Opsoclonus Myoclonus Syndrome

I Am Not Crying

I Am Not Crying

I Am Not CryingI Am Not Crying

I swear, I Am Not Crying…yet maybe I am.  Maybe I sat in the bathroom (after disinfecting it) and teared up.  I feel like The Rock in the Jumanji movie where they just get to the jungle and he repeats to himself “don’t cry, don’t cry.”  Yet tears began to flow.

This is not normal.

I will never get used to this sight.  Ever.  These “chemo” chairs affect my soul on a deep level.  Seeing all these babies, children, and young adults…it does not get normal.  It is not just “another day, another treatment.”  It’s not.

Today, someone finished their treatment.  The nurses sang and clapped.  You could see their smiling eyes even though everyone has a mask on.  That warms my heart but still, there is a disease that has ravished these children.  Not okay.

Beginning

We started out in a room and then got kicked to a chemo chair.  These chairs suck.  Drapes separate people, yet the floor is packed.  Nurses move, gurneys come in, IVs get clogged, IVs beep, meds flow freely.  Oncology kids are getting tested for Corona.  The screams I hear are piercing.  It is protocol in these uncertain times.  I get that and respect that.  Honestly, I’m glad they are taking precautions but still.  This is hard.

Lost Count

I have lost count at how many pokes, flushes, bp checks, temp checks, weight checks that he has had.  How many drugs have flowed through his little body, yet it still tremors.  Countless questions about why he isn’t in remission and will it ever happen.  Then countless answers of “Brandi, accept this.  This is as good as he will get.”  The uncertainty of what is to come as he gets older.  I am overwhelmed with grief.

Don’t Get Me Wrong

He has come SO far.  I mean, he is no longer in a wheelchair.  He can walk from point A to point B.  I don’t ever want to sound ungrateful.  Yet, if you have never had a child who has a condition and monthly treatments, then you don’t truly understand what we go through.  I can still be humbled and grateful while still mourning his health.  Does that make sense?  It does to me.

There are 2 people, on this Earth, who actually know what we have been through.  Those people are Hunter and me.  No one else has walked this path.  My husband and children have seen a lot.  Other people have seen what I have allowed them to see.  I don’t break often but when I do, I know it is pitiful.  Those who love me want to remind me and comfort me and point me to the cross.  I truly appreciate that.

Yet

There is a deep-seated pain that is always present.  The constant feeling of “what next or when do we have to use the big meds again?” How I watch him move and analyze every single tremor.  Fear that sets in when someone comes in my house that has been sick.  I live in fear.  Yes, I know fear is a liar.  I know that God is bigger.  Also, I know that He has a plan and a purpose.  I know that Hunter is healed due to the stripes on Jesus’ back.

I know.

Sadly, I know that I’m human.  Fallible.  Subject to listening to the lies of satan.  I know the blessings.  The strides he has made.  I am totally aware.  Honestly, I’m just tired.  I am so tired.  This journey, I want to end.  Not necessarily for me but for him.  I don’t want him to tremor, have rages, OCD, treatments, exhaustion, fear, uncertainty.

I Am Not Crying.

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