Archive of ‘honesty’ category
My stomach lurches. My back is dripping with sweat. I lunge after Evan time and time again to make sure he does not run down the aisle of the theater. I hold his hand and let him lead me to the lobby doors. He loudly shouts, light! light! light! and insists on getting to the “light.” Against my better judgement, I take him into the brightly sun lit lobby and let him run around, making sure he doesn’t touch the trash can, go up the steps, touch the other patrons, run out the front door, you name it. I feel my lip trembling and the warmth of tears touching the corners of my eyes. I feel jealous of the other parents sitting in the theater with their child who is happily watching the show. I then feel guilty for feeling jealous. This is his field trip, and not only that, but it is a live musical performance. I had been incredibly excited for this day, to share something I love with my son who has an uncanny connection to music. I was SURE he would love the experience. I hear familiar music ringing in the background. A song Evan knows! I was sure he would be happy if he heard the music, I was sure I could sit back down in the seats and join his class for the last five minutes.
I was wrong.
I tried to sit, and E crawled up my chest, and tried to get away from me yet again. He carried on loudly, protesting and wriggling all over our laps. Todd leaned over and said that we might as well leave, since it was almost over anyway and Evan clearly did not want to be in the seats. We were fighting a losing battle. We scrambled to gather up our things and get out of there with some sense of dignity. The parents, teachers, and children from E’s school watched the show intently, with popcorn bags and drinks in their laps.
His car seat buckled, his bags strewn about the back of the van. I had to go to work to get in a half day and Todd was bringing him home. I kissed Evan goodbye and felt my eyes film over. Todd asked if I was okay but I couldn’t muster the words. I realized that my reaction didn’t seem to match what had happened. Evan is a two and half year old. Two year olds don’t necessarily want to sit for any length of time. Why did this hurt so much?
I walked through the stinging cold wind and felt my cheeks burn. My stomach was tied in knots. All I wanted to do was sit alone and cry. It had been a while since I felt that way. Since I felt like we were outsiders. There was a sea of happy, healthy children who could watch a show, communicate their needs clearly, and be engaged. And Evan was hanging out in the baby pool, splashing about, not caring if he was a part of the sea or not.
My friend came over with her son over the holidays. Her son is only a few months older than Evan. They are buddies. We shared pregnancy adventures, new mom doubts, laughs, and tears. She is one of my dearest friends. While our boys were infants, her son would achieve milestones months and months before Evan.
It made sense at the time because he is ten weeks older. I never worried or focused on it. I remember thinking, Evan would get there in his own time. After receiving E’s diagnosis, the gaps became wider. Well…actually they always were wide, I just accepted that they would not close in like I had thought they would. Her son is extremely verbal, always chatting,using multi-syllabic words, complex sentences. He tries to talk to Evan and Evan bounces happily in front of him, gazing at his buddy with awe and love. He often will try to say something, but it comes out more like a babble because he is so excited. I love having them together, since they have known each other since they were in our bellies.
But I would be lying if I said it doesn’t put me right back to the baby pool-big sea situation sometimes. I watch Evan do his own thing, happily splashing away, unaware of any development gap or difference. Repeating a string of sayings over and over again. “Here we go!” “All aboard!” “Light on?” I love hearing our little guy talk. It’s just a little different when you have an example of age appropriate speech right in front of you. My friend’s son uses interjections, adjectives, a rich vocabulary. I could listen to him talk for hours. I videotaped him counting a long time ago when I was babysitting him because I found it amazing to hear him count. Evan is using two word combinations, and he only really adds on the word please to make the second word. And who cares, right? Certainly not Evan.
E happily splashes in his baby pool. His smile does not fade when another child expresses his or her need more clearly than him. He does not notice that he is wearing orthotics and still using a wider gait and walking on his tip toes. He does not mind that the children at school are sitting in their chairs without any straps and buckles and he is strapped into a booster seat to sit at the table. He does not catch the second glance the mom in line gives him and me when I say he is 2.5 and he is shouting vowel sounds in the line at Target.
