On Sunday morning, I was awakened by my eight year old in his usual style:  climbing on top of me and pulling my hair.  He keeps doing it, because despite my best efforts to get him to stop, it works every time.  It’s hard to sleep while someone is trying to give you a haircut using their fists.

He gave me that wide goofy grin that makes my heart flutter and lets him get away with…anything.  
Except on this particular morning, his giant toothy smile was short one tooth.
Not a big deal usually, since eight year olds are known to lose their baby teeth for more durable and ridiculously disproportionate permanent ones.
But I didn’t even know this particular tooth was loose.
And he of course, didn’t tell me.  It just peacfully ended its existance in the middle of the night and he must have swallowed it; that’s four out of five now that have made their way down his esophagus instead of inside an envelope.

The whole thing happened so quietly.  The requisite wiggling and dramatic updates on a loose tooth’s status that occur each time Superman goes through this childhood milestone weren’t there. 
In fact, Monchichi didn’t notice it was missing at all. He just looked up at me, his head cocked to one side as I stared at the empty space where the tooth used to be, wondering how long it was loose, upset that I hadn’t noticed in the first place.

Maybe it was because I was so sick this weekend.  Or maybe it was because I’m overwhelmed about some personal realizations I have come to in the last few weeks.  Or maybe it was just because I didn’t want to go through the motions of pretending that he was going to understand something so abstract this time and that I could force some normalcy down our throats even when  it tastes bitter and….wrong. 
Whatever the reasons were, I went against Typical Mom Protocal, and didn’t invite the tooth fairy to come celebrate tooth #5.  There were no fake notes under his pillow in the morning, or crumpled dollar bills.  There were no special treats to signal the departure of this renegade tooth. 

I.  Just. Couldn’t.  Do.  It.
And it doesn’t matter why, I guess.

We are on a journey, as parents of this very special little boy, where the road often winds around decisions that bear huge consequences.  For him, and for us.  And I have, over the years, taken many detours along the way in the hopes that I can guide him towards some more average experiences….the kind that don’t come with major side effects and that require cheesy fictional characters and some imagination.   But here I am, denying him the tooth fairy; and I think I may be sort of okay with that. 

Because I’m sort of tired.
EVERYTHING is harder because of him.
It sucks to see that in print. 
But it’s so true..

And sometimes, it’s all I have in me, to just get us to the dinner table, coax some calories into his mouth, and bathe the missed goals of the day right off of him.
Sometimes, it’s all I have in me not to give in to the dark side, the side that wants me to fail and fluster, to say I’m not strong enough to endure this special needs life and that I never will be.
Sometimes, it’s all I have in me not to get on top of the nearest table and shout “Hey everyone!! Look at me!  I’m a big faker!  I don’t have it all together!  I’m petrified on the inside!  I have no idea what the hell I’m doing! I’m smiling only because if I don’t, I may begin to feel the shards of glass that have wedged themselves inside my soul and then the truth will come out that  I. Am. Scared.”

So here I dwell today, somewhere between “Oh Mary*, you look great; how’s little Marcus? and “Oh Mary, how ’bout you f#!$ off and die.”

I  suppose it’s up to you whether you want to stick around and see how it plays out.

Friday Monchichi will be admitted to our local children’s hospital and will be put under general anethesia for what most people consider a typical dental visit.  Think of him, would you?  We have a great team of doctors and I trust them (to an extent), but ultimately God is in charge and I’m hoping to catch him on a good day.

And maybe, just maybe, the tooth fairy will understand why I didn’t summon her this weekend and will leave our copay under the pillow.

*Mary is a fictional character.  Though that is my mother-in-law’s name.  But I’m not talking about her.  This time.*

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11 Replies to “I’m Sorta Not Okay. I Guess.”

  1. sweet. beautiful. We are all in the foxhole together. I think we all want to believe we're strong and smart and we've all got our shit together, but really? We're all just thankful when we don't say "shit" in front of our kids.

    Am I right? Can I get an AMEN?

    Good luck with tomorrow, and every other tomorrow.

