Archive of ‘future’ category
“He’s 6 years old, he should be able to walk the block without complaining or flopping.”
“Trick-or-treating should be fun, not stressful.”
“We should be able to walk through Target together and not have to put him in a too-small cart so he doesn’t get away from us”
“Field trips should be such a fun day away from school….”
These thoughts either go through my mind or they cross my lips far too often. Combine our lack of child rearing experience (prior to E), our expectations, our own childhood experiences, and our observations of other children of similar age to Evan. Mix them all together and then line them up against who Evan is…..and how he is wired.
At a town wide Halloween festival. This was the extent of his happiness.
Evan loves to socialize. He loves to say hello and get a response out of strangers and loved ones alike. But…he likes to do that on his own time and on his own terms. So we find ourselves planning an outing- where people familiar to Evan are going to be present. We think, he is going to love this, he loves ____________ (enter name here). We tell Evan about this excursion before we leave. He asks with anticipatory anxiety, over and over, if we can leave, if we can go to the exciting place.
We get to said place, and things will change rapidly. Evan will get a dazed look on his face, and he will push past the familiar people who are so eager to interact with him. He will exhaust every corner of the house, yard, etc- looking for the toys he loves. Or looking for things that make noise, music, anything of that nature. The content, giggly boy that we left the house with is now very reserved, and even agitated. I might suggest to him to go to a room where his favorite snack is, and he pushes my hands away in a huff. He might even drop to the floor.
Then he looks up at me with those sparking blue eyes and says, “Sorry mommy. I’m sorry mommy.”
I know your heart just broke. Mine often does too. But he does say “I’m sorry” for many different reasons and emotions. It is a go-to phrase for him right now when he feels any type of discomfort or confusion.
But in those moments, it feels like he is saying,
“I’m sorry mommy. I’m sorry that I disappointed you. This is not what I expected either.”
He wanted to roam the house freely without abandon. He wanted to talk to people on his own terms, not when they wanted to talk to him. Social cues are foreign to him. Even when explicitly taught, it is tough for him to remember that you walk into someone’s house and greet the host before walking further. Evan often will make a beeline right for the bedrooms. Which of course is quite rude and not appropriate.
But to E- it is the gold mine of fun! Fans, alarm clocks, remotes, you name it.
The past few months have felt very hard but very necessary in my journey as Evan’s mama. I have picked him up off the ground more times than I would like to admit. I have been smacked, ignored, and I have been hugged harder than I have been our whole relationship. I have waited him out for 30 min + when he has refused to do something I asked.
We are closer than we have ever been.
I think this is due to several things.
A huge factor is my dear husband’s involvement. We are a team when it comes to doing what is best for Evan. The summer proved to be one of the toughest for me in all my 39 years. Evan went through a medicine change for his seizures and with that came a language increase but also a huge behavioral increase. Melody is a spirited, amazing, pain in my rear most days. Handling Evan’s struggles were tough when she was screaming that I gave her the wrong color plate. Todd made sure to give me ample opportunities to get out of the house when I needed to. He didn’t get upset or try to fix it when I cried. He was just there. When things kicked up again during the start of the school year- he came to me and said he felt like we needed to be firm and consistent with Evan but we needed to be as positive as possible. Keep things light, avoid getting into a battle with Evan, because the negative is as reinforcing to him as the positive. Actually, it is probably MORE reinforcing. Unfortunately.
One of the biggest shifts for me, has been my understanding of Evan. It grows deeper every day. I am trying really hard to put myself in his shoes. I am swallowing my pride more, and not feeling crappy about it. It is okay to say no to a birthday party because I know it will be super stressful for both of us. Even if that means he misses that peer opportunity. Even if that is one more playdate that won’t be scheduled. The strain that it causes him, and our relationship is not worth it to me.
It is also okay to take risks. Try walking through a grocery store with E without a cart. Try going to a friend’s house that has the motherlode of Fisher Price toys.
Our expectations might not always jive. Our experiences are going to be completely different.
But it is about trying to meet him where he is. While also giving myself a break for not always finding that easy.
Yup, I’ll work on that this week…and next.
And for the rest of my time as Evan’s mama.
