tools for the time being, but never fear! I have quite a few pieces in my arsenal that you have not seen yet! So I will be posting those and also planning for a “Move us the heck out of Florida to anywhere with an increased likelihood of Jeff finding a job and more options to help Alex rock even more Fund” grab-bag/mystery sachet/container o’surprises thingeroo fundraiser in the near future… So keep those eyeballs on this space and keep your fingers crossed that we get some sort of an answer soon so we can get back to whatever it is we do here.

To make it easier to stay abreast of Be Clever/CleverIndie.com news you can subscribe via email!  Click me!

Hugs all around,

xo

Bek

I love you with all of my…

22 Jan

I always wanted to make sure my child would know that I love all of him.  There are no conditions on my love for him.

I did not have that sense when I was growing up and I was told more than once that the parental love I was receiving was completely and utterly conditional. This is not an assumption, on my part, but a spoken fact. “My love for you is not unconditional”.

Anyway, I love my little boy unconditionally.

When I was pregnant with Alex, we had an ultrasound that indicated almost every marker for various chromosomal abnormalities, some of which are incompatible with life.

While we waited the three long weeks for the results of the amnio we sat and we thought. I cried. I think that almost six years later I am still a little dehydrated from those three weeks.  I couldn’t speak to anyone, not even my husband, Alex’s dad.  I did speak to my mother before the fear and sadness really sunk into my bones, and while I explained and broke down, I was called stupid and told that the only option was to terminate the pregnancy and that I shouldn’t be cruel, I should do it immediately and not wait for the amnio results. She ordered me to stop crying because the chromosomal abnormalities were my fault (unconfirmed abnormalities at this point, unrelated to any available family history or parental health conditions) and that I should accept my role as parent and terminate rather than make this child suffer further.

Between the tears, and the long naps, and the anger, I did some research.  This time period really defined me- the mom.  Everyone hopes and everyone dreams and most prepare for a healthy, perfect baby.  We all know that doesn’t always happen.  We all know that the best laid plans are frequently rerouted, rewritten, torn up completely and replaced by newer dreams that are sometimes shinier in very hidden, and very arduous ways.  This was when I learned that love doesn’t mean caring for someone in health only, which is a lesson I had learned first-hand years before, but it took this to understand the enormity of become a parent, the hopefully never-ending-ness of it.  And I learned that from both sides of the loved one and caregiver relationship during those few months, and since, in sometimes joyful and occasionally heart-smashing ways. I have learned to pick up the smashed pieces and reconnect them in new ways, a crazed mosaic of hopes, dreams, and love.

I realized that my parents were the one who could not accept damaged goods, damaged people.  I realized that my ability to love was not destroyed by the love that was conditionally given and taken during my 27 years (at that time).  It was then that the tears dried up (briefly, I am an emotional gal) , I pulled on my fleece slippers (my ankles were swollen, I couldn’t wear my combat boots or my ass kicking heels), and we figured out our plans. We figured out our formulas, our conditions, for how we would handle the information that the amnio would return to us.  It had everything to do with unconditional love and respect.

In a few months that revelation will reach it’s 6th anniversary.  The scare, the waiting, the distress, the crash course in everything from DNA to femur length to a parent’s love for their child, was an accident.  It was a terrible accident, due entirely to a scheduling error, as the test that set off the need for the amnio, and the horrible waiting, was scheduled too early.   I am grateful, though, that we were forced to define the why of our desire to become parents.  That ‘why’ still guides me when trying to determine our next step in helping Alex and helping our family, it is my personal mission statement, my grand goal for my parenting of Alex (which I will share in another entry, at another time).

Everyone says, before they have kids, that they will parent differently… I’ll never this, and I’ll never do that… The errors of my parents, so clear in my current year, are grand and horrible and shocking. I know I will and have already made mistakes that perhaps Alex will remember or only notice when he is in his thirties. But my hope is that he will know that I am human, and flawed, but that everything I did, I did with unconditional love for him, all of him.  I will never allow a day to pass without letting my kid know that I love him. No matter what.  I will never judge him based on what he cannot do, or punish him for his quirks, or demand that he behave more like so-and-so’s child (who is not Alex, not in any physical, cognitive, or emotional way).  I will provide the encouragement and support that he will try without fearing failure to such a paralyzing extent that he cannot try, so that he will have opportunity to succeed (can’t have one without the potential for the other).

Ok, onto the picture of the day…. With his PDD/Asperger’s, Alex is fairly inflexible regarding many things- word usage is a big one.

I have always told him, “I love you with all of my heart, all of my soul, and all of my brains too”. He giggles at this and replies “Brains!” in a way that is a little unnerving in a darkened bedtime room, coming from a kid who has never even seen anything zombie related (although we do have the Zombie Survival Guide, which was one of the funniest and coolest baby gifts from a dear friend. Thanks Ig!).  A little over a year ago I started replacing “brains” with other words, I do this sometimes to see if he is paying attention, and also to show him that a little flexibility can be funny and sweet and not distressing.  It’s best to do this sort of thing when he’s all blissed out on bedtime stories, lullabies, and good night kisses.

“….and all of my cranes too”

“…and all of my trains too”

“…and all of my drains too”

And he has always corrected me.

After school today, he played with his old Brio trains for a long time (so long that I went to check on him and his dad, as in our home “don’t worry unless you don’t hear anything” is part of our parental code)…

I had retired to the bedroom with my laptop and some tea and was typing away when I saw him at the door.

Trains

He had an armful of trains.

I put the laptop aside and he dropped a pile of trains on the bed with me.

“Mama,” he said “I love you with all of my trains.”

He was so proud and so happy. He is so literal and wonderful.  I was trying to help him and really he found a way to meet me in my goofiness.  In my heart I know he is still protesting my playful use of incorrect words and terminology, but that he ran with it, for just a moment, and put his own special signature on it.  And that gives me hope and strength and a warm, happy heart.

At the end of the day, it’s not about what we don’t have or about a loss of dreams.

It’s about the heart, the soul, the brains, and most definitely trains.

xo

Bek

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