Posted in autism

Count momula

How many nights have I locked my doors, all three, making sure we are safe inside. One click, two click, thee. Picking up two plates and two cups, dumping milk and chicken nuggets…two more nuggets and some fries wasted. All I see is money down the drain. Three rows of 48 crayons are on my floor, nightly I transfer them back to their boxes like he likes. At least a dozen sheets of paper are scattered around with pigs, wolves and jars of tomato sauce precisely drawn. I find it hard to throw them away but I know there will be hundreds more to follow. The lights and fans go off, 9 switches. There was a rave in my house today, Brody’s fingerprints are all over the wall where he flips them on and off all day long. I go to his room and turn off the fish light he loves so much, put the book in his hand back for the 15th time. Finally the bedtime routine has caught on.

Two and half hours. That’s how long I’ve had of me time since he’s been asleep. You’d think me time would be relaxing but how can I relax when all I do is count in my head. I have two cartons of milk left, 3 days until my cell phone is due, four days until the weekend and countless nights of worry and stress. I do count my blessings, it isn’t all bad things. I have one mom, one Dad, two sisters and an uncle. I have a few people who have entered into my life and become family. I have a car, a condo and food to eat. I have more friends now then I ever have before. I have an incredible and special son who looks half like me. Life is hard and amazing at the same time.

I’m 1,2600 miles away from things that I love and where my heart broke. 1,359 miles away is my family I love and miss. 1,426 miles from the house that is my home, from the town that shaped me and started building me to be who I am now. It’s been 8 months since I moved and 13 months since I chose my own ending rather then going down the same wrong way Road. It’s been 7 years since I’ve been just me but it feels like forever. There’s no number for the meals I’ve made myself, the trips to the grocery store, diapers I’ve changed, loads of laundry done, times I’ve drank some wine just to help my heart go numb a little. How many times have I stared at this fan going around, struggling to close my eyes just to wake up and do this over again and resume the counting.

Silence is deafening was a saying that never rang true to me until I was alone. Tonight it’s so quiet it’s almost like there’s a ringing in my ears. I always think how many friends and family feel or have felt how I feel, how many people are laying in bed right now doing their own counting. When the counting gets too loud I try focus on keeping my eyes forward. To put one foot in front of the other and keep going, to not let it bog me down.

Yes I’m counting my balance in my bank account but I’m trying to remember that someday I’ll look back and not have to count. I’ll be able to remember how it was, how I made it work with some help and sacrifices. I’ll be understanding that others are fighting that battle and be compassionate and helpful when I can. I’m counting how many job postings and applications I’ve read over and the hours spent trying to find a job that fits. Someday I’ll have a career that makes me happy and helps support Brody and I. I’ll feel proud of where I’ve gotten and the steps I’ve taken to get there. I’m counting the hours spent inside, watching paw patrol, drawing bricks and a wolf, Blowing bubbles and cleaning up after a potty training boy. I’ll also count while I cherish the kisses, the words my nonverbal child spoke, the milestones hit and the bedtime stories and tuck-ins I give Brody, just like I remember from being a kid.

The loudest counting in my head is my age. I’m 29. 12 years ago I graduated high school, 8 years ago was college, almost five ago I added mom to my list. I still have so many years to add onto my age, so many not counted yet. I have no idea what those years hold but hopefully I can add on more children, a husband, more friends and family and many amazing adventures with Brody. This is what I dream about when I close my eyes, it’s what fuels me to open my eyes for the 10,340th time.

Posted in autism

I’m trying but I’m tired…

I’m laying next to you in my big bed. You have a cold and you’re sniffling, you’re watching paw patrol for the millionth time on your kindle and dozing off. We just wrestled while I had to hold you down to give you medicine, you cried and spit it all up and I feel like a mean mom. I hate seeing you upset but while you’re the non verbal one, I wish you could read my mind like I can read yours.

I wish you knew the daily thoughts I have about your future, that everything I say and do is for you. I always wonder if I’ll be a soccer mom one day, if you’ll be singing in a Christmas concert at school like my friends kids are. I think further down the road, if you’ll go on to go to college or have a career, if you’ll live on your own, if you’ll meet someone special someday and create a family. I wonder how being a single mom will influence you and how you grow up, I worry it will hurt you somehow. I try so hard to be both roles for you but I’m only one person. My minds tired, Brody.

I wish sometimes you can could see how much of my mind you consume but glad you don’t see the other part of my mind. This year has brought some internal battles for me, I’ve had to be out of my comfort zone a lot. I’ve had to fake being strong for you and force a smile, I’ve hidden when I cried. I’m trying to heal my heart while being there for you, trying to see not just your future but mine. No one teaches you how to parent when you’re feeling broken, I just wake up and try each morning and chip away at it. You’re not a burden but my biggest blessing, Brody. You’re my consistent when most other things aren’t.

