Parker Has Incredible Strength Enveloped in Love

I believe that Parker’s life has great purpose.  He has such amazing strength and every opportunity he has, he shares his love and smile with others.  As a mother, this makes me so very proud.  But more than anything in this world, I want to take away his physical and emotional pain.  I want to somehow take away his worry and his fears…the fears that wake him through his tears at night, when his subconscious takes over.  Over these last two days we have been processing a ton.

The photo on the wall looked like this.

Last Thursday, we went back to the hospital to see the ophthalmologist to see how his eyes are doing under the pressure of his pseudo tumor.  Unfortunately, they look bad.  The doctor took a picture off of his wall of “inside the eye” and started to explain what was going on with Parker’s eyes.  Parker says, “Hey, since I was two, I thought that picture on the wall was a picture of an orange (because it kind-of looked like one).  I just thought you really loved oranges.”  Of course we all busted out laughing.  It reminded me that children can see things we don’t…

Then, Parker shifted gears and started asking a ton of questions and I could see his mind processing every single word with fright all wrapped up in his incredible strength.  I just let him ask…as I held my breath, not believing what I was hearing and witnessing…that this couldn't actually be happening with my baby.  But it was really happening.  Neither of us shedding a tear…we just listened. 

The doctor explained that because we had to go with a less effective drug (Topamax instead of Diamax), that it may not be very good at treating the pseudo tumor that is causing the papilledema in his eyes.  There is a ton of pressure on the back of his eyes. This is why his vision keeps blacking out.  He said that the back is not concave as it should be…Parker responds with “so it’s convex then?”  The doc said, “Yes, and the optic nerves and vessels are also all swollen.”  Parker then asked, “Could I lose my sight?”  The doc replied, “yes, but we will do everything we can and that is why you are here; so I can keep an eye on them.” 

He then explained that we are just trying to buy time with the Topamax in hopes that it will somehow lessen the pressure.  But …he felt there was a high likelihood that a shunt would need to be put into his brain to drain the cerebral spinal fluid to either the heart or stomach to lessen the pressure.  Parker asked if that would work; would that save his vision?  The doc said it could, but if it didn’t work, there was still one more option of doing surgery on his eye to put in a sheath to act as a protector of the optic nerves.  I know these types of procedures happen with other children but this is MY child… who has both autoimmune issues and immunology issues and any time any surgery or trauma occurs with the body, it is very scary because the body tries to attack.  But of course we will do whatever we must.

As we left, Parker went into his ultimate charmer mode and chatted away with the nurses about how awesome he looks with his purple hair and wishing them all a “happy nurses’ week”.  We proceeded downstairs to records because we ordered all his records from last week’s hospital stay…and again, as we passed the many nurses and staff he celebrated them and thanked them for being nurses.  He gave so many high-5s and cheered on many people; and I am certain he was coping at the same time.

After we got the records, we went to see my mom and grandma to deliver our mother’s day love.  His great gram asked how he was doing, and he busted into tears.  Then, he took a few deep breaths and said, “Give me a minute, and I will explain.”  Then, he proceeded to tell them both all about his doctor visit and smiled and said, I’ll get through this.  It will be ok. 

Laying relieves head pressure.

When I got home, I read the entire stack of medical notes from the hospital stay last week.  It confirmed all that we already knew…but it also had two pieces of info that concern me.  Parker has a lesion on his right frontal lobe…we knew this…but we didn’t know that the radiologist recommended repeating the MRI with triple contrast.  And there is a pars intermedia cyst on his pituitary gland.  They did an extra MRI of his pituitary because he is supposed to get growth hormone.  Endocrine told us that if anything is on the pituitary, then he couldn’t have the growth hormone because the growth hormone causes everything to “grow”.  This additional bad news is very hard to process as the growth hormone was going to hopefully help multiple issues.  I did call the doc about all this but of course we have to “wait the weekend”.

So now, we juggle our schedules so someone is home with Parker because his eyes feel a bit like a ticking time bomb.  He is having more head pressure and nausea.  If he begins puking, we rush to the ER.  We have to trust that things will get better.  We have to have faith that we are moving with tiny steps in the right direction.  We ask that all our friends and family continue to pray and surround us with their loving support.

Yesterday, I was at a “leadership conference” for work and one of the speakers, James Robbins, said something that really hit home for me, “Understand the power of 1,000 tiny steps.”  It reminded me that with every tiny step that we make with regards to Parker’s health, it is an accumulation of steps in the right direction.  But I also couldn't help but think…I also understand that power of the many who rally around our family and help carry us through this journey.  That is powerful love.

Wearing our blue for arthritis awareness month - May.