But Wait! There’s more…

Move, keep walkin,’ soldier keep movin’ on and lift your head, it ain’t over yet.

-Toby Mac

It has been a long time since I have sat here typing out our story, but I have been writing this post in my head for the last three months.  And then rewriting it.  There is so much to say, but the words wouldn’t come out the way I wanted or needed them to.  How do you describe something so huge and so invisible all at the same time?  When I figure it out I’ll let you know.  In the mean time, here’s what I do know.

It may sound funny but I have recently come to terms with the fact that Dane and I are the parents of a child with special needs.  Boom, there it is.  The dreaded catch phrase.  The one all parents cringe at the mere thought of let alone it being said aloud.  It caught us completely off guard.  I think you reach a certain level of complacency once your kids reach a certain age.  You wipe your brow, and say “Whew!  Dodged that bullet!”  Okay maybe not literally but you know what I’m talking about.  I certainly never expected that after nine years of being Connor’s mom I would all of a sudden have to re-learn how to be his mom.  Would have to basically get to know him all over again.  But that is exactly what we’re doing.

Connor was officially released from the care of Kartini doctors last month.  We all felt a huge weight lift as we walked out the door for the last time.  We were FREE!!!  Except we all knew we weren’t really.  True, we are getting the hang of this eating thing.  Most days he is able to manage his food on his own, meaning he is able to tell us without anxiety what he feels like eating, and he is able to eat it.  On a really good day we may even hear an “I’m hungry.”  You have no idea what a big deal that is.  So ARFID you tricky beast, we are on to you!

However there is this whole other piece now that we’re only beginning to be able to deal with.  We haven’t mentioned it much before now because ARFID was so big it was all any of us (Connor included) could do to get a grip on that.  It was around the same time he was diagnosed with ARFID that he was diagnosed with General Anxiety Disorder, or GAD, as well.  One mental illness seemed insurmountable to me, but two?!  I couldn’t wrap my brain around it, and here was this sweet, adorable, goofy little boy trying to do the same thing.  UGH!  It broke my heart.  The worst part of it is that these two illnesses are so intertwined that one exacerbates the other.  When he is anxious about something he can’t eat, and not being able to eat makes him anxious.  Around and around it goes.  Anything and everything has the potential to set off his anxiety.  It isn’t just related to food though that is still at the top of the list.

We have always told Connor that we’re on his team.  That we will advocate for him 100%.  Last term Dane took a speech class.  One of the last topics was to write a speech in honor of someone or something.  Dane chose to write his about Connor.  About how inspirational Connor’s fight was to him, how Connor chooses to keep moving forward no matter how hard the day.  As Dane was preparing for this speech he came across an organization called Project375.org that was started to raise awareness for what they called “invisible diseases” or mental illnesses.  They aim to break the stigma surrounding these and educate the masses on what it means to live with things like Bipolar disease, or an eating disorder, etc.  I haven’t seen my husband that fired up about anything in a long time and it was pretty awesome to watch as he showed Connor the website, and told him about the speech he was writing.  It is important Connor know he is NOT alone.  Important because right now he feels very alone.  His anxiety has made it difficult (if not impossible) for him to do normal things like go to school or enjoy family gatherings.  He misses friends, he hates being stuck at home all the time.

The hardest thing I hear from my son is the phrase, “I wish I was normal.”  My automatic response has always been that it’s overrated.  I say this because I want him to know that it’s okay to not be- but honestly my deepest most sincere wish for him is that he could just be a normal kid.  Do normal kid stuff.  I don’t want this hard stuff to be a part of his life.  Why him?  Why us?   I don’t have any answers.  Not good ones at least.  And I’ll be the first to admit I am the world’s worst parent of a child with special needs.  I am not equipped to wrangle a nine year old throwing what looks like a major tantrum in public.  I actually snapped at a woman who was in my mind staring rudely and with a heap of judgement at my child and I during said “tantrum” which in reality wasn’t a tantrum but a very scary panic attack.  I felt awful about it later, but come on.  Either stop and help me or just keep going.  I couldn’t have been more embarrassed while sitting in our accountant’s office going over our taxes while Connor wailed about something his sister was or wasn’t doing.  He was just as eager for us to leave as I was.  Then there is the guilt.  Not mine, Connor’s.  When all is said and done he comes to us with tears streaming down his face, feeling lower than low.  And we hold him, and love him.  We pick up the pieces, and we keep walking.  We try to look at the progress we’ve made rather than how far we still have to go.  It is not easy to do this.  The road is oh, so long.

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One thought on “But Wait! There’s more…

  1. Oh Heather, you are a great Mom. It’s impossible to even write a comprehensive book on how to be a parent of a child with special needs, because every situation, every family has a different dynamic. You will make mistakes, as all parents do, but because of Connors special situation, it may seem like you are under a magnifying glass. Snapping at the woman would feel uncomfortable for sure, but the message that Connor got is that you will advocate for him, just like you promised. I would like to read Danes speech. Love you all!

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