Evan loves the baby pool. He loves when others allow him to enjoy the baby pool. He also loves when you jump in with him. Play with him on his level, see the water through his eyes. When he is allowed to push buttons for a little while. Allowed to shout church hymns at the top of his lungs in the grocery store. (only his mama knows they are actual songs) Allowed to turn on and off the light switch a few times every time you enter the room. Allowed to chase the stroller so he can spin the wheels for a little while.
When I was a little girl, I could spend hours in the baby pool by myself. Splashing around, using my imagination to pretend I was floating in the ocean, that I was a mermaid waiting to be rescued. It’s not a bad place to spend some time. If Evan doesn’t mind it, there is no reason why I should be concerned. Doesn’t mean he won’t still receive swimming lessons or that he will not be asked to try out the deep end at some point. But for now, the baby pool is just right for him.
Splash. Smile. Release.
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:
Here is a little glimpse into how Evan reminds me not to fear. (There is no video, just audio)
Ok, I feel the need to clear something up.
Indeed, I am a working mother.
And sometimes, I manage to make it through the day alive and mostly well with a happy son and a somewhat pleased husband.
But more often than not, there is dirt on our kitchen floor that you could write your name in. There is laundry that I can never seem to get through. There are several months of insurance claims that I need to submit, and for some reason I keep avoiding. I blow dry my hair and actually “do it” about three times a month. I left Evan’s “nap bag” at home today, I forgot my water bottle, and then I was picking up Evan from school this afternoon before I realized I had left my purse at work and had to go back and get it. I yawn about 25 times in the afternoon hours. I forgot about Evan’s OT appointment last Friday, thank goodness for Google Calendar reminders on my phone.
I still miss Evan while I’m at work. I miss him terribly sometimes. It can be hard to hear stories about his day that I have had no part of. It feels strange to not get to work early every day, and to leave right on time without working late because I have to go pick Evan up from school. I buy the ready made rotisserie chicken from Shoprite because I forgot to get chicken out of the freezer. I often lament the lack of time I have with Todd one on one, but when we do have time to spend together and catch up, we often just need to rest because of how tired we both are.
Don’t get me wrong, things are going better than I expected. Mostly because of how incredible Evan’s school is. And I truly do feel very blessed to have the job I do.
But as I stated before, being a working mom is no joke. And I give props to any woman or man who is navigating parenthood while also holding a full time job in or out of the home. It is quite the experience.
|Evan, the human boombox.|
here we go.
I’m joining the hundreds who participate in Five Minute Friday.
One of my blogging heroes, she feels like a mentor really- Lisa Jo Baker hosts this feature every Friday. We are to write for five minutes straight, no editing, overthinking, or premeditating our entries. Pretty tall order for a gal like me.
But this is good for me.
So I do it.
This week’s topic is: True
What is true about me?
I am clumsy, I have to think very carefully about every step I take to avoid my ankles collapsing out on me. My friend once said she wanted to put me in a bubble to protect me because that would be the only way I would not fall.
I hurt easily. Not just physically, in fact not really physically at all. I bruise easily on the outside but I don’t feel that pain. I bruise much worse on the inside. Words sting and wring out my heart. I wish they didn’t, because nothing should bear that power over me, but they do.
My son means the world to me. I wish I could put into words what his smile does for my soul. What his tears do to my heart. What his unknown future does to my fears.
I wish I could sing for a living. I have realized this most recently as I have found a new audience in my son. I wish more than anything that I could somehow do theater as my full time job. Directing young people who have not been tainted by the world yet. Hearing their voices every day so my voice can stay strong.
Five minutes are up.
|“It’s a major award!”|
I seem to have received the Liebster award.
A fellow blogger, Blaine Turk, nominated me for this awesome honor. This award is given to bloggers, by bloggers. It’s purpose is to encourage new writers with a small number of followers to continue their blogging. Blaine was extremely sweet and said she appreciated my honesty so she nominated me.
So the way it works, in order to accept the award, you have to write 5 interesting facts about yourself and nominate 3-5 other blogs with less than 200 followers.
