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 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!
|First Day of School for Evan (27 months) September 2013
Well….I did it. We did it. We made it through week one of Project Return to Work. The last day I taught in a classroom setting was in April of 2011. I was 9 months pregnant and incredibly eager to meet my son and become a mother. I can honestly say I had NO CLUE what the next two years would bring.
None. Zip. Nada.
I didn’t know the excruciating pain of labor.
I didn’t know the extreme joy of holding my first born child after carrying him around for ten months and five days.
I didn’t know the turmoil that sleep deprivation can do to your emotions and your psyche.
|Saying hi from my classroom.
I didn’t know much I would need and love having my mother in law stay with us when I struggled with anxiety and insomnia in the months after giving birth.
I didn’t know that being a mother is not necessarily an inherent skill you are born with. It takes work and experience just like any other job.
I didn’t know that I would miss getting dressed for work in the morning and the adult conversations that go along with having a job outside of the house.
I didn’t know how guilty I would feel for missing those things.
I didn’t know how much guilt stinks.
I didn’t know how being a SAHM sometimes feels like high school all over again, with the mommy cliques and the comparison conversations that go on at the playground and indoor play facilities.
I didn’t know how much richer my relationship with my mother would be through becoming a mother myself.
I didn’t know how important it would be to make sure to have a child free conversation with Todd every day.
I didn’t know how hard it would be to leave Evan with a babysitter. We still have not “hired” someone outside of our circle of family members and friends.
I didn’t know how exhilarating it would be to have a baby free dinner with Todd.
I didn’t know we would find out our child has a rare genetic condition.
I didn’t know how life changing a moment in a doctor’s office could be.
I didn’t know how hard it would be to be around my friend’s children for a while.
I didn’t know how desperately I would try to find a reason to believe the doctor might be wrong.
I didn’t know that one day I would realize my child was going to change people’s lives. For the better.
I didn’t know how music would bring so much joy to our child.
I didn’t know that I would end up taking an additional year off and have no regrets.
I didn’t know how I would go from wanting to work, to not wanting to work, to needing to go back to work and all the emotions that go along with it.
I didn’t know the power of online communities.
I didn’t know I would make lifelong friends on a support board.
I didn’t know I would wear a Williams Syndrome awareness tee shirt to the store and hope that someone would ask me about it.
I didn’t know how the half hour after nap time would become my most favorite time with Evan.
I didn’t know how important early intervention is.
I didn’t know how much I would value Evan’s therapists.
I didn’t know how hard it would be miss some of Evan’s therapy sessions because of work.
Again, I didn’t know how much guilt can really stink.
I didn’t know how hard working moms work.
I didn’t know how hard stay at home moms work.
I didn’t know conflicted I would feel about being both of those things.
I didn’t know how hard it would be to give up the amount of control I have over Evan’s life.
I didn’t realize how much I value being in control.
I didn’t know how two big blue eyes could just fill up my heart and tear up my insides all at the same time.
I didn’t realize how blessed I was, and would continue to be.
I was given the distinct honor and pleasure of guest blogging over at Mommy Mentionables today. Melanie’s site is helpful to new moms, seasoned moms, and bloggers looking for tips and ways to improve their sites. Please take a second and check her out! Tell her I sent you!
“Don’t feel guilty for loving the things you love about your job. Don’t feel guilty for missing him. Use up all the emotions. Own them, use them. They will steer you correctly.” – Obi Wan Jamie
|When we met IRL for the first time June 2013
So I have this friend. This AMAZING friend Jamie. We met on this fancy thing here we like to call the internet. We met through a support board for families of individuals with Williams Syndrome. Her daughter, Norah, is about 4 months older than Evan and I just adore her. We have gotten to know each other through Facebook private messaging, text, and phone calls. Whenever I am feeling doubtful about something, or I am worried about Evan’s development, I don’t google it, I send Jamie a message. She is one of those people who just “get it.” And not only does she “get it,” but she also gives incredible advice that sounds like it should be coming from a woman far beyond her years. I call her Obi Wan on the message boards because her responses to posts are always so thoughtful and…well, wise. Can’t think of a better word for them.