I pray she will continue to be fierce.
So far, our Melody has been sassy, strong, outspoken, happy, did I mention strong?
Two years ago today, I posted this.
My world was broken. My heart was sore. My soul felt very depleted. I was sure that our chances of having a sibling for Evan were extremely slim if not gone.
Over time I came to accept that, and embrace the family of three that we had become. But there was always a little voice inside that whispered, “a sibling would be so good. for everyone.”
Fast forward to the present. We have a thriving almost seven month old little lady. She makes her presence known and her development is one of the most amazing things I have ever witnessed. Because of how hard Evan had to fight for each milestone, it just blows me away how rapidly things are happening for Melody. I am torn on a daily basis between shouting how excited I am from the rooftops, or feeling compelled to compare this experience with Evan’s first year with each new developmental leap she makes. I am so glad we had our children in the order we did. Evan’s experience was completely his and his alone. I had nothing to compare it to, so I didn’t feel the delays as heavily as I might have, if he had an older sibling.
I felt my eyes sting with tears the other night. I was reflecting on how I prayed nightly while pregnant with Melody. I prayed that Evan’s sister would fiercely love and defend him. That he would be her hero and they would be good for each other.
Even though she now takes things away from him and she loves to yank his hair, you can see adoration in her eyes. I hold her up to look at his school picture before he gets home from school and she giggles and kicks her legs all around in excitement.
Melody has her whole life ahead to decide who she is, and who she wants to become . But for now, I will revel in their relationship.
“Cuddle you, Mommy.”
“Hi Mommy! Hi Daddy! Hi Mommy!”
“I want to sit, Mommy.” (meaning he wants to sit on my lap)
These phrases are said on a daily basis. Some days he greets me about two hundred times. Nope, not exaggerating.
Bundled up and ready to handle the snow for about 3 minutes
You know how you have those memories of conversations that always stick with you? You can remember where you sat, what you thought, and maybe even what you were wearing. I have a lot of those. Mind you, I can’t find my phone or keys most days but I remember certain conversations like they happened two minutes ago.
Anyway, I recall having a Facebook “conversation” with an old high school friend. I believe it started after I posted this entry . I was reveling in the excitement of hearing Evan say my name for the first time on his own without a model. She was complimenting my blog and then she followed it with something like, “Soon he will be saying your name over and over and you’ll need him to take a break!”
So she was partially spot on.
He does say my name. A LOT.
He says it sometimes just to maintain connection/engagement with me. We figured out that sometimes he is so excited to be sharing something with us, but he can’t put it into words so he just keeps greeting us, because he knows it will receive a response and he wants to make sure we are still “with him.” It’s his way of checking in.
So my friend was 110% correct about the repeating.
But I do not need him to take a break.
Believe me, there are things he does that make me weary. Such as turning on and off the baby swing, or asking to watching “funny puppies” on You Tube. But when it comes to language and communication, I still get excited when he remembers to check in or he asks me to “cuddle you.” (which of course means, please cuddle with him.)
Evan’s language is more delayed than the average 4.5 year old with Williams Syndrome. He has a large vocabulary, and he understands SO many words. But he speaks mostly in two or three word phrases and some longer ones that he uses to express is needs.
Again, I forget how delayed he is until I stop comparing Evan to Evan and I compare him to another child. We were at the dentist’s office recently and there was a little girl who was very excited to share every toy with her mom. Her mom looked very tired and overwhelmed from whatever her day entailed. Her daughter would jump in her face, show her a toy and babble on about all the details. The mom was half listening and tolerating her daughter but you could tell she just needed a little quiet.
And I totally understood.
Because I thought to myself, “Wow, at Evan’s age he should be sharing toys with me and telling me about them.” That mom doesn’t realize how awesome it is that her little girl is speaking in long sentences and sharing experiences with her.
Then my mind went to a weird, unfamiliar place. I thought about Melody.
Just hanging out
I immediately felt guilt and wonder. I was pondering if my little girl would come up to me in a doctor’s office one day and babble on about toys until I ask her to go play by herself because my mind needs a break. I felt a slight excitement at that prospect with weirdness and guilt mixed in.