So I will nominate first, then share facts second.
1.) Star in Her Eye. Heather writes primarily about her daughter, Fiona who has a rare condition called Wolf -Hirschorn Syndrome. My favorite post of hers is here. She has such a gift of expressing her thoughts on the page.
2.) Natalie Falls. I think Natalie might have more than 200 followers, but I can’t find the list on her page. But I have been following Natalie since I started blogging and I adore her blog. Her writing is simple and powerful. And I love her photography. My heart is full after I read her entries.
3.) Williams Syndrome Smile. The author Vanessa is a friend of mine who I met through our online WS community. She was apprehensive about blogging and I encouraged her to grab her computer and do it! I am so glad she did, because hers is one of my favorite to read. I think you will agree.
4.) Love the Blink You’re In. I met Ashley once IRL once, at a local MOPS meeting back when she was feeding both of her girls bottles in their car seats on the floor. I remember thinking, what a pretty girl with beautiful babies. And I bet she is more tired than me, but she looks great! 🙂 Her blog is also beautiful and upliftin. She writes in a really lovely prose and who can resist her edible little girls?? Our children are only a week apart so it is fun to follow their stories.
5.) Brewing and Chewing. Since there are no “official” rules to the Liebster, I had to nominate the husbo. As his other half, I know very well how incredible his mind is. He is always thinking, dissecting, pondering. And his blog is a reflection of the journey his thoughts can take.
Please take the time to check out these bloggers, I promise you won’t be disappointed.
5 interesting facts about me:
1.) I belonged to American Coaster Enthusiasts as a youth.
2.) I can’t bend my right pinkie finger due to a kick ball injury.
3.) I played Calamity Jane in my fifth grade play and my mother made my whole costume.
4.) I can quote the majority of the movies The Parent Trap and Splash.
5.) I have lived next to Philadelphia my entire life and I have never sat through one of the Rocky movies.
I will be the first person to admit, I love Facebook. Before having a smart phone, I would turn on the laptop in the morning and sign onto my email website and Facebook. Like clockwork. I would look anxiously with excitement to see how many notifications I received overnight. Did anyone “like” my new pictures from vacation? Did I receive any new friend requests? Did my friends upload pictures from our night out last week? What is taking them so long?? I would drink my one cup of coffee, eat my egg white in a mug breakfast and read my facebook notifications, before leaving for work.
Then motherhood came along. I still managed to sneak in time to check it. Now it was more about posting picture after picture of our newborns squishy face. Then I started to pull away a little. More because of sleep deprivation and because I had to use the lap top to check it, and I was constantly attached to a little person and that made it difficult. When I did use it though, I remember feeling ravenous for the contact, to check in with my friends and family and see what they had been up to.
Enter the world of smart phones. I fought it for a long time, saying, “I don’t want to be constantly connected. I don’t need anything but the ability to text and call.” But as time went on, my phone was deteriorating little by little, until it barely worked at all. Somehow I made the decision to get the Samsung Galaxy, the first one they put out there. I had Facebook on it as an application, but I didn’t get notifications automatically…..
Yep, it only took a few weeks before I added that little feature.
So then I am spending my days sitting in on therapies with Evan, taking him to music class, reading books, cutting his food up into miniscule pieces…and intermittently checking my phone to see if I received an email, text, or facebook notification.
Then this lovely little nugget went viral:
How to Miss a Childhood by Hands Free Mama.
|A good reason to have my phone outside. Good photo opps.|
Ouch. More like, OUCH. It hurt to read it. Because even though I know in my heart I am a good mom for Evan, I know he is well taken care of, I also know that habits can start at any point. He could be observing my habits at any age. I could see myself in some of the points in that post. I carried my phone with me room to room. I would bring Evan into the backyard and my phone would be by my side if not in my pocket, if not in my hand while I pushed him on the swing. I would do an activity with him and immediately pick it up following the activity because that is just what I did, it helped me feel “connected” to an adult world that I felt a little isolated from as a SAHM.
I have had small squabbles with the T man over his phone usage in the past, and I realized I was such a hypocrite. Why would I judge his pulling his phone out often when I was doing the exact same thing.
