Tuesday, November 19, 2013

Children Die

I know a lot of really great parents.  They put everything they have into their children.  They put their careers on hold, wear the same pair of glasses and blue jeans for ten years straight, move to be closer to the place that is best for their kids. They will lose their house, their friends, their sanity to find a cure or a least a reprieve for horrible diseases. They do it all; reach the wall; and then do more.

And in the back of their heads is always the notion that if they do just a little bit more, sacrifice everything, reach every doctor, talk to every other parent dealing with the same issues, the answer will come.  Their child will be saved. Because that is what we are told.  Science has come so far.

And no matter how many times you are told that there is nothing to be done, the answer in the back of your head says: "But try again; there must be something more. So and so's brother's girlfriend's cousin's niece went to Borneo and was saved.  Surely, there is a Borneo waiting for us." 

And even if we don't chase after Borneo and we decide enough is enough, subconsciously we wonder.

As expecting parents, we were never told that our baby could die. Or if we were, it was only "a possibility" just as winning the lotto jackpot is "a possibility".  So when we are faced with the reality that our child is going to die, we can't handle it.  That is NOT the way it happens.  There is a medicine for everything.  Aren't we inundated with commercials everyday stating just that!

So parents sacrifice their lives.  Children endure extra procedures and pain.  And in the end, they die anyway.  Why? Because we aren't told that children die.  We aren't allowed to talk about children dieing unless it is in the context of freak event--completely abnormal.  But there is nothing abnormal about children dieing.  Until modern history, it was abnormal to have all of your children survive to adulthood.  But today, when we are all conditioned to believe that the norm is living to be an octogenarian, parents are afraid to say things are going bad.  Parents, in the midst of sacrificing everything for their last chance to save their child, are all alone because they feel abnormal in losing a child or like they didn't push hard enough.

No parent should have to shield their pain when they need the most support because society can't handle the truth.  Children die. They die every day.  Their parents are wonderful, amazing parents who put everything into their kids, yet the child dies.

Please don't hide from it. Please don't make a parent facing their worst nightmare feel isolated or that they have to protect you. Children do die.

Monday, November 4, 2013

No Voice

I have had nothing to say for a very long time.

At least, that is the way it has felt.

I've had no desire to blog or write in any way.  I've been hiding from myself again.

These last couple of months have been some of the hardest I've lived through. (And, so you don't worry, the Dancing Queen has not been declining.  In fact, she had a cardiology appointment and she has remained the same--no better, no worse.)

I've been dealing with my own health scare--two large nodules discovered on my right thyroid.  One so large that it completely replaced the right thyroid and caused me great discomfort (okay, pain), lots of choking, and some difficulty breathing.  And they still don't know if it is cancerous.  They don't think it is, but I won't know until Thursday for certain because I had the monstrous thing removed a week ago and I don't see my doc until then.

And while I know that it is probably not thyroid cancer because (let's face it), I have all of the symptoms for Hashimoto's Thyroiditis.  And I know that thyroid cancer is one of the "best" cancers to get because it is highly treatable.  Having this scare, well, scared me.

I've never felt more adult than I have in the last couple of months.  The responsibility of taking care of my family has weighed enormously upon me when I faced the possibility that I might not be able to do it. What would happen to my family if I can't work??????

The Dancing Queen's medical expenses alone would cripple us in a matter of months. Would we have to stop her Hizentra infusions? Would that end her life sooner? We'd definitely have to pull out of hospice care for her until she gets really bad.  There would be no more therapist for the kids.

Juxtapose all of those worries with the Dancing Queen's total descent into demonhood upon entrance to kindergarten and I've been a wreck.

DQ did NOT transition well.  She was worried, scared, and a little (maybe a lot) paranoid of how she would be treated and seen by the other kids.  That led to anger, aggressive outbursts, and many phone calls, meetings, and plans.  In September, I was consumed with my doctors' appointments and procedures and DQ's endless parade of horrors. She would make what she perceived as a mistake in art class and start throwing chairs and kicking classmates.  I would be called to the school.  Or she had a bloody nose on the playground and the nurse took a shortcut back after cleaning DQ up (so DQ could play longer) and DQ started kicking and screaming and flailing about in the hallway because she thought she was not returning to recess.  I was called when she wouldn't stop screaming after thirty minutes and was kicking the desks in the principal's office.

There was talk of suspending DQ from school in early October--6 weeks into the school year.  Suspending a kindergartner! I can't even tell you the anger, sadness, and confusion I felt.  I spent a solid 48 hours researching, talking, planning, and crying, only to have everything resolved and the proposed suspension completely removed from the table.

My life has been a giant ping pong match (ala Forrest Gump) with my head the tiny little ball being smacked between DQ's immediate problems and my overwhelming worry about addressing these problems and those to come if my sickness is worse than expected.

And somewhere in all of my worry, frustration, and fear, I lost my voice.  I'm trying to find it now.  I have to work through this and the only way I know how is to write and put it out there.  So, I forced this blog open today.  I made myself write even though I didn't think I had anything to say.  Perhaps I'll get there again.  Perhaps this blog will just be full of forced ramblings.  Either way, I hope it helps me find some semblance of normal in this new and very scary world.
Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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