A Gift From The Heart

At the beginning of my career, I was a preschool teacher at a child care center. One of my most favorite kids (it happens, teachers have favorites) was a quiet, introspective boy who loved the Boston Red Sox and ate sushi with chopsticks for lunch. His family was in the United States temporarily and during my final year at the center, they moved back to Japan. On his last day, the last day before Christmas break, he presented me with a beautiful scarf and this piece of artwork.

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It is one of my most favorite things. I’ve hung it in every office I’ve had, including the one I currently work out of at home. I love the detail he included, especially the brown flecks in my blonde hair. I can picture him sitting at his kitchen table, working on the piece, step by step, carefully drawing the outline before filling it in with carefully torn pieces of paper.

He really has a special place in my heart and I feel so lucky to have this little piece of his.

#Reverb16 Day 3 writing prompt: The Best Gift I Ever Got: We all remember That One Gift that gave us The Most Joy. Show us what that gift was for you and describe why it makes gives you all the feels.

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Cozy

Yesterday I wrote this:

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So as I embark upon my 39th year, I’m determined to make stuff happen. At the risk of sounding cheesy, my someday begins today. #1 on my list — start writing. To kick things off, I’m participating in #reverb16, a project that provides writing prompts for 30 days. So here goes Day 1: Intentions. 1) What do I hope to get out of a month of writing each day? I hope to tune up my skills, or discover if I actually have any writing chops to begin with! I want to start a habit of getting what I write in my head onto a keyboard. 2) What is my favorite part about writing – the idea, the first words, the final sentiments? It’s actually making connections. Writing something that makes someone say “hey, me too” is my ultimate goal. I also love the cathartic feeling of writing a good piece. Thanks @abbyofftherecord for introducing me to this project.

I was too afraid to put myself out there. Too afraid to start up this blog again.

But today, here I am. It’s day two of #Reverb16 and The Amazing Races is back in business.

Today’s prompt is What keeps you cozy through the wintertime?

I hate the winter. I’m always cold and the early darkness makes me tired too early in the day. I get tired of keeping track of hats and gloves and leaving swimming lessons takes FOREVER because everyone has to dry off and bundle up. I ski just to have something to do but I don’t really like it. Once Christmas is over, I’d be happy to just go back to the warmth of spring or better yet, summer.

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There are three things I am rarely without in the winter…slippers, a blanket and the space heater in my home office. Even once the weather becomes warmer, I have a hard time giving these up. Sometimes in the spring, I’ll leave the windows open at night when there is a chill in the air just so I can snuggle up on the couch.

 

 

I am not the mother I want to be.

Most mornings, after I’ve shuttled the kids out the door with somewhat of a “don’t let the door hit ya on the way out” attitude I want to call them back. “Wait!” I think. “Come back.””Let’s have a redo. This was the morning that was supposed to be different. This was the morning I wasn’t supposed to yell.” “This was the morning I was actually supposed to be the mom I want to be. Facebook mom. Happy, loving, nurturing mom.”

Last night, it finally hit me. This angst I constantly feel. The nagging, your kid has special needs and you can’t handle that angst that I constantly feel. The one I’m always trying to fix and wish away. The one I try to drown with tears or ice cream. I finally realized what it’s all about. If I was a church- going person, a God-belieiving person, I would think that “he” put Max in my life to teach me a lesson- how to become that “sticky floor and sticky hands mean happy kids”, laundry and organizing  can wait kind of mom that I wish I was. But alas I am not (that kind of mom or a religious person), so I know it’s totally nature vs. nurture at this point.

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No matter how much I want to be that mom in my head, it’s just not in my nature. It’s  nearly impossible for me to pass by a pile of papers or crumbs on the counter and just leave them. So the fact that Max has to constantly touch everything; rummage through papers, click buttons on my computer and leave sticky milk-filled Cheerios all over the table and floor after every single breakfast drives.me.crazy.