Then the other day I read this article on a friend’s Facebook page. (Go figure.)
Now, just so you know, before I go any further. I am not quitting FB. I have become fond of blogging, and I know FB is a great way to share my entries, and I also have made some close friends through the WS support boards. AND…..ifi’mbeingtotallyhonestIcan’tquit.
The article about the REAL reason to quit just spoke to me. The “What Ifs” were the most profound. I am going to copy and paste them here because I feel like they are really important.
Quoted from The REAL reason to quit FB by Matthew Warner
- What if the next time I have 5 minutes in line at the store, instead of checking Facebook, I strike up a conversation or a smile with the people around me?
- What if the next time I have 2 minutes at a traffic light, instead of checking Facebook, I say a prayer to the God of the universe?
- What if when I have a 15 minute break during the day, instead of checking Facebook, I put some time into planning a meaningful evening with my wife?
- What if when I have 30 minutes before bed, instead of checking Facebook, I read a spiritual masterpiece that changes my life and the lives of those around me?
- What if when I have my lunch break at work, instead of checking Facebook, I strike up a meaningful conversation with a co-worker and ask them about their life?
- What if when commercials come on, instead of checking Facebook, I jump on the floor with my kids for an impromptu wrestling match?
- What if the next time I get an hour on the weekend to relax, instead of checking Facebook, I put on some amazing music and get lost in its beauty?
- What if the next time I feel like spending 20 minutes crafting a silly status message that will surely garner lots of *likes* on Facebook, instead I spend 20 minutes writing a personal note to somebody I care about?
- What if the next time I meet somebody new, instead of immediately looking them up on Facebook when I get home, I embrace the adventure and mystery of getting to know somebody new by actually spending time with them?
- What if when I finally get the kids to bed, instead of checking Facebook, I stop for a few still moments just to watch them sleep? And then pop open a bottle of wine with my wife?
So I decided What If I tried this? What if I put aside time of the day where I can and cannot check Facebook, and I make a deliberate, conscious effort to keep a little less tethered to my phone altogether. I started a few days ago, and I only allow myself to check when I wake up in the morning before E gets up, during his nap time, and after he goes to bed, but not when I am spending time with Todd. We have been known to have the television on, watching one of our favorite shows, with both of us staring at our phone screens. I want to change that, not just for us, but for Evan. I don’t want him to think we are more interested in what is on our phone screen than what is going on right in front of us. It has been really interesting. At first it felt a little odd, like I was forgetting to do something important every few minutes. (which also made me realize I was far too addicted to it). But after a few days, it really does feel good. Evan walks up to me with a book in his hand, and before I might have had my phone in my hand and I would finish whatever I was doing and THEN pick him up. I noticed several times over the last few days, I was already there ready and waiting for him, no hesitation.
|Mama, does it really matter if people “liked” your status update?|
Again, I am not writing this to be self righteous and preach against Facebook. I dig it. I dig it hard most of the time. But I think I have realized that I was using it during times that I didn’t need to. Maybe you are too. Maybe you aren’t. Maybe you don’t even like Facebook. Maybe this whole post makes you feel better about yourself because you never got into Facebook and you think it is a waste of time. But stop for a second and think about your technology use in general. Think about what you could be doing with your time otherwise. It might help to keep things in perspective.
Now off to eat a snack and check my notifications…. (because Evan is sleeping and Todd is not feeling well so he is resting.) I have my own permission! Sigh…..
I’m a work in progress…sue me.
|A Year Ago|
Today is May 1, the first day of a whole month dedicated to spreading awareness about Williams Syndrome, the condition our little dude has.
It is hard to believe that a year ago, we were struggling with figuring out what was causing Evan to regurgitate almost everything he drank or ate. We were going back and forth from the GI doctor, to the pediatrician, to the feeding team, where we ultimately began down the road of discovery and acceptance that our son did not just have run of the mill reflux issues and some minor developmental delays. Instead we learned he was born with a rare genetic condition. Something that was determined at conception, before we even met our son. Relive that experience here.