I looked at my boy, playing with the musical toys and repeating, “I want to play!” and “toys!” with glee.
We have celebrated and fought for every one of Evan’s milestones. I wouldn’t be human if I didn’t hope that there wouldn’t be as big a fight for Melody. But at the same time, I wouldn’t change what we have had with Evan for the world.
The juxtaposition of those two feelings is kind of exquisite.
And I still love hearing….”Hi Mommy!” two hundred times a day.
Baby girl….I’m ready to meet you.
39 weeks tomorrow. I woke up today with a weird sort of peace and calm. And that has been hard to find in the last month or so. With the heat of the summer, daily bouts of contractions, Evan’s CHOP overnight stay, some potty training regression, anxieties about the baby/transitional period to come- it has just been a different last 5 weeks than it was before Evan was born. I think back to that last month before his birth (where I took entirely too long of a maternity leave before he was born) I took long walks each day, bounced on my yoga ball, wrote my unborn baby letters, I read baby blogs at length, and just was so wide eyed and excited in general. I didn’t have a lot of false labor, and the weather was kind to me. I just re-read this blog I wrote the night before Evan was born, 5-26-2011, and I smiled at my naivete.
I also re-read this entry that I wrote to all the different mamas that I have been in the last 4 years. Dear Mama
Phew. No wonder I am feeling so differently this time. It has been a wild ride the last five years since we lost my Dad and found out we were pregnant with a future Evan.
This guy made me a mama….
One thing that I do not handle well is uncertainty. It’s not in my DNA to find peace in the unknown, or to accept that I do not have control over everything. But….I have been working REALLY hard at it for a long time. Just because it is hard for me, doesn’t mean I can’t try. So this morning, I wake up, feeling a little more at peace, and very very VERY ready to meet this little girl. I also am striving to find acceptance of the unknown. Not knowing who she will be. Not knowing if she will also have special needs or developmental delays, or the like. Not knowing if the labor will last 2 days, 2 hours, or 30 min. Will she love her brother with all her heart? Will Evan be able to break away from his toys and music to love her right back? Can I sit in the quiet moments with this little girl and breathe deep knowing that no matter what happens…..It WILL be okay.
Because when I read back to Evan’s diagnosis story. I remember those fears, those questions, those unknowns that were suffocating, blanketing, all encompassing. And I sit here, over three years later, with another child in my belly- and it HAS been okay. Evan is potty trained (going through a little regression but we’re on it), he’s going to school full time, he is loved by classmates and teachers alike, he runs up to me when he sees me after a day of school saying mommy, mommy! He is starting to read sight words, climbing into his car seat himself, finally spitting after he brushes his teeth! And we are about to have another child after sending two babies to Heaven.
I still don’t know what will come in the next day, week, year, decade. And that is not easy for me. I’d love it if God would just send me a little date planner and let me know when each milestone will happen, when she’ll sleep through the night, when Todd and I can go out on a date again (where I don’t feel like I am going to fall asleep after two min), when Evan will be invited on his first official school playdate…….
But that’s not how it works.
Instead we all plow through our days and lives doing the best we can as things happen. The amazing, the excruciating, the beautiful, and the mundane.
I AM getting better at all of those. And I won’t quit until I’m no longer on this planet. Because this is all worth it.
Can’t wait to add a new one with Baby Sister. Stay tuned!
I was getting ready in the bathroom the other day and I felt like I needed some music to move me along. One of my favorite albums is the Parenthood TV soundtrack. I am one of those. Those who LOVE soundtracks. My dad and I would croon along to the Cocktail soundtrack on roadtrips. And don’t forget the infamous cassette tape of us singing “I’ve Had the Time of my Life,” from Dirty Dancing. (recorded in an amusement park “recording studio” nonetheless) It’s kind of amazing, and kind of scary.
Anyway, I heard these lyrics, loud and clear:
If you have a broken heart or a battered soul
Find something to hold on to or to let go
To help you through the hard nights like a flask filled with hope
Darlin’ do not fear what you don’t really know
“Cause it won’t last – your worries will pass
All your troubles they don’t stand a chance
And it always hurts the worst when it’s the ones we love the most
Darlin’ do not fear what you don’t really know
Do not fear what you don’t really know.
