What's in a name?

It has been a tough week.  I've had a lot to write, but I haven't wanted to put anything down on paper (or Blogger, for that matter).  It becomes sort of "final" and real when it gets written.  But today, all I want to do is write.  I feel that if I could put my feelings on paper it might free me from them.  Or at least keep me from crying.

We had three important doctor appointments on Monday.  In this post I am not going to narrate exactly what happened.  Instead, I'm going to give you the background to know where my head is at, so that you might better understand our new {possible} diagnosis we are dealing with.

When I was pregnant with Jayson, everything went perfectly.  He was healthy, a good size, all organs were good and strong.  As a first time mom it had never even occurred to me that something could be "wrong" with the perfect being growing inside of me.  The labor and delivery was my favorite part of pregnancy.  I absolutely loved every minute of it.  The excitement, the anticipation, the epidural... and when it came time to push I forgot that I had been in labor for 16 hours.  I could not wait to see his perfect face.  And it was perfect.  He was perfect, from head to toe.  As the nurses took him from me, I sensed a feeling of urgency and I could hear mumblings.  They called for some specialists.  Mike told me his stats and initial exam looked great!  Healthy baby boy!  I could not wait to get moved to my room where I could feed, cuddle and bond with my little man.  When they wheeled me up, my baby got taken for more tests.  A doctor walked in and callously yet honestly told me, "Your baby looks like he may have down syndrome or one of the trisomies.  We're doing some more tests, but we won't know for a couple of days."  I was confused at why he was even saying this.  I asked about his oxygen levels, if he was struggling somehow, or how they know there is something wrong with him.  "Well he has a flat bridge, his eyes are spread apart, his nipples are spread apart, his face looks syndromatic, and there may be something wrong with his testicles."  Wow.  Not even an hour old, and he was already being given a title.  He was a "syndrome baby".  Although there was a humongous weight on my heart, I did pretty well to push it aside those first few days, and even the following weeks.  He looked perfect to me.  How could anything be wrong with my baby?

When Jayson was hospitalized that first day for RSV at nearly 2 months of age, I was hit head on again.  I had nearly forgotten about what the doctors initially said when he was born since all of his tests came back negative and he was a healthy, strong little boy.  I will never forget the face of the doctor who was sharing information during rounds with his team and he mentioned, "He is a 7 week old male with an unknown genetic syndrome."  What the hell did that mean???  He didn't have a syndrome!!  He was tested!  There was nothing wrong with  my baby.  He caught RSV, just like any typical child could.  I interrupted the team to ask what exactly that meant.  The response-- "Well it's obvious that he has a syndrome.  He has a prominent forehead, flat bridge, hypertelorism (eyes spread apart), low set ears, blah, blah, blah)."  We were back to this.  I thought we had determined he was okay.  Over the next two days I heard the words, "syndromatic" and "unknown genetic syndrome" many times as doctors and nurses communicated.  I have never in my life heard words that hurt my heart more.  They ate at my very soul by the hour until in the middle of a conversation, I collapsed on the hospital floor and cried harder than I had ever cried.  I made myself sick and ended up in the bathroom hoping to purge those words from my mind.  But they were burned and etched in my brain, forever.  How could anyone just label a child like that?  He was my boy, a person, a perfect being.  Why can't he just be Jayson?  Why does he have to be labeled?  Why do his unique features have to be a bad thing?  What did I do wrong?  Did I do this to my baby?

Social workers came to my rescue on that bathroom floor in the Riverton Hospital, and a note must have been put in his file that his mother was extremely sensitive about his diagnosis because people were much more cautious and sensitive after that day.  When he was flighted to Primary Childrens, we immediately met with a genetic team to go over his family history and do some more tests.  They were so kind and sensitive, that it wasn't as painful as I thought it would be.  And I really truly thought there was nothing wrong with my baby.  We got results about two weeks later.  All tests were once again negative.  I knew he was perfect.  No name, no label, just Jayson.

He was quickly admitted again and our world turned upside down when he stopped breathing suddenly.  I had become accustomed to their medical discussions about Jayson, and they did not hurt quite as much.  But what happened one night caught me off guard more than anything had in my life.  I was making friends with our new roommate whose son also contracted RSV.  Her little guy needed some comforting so we were on her side of the curtain talking and singing to him.  She asked if she could see my little guy.  I loved showing him off.  She passed the curtain, went to his cribside, smiled, and asked, "What special need does he have?"  I thought I had misunderstood her.  "Come again?"  I asked.  She repeated, "What special need does he have?  Down syndrome?"  This hurt worse than any of my previous experiences combined.  I had told myself that doctors were trained to search for problems.  They were paid to look for illnesses and conditions in children.  But Jayson looked perfect to me, and I thought he had looked perfect to everyone else too.  Apparently not.  This was the first time that a complete stranger could tell something was "wrong" with him just by looking at him, and it killed me.  That was the first time I really heard and internalized the label "special needs".  Naturally, I had a complete and utter meltdown and social workers were called once again.  In fact, they moved my roommate to a different room and made an order that I wouldn't have any more roommates during our stay.  Really, that woman did nothing wrong.  She was kind, concerned, curious and loving.  But I was not to that level of acceptance and understanding. 