Last summer, I was in a much different place. I had trouble going on the Williams Syndrome Association website. Trouble looking at all the pictures. Seeing how similar Evan looked to all the children. Reading how Evan’s development mirrored those of other children with WS. Worrying about the future. Wishing Evan would have those 20-30 missing genes so he would be okay. So we would be okay.
My, the difference a year makes. We are just over 11 months from the day we found out and I have a much different outlook. Don’t get me wrong, life is not roses and sunshine every day. But as I have said so many times, that is true for anyone, not just for my family. I have gained so much more than I ever could imagine. I ended up deciding to stay home a second year with Evan, and that has been incredible. It has taught me so much about who I am as a mother. Who I am as a person. I have gained many new friends. Some who I have had the pleasure of meeting in person, and some who I talk to more often than my own husband through the beauty of technology. These women are amazing. And to say that we are connected is an understatement. We just “get” each other. And thank goodness for that. The WSA website is now a godsend. I use it often and I use it as a resource for others as well. I have learned to be okay with not only being a teacher of children with special needs but to be a parent of a child with special needs. I have been given the very kind compliment several times, “God knew what he was doing when He blessed you and Todd with Evan.” It may be cliche, but it is totally the other way around. We are the lucky ones. Hands down. Just spend ten minutes with Evan. Two minutes, even. You will see why.
This month of awareness is important. It is important because the more people know of this rare condition, the more research will be done, the more parents will know what to look for, the more people will be more accepting of “invisible” disabilities. Of course these are just hopes of mine, but I am so darn proud of Evan and I am not afraid to shout it from the rooftops.
I think there is a little spark in our guy. A spark that hinders him from walking on time, or using his consonants correctly. A spark that causes him to enjoy bouncing, rocking, and moving constantly. A spark that engages you immediately. A spark that draws you in like a moth to a flame. A spark that causes his eyes to sparkle like the Fourth of July. A spark that cause you to tear up when he accomplishes something new.
I can only pray that his spark will continue to burn brightly. That it will carry him through life with that smile, that love for interaction. For today I cannot worry about the possible bullies, the search for acceptance. We will face that as it comes. For today I celebrate our son. Today I celebrate all individuals born with Williams Syndrome. And I hope that you will too, by educating yourself and sharing with others. Do me a favor, Watch that video. Share it with your friends. Consider donating to the WSA. Look with kinder eyes on the individual with a disability when they walk by you in the store. Practice humanity.
Ok I am joining in the Five Minute Friday Fun with a 5 min writing piece, no editing, no over-thinking, just type type type until the 5 minutes are up. Here is the backstory of Five Minute Friday over at awesome Lisa Jo Baker’s site.
Here I go……
The prompt this week is:
During speech therapy today, Evan crawled over to his bin of stuffed animals and picked up the bear that talks in conjunction with a book. It is a mama bear and the book has the voice of the baby bear asking questions of his mama. He immediately started pressing the paw, and expecting to hear the mama’s voice. I was in mid conversation with the therapist, trying to interact with Evan at the same time as she was giving suggestions about feeding. “Broken, baby, I’m sorry, it’s broken.” Evan looked up at me with those big glistening blue eyes and looked puzzled. He grabbed the paw and shoved it in his mouth, biting down on the button, hoping to hear the mama bear’s voice. “Broken, Evan, the bear is broken. I’m sorry.”
Truth is, it isn’t broken.
It just needs new batteries. As do several other toys around the house. Months ago we were so proud when Evan learned how to turn on and off different toys. We rejoiced that he had the cognitive ability to understand cause and effect. That he was interested and persistent, and had a pretty amazing attention span for a young toddler.
Then we went to see a researcher who recommended we cut down on the toys with bells and whistles. Mom friends suggested not replacing batteries, just let the sound mysteriously stop working and let Evan use his imagination make the sounds with his voice.
Looking at his confused eyes and seeing his disappointment did something else, it broke my heart.
Five minutes are up!
Check out Lisa Jo’s blog and join the writing party.
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