I know he can’t help it. I know he isn’t trying to be…what?…disobedient…annoying…fresh/bad/difficult. But I grew up in a neat and orderly, place for everything type of household and it’s just who I am. Just like the opposite is just who Max is. So how do we figure this all out? How do I accept that he is the child and need to change for him and not vice versa?

By the way, I haven’t even mentioned these struggles also include Ben and my inability to ignore the incessant whining that lets me know day after day he feels overlooked, he needs more attention from me, he is starting to figure out that we all walk on eggshells around his brother.  I know the only  way to make the whining stop is to ignore it, but sometimes, usually based on all of the above, it’s just really hard to do that.

So what I want my boys to know is that I’m trying my very best, I really am. I wake up each day hoping it will be the fresh start we all need. Hoping that will be the day we call just breath and smile and enjoy each other. I want them to know that I’m going to keep trying, as long as they are patient with me, I’m going to keep trying.

Why We Write

I read a blog post on Momastery today that completely validates the way I feel. Take a minute to read it, I’ll wait.

The author, Chrissy, puts into words exactly how I feel, how I’ve felt for the past 5+ years.  Those words, about Cancer, and how it would almost be easier…I’ve uttered those words more than once. I’ve thought, that has to be easier. There is a clear treatment plan (that insurance covers by the way). With cancer, no one judges how your kids behave in public. No one snickers at the precautions you take to keep germs away from your child like they do about the precautions you take to prevent melt downs or seizures. No one questions whether your diagnosis is real or just the flavor of the month issue that kids have these days. But then, I’ve felt the shame for wishing that because my God, there are people whose children die from cancer. At least my child is still here.

But that dark cloud of sadness, that haze that you live in, that’s real. I’ve been waiting for it to go away for a long time now, but it always seems that just as it slowly starts to dissipate, something else comes creeping right behind it and we’re back to heavy hearts, heavy shoulders and heavy minds.

But like Chrissy, all of Max’s diagnoses have brought a fire to my soul too. They have lit up something in our whole family. We just want to DO something; to fix something not just in Max but all the other kids like him. We want to help. To let people know that epilepsy isn’t just seizures. It’s ADHD and learning difficulties and Autism and not having play dates because how do you ask a parent you don’t know well to administer medication in your child’s rectum if necessary. Autism isn’t just kids that flap their arms, are non-verbal or don’t like to be touched. They are kids that feel, and love. They are kids who grow up to contemplate suicide because they’ve never really had friends and the bullying becomes just too much. They are kids who live in households with bickering parents because the adults are just so on edge all.the.time.

But they are kids that work really hard, and kids who need and want to be loved. So I’m going to take a page out of Chrissy’s book. I’m going to do my very best to follow her words:

“I refuse to waste my entire life on sad because of stupid autism.The best thing I can do for my boys is to give them the gift of a happy me. A really and truly authentically happy me.”

By the way, the title of this post was inspired by this Tweet from Stephanie Dulli.

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Even though it’s scary, we should all be sharing our stories. Me, Chrissy, Stephanie, all of us because there is someone out there who will read them and learn something. Or feel just a little bit better because there is someone else out there that thinks like they do, or feels like they do. And plus, writing it down, getting it out, helps lift some of that heavy weight we all carry around.

I Have Something to Say

Ahem. Hello? Hello? Is this thing on?

It’s been awhile. A long while. I’ve been writing a bit here and there, but not actually HERE. I felt like for a while I had nothing to say. No insight to share. But I have a lot going on in my mind that I want to get out…that I NEED to get out. I’m constantly writing blog posts in my head and trying to process things as if I’m writing about them. Those voices telling me to just write, just get it out already were getting louder and louder. So here I am.