It took many weeks for me to process Jayson's new labels:  "syndromatic" "unknown genetic syndrome" "special needs".  In the meantime, he started developing seizures.  We had an appointment scheduled to see the Special Care Pediatrician for the first time just days after he started having seizures.  I will never forget the kindness in the eyes of our doctor.  He cared so much, and he knew many things.  He examined Jayson from head to toe, listened to my concerns, and Jayson even began to have seizures in his office.  He took a deep breath, put his hand on mine and began to tell me and my husband that it seems our son has cerebral palsy.  He was rushed away for an EEG, given a couple of new medications, and we were sent home to digest this new label.  Cerebral palsy.  Only the worse images came to mind when I thought of this diagnosis.  I cried for days, and tried to lock myself away from the world, but it was the weekend of Mike's graduation.  I had to put on a fake smile, congratulate and support my husband, throw a party and thank everyone for coming when all I wanted to do was mourn the loss of my child.  No, he was not dying, but my dreams were.  My dreams of a healthy, typical little boy and the life I thought we had were dying.  It was a rough few weeks as we came to realize our lives would be anything but typical.

Over the next couple of months we came to realize that Jayson was not necessarily showing signs of cerebral palsy.  In fact, his first MRI showed it was a possibility, and his second MRI said it was unlikely.  His myelin in his brain was increasing and producing.  He was showing definite signs of low tone and muscle control, opposed to high tone and spasticity found with Cerebral Palsy.  That condition was ruled out.  We met with genetics a couple of times more and I was no perfectly comfortable talking about what makes Jayson different.  I recognize now that he does have a syndrome, but I refuse to let it define him.  Jayson is Jayson, and he will do things Jaysons do and in his own time.  No one can put an expectation or limitation on him.  I am comfortable with his labels, and I now use the terms syndromatic, unknown genetic syndrome and special needs often.  Yes, he is those things, but so much more.  He is inspirational and changes lives of all who meet him.  He is determined and never ceases to amaze me.  He never gives up, ever.  He is funny and has a remarkable sense of humor.  He is caring and shows all those around him how much he loves them.  He perseveres, regardless of the circumstance.  He is going to change the world, and he has already changed mine.

Today I'm trying to focus on these things.  I'm trying to remember and focus on who Jayson really is and a new label has been thrown our way as of Monday.  It is difficult.  I'm tired of the labels.  I'm tired of the appointments, the guessing, the not knowing, and the knowing.  I think I'm in a position where I just want to be.  One of our appointments last Monday was once again with Special Care.  We have a different pediatrician, whereas our last Special Care pediatrician moved to Texas.  Our new one is just as fabulous.  She examined Jayson and used words that brought back some difficult memories-- spastic, high tone, myelin, spasms and spasticity.  She used some medical terms I was not familiar with, and I finally just asked the question I really didn't want the answer to, "Are we talking about cerebral palsy?"  Yes.  Yes, we are.  Jayson's muscle tone is slowly developing from low tone to high tone.  Just three months ago our doctor documented in her notes that Jayson was extremely low tone, hypotonic, with both his upper body and his lower body.  Not Monday.  He was now in the category of high tone, an impressive amount of high tone.  His trunk and upper body were still low tone, but she expects that to change.  I showed her videos of Jayson's episodes and some of them are seizures, while she believes others are spasms due to his high tone.  We have answers, maybe, but they weren't once I wanted to hear.  Jayson is still young, so this isn't an official diagnosis at this time.  We will revisit this when he is about 2.  Although our doctor fully believes this is what is happening.  Jayson's CP isn't caused by de-mylination in his brain, however.  His is caused by whatever syndrome he has.  So although I want to give up labels and names and just let Jayson be, part of me wants to know more.  I want to know the truth.  What is Jayson's condition?  If we knew, we would know what to expect.  Would it be easier than slowly getting bad news a little at a time?  Or would it be harder to know all of it all at once?  I'm not sure, but I think I'm ready to take more steps forward. 

But today, I am going to try and forget all of the names, titles, labels and conditions Jayson has been given.  I am going to try and forget about any expectations or limitations.  I am going to snuggle my boy, play with him, cry as he does amazing things, and just live in the moment.  Because there is one thing I know for certain-- every moment with my boy is a precious gift I never plan to take for granted.