My body’s tired Brody. I pick up millions of crayons a day, Reese’s wrappers are shredded all over the house. My hands are sore from filling out your paperwork, my eyes are strained from emailing and constant researching on my tiny phone. I swear my left eye is going to twitch until the day I die, the bags under my eyes are getting darker every day. My body runs on coffee and creamer, I get sleep thanks to melatonin now. You’re 42 lbs and can’t walk far, I’m always carrying you on my hip, having to use both arms to support you. My body aches and cracks like I’ve never heard before and I feel older then I am. Potty training is the bane of my existence, the laundry I’ve been doing is solely supporting the power company. I drive you to doctors appointments, soon school and therapy, swim lessons, the store for bubbles and crayons. My body doesn’t stop but when it does, it still feels like it’s moving. If it’s not moving a million miles a minute, my mind is. All of this but I still bring you to see Santa and goats at the farm. We go to the beach and watch sunsets, I take photos of you even though I’ll never forget those memories. We swing at the playground while kids say you’re too big for the “baby swings”, they don’t know you can’t support yourself on the big swings. You spin in circles in front of the playground while the other kids play around you. They try to ask your name and get upset and ask me why you don’t talk. I tell them you don’t know how yet, “We are learning” I tell them. This makes my heart hurt too.

My heart hurts because others don’t understand you, and it hurts more because I don’t either. I see you slip into Autism land, which may seem awful to some but you’d know what I meant if you saw what I did. A little boy in a pile of blankets and pillows he has stripped off the beds, all on top of him with his head poking out. His eyes are open but no ones home, it’s like Brody’s left and watching him is difficult because his disability kind of reaches out and slaps me. I’m then faced with the fact I don’t know so much about my son, even doctors and therapists don’t. Guilt doesn’t creep in often but when it does it’s consuming. I always wonder if I did something wrong, if it’s my fault you have autism. It’s times like that I can actually feel my heart hurting, the worst pain of all.

I am tired Brody, and I’m sure deep down you know. You are so smart it stops me in my tracks sometimes, you know and understand way more then any of us realize. If you see that I hope you know that it won’t always be like this. Some of the things will get harder, some will get easier, some are just a phase we will work through together. Christmas and holidays seem to be extra hard on me, I try hard not to compare our situation to others. You aren’t writing a list to Santa, you don’t know what Christmas is, I don’t have extra money to buy you gifts this year. But you know what? This year you sat on Santa’s lap and you said his name while looking him in the eyes. You know how to unwrap gifts this year from amazing friends and family who love and care about you, who are your biggest fans and our amazing support system. You’ll go to sleep in your own awesome new bed, in your brand new room in our own condo. You’ll wake up to our cute tree that you helped me decorate and see the cookies Santa ate that you helped me decorate. All of these things I couldn’t say last year but I can today. And that, that’s enough to get me through because although a day in our life is more work then some, it’s worth it in the end. So here’s to a year of progress and another day of trying our hardest to be better. Every days goal is moving forward from where we were yesterday, no matter how small the step. Moms tired Brody, but I look forward to every day with you.

Posted in Believing in Brody

Making memories in Maine. 

I know I’ve been absent and neglectful of my blog, so sorry. I am currently in Rangeley, Maine where I grew up my whole life. The week before we left was full of anxiety of packing and prepping everything and just sheer madness. The important thing is that we are all in one piece and on a much needed vacation. 

So many thoughts  keep running through my mind here. The one I can’t gets over is how many memories I have of my own here as a kid and now I’m making new ones with Brody at my side. There have been a few times where I actually had Brody looking me in the eye and told him I was taking a mental photograph. I love the fact that Rangeley and this beautiful area will be a part of Brodys memories as well and we will always share that. Brody likes tv and tablets, all that technology just like every other kid. What I love about him is how he enjoys the simple things. He loves the outdoors, water and wind in his hair. His smile goes ear to ear and is so contagious, his happiness just overflows through jumping and skipping. 

Two memorie have stuck out specifically since I’ve been here and the pictures just don’t come close to capturing it but man, I tried. We went up this beautiful hill a little outside of Rangeley that has a 360* view of the area and I swear it’s the most beautiful place I’ve ever been. Brody could not even handle how happy he was and laid down in the dirt, laying like a starfish and just looking up at the sky. When he went up the set of stairs he ran in circles and shook his head back and fourth while the wind blew his long, blonde hair. His excitement made the experience a million times better and I was just so happy watching him. I know he couldn’t talk but I just knew how happy he was and that was enough. 

