Simply Staceymarie

Dear Franky,

On the days when autism had me down. On the days when my heartbreak over your brother’s disability was more than I thought I could handle. You were there. Laughing and smiling. Learning to crawl, walk, jump. And speak! Oh my God the first time I heard you say ‘mama’ I couldn’t stop crying. You stole my heart the first second I saw you.

You gave me all the milestones and memories that a mother should have. You have given me more joy that I can or will ever be able to put into words.

 

You were so easy that you allowed me to focus on your brother. On his autism. And for that I am sorry. I am so sorry his disability overshadows you. Watching you pass your twin brothers cognitively, socially, emotionally and physically has been crushing. You are my little reminder of what Brock isn’t. There are days where I miss what your brother is going to miss out on and it hurts  so much I can’t stand it.

 I think of the all times I almost downplayed your development because your brother learned to use a straw. Or point to his nose. Say his name. Such simple things. I swear I never meant to do that. I just knew you were fine. You were thriving. Your brother, well he just wasn’t.

I want to say I am so sorry. You were born into this.  Having a brother with severe special needs has to be terrifying. And frustrating. There are days when the only interaction you have with Brock is a kick in the face. I can’t even imagine what you must feel. I’m a grown up and it’s hard. I know this is why you push and pull in such a forceful way.

Autism is such a mystery to you. I can see it in your face. There are days where you will look at Brock and ask him a question and he will squeal in happiness, talking in his own language that the two of us only really understand. Those are the good moments. And I know they are few and far between.

I want to say I am sorry that this is happening. You are the most social kid that I know. You come to me to meet those needs because your brother ignores you. You demand me to play with you.

And often I am too tired. The exhaustion is real. While you are sleeping in until 8 am I am awake with your brother at 4 am. We live a whole day before you even wake up.

Part of me wishes you didn’t know the word ‘Autism.’ And then a tiny part of me is thankful that you know hard times. That you know sadness and disabilities and differences. I feel like it’s almost a gift.

But I feel like I’ve been robbed too.  I’ve missed so much of your life.

 

My life is split up into three parts. Before Brock,  Before an Autism Diagnosis. And After the Diagnosis. Where do you fit into that budda? I don’t even know.

I think of the times I shushed your beautiful chatter and nonstop questions because I had been listening to your brother scream for hours and couldn’t take one more sound. What kind of mother does that? But I know that you will understand.  I know you will act out and not know why. You will scream and cry because you see Brock doing it and I show compassion towards him. As if you want to look at me and say well you show him love when he is throwing fits and tantrums, why don't you show that love to me? 

 

I want to thank you sweet boy. Our life is hard. It is even scary sometimes. It’s exhausting. And you get the leftover shreds of a mother after autism is done. And I am sorry.

Some days I think I am creating a monster because I spoil you so terribly. You see your brother doing so many things that you can’t. So, I give into you all the time. I hold you and coddle you. I let you stay up later at night so we can have a few minutes, so we can have some us time.

Our life doesn’t make sense. I get it bubba. I truly do.

I am so sorry that I way to often have to say to you…’because he’s autistic. He isn't like you. He is different then you.’

Or the times I told you that you had to walk because I had to carry your brother. It started when you were  boys were about two.  You would scream at my feet and your brother would kick at you from my arms. The three of us would be in the midst of autism meltdown so fierce that I would have to walk and hope and pray that you would follow me.

Those moments are burned in my brain budda. Oh the guilt.

And I remember last summer you looked at me and asked if we could go to a fair. And I explained how we couldn’t go because Brock wouldn’t be able to handle the noise and lights. You grabbed my hand without missing a beat and told me you’d carry Brocky, no problem. You were the ripe old age of  four. I think my heart burst into a million pieces at that moment.

Every hospital stay with Brock, I am laying with him trying to give my attention to him, but I am not ever here nor there a 100% because part of me my little man will always be with you. Feeling like I should be with you giving you your bedtime story and warm milk. Wishing for nothing more then to be with you.

 

There are moments when I will look at you and wonder if you will take care of your brother after I am gone. Will you love him like I do? Will you shave his face? Will you dress him? Will you change his diaper if needed? Will he live with you? Knowing that there will be a day when I am not able to care for your brother because I am to old. You then will be his caregiver. Never giving you the chance to have a life where you don't have to worry about Brock. 

 

 

How can I ask you that? Franky  I want you to go to college. Get married. Have babies. But part of me has this favor to ask of you. I need you to love your brother after I am gone.

The pressure of that is unbelievable. But it’s a real conversation that you and mommy will have to have. Someday we will have to talk about it.

Today you are 5 sweet boy.
 

I am watching you play and thinking about all the things I want to teach you.

I want to teach you kindness. And love. And patience. I want to teach you that disabilities are not scary. And I want you to fight for what is right. I want you to fight for your brother. I want you to change the world in only the ways you can

I want you to be happy doing whatever it is you want to do. And to have no animosity against your brother. I want you to accept Brock and truly see all the joy he brings to our lives. I want you to be brothers in every essence of the word my sweet boy.

 

I know you didn’t ask for this. I didn’t either. But you have been given a responsibility. Some call it a gift. You are a sibling to a boy with autism.  You are brave. You are my heart and make our family so much better just by you being in it.