  2. You are a wonderful mother. None of us knows what we are doing really. We just wade through the water and hope to get to the other side with everyone still holding on! You are a wonderful mother.

  3. Carrie @ comfortedbyGod.blogspot.com

    Hi, Jo.
    You have blown me away with your bare honesty and sheer vulnerability. I dont have a special needs child, but I am someone with special needs. Im 39 yrs old–four yrs ago I was diagnosed with an autoimmune disease that attacked my spine and legs. I was severely crippled for several years and endured horrible pain. On the outside, I look perfectly normal (healthy even!). I used to get SO FRUSTRATED with other peoples comments, "You are so beautiful" "You dont look sick" "i wished I looked that good when i was sick"…. I could have just screamed. No one knew how horrible my life was and the pain that I endured. The only reason I kept my sanity was because of Christ. I spent a lot of time reading the Bible and praying.

    I truly thank God that He has granted me remission in the illness, and Im able to walk and enjoy life again. I still have to take all of my meds, so Im not cured. But, I can walk. And the pain isnt too bad.

    I truly, with all of my heart, will pray for you that God would hear your cry and have mercy on you and your family.

  4. Thank you so much ladies. Your kindness and support mean so much to this little blogger. Hugs to you all!!!

  5. My seven year old requires to be put to sleep for dental work. It is very scary. However, there isn't a dentist on this planet who will touch him otherwise, so, what will be, will be.

    I'm sure everything will work out great, but, I will say a prayer too.

  6. Jo – I loved this post, the honestly and fears of the dark side so poetically waxed. Where's the book version? yep I could read chapters of this stuff… but I'm sure this is not news to you 😀

    I will be thinking of your son Friday.

  7. Jo, My Nick also has to be put to sleep to have dental work. He does let me brush his teeth with a battery powered brush. How is you son with brushing.

    Nick is 22 and sometimes I have had to decide which "battles" I need to fight and let the others go. I spent years fighting the education system that he was EMH and not TMH until a teacher that I trusted without a doubt convinced me. Then we were able to focus entirely on the positive and doable things. He doesn't bath himself but he went para-sailing. He can't cut his meat at dinner, but he memorizes lyrics. He can't remember his birthday, but he remembers his aunt's. He can't go out alone but he rides his three wheeler on bike rides with me. He loves to eat out, so I will never have to sit alone in a restaurant. And it goes on and on. Anyway, don't beat yourself up, you are giving it your best and thank God you have many more resources to give him an early start than we did when Nick was three and started acting differently. God Bless You and all special mothers.

  8. bailey, my 9 yo autistic daughter, has lost her last 4 teeth the same way. she will smile and i will realize there's another tooth missing! anyway, i will be praying for you, him and the dentists on friday…be aware,tho, that there are never 'off' days with the Lord! He is ever present and willing to be Lord in our lives!

  9. I am a mother of a 5 year old girl and a six year old boy. My son was diagnosed at the age of 18 months with PDD-NOS. I read your blog all of the time. Your "superman" reminds me sooo much of my daughter..I've never commented on your writings because I agree with soooo many of them but this one I felt that I had to say something.. My son has lost 6 teeth so far. The first one I thought he must have knoked out, because like your son, he never gave any signal to the fact that it was loose..I never did the tooth fairy bit because I didn't think that he would understand..My daughter on the otherhand recieved the big "hooray" and the "under the pillow" reward..When my son was on his forth tooth, he woke up and looked under his pillow..I could have died. These kids are sooo smart. We get so caught up with thier schooling and therapy that sometimes we forget that this is thier childhood..Of course, the next morning there was money under the pillow ( followed by the guilt drivin trip to Walmart for the 100.00 Lego toy )…

  10. Hi Jo,
    Wow. Not only is your son lucky to have you, but if you don't mind me thinking and saying so, you are lucky to have you…wouldn't we all want someone who's that honest and courageous with us when we feel like we're in the fight of our lives?

    Thank you for sharing, I hope you experienced whatever relief may be possible in knowing that people are listening on the other end.

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