He is perfect.

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Last week I took my son to a local organization for a screening of his behavioral issues.  We were to tell him it was a fun special school where he would go play games.  He was excited to go and he did really well– at least in my opinion.  He hopped on one leg and balanced, did vision and hearing tests, identified objects, drew a circle and scribbled other things, answered questions, etc.  I watched my sweet boy having so much fun and a single tear fell down my cheek.  Then another and another.  I felt silly… but I loved watching him be happy.  I also felt so sad because I knew they were just observing him to see if he had developmental delays.

Long story shot, they think he shows signs of being on the autism spectrum.  He has to go for another long observation.  I heard the words come out of the PhD, whatever his official title is  and couldn’t breathe.  I felt such anger.  I was mad at him for labeling my son.  I was mad at him for thinking anything was different about him.  I was mad at him for saying that social skills could be challenging for him.  I was just mad.  My son was and is perfect.  As soon as he said the words I felt the same way I’d felt nearly 11 years before when my friend called to tell me that one of my best friends had passed unexpectedly.  I threw the phone in anger.  I couldn’t bear to hear another word.  The words seared my face.  Then the tears took over.  I thought about that because I was feeling the exact same way — but no one had died.

Thinking about it…I realized that something did die.  The plans I had for my son.  The ones I made when I delivered him.  These words… autism spectrum… suddenly meant that my son couldn’t have everything I wanted for him …or be who I imagined he would be.  I started to grieve.  I was so sad.  I had a panic attack in front of the observers and excused myself to the bathroom.  I felt so much pain.

I’ve thought about this every second since that day and in my gut, I still don’t feel like he has autism.  I don’t think I’m in denial.  I can see there are certainly things that stand out as interesting.  He can talk to adults but isn’t great at talking to other children.  He hand flaps.  He’s smart.  My husband thinks he has selective mutism.  I have no idea if he does or doesn’t.  I know that social anxiety and generalized anxiety are VERY prominent in my family.  My father never talked to other children when he was a child.  When he did start talking he stuttered.  So the biological component is there.

No matter what happens, I love him so much and feel so blessed to have him exactly as he is.  He is healthy… he is happy. He loves school.  He loves us.  He loves his sister.  He loves to sing and make up stories.  He loves playing outside and loves his extended family.   He is so incredibly precious.  I feel almost guilty for having the emotional reaction that I had.   I am not perfect.  I react to things like anyone else and then I have to step back and think about them.  After this week I know this…

I know my kid.  He is the epitome of love.  He is hilarious.  He is precious.  Every single day that I’ve been his mom has been a day better than all of the days before it.  He is perfect whether he is on the spectrum or not.

Blessing of the hands

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These are the hands of your best friend, young and strong and full of love for you, that are holding yours on your wedding day, as you promise to love each other today, tomorrow and forever. 
These are the hands that will work alongside yours, as together you build your future.  These are the hands that will passionately love you and cherish you through the years, and with the slightest touch, will comfort you like no other. 
These are the hands that will hold you when fear or grief fills your mind. 
These are the hands that will countless times, wipe the tears from your eyes; tears of sorrow, and tears of joy. 
These are the hands that will tenderly hold your children. 
These are the hands that will help you to hold your family as one. 
These are the hands that will give you strength when you need it. 
And lastly, these are the hands that even when wrinkled and aged, will still be reaching for yours, still giving you the same unspoken tenderness with just a simple touch. 

The Rev. Daniel L. Harris

My friend sent me this poem tonight because she wants it to be read in her wedding.  It is so beautiful and really spoke to me.  Specifically the line “These are the hands that will hold you when fear or grief fills your mind.”

I am so blessed to have a husband that wipes the tears from my eyes and helps me wipe the fears from my mind.  I am blessed to have friends that listen to my worries and help me get through the panic.  I have all of these helping hands in my life and I feel tremendously blessed.  I have a wonderful support system and I am forever grateful.

 

 

A glass of wine, a puddle of tears

raindrops-in-puddle-1171471-1279x849.jpgTonight I sit and drink my nightly glass of wine.  An all too frequent habit that I probably shouldn’t be engaging in at all.  It hurts my stomach and I regret it the next day but for the few hours I feel the alcohol in my body.. I feel relaxed for the first time all day.  I feel “happy.”  I feel carefree …I can breathe.

Today was hard.  Another set of doctor’s appointments, but this time for my sweet Claire.  She was diagnosed with a rare food allergy syndrome and the swarm of emotions upon hearing the diagnosis was overwhelming.  I had tunnel vision… tunnel hearing (if that is a thing).  My body started to escape itself… I wanted it to not be real.  I wanted to hear that I was just being an obsessive mother who was overthinking things.  I tried so hard to listen to the doctor all while processing my feelings and obsessing over whether or not she could tell  I was a million miles away.

And there was Claire.  Rolling around on the bed in the doctor’s office, her chubby legs kicking back and forth.  Ripping up the paper on the bed… bringing her left toe to her mouth to nibble on it.  I smiled at her and made a clicking sound with my mouth.  She returned my smile and there was the warmth.  Then… the guilt.

On the ride home I was silent.  Processing every real or irrational thought/feeling.  I was thinking several thoughts at once.  I could feel the grief and fear in my chest and could trace it to my throat.  We got home and my girl smiled at me again and this time I returned her smile with tears.  I changed her diaper and began to sob.  The sobbing left me no room to breathe and soon my husband noticed and so did my 3 year old son.  I was falling apart.  The room began to spin and I sat down in a puddle of tears.  My husband was pleading with me to tell him what I was thinking …but I couldn’t.  How could I tell him this was my fault?

When anything goes wrong… I immediately blame myself.  I should have eaten better when I was pregnant.  I should have tried harder to breastfeed.  I did this to my little girl and it hurt more than I could tell him.  He says that my mind is leading me in the wrong direction.  He said that I made this up and there is no scientific evidence to prove that those things have any correlation with her food allergies.  I didn’t care.  If anything was wrong with her it had to be because I did something wrong, or I missed something… or I could have prevented it somehow.

Really, there was no one to blame for it so I did what I always do.  I beat myself up.  I was angry, upset, scared and had no one to blame… so I took it out on myself.  Only recently have I been able to forgive myself for giving up breastfeeding too early… and with this, all of those feelings of guilt came back.  Could I have prevented this for my child if I had been mentally well enough to continue breastfeeding?

I don’t know the answer.  I don’t know if it would have changed anything.  It probably wouldn’t have…but today, blaming myself was the easiest thing to do.  It was easier to lash out at myself and hate myself than to deal with anything else.  I wanted to hate myself more than I wanted to fear the future of introducing new foods, etc.  Hate is easier to experience than fear.  Anger is easier to identify with than grief.  So I jumped to those familiar feelings as a defense mechanism… to spare myself from feelings I couldn’t manage in the moment.

Tonight, I have this glass of wine.  My escape.  Another way of putting off feelings I don’t want to feel.  And tonight, in this moment, that’s going to have to be okay.