There is so much beautiful writing going on now. So many blogs that I read often and intently have really taught me lessons; have really helped shape who I want to become someday. They’ve helped me see that I’m not alone. That motherhood isn’t always easy. That marriage isn’t always easy. That trusting your gut can pay off and help you to finally become a better version of yourself. That having a child with special needs can be thrilling and challenging and frustrating and hard and inspiring and…

I do have something to say; I’m just not sure what it is yet. There is so much that has happened, so many changes, and yet so many things that have stayed the same. But I need some time to get it all out; to put words to what I’ve been feeling and the internal struggles I’ve been having. They’ll come, all the stories I have to tell. Because if just one person reads what I’m writing and nods her head yes, or feels just a little bit better because my kid had a tantrum too, or because I can’t find time to exercise either, then we’ll all be better off for that.

I have something to say, and I hope no matter what it is, you’ll hold my hand, give me some good advice and listen.

Epilepsy Walk 2012

In November of 2007,we heard the words no parent wants to hear. “Your son has a seizure disorder and of all the types to have, this isn’t the one you want.”  This started our family’s journey into the world of special needs, developmental delays, Early Intervention and IEPs. Instead of just learning how to be first time parents, we had to figure out how to juggle full-time jobs, doctor’s appointments, therapy sessions and school schedules. Even 4 years later, it remains a challenge.

This year has brought us many new struggles. Even though Max’s seizures are well controlled, his Epilepsy is affecting him every day in other ways. He has constant struggles with his attention and behavior, trying his best to keep his ever-moving body and mind under control. Since Max will turn 5 this summer, we have spent many,many months researching and agonizing over which type of school setting will be right for him and provide him with not only the academic, developmental and social skills he needs to succeed but also allow him to remain a curious, exuberant learner.

Max continues to be a joyful boy. He loves listening to music (among his favorites are Coldplay, the Foo Fighters and Red Hot Chili Peppers). He is obsessed with bridges and loves to look at photos and identify where they are in the world and if they are “walking bridges” or “car bridges”. He can do any puzzle you put in front of him. As I said about him last year, he has perseverance and bravery the likes of which we have never seen. His personality will take him far in life no matter what Epilepsy throws his way.

This year, 200,000 people in the US will be diagnosed with Epilepsy, which is more than will be diagnosed with Breast Cancer and the mortality rate for both is the same. However Epilepsy research will receive 600 million dollars less in funding than Breast Cancer research, and over 300 million dollars less than Alzheimers research. Your support is helping families like ours. The Epilepsy Genome Project, introduced to us this year, is on track to discover the genetic cause of severe childhood forms of Epilepsy, including Infantile Spasms, the original type of seizures Max had. This is a true sign of research dollars at work and may help eliminate another family having to go through what we did, but more importantly may offer a child the chance at a normal, healthy, long life. In addition, the CT Epilepsy Foundation has used donation dollars to develop the nationwide Child Care Education Program that Max’s teachers have benefitted from. They now know what to do in the event a child has a seizure at the center. They know how to administer Max’s medication and what different seizure types look like; which could save his life. This walk is held to raise money for education and support groups, as well as a summer camp for kids and teens living with epilepsy, all the while trying to eliminate or at least help control this unpredictable and life altering disorder.

We appreciate your support and encourage you to donate what you can. Our team name is Max: The Amazing Race and by clicking on the link, all you have to do is enter your name and donation amount. You can also donate to Ian as an individual. Thank you for joining us in this fight.

End of Daylight Savings Means the End of Sleep

We were just getting to the point where we were sleeping in…finally. For the first time in what felt like years we got to sleep until…wait for it…6:30 a.m. It was blissful. I had been dreading it for weeks, keeping the kids awake later and thinking about the cold dark mornings of last year; the mornings that started at 5:00 a.m. And now, they’re back. Sure we can try and stretch until 5:45, but that usually means having to clean up every.single.book. from the bookshelf that ends up on the floor.

Sure, I could use the extra time to do something and at least they are in bed relatively early, but I just can’t be “on” so early when it’s cold and dark. Guess I’ll just have to dream about springing ahead.