How simple is that? Do not fear the unknown. If you cannot control it, and it is in the future, however distant- don’t fear it. Clearly this is much easier to read and talk about, than it is to put it into practice.
But I thought I would try.
Should I focus/worry about the things I do not know for 100%, like will Evan develop heart issues? Will I get pregnant again? Will we have another baby with special needs? How will Evan be accepted in school?
Darlin’ do not fear…..focus on the things you DO know.
This I can do.
I know that we participated in a fundraising walk for Williams Syndrome this past weekend and we were surrounded by people who love us.
I know that Evan is finally starting to use the pronoun “I” when talking to us.
I know that Todd gave me a mother’s day card yesterday and in it, he listed all the things I do for Evan and it made me melt.
I know that Evan played with his new teddy bear and practice pretend skills without any prompting.
I know that I work with some of the most supportive individuals.
I know that all I need to do is make Evan giggle (not a hard feat) and my mood will lighten.
I know that the beach is a happy place for me, and I was able to go there a few weekends ago (BY MYSELF) because of the kindness of a friend, and the support of a loving husband.
I know that it brings me a type of peace and pride to share about Williams Syndrome to anyone who will listen.
For now, I can heed Brett Dennen‘s advice.
And it’s all about that, right, the moment to moment observations?
Take a chapter out of Evan’s book.
Bear with me, because I feel like I am going to be a little scattered when writing this. Could be the head cold or could be that this topic has been swirling in my head for a while now.
Evan is almost three. Gulp.
Where has time gone?
When he turns three, he loses early intervention therapies (and beloved therapists) and then becomes a part of the school system in our town. As a part of the transition process, we have several meetings with the child study team where we discuss Evan, schedule new evaluations to be done, look at results, discuss how he has been doing. and make an educational plan. The experience of being a special education teacher with my Learning Disabilities Teacher Consultant certification who now has a child with special needs is a whole different blog entry. Phew, it sure is.
But the one thing that popped up of course is that Evan has Williams Syndrome and the school district professionals had never heard of it, nor had serviced a child with it before. I was thrilled when the school psychologist brought along his intern to our first transition meeting and you could tell she had read up on WS. She asked a lot of informed questions and shared some things she had read. Then a few weeks ago I received an email from the school psychologist saying that they had already done a little presentation on WS for some of the teachers at the school and he hoped to educate most of the staff on WS before Evan starts school.
Great! Wow! They are really proactive, they want to learn and be prepared!
Well, that is how I felt at first and that is how I still “sort of” feel. (and believe me, I am nothing but happy with the process so far, they have been great) But I’m finding myself a little perplexed lately. I wear my WS awareness bracelet. I am THRILLED that the drama club in my school district has chosen the Williams Syndrome Association as their community service project. I will easily and happily discuss Williams Syndrome with any person who wants to learn.
But what about Evan?
about 32 months
Evan is so much more than the term Williams Syndrome. So much more than 25-28 deleted genes out of over 20K. So much more than the starry blue eyes, low muscle tone, heart issues, hypercalcemia, lack of stranger anxiety, the constant song in his heart- that can all be attributed to WS, or not?
He is so much more than that, but….he also is who he is partly because he has WS. It is part of what makes Evan the unique individual he is.
Do you see why I said bear with me? This is tricky. Tricky because now he has a label. He has a label and he isn’t even three years old. Teachers can look up WS on the internet the month before getting Evan in class, and assume that he will be overly anxious, overly friendly, and bad at math. Will they see Evan for Evan? Or will they see WS first?
I teach second grade. And I HEART my students. Big time. I am helping to promote a local event that will support the WSA. There is a ten minute clip that pulls excerpts from the movie Embraceable, that I find to be the most amazing way to learn about Williams Syndrome. You can find the clip HERE if you click on the Vimeo video. The teacher I work with asked if I would consider showing it to my class to spread more awareness with them. I was surprised at how I felt when I considered it. I faltered. I felt anxious, unsure. Would the kids understand? They LOVE Evan. When I bring him into school they follow him around like he is a celebrity. The children in my class are all approximately seven years old. Would this make sense to them? Would they still see Evan as Evan or would this new label be what sticks? Does that matter? I don’t know….
