A Letter to my Special Needs Son

(Written 2-20-2015) This afternoon...... you stopped as I hurried you into the car, to say something.... I tried to hurry you on, literally pulling at your Jacket, but you wouldn't let me.  I saw you look down, point, and say, "A Roly Poly!" And there it was, a little bug, wiggling on the sidewalk, and in fact, it WAS a Roly Poly.  I didn't even know you knew what a roly poly was, much less how to recognize one, and name it so clearly.  It's times like this, that break my heart and bring me joy all at the same time.  As I say to myself, there is so much more going on inside his 13 year old pre-pubescent head then we know.

Sometimes, on days like today, where I catch a key's hole view into your beautiful soul, I have deepening  worry and fear.  The fear is deep because I'm about 60% sure it's true.  Every once in a while...... I'm afraid, and hopeful all at the same time........ that you are completely aware of everything around you.  As we sit and talk about the woes and hardships of changing your diaper, about the anxiety of your seizures, and mess of your medications.  I'm afraid you feel bad when we talk about you as "Severely Special Needs" because you still wear a diaper. Although I'm sure you would actually love to use the toilette, but your body won't let you.  I'm afraid that you know how much time and effort, and honestly loss it can take to be your mother sometimes.  I'm afraid that every time we go somewhere without you, you know exactly where were going, and what were doing....... without you, because although maybe in your heart you want to come with us, your bodily and mental limitations won't allow you to do it.  I'm afraid when you retreat into your room when a bunch of people are over, it's not JUST because it's overstimulating and you want to get away from it, but because although you might like to interact with them, talk to them, make a friend, you can't. Your body and your mind won't allow that kind of thing. I'm afraid the reason you never want to eat at the table with us, is because you would really like to join in the conversation, but because you can't, it's easier and less stressful to sit alone in another room.  I'm afraid you hear us talking about your school behavior, your budding puberty and all it's challenges. I'm afraid you know how hard it can be on us.  I'm afraid you like girls, that you have real honest romantic and sexual feelings that you will never be able to explore, because we won't ever let you.   I'm afraid I don't spend enough time telling you......... how much I LOVE BEING YOUR MOTHER.  So just in case, someday you can read, or perhaps I'll read this to you someday soon...... I want you to know, how special and amazing you are, and how blessed I am to know you.

Benjamin,

I want you to know.... I LOVE being your mother.  I have loved it since the day you were born.  Your amazing dimples, your chub that has rivaled all baby chub from then until now.  Your smiles and laughs, your simple peace that seemed to be always with you.  I love the way you love Elijah. Your baby brother born 23 months after you, you loved him, held his hand, and connected to him, more then any other person I have ever known.  I love how you love little kids shows, and things, even though your 13 and a half.  I loved how when you first discovered tellytubbies, that you would cry every time the sun would come up towards the end, because that was the clue that it was about to be over.  I love how you know how things like that are laid out.  I cherish your ability to know where we are about town, and when we make a turn that is not in the direction you wanted to go, (usually home, or Mcdonalds) you let us know by saying, "Where are we going?" over and over.  I love that.  It makes me smile.  I love to see you thinking and reacting to your world. I love your hugs. I love your cuddles. I love how your favorite thing in the world is for me to pretend to eat your face (because it's so delicious), and not let me go until I say, "I almost ate your nose! What would you do without a nose?"

I love how you will take any amount of support that is given to you, even as far as falling into me when your perfectly capable of doing it yourself.  Your so smart, you know exactly how to accept support.  That is such a rare thing in this world. One that most of us could learn a thing or two from you about. I love your absolute passion for Blue's Clues. How you just HAVE TO lick your hand and put a "Paw Print" on every clean Window or mirror.  I've stopped washing windows...... I just love to see them there.  I love to watch you eat something you love.  You cherish it.  You relish it.  You eat it slowly and deeply, with eyes half closed in ecstasy.  You truly know how to simply ENJOY.

I love how selective you are about who you give your attention to, because when you do, it lights up their world. I love how you make your desires known, but without attitude or a fight, just simple unwillingness to do it another way.  Call me crazy, but I love that about you.  I love that you will always be my baby.  So silly and sweet, crazy and cute.  How you are sometimes amazingly silly, like putting a diaper on your head or putting socks on your hands and making them talk in Benjamin-ese. Or when you take your shoes and socks off right after I have put them on, and then crack up about it.  You are full of such Joy.  I love how anger is not in your skill set.  Really. Who else on earth is blessed with such a gift? Your rarely sad, but never angry.  I love how you hardly ever cry. Because when you do, it breaks my heart into a million pieces, I can't imagine if you did it more.

I love how you study your teachers, parents and caregivers. You know the exact moment when we look away, the exact time you can make your move to do that thing you REALLY want to do, without being discovered.  Oh and I LOVE LOVE LOVE how you play.  Your amazing make believe world.  Tonight, as you watched Sponge-bob on the iPad with one hand, an episode with snow in it, you poured the torn up pieces of a band-aid wrapper into your sponge-bob house you got for Christmas, as the exact right moment when snow appeared on the screen.  I love your love for houses.  How you just as easily play with a speck of fluff as your main character, as you can the actual plastic character.  Your imagination is HUGE and your are constantly in your own world of play.  Your memory for sequences is remarkable, I wish I had your skill.

I love having you around. Introducing you as my son.  I am telling you I love it because I want you to know, how sad I am when your not there. When I have to introduce my family, and your not with us.  I want to scream....... someone very important is missing, he's just not able tot handle being with us at this event.  It's usually church.  I just miss you so much at church.  But you don't like being there anymore.  It's just to hard for you.  It's okay, but I just need you to know how much I miss you, and so does everyone else.

I love how you sit in the sun.  How you seek it out, and move chairs around the yard to get the perfect spot.  You don't often sit still that long any other time. It's breathtaking to watch you.  I love how much you love the holidays.  How for at least a month before every holiday you go to bed every night telling me that it's "Halloween, or Santa's Coming".

I love how much you love your birthday. It's your favorite day of all time.  I love how birthday parties are your favorite thing in the whole world. Your birthday party especially. And even though, when it comes, you don't spend much time with the party guests, you LOVE LOVE LOVE opening your presents and blowing out the candles.  Your JOY is permeating and contagious, and although you don't write thank you notes, the folks that see it know how thankful you are, and how special it was to you.

And I love how you never stop surprising us, the simplest thing lights up our worlds. This was the first year of your life, by scrolling through the amazon website, you were able to tell us exactly what you wanted for Christmas. I LOVED getting that for you.

My dearest, darling Benjamin............ I just LOVE YOU!! Soooooooo much. And I LOVE being your Mom. Don't ever forget it. Ever.

Love,

Your Momma.

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