The Creation of an X-Men: Taking Notes

Consistently taking notes did two things:

1.  Made me hyper aware
2.  Revealed much more than I could handle.  (You’re probably thinking, No! Look at you handling all your shit!  I don’t know if barely constitutes as handling).

It sounds a bit unbelievable when I say obsessing about a stressor relieves my stress.  I can’t explain how this makes sense but, well shit, it really doesn’t make sense.  This is just how I work.  When the weight of my obsessions nearly suffocate me, I write it out, I say f*ck a lot and I can breathe again (I have anxiety.  Can you tell?).

In the past, (as explained in the previous post, I Hear Something), I use to find peace of mind and comfort in the unsweetened truth.  Although I still favor raw honesty, after Liam’s first diagnoses, I just wanted to plug my ears …laa lala la laa.

Anxiety or Intuition?

New parents are always subject to another’s judgment, suggestions, and dumbass opinions. This is always annoying and even more so when it’s from a non-parent or parent of an average bear and you have a child who’s different.  At the time, Liam didn’t have any diagnoses besides the heart defects, which no one knew about yet (remember?).  I was very open with my thoughts that Liam was different and admitted I hadn’t figured it out yet.  Now, everyone else had their fingers in their ears…laa lala la laa.  My openness didn’t stop the judgment, the suggestions, or the dumbass opinions directed toward me AND Liam, but it did set my feet in stone of how I was going handle my life and his from that moment forward.

I carried a little notebook so I could jot down something as it was happening.  Big things, little things, seemingly irrelevant things, E.V.E.R.Y.T.H.I.N.G!  I noted what he was learning and how, what pissed him off and calmed him down, behaviors, accomplishments, failures, injuries, interactions with certain people and their characteristics and mannerisms, and surroundings!  I color coded entries with highlighters and sticky tabs for easy reference.  Researching everything on Google was the next step (naturally).  Taking notes and seeking answers from Google was surprisingly comforting.

Google Was My Confidant

Shortly after Liam turned 3, it was time for his annual cardiology appointment.  The cardiologist asked if I had any concerns.  Oh man!  Did I!  I explained that Google had become my new best friend (she warned me against this).  In typical best friend fashion, Google was keepin’ it real.  Every time I confided in Google, it was telling me scary shit that I didn’t want to know but I asked for it so I valued the honesty.

I showed her the patches on his skin that apparently only I could see.  I told her I believed he had speech apraxia and dyspraxia.  My thoughts were supported by suggesting this was the reason he walked late.  This is why he JUST learned how to walk up stairs but still can’t go down.  This is why he can’t talk, not the tongue tie.

I remember she interrupted me by saying “okay, what did Google say?”  I was hesitant to tell her for a few reasons:

1. I never told anyone what I was about to say to her.
2. If I say it out loud, I can no longer deny it to myself.
3. What if Google is right?  What the f*ck then?  I wasn’t made for this!

Google Says He’s an X-Men

I tried to play it cool and act like it was far-fetched and I’m just in need of Xanax (I always am).  I told her on top of the dyspraxia and speech apraxia, Google says he may have autism but most definitely has a sensory processing disorder, which affects all his senses immensely.  She was listening!  I vividly remember thinking, shit! She doesn’t think I’m crazy.  I went on to tell her that I pieced together everything I noticed, everything Google already told me and his multiple heart defects.  Google said he has a genetic disorder called Trisomy.

I’ve always said, “If he’s ok, I’m ok.”  But what if he’s not?  What if he’s not okay?  If he’s not ok…I’m broken.  Fragile, I went forward to Our Journey to Trisomy 13.