I watch the video clip and I cry. Every time. Not because I am sad. More because it makes sense to me now. Because I see my son in those clips. I see little bits of his possible future. I see myself in the faces of the mothers who are gazing at their child’s colossal smile. And I do not feel at all ashamed or badly. But there is still a part of me that wonders by me pushing the label of WS out there, so boldly, so fervently- what could that mean for Evan?
I want him to have opportunities. I want him to be loved, liked, played with, looked up to, laughed with. The same things most parents want for their child. Do I want him to be the poster child for WS? I don’t know. By blogging and putting our story out there, it certainly seems I do.
This is one of those entries where I would just love to hear your thoughts on this. I have heard from other parents who have chosen to not share the diagnosis with certain people in their lives because of different reasons.
Should we give others the benefit of the doubt and hope that they see our children as whole individuals, and not just a diagnosis?
Labels? Should they stick? What do you think?
I feel physical pain when I look at this picture.
This is hard to write about.
Tonight I walk the line.
Tomorrow I probably will too. I might stay on one side, linger for a little while, and then I will go back to the line. Teetering ever so slightly, trying to keep my balance.
I walk the line between complete acceptance of Evan’s Williams Syndrome, almost to the point of celebration- and complete worry, disappointment, and concern for his differences and how they will affect him throughout his life.
When Evan giggles and jumps in his car seat peering out the window, simply thrilled to be waiting for me to bring in groceries and to see me peek out of the door to see him- I celebrate his WS. I celebrate that he is filled with joy, simple, unadulterated joy about 80% of the time. When he whispers “I la you” before I leave his room at night- three words we have worked on for over a year, I celebrate. When the director of his preschool writes me a note, thanking ME for allowing them to be Evan’s teachers because of the light he brings to their lives- I celebrate. (I also blubber like a weepy fool- but that is another story)
When I watch video of adults with WS lamenting how difficult their high school experiences were due to bullying, I am concerned. When I hear an adult with WS say to a newly diagnosed child’s father, “I am so sorry to hear she has WS, it can be really hard,” I hurt. When Evan greets someone with a happy “Hi!” and then repeats it over and over and over no matter how many times the person responds, I feel a little weird inside. I feel guilt because of course I know he means well, he just wants the positive interaction- but I also know the recipient is wondering how to respond. And then I start thinking about what will happen when he is in middle school and he greets others with no abandon. When I listen to other children Evan’s age and I realize how far behind he is with speech and language, I can feel disappointed. I live in a little bubble sometimes, where Evan’s progress is only compared to Evan’s progress. Until, it’s not anymore.
When I hear E singing on the monitor, singing, “The Water is Wide,” and then humming the parts where I hum because I do not know the lyrics, I feel joy. Pride that my son has Williams Syndrome. That he has an emotional connection to music that even I cannot comprehend. When I talk to others and educate them about WS, I enjoy talking about it, I feel pride in every detail that I share.
But then I can be quick to say, “But don’t forget, Evan is not defined by his diagnosis. He is Evan first, and he just happens to be missing a 25 or so genes out of over 20K that we each have. It is just a small part of what makes him Evan. ”
I just keep walking that line.
The line between celebration and worry. The line between pride and guilt.
I can say that I am on the side of celebration far more than I am on the other side. I feel very blessed for that to be true. But the other side exists. And it can be an ugly, dark spot to step into.
That is why I walk the line.
Striving for Celebration
I can hear Evan in my mind singing along with me, “Hide it under a bushel?”
he exclaims with his hands awkwardly banging together in insistence.
“I’m gonna let it shine…”
Recently I made a decision to take care of myself in a more deliberate way. If you know me personally, then you know about it first hand because I have a hard time not talking about it. I decided in December to do a 14 day sugar detox. I signed up with a friend’s healthy living business- Smart Sexy Living,
and cut out gluten, refined sugars, and processed foods for 14 days. It was harder than I could have imagined and more rewarding than I ever thought possible. It taught me so many things about myself and how I look at food. I don’t want to make this whole post about my new lifestyle. But I do want to share why I have made this choice and why I am continuing to eat differently and treat my body better. For the past few years, since becoming pregnant and then a mother- I have had this nagging feeling like I need to take better care of myself. That I need to put myself first, at least as much as I can with all the different hats I wear.