Last week I was having a moment (one of many) where I was struggling with the idea of going back to work. I messaged Jamie in a moment of panic and told her I was starting to crumble. She got back to me and part of what she said was the nugget I opened with:
“Don’t feel guilty for loving the things you love about your job. Don’t feel guilty for missing him. (my son) Use up all the emotions. Own them, use them. They will steer you correctly.“
|Getting in good cuddle time
I have heard over and over about how working is a part of who I am. Being a teacher is sort of part of my genetic code, as much as missing the elastin gene is part of Evan’s. I have felt that myself at times when I missed standing up in front of a classroom. I actually think my true love is theater, children’s theater primarily, and being a teacher is sort of a form of that. (sometimes….) But since staying home for the extra year with Evan, I have become very comfortable in my role as mother, therapist, housekeeper, paperwork filler-outer, etc. I like being the one who knows the most about Evan. It feels right somehow. But we also knew as a family that I needed to go back to work for financial reasons currently and in the future.
Hence the transition period we are currently in. But what Jamie said felt so incredibly helpful to me. It gives me permission to feel sad when I walk up the ramp of his school on Tuesday to my car and feel the sting of tears that I know will come. To feel exhilarated when teaching a new skill to my students in a few weeks and knowing they are “getting it.” To feel anxious when I think of Evan taking a nap on a mat for the first time, and wondering how he will do with the other children, will he interact? Will they be frustrated by his speech patterns? Will they love him? Permission to feel excited to see the students I left for maternity leave as second graders who are now fifth graders. To feel comfort in the hugs of my staff family who have gone through what I am going through before.
I like that concept. Owning my emotions. The good, the bad, and the ugly. Own them and use them. Use the sensitivity I have as a mother of a child with special needs to better understand the parents of my students. Use the sadness I feel from missing Evan eat his lunch or play on the playground to be a better mom to him when I DO have time with him. Make it count. Love what you love and miss what you miss. It is all part of the package of being a working parent. Hoping I can heed my own advice in the coming months.
No crisis, but it was catchy eh?
Just typing the subject line of this post, made me think about my identity and how it has changed so much. I used to pride myself on my spelling ability. To the point of being a snob about it. I had a dear friend in high school who was in all honors and advanced placement classes but she would write the word to for too, or your for you’re and freind for friend. This always made me feel superior in some way because spelling had always come easily to me.
Typing the word identity today took me about 5 tries.
Yup. Things change.
Color me humbled.
In the past few weeks I have discussed identity with at least three different people on different occasions. It is such a complex concept. The idea that there are things about us that not only do we associate with our character, but that others do as well. When looking up the definition of the word identity, the word “sameness” kept coming up. Interesting. I had always thought identity was multifaceted, changing, colorful, textured. Same wasn’t really a word I associated with it. In one of the conversations, a friend asked, “Who am I? I am not sure who I am anymore, what is my identity?” She lamented that she was a mommy now, and that is fine, but she wasn’t always. She was a lawyer, a wife, a friend. Is she still those things? Or is her identity totally connected to motherhood? Another conversation I had touched on the different identities associated with working and stay at home mothers. My friend said that she sees herself very differently than her friends who stay at home with their children. I wasn’t sure where I fell in that discussion so I decided to examine the trajectory of my identity.
|Junior Year HS
|Senior year HS at a haunted house
As a teenager, my identity was wrapped in my friendships, my classes, my favorite bands. I listened to Tori Amos so I was early days emo. I wore peasant tops and flowy skirts, so I was hippie. I twirled a flag in the color guard so I was a band geek. I wore flannel shirts so I was grunge. All depended on the week.
|Sophomore Year (I’m all the way to the right in the blinding white peasant top)
I constantly fell for boys who only wanted to be my best friend so I identified with Betty from the Archie comics. I was overweight so my identity was affected by who teased me that week or who complimented me and made me forget my monstrous insecurity for a second.
|College-not many of these pictures are scanned in. Thank goodness.
In college, my identity was tested constantly by temptations left and right that I had never faced before. The little girl who was scared to go to parties because of the “drunk kids and druggies” who supposedly went to them was now knee deep in the trenches, trying to decide if she needed to be a part of that scene in order to fit in or be happy. I had once considered myself a strong student, many subjects came easily to me in high school. (aside from trig and geometry….ugh) College challenged that part of my identity big time. I had to study HARD for the first time, into the wee hours of the morning with note cards, outlines, and the Titanic instrumental soundtrack playing on cassette tape in the background. Gag.
Not until I was far into my education classes did I feel comfortable with the material being presented. I was constantly questioning if I could handle the work or not. I grew up a LOT in those four years. I worked hard, played hard, and made friendships that were real. For the first time I began to realize my value as a person. My value as a woman and a friend.