Since Rangeley is so small and is such a wooded area, we had to always find ways to entertain ourselves in simple ways. One memory I have with my family is going on our front porch and watch the thunder and lightening storms. I had seen a few storms while living in NY that reminded me of this and made my heart ache a little, missing those memories. My second or third night here in Maine I was at the house I grew up in as a kid when I heard a storm rolling in. The rain was coming down so hard and lightening was lighting up the whole sky. I grabbed Brody and plopped us down on the rockers out front. I was nervous the thunder would be too loud or he wouldn’t like the rain but he was actually very curious and enjoyed it. He melted right into me after checking out the rain and getting splashed on. We rocked back and fourth, taking it all in and just enjoying eachother a company. It was so simple and perfect that I knew I’d always remember it like I do from when I was a kid. 

We’ve had so many other fun times from going to the park, watching fireworks, attending the parades for the fourth and just spending time with family. It’s been great so far and I’m drinking in every minute of it. Sometimes we get caught up in the business of work, school, city life, bills and everything else we juggle to have a nice life that simple times get overlooked. It’s a natural thing and it happens to most of us but I’m thankful for times like this to remind me of how lucky we are and appreciate these memories. I am trying to take it all in and can see it in Brodys eyes that he’s doing the same. I don’t know if it’s the fresh air or the beautiful views here but my heart is full and content.  I hope you all feel the way I do at some point because it can help center you when you’re feeling off kilter, this I can say from first hand experience. Now I have to wrap it up because I’m like a kid at Christmas, my sister, Alex is almost here to visit!! Off to make some more memories. 💕

Posted in autism

Baby with the blue eyes

Anyone who knows anything about people with autism sometimes struggle with eye contact and can be one of the first indications towards figuring out your child is autistic. Brody would never look people in the eyes as a baby, he would flail his head just to avoid it. Therapist on therapist worked on this with him and lately we have made progress by pointing to above the lip and saying look. He will momentarily pause and glance at you in the eyes then just as quickly dart his eyes away. 

I’ve preached until I’m blue in the face how little moments are times to really take in time with family. I believe in slowing down, really watching and absorbing even the littlest thing and trying to take a mental photograph. As a young kid I lost the majority of grandparents in a short time span. It was devestating to me that such beautiful souls were now just Angels above watching over me. Things trigger my memory from time to time and they are often in my dreams. I would do anything to have my grandparents back, to have them experience the joy that Brody brings to a room. My parents have always been great about making memories and turning their full attention to my sisters and I. We always had cheerleaders, a pat on the back and constant support and for that, we are very lucky. 

As I’ve said in previous posts, our family is very open about expressing love and openly show emotions. Since Brody is nonverbal, I have yet to be told “I love you” or called mama. He babbles from time to time things along that line but never distinctively forming the words. I say this but will quickly follow up by saying I know he says I love you in countless other ways. I think part of my bond with Brody is that I will practically make a fool of myself and be a monkey just to get his attention and capture some eye contact. Different noises, imitating him, physical features or silly faces will catch his attention as his gaze scans the room and I get a brief moment of those happy eyes all on me. Part of learning about Brodys autism has been thinking outside of the box and getting comfortable with a path no ones been down as every kid on the spectrum is different. Every day I learn new things that strengthen our bond and help us make those memories where we rely on reading eachother rather then words. 

The hammock is a favorite go to for us, we are forced to be close and I know how much he loves swinging. Brody grins the whole time and chatters with excitement as his beautiful blonde hair blows in the breeze. That smile is contagious, it’s my little slice of heaven. In the beginning of this post I talked about taking in little moments and it’s times like this I’m referencing. We swing contently, back and fourth, no worries or regard to anything else. Tonight he turned his head completely to me,  leaned in so our noses were touching and looked me so closely in the eye. While this is no big thing for most, to me it was such a happy moment. He turned his head to the side so we were now cheek to cheek and just laid on me. I took a mental photograph, he is growing by the day and slowly he is becoming a boy rather then a baby. With autism I’ve learned that behaviors and tendencies can come and go within a week so taking everything in is even more important. I soaked up the love as we just laid there, swinging until my heart was full. Before I knew it he was off again, eating his popcorn and rearranging his special group of objects like he does every day. 

I hope you all let your world slow down and everything fall away during times like this. Taking even the smallest memories like this for granted is such a shame, we are lucky to for every moment with special people we love. Make time for the important people in you’re life, life is so kind but can also be cruel at times. Again, Brody has reminded me another thing that I had forgotten since being a child and I hope this serves as a reminder to those needing it.