I realized that I have a little issue with lack of control.
Just a teeny little one.
Don’t we all, though? We get upset when our child is sick, because we cannot heal him. We get upset when our car breaks down, because now it is out of our hands and in the hands of a mechanic. We get frustrated when someone cuts us off on the highway because we were minding our own business and following the rules, darn it! It is out of our control.
Out of my control that every day I can try as hard as I want to dictate what is going to happen to myself and my family but some time things are just not up to me….
But I realized, I can control what I eat. I can control what food and drink items I bring into the house. I can control how I look at food and how I treat my body. Those things ARE in my control. In fact, no one else dictates what goes in my mouth. As much as I like to blame outside influences- like advertising, or bad work days, the treats in the teachers’ lounge, or hormonal inbalance (that happens EVERY darn month!)- in reality- I still am the one in charge of my diet. And when I say diet, I do not mean diet like counting calories, points, following a set plan- I mean what foods and drink I consume.
It feels good.
It feels good to take care of myself in this way. To allow my light to shine. To realize that even though Evan, Todd, and my students come first so many times during the course of my day- if I am caring for my body by eating well, then I am actually able to take better care of the people around me. And in turn, I feel more confident about letting my light shine.
After the detox, Heather, the creator of Smart Sexy Living
wrote me an email asking if she could quote me for a testimonial. She quoted one of my emails to her as saying, “A family friend told me that I needed to quit my job and become a model.”
When I received this email from Heather, I balked at the idea of her using that quote. I felt embarrassed and felt as though I was bragging. She responded to my email saying she would gladly take out the sentence- but she then said, “not to be woo-wooy- but let your light shine!” and she included this quote:
“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It’s not just in some of us; it’s in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.“
It really resounded with me. Why are we so afraid to share our successes? To let our beauty shine through for everyone to see? We encourage our children to be who they want to be, to be proud of what makes them exceptional, what makes them beautiful inside and out. Why are we afraid of it? What kind of an example are we giving our children if we hide behind our beauty and our unique abilities?
By cutting out gluten, refined sugars, and processed foods (I’m not perfect, but this is what I am trying, anyway)- I am letting my light shine. And it’s about time.
How can you let your light shine?
You know you are awesome, don’t hide it!
So it has been a coon’s age since I wrote last. (husband likes that saying) Okay maybe not that long, but since mid December. I thought I would be brimming with things to write about over the holiday break. The magic of Christmas morning, the quiet hope of Christmas Eve night. Evan’s day time hippotherapy session, family parties, etc.
All of those things did happen, but….I felt a little harried and tired when I did have the time to blog. So instead I chose to sit in the playroom with Evan or catch up on DVR with Todd. Or spend an hour in the kitchen cooking or baking. (more on that later-you can pick your chin off the ground now) And I am glad that is how I tried to spend the little bit of free time I did have while off from work. But my fingers have been aching to write, and I’ve been spending a lot of time catching up on other blogs, thinking, “I really need to get back into the groove!”
Hence, here I sit while Todd is playing with Evan in the other room on his new Ipad. Todd has been fighting a nasty chest cold for about three weeks now. Maybe longer. I asked him if he could monitor Evan on the Ipad for a little while so I could have some blogging time. Of course he complied, but I can’t kick the feeling like I shouldn’t have asked. Like I should have just gotten Evan up from his non-nap and put my alone time off for a little while longer. I often feel that way. That I should leave a gathering early to get home, because Todd is caring for Evan. Or if I go to a workout class, I feel like I am being a little neglectful as a mother and wife because I am doing something completely for myself.
So I know most of you are probably thinking, get off it, Erin. You know you deserve your own time- we all do. Happy Mama means a happy child, etc. etc. And I do know that. I know it like I know I shouldn’t speed while driving. I know that brussel sprouts are good for me.
