Super Z update

It was going to be a good day.  I was going to make sure of that.  I like to take the days we go up to Devos for Zayne’s chemo pills as a little date for just him and I.  Heading in we were listening to our inspirational music with our little Biggby hot cocoa.  Well…of course I had a coffee.  We arrived and went through the routine.  Get our badge, up the elevators, check in, called back for vitals and finally in the room we go.  I looked down at Zayne and realized I forgot his cream.  Oh shoot.  Ugh, mom of the year.  Well he will be ok…it’s not an IV it’s just a little poke.  Not gonna let this change my day.  We are good.    Sure enough they come into to draw blood.  He doesn’t even notice that they don’t have to clear cream off his arm.  The nurse rubs the alcohol on grabs the needle.  “OWE….That was NOT one of the soft needles.  You’re MEAN…you’re NEVER doing this again.”  Yea…he was pretty ticked.  “Buddy buddy….it wasn’t her fault it was mine.  I forgot your cream.  But look how brave you were.  And it was just a little poke!! Good job!!”  I could feel what I said register.  “You forgot my cream?  You did MOM.”  I was laughing before he could finish.  He did not find it so funny. But I figure I can laugh knowing that he is ok and won’t be scared for life or I could beat myself up and feel guilty which would have ruined the rest of our day.   After that we got the good news from the social worker that an amazing company is going to give us a gift card to buy Zayne a bike that will attach to mine!!  Which will make family biking a possibility!!! She also requested we get a soccer ball with a bell in it!!  So he would know, even without seeing it, where it was.   We grabbed his poke prize and chemo pills and left.  In and out!  Just the way we like it!  On the way home Zayne was watching a show on the Ipad and my brain replayed the conversation with the social worker.  I think I was more excited about that bike than Zayne was!!  I can’t wait for family biking!!  Then I thought about the ball and it took me to a memory of a couple mornings prior.   Ayden and I were playing catch and Zayne wanted to join.  He came and stood about 4 feet from me.  “Zayne come over here by me and then Mom can throw it to both of us.”  So Zayne trotted over to where Ayden stood which was about 10 ft away.  “Ok..Ready Zayne?” I said getting ready to throw. He scowled and said “NO.”  “Why not?”  I said pulling the ball back into me.  “MOM….You know I can’t see you.”  He said pretty nasty. Which is what he does.  Frustration or embarssasment always comes out as anger.   “Oh gosh buddy, I’m sorry I didn’t know…but that’s when you just say ‘Hey mom I need to move forward a bit so I can see you better’ Ok?” He gave me his snarled nose and eyebrows down face.  “MOM….YOU DID TOO KNOW.”  And as quickly as that story entered my brain started from there.  I wonder how he rides a bike.  It’s crazy he can ride down the driveway without getting hurtWhat if he goes completely blind?  Do we move him to a school with other blind kids?  It’s already a little hard to find friends his age and things to do that he can do.  He doesn’t like to go to the movies because he can’t see it.  He can’t play ball/catch with other kids.  Going to a playplace isn’t ideal . He panics if he loses sight of Ayden.  We stay home a lot because he knows where everything is, he knows where he can ride his bike, he can swim, and he knows our playset.  Jake and I have noticed if we leave things out that aren’t usually there he runs right into them.    I wonder if he will be able to drive?  If he can’t he will have to use public transportation.  What if he gets mugged because he’s blind?  Will he live on his own?  Will he ever marry?  Ever see the face of his first baby?   Before I knew it I spiraled into a depressed state.  Tears fell freely.  I was thankful for headphones, knowing my boy didn’t hear any of my battle going on in the front seat.  Ugh….Jessie stop….It was going to be a good day.  Thinking like this is NOT a good day. I tried reminding myself to be thankful that we weren’t in and out of surgery like other children.  That we didn’t have to go to Devos every week for a drip, that we no longer had a port and a fever was just a fever.  I tried to remind myself that if sight was the only thing we lost we were doing ok.  And if we have handled brain surgery this should be easy.  But it didn’t seem like it.   Brain surgery seemed like a sprint but going blind… that was for a lifetime.   I reminded myself that some parents lost their children and mine was still here.  There is a lot to be thankful for.  But my tears and emotions were not listening to reason.  The night did not get better.  I found myself waiting for bedtime to come so I could just let go for the night.  I tucked this kids in and got real close to Zayne’s face.  “Can you see me buddy?”  He tilted his head slightly.  “Yup…yea I can see ya.”  He said with his adorable little boy head nod.  I covered his good eye with the palm of my hand.  “Can you see me now?”  He looked around distantly.  He did not make eye contact.  “Not really…no.”  I felt my shoulders droop.  “What color are my eyes?”  He looked around to what he thought was my eye.  “Mom…I don’t wanna do this anymore.”  I pulled my hand away.  “Ok sweetie!  I get it.”  I kissed his cheek and felt his arms wrap around my neck.  “Love you Mom.”  He said in his little gruff voice right in my ear.  Tears welled once again.  What if he forgets my face?  What he forgets all of our faces?  I can’t imagine not seeing my mom’s face.  I squeezed my throat gave him a quick kiss on the nose and told him I love him too.  I retreated to my room.  I couldn’t breathe.  I just wanted it all to go away.  I wanted to text my friends and ask for prayer.  I wanted to call Reba and beg her to help me.  I wanted to take my boys on a vacation somewhere where these haunting thoughts wouldn’t get me.  But the reality was they were getting me…and they were winning.  I prayed sleep would come fast and my dreams would be tolerable.