Post college years were interesting. First job, first apartment on my own, first boyfriend. (yup, late bloomer, sue me) My identity was almost solely associated with my occupation. During ten months
|During rehearsal for a show in 2002 maybe?
of the year I was a teacher, and I was proud of it. My students were my life. I referred to them as “my kids.” I would go home at night and prepare for the next day mentally, how will I connect with them? How will they receive my lesson tomorrow? Two months of the year I was the director of a children’s theater workshop. My identity during that time was all tied up in the show I was doing and the kids I was directing. I still had a life on the side,I was blessed with a pretty full social calendar. But because I threw myself so hard into my job, I put that before everything. If you asked me who I was, I would say a teacher before I would say a woman, or a friend, or girlfriend. It just made sense to me.
Enter T Money. My identity was turned upside down. I now had someone to care for me, someone who had my back. For almost 28 years I had identified myself as the strong, sensitive girl who handled things on her own. I didn’t “need” anyone. Even though I desperately did not want to face life alone, it just seemed the cards I was dealt. Then this goateed, dazzlingly intelligent, sincere man entered the scene and he wanted to face the rest of his life with me by his side. Obstacles were faced together. We rejoiced in triumphs together. I was a wife, a lifelong best friend. We planned vacations together, picked out sofa colors. Ate out all the time, made other ‘friend couples’ and became a comfortable team. Happy to travel, discuss the future, and get an adorable dog.
|Day before Evan was born 5-26-11 (wearing same shirt that i danced in years prior)
Then I became pregnant for the second time, and this time, things were going smoothly. The baby was doing well and so was I. Aside from about 10 weeks of yucky morning sickness, I adored being pregnant. My identity was in the pregnancy. Not yet a mother. I did not identify with other mothers, just with other pregnant women. We were part of this special little community of people who have odd body aches, ruched shirts, and a ridiculous number of food restrictions. Lovely people would tell me over and over that I would be the BEST mom. I was so caring and intuitive, I would be a natural. I believed them. I acted humble and pretended I was unsure of how things would go but deep down I truly believed becoming a mother was going to be no big thing. Gulp.
|First week home
I became a mother. My heart was removed from my body somehow and was now swaddled in a Carter’s stretchy cotton blanket. His blue eyes gazed up at mine, looking for the person who gave birth to him, the person who he will call mother for the rest of his life. And I was broken. Broken into a million little pieces of identity that I thought I had together. I thought I would become a mom and it would just become another hat I wore. I managed to wear so many hats before being a mom, how would this be different? Since becoming a mother I have found that I need to stop assuming I know everything. I need to stop assuming I know anything, really. For I have found myself doing, saying, and believing things that I would have NEVER considered for a second before having a child. My identity was first that of a new mom. A new mom who woke up 5+ times a night. A new mom who feared she had post-partum depression every time she cried or had a down moment. Because having a baby was supposed to be 100% joyful and awesome, right? That is what I had been promised. So why was it so darn hard? Why did he cry for hours on end? Why was nursing so difficult? Everyone wanted to hold my baby, and I just wanted to nap. Did that make me a bad person? I would question myself and my choices constantly. Is the formula making him
throw up? Should we sleep train or not? Is he ever going to forgive me for only nursing him for one month?? Yup. That was just the tip of the iceberg.
Slowly, as my hormones got their act together, and we figured out a pseudo schedule, the pieces of my identity slowly began to gel and connect again. But this time, the multiple hats I wore were replaced with one big, ten gallon whopper of a hat that says Mama on the front. Gone were the friend, the wife, the teacher, the daughter hats. They were replaced with the Mother hat. And that identity became even more apparent when I made the decision to stay home longer with Evan, following his diagnosis. His goals became my goals. His feeding challenges became mine. His delays are mine, his smiles, his firsts, his songs. When he succeeds, I feel successful. When he gets hurt, I bleed. When other children look at him a little funny, I feel twisted up inside. When he smiles, I feel joyful.
I used to be Judgey McJudgerson about women who wore the huge ten gallon mother hat.
Shame on me for judging. Shame on me for assuming I understood until I wore the hat, spurs, and chaps myself.
Now almost two years after becoming a mom, I can feel the hats slowly starting to multiply again. The wife hat is reappearing, along with the friend, the daughter, the woman hat. The teacher hat made an appearance this past week when I subbed in a special needs drama class. And boy, did that hat feel fantastic. I had forgotten how much I love identifying with that part of me. I have a feeling the ten gallon mama hat is going to remain the largest one for some time to come. Maybe even for the rest of my life. But I am glad to also be re-identifying with the other parts of who I am.
I’m not sure I agree the definition of identity should use the word “sameness.” It feels permanent, and thank goodness our identity can change along with our life circumstances.