What I Know Today

My mom instincts were right, and that isn't always a good thing.  I knew something was going on with J the last couple of weeks.  I knew there was a reason we were supposed to be inpatient.  I knew we would find some answers there.  When we were discharged I felt relief, but I knew it wasn't over.  There was more... more answers to be found, more battles to fight.  There were more reasons for Jayson's admission.  And today, as we received difficult news found in Jayson's EEG report, my mommy instincts were confirmed-- something was not right. 

I successfully ignored this news for a good couple of hours before I opened up my ipad and started researching the big words I knew I intentionally did not want to understand.  I found myself crying, fearful, confused and overwhelmed.  So I closed down my Google searches and said a prayer that I might understand and feel comfort after talking with our neurologist tomorrow.

I called my sister; she is often blunt and practical.  Sometimes I hate that.  But today I wanted her to be blunt and practical.  I wanted her to tell me that these results don't tell me anything I didn't already know.  I wanted her to tell me to stop crying and remember this doesn't change anything about who Jayson is and why he is here.  She did; she said these things, and I almost felt better.  But then she challenged me.  She told me that before I learn more about what this really means for Jayson tomorrow during his appointment, I should think of Jayson today.  What do I know about Jayson and his brain and cognitive abilities today.  A diagnosis, condition, new information can come, but they can't change the fact that Jayson is a miracle and he can do many things.  So I'm accepting her challenge, whereas I have a feeling this blog post with this knowledge will help me through tomorrow and some rough roads ahead.

What I know today....

Jayson knows his mommy and daddy.  My smile can make him smile, and my absence can make him cry.  He gets a special smile every time Daddy comes home and picks him up and gives him kisses.  Jayson likes to be close enough he can touch me.  He'll be playing and reach out and grab my leg, foot, arm or hand; sometimes he just needs to grab my face and let me know he loves me.  My favorite is that he loves to sit on me.  As he plays with toys, he'll crawl around and then suddenly put his bum in the air and scoot back until he reaches my lap, leg or really any body part and then he sits.  He loves to sit on Mom. :)

Jayson knows frustration and how to ask for help.  He tries to do many things, without success, and fusses in frustration.  He often grabs my hand, or others' hands, and that means he wants help.  Currently he is trying so hard to put his own pacifier in his mouth.  He grabs the nipple and tries to put the back in his mouth.  After a few tries, he starts to fuss, look around for someone, and grab my hand.  He wants my help.

Jayson knows what he likes!  Yo Gabba Gabba has been his most favorite thing since he was about 4 months old.  Just hearing a voice of the characters or a portion of the opening song makes him squeal.  He also loves his Disney movies, namely Beauty and the Beast, Aladdin, and Frozen.  Jayson is obsessed with cars right now.  That is all he wants to play with, and any time he sees a car drive by he throws his arms out, kicks and squeals in delight!

Jayson knows his family, friends and therapists.  It is clear that he recognizes many of his grandparents, aunts, uncles, cousins, friends, neighbors and therapists.  He gets excited to see them, crawls towards them, cuddles them, gets excited to hear their voices, etc.  A perfect example of this is how Jayson responds to our good friend Danny Harper.  He loves him.  He goes right to him, wants Danny's attention, lays his head on him, or cues Danny to take him for a walk.  He doesn't act that way with anybody else, so Jayson knows that is something special he has in his relationship with Danny.

Jayson can be naughty. :)  He knows the things he should not get into and he goes to them first.  Clearly this indicates he is cognitively aware and more "typical" than we think.

Jayson knows fear and anxiety.  He starts to fuss and act out as we enter hospitals and doctors' offices.  He knows which nurses give shots and which ones take his temperature.  As much as he loves his ipad, he knows if we pull it out at a doctor's appointment it means something traumatic is about to happen.  And he knows that Mommy is there.... every single time--to hold, snuggle, comfort and kiss the baby after the traumatic event.

Jayson knows more than he often lets on.  He surprises us out of the blue by using a sign, or makes an initial sound of the word and makes us question if we heard him correctly.  He sometimes has break throughs in communication that remind me that he's in there.

Jayson is my miracle, my baby, my love and my world.  That will never change.  Not today, not tomorrow, not ever.  He's uniquely perfect.  His name means "healer" and that is exactly who he is.  He is healing my life, my world and my heart.  Even on days when I feel like my world is falling apart, it is because Jayson is changing everything.  He is teaching me what is really important, and to appreciate every moment.  He's teaching me to find joy in the small things, and to never take the big things for granted.  He is healing my heart and soul, making me a better person, better mother, better me.  Jayson is changing everyone he meets.  That is who he is and what he does.  And that won't change.  That's what I know today, and this knowledge is what will get me through tomorrow.