I know these things but I don’t necessarily live them or believe them deep down. I love this new Jazzercise class I am taking. LOVE it. The teacher is a friend of mine that I met through an early intervention program where our sons both attended. She is spunky, energetic, and a very good instructor. I leave that class sweaty and feeling lighter in my orthopedic sneakers. I’m kind of not exaggerating with that one. The first class I took she said something like, “this is your hour, right ladies??” and I thought, you know what, yes, this is my hour. If I want to jazzercise with it, I can. If I want to reorganize Evan’s closet, I will. If I want to read endless recipe blogs, I will.
And this is why I decided that I need to Release.
My 2014 word is “Release.”
I’ve never done a theme word before. Too hokey maybe. Resolutions only last about ten days. But I thought, I want to try. I want to give myself a focus. So I thought on it for a few days. What would be a good word to keep in the back of my mind as I face new experiences this year, both good and bad. I kept coming back to the idea of letting go. Letting go of guilt. Letting go of worry. Letting go of doubt…. of insecurities, of pain, of comparison.
Like when you take a deep breath in with your nose and fill your stomach with air and then release it slowly, for at least five seconds.
That is what I want to think about this year. Releasing. So that there will be room in my heart and mind for better things.
and all of these:
I know there will be plenty more of these moments in 2014, and I plan to hold them in my heart and mind and try my darndest to RELEASE the rest. Will you join me?
So I sit here in quiet. Beautiful, thought-provoking quiet. I used to lament the fact that I never had time in our house by myself anymore. Todd and I have always been good about letting each other have our “me” time, whether that means going to an exercise class, going camping, blogging, out with friends, etc. But just by the way of scheduling and being a mommy- I never got the house to myself. Well wouldn’t you know it, going back to work actually provided me with not one, but two days where that happened. Even if just for a short while. It’s weird, I keep thinking I hear Evan on the monitor that isn’t even turned on. Since I am a teacher in N.J, we still get off for the annual NJEA convention in Atlantic City. This year since there was an election for governor, we also got off on election day. I decided Evan could still go to school, since he loves it so much, and this way I would get more done.
So I decided to spend election day working on insurance phone calls and paperwork that had started to pile up. In my crazy little head (actually the Gaynor cranium is not a small one), I had thought it would be a great day. A day that would clear my mind, and get all that insurance stuff off of my shoulders and some more money in our pockets from reimbursements to come. Oh Erin, silly, silly Erin. How quickly you forgot how incredibly frustrating it is to go through menu after menu of automated voices. How infuriating it is to speak to four different people at the same insurance company but only one of them seem to have an idea of what is what. How emotionally exhausting it is to realize how many therapies your child receives and how much it all really adds up to financially. And honestly, we do not have it that bad. I know our situation could be much much worse. But Tuesday afternoon, after about five hours of sitting at a laptop with two different phones and bills strewn around me, I felt myself start to crumble a bit. I popped on the beautiful piano music of Alec Sweazy.
|Can’t you see Evan in his kind eyes and smile?
I felt myself relax and the tears flowed a bit. Not in frustration though. In appreciation of Alec’s talent and hope for Evan’s future. Alec also has WS and he is handsome, talented, and honest. On his website he mentions the meaning behind some of his compositions. He says this about one song:
I’m Still Standing — “As a student in elementary school… being treated like a scab… other students picking on me and beating me up. It hurt a lot. I tried to let people know of the threats, calling me names, pushing me down stairs. It was like having monsters with laser beams for eyes coming after me, destroying me from the inside out.”
Of course this tears me up from the inside out too. Some of my worst fears are of Evan being teased and bullied.
But then he also writes this about another song:
Long Time Coming — “This project. To have goals for yourself in life… and the CD is probably the biggest thing I’ve done in my whole life. I’m pretty sure I haven’t done anything that takes so much patience, doing things over and over again. To keep it moving takes many steps. Many people are needed to get a big project like this off the ground. Who would have thought, after the variety shows in junior high school, that this is where I would be now?”
Thank you Alec. Thank you for sharing your talent and your honest feelings. It scares me, but I know not to be driven by fear. It will get me nowhere.
Here is a little glimpse into how Evan reminds me not to fear. (There is no video, just audio)
He “gets it.”
at two and a half years old.
So lucky to be his mom.
So gosh darn lucky.