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Disclaimer: I am fresh off of being an audience member in Glennon Melton’s presence (of Momastery fame.) So I am borrowing a few of her insights with you, and not claiming them to be mine at all!
Glennon. In all her petite, wise, spunky glory.
I just spent a while trying to find references to Momastery in my early blogging days and I couldn’t find the one post I wanted. Probably because I am just so savvy with this technology that I lost the post in the transfer from Blogspot to WordPress. Sigh…. Anyway….
When I was a new mama, at home, delirious from sleep deprivation, and feeling lonely even with my beautiful baby in my arms- I found refuge in her writing. This post in particular put in words how guilty I would feel when everyone would say that I should soak in every moment, that time is going to fly, etc etc. When in reality, time was CREEPING by because of the awful anxiety I was feeling and the guilt that came with not being gosh darn happy enough! Hormones are awful awful things. Thank goodness they eventually even out.
She inspired me to change my blogging efforts to be more honest, more raw, to put my true feelings out there- however scary, ugly, and real they were. And in doing that, I have received a much larger response from readers.
And this is why.
Yesterday Glennon said something that made so much sense to me. So basic, so black and white, so simple. Yet, I had never really thought about it before.
There are a lot of very lonely people out there. People who have big beautiful families can be lonely. People who live by themselves can be lonely. People who work in bustling offices can be lonely. People who work at a computer screen all day can be lonely. Glennon said that we all like to stay on the surface with our discussions. Talk about counter top materials, where do we take our children to the doctor, our feelings on the latest big reality show on Bravo, etc. Those conversations are necessary. They keep us moving along. They are safe, easy. But what we don’t realize is that if you go down, really deep down, strip past the superficial layers and get to the real heart of each person- we are all the same. We all struggle with addiction, depression, anger, envy, lust, self loathing, fear, grief, you name it. You won’t find a person who has not been faced with something Hard in their lives. And when we get down to that layer, and we share those experiences, all of a sudden, we can’t feel as lonely anymore. It is just logical sense. You feel lonely because you think your problems are so big and so heavy and no one could possibly understand them. But the truth is, there are plenty of people. Plenty of people who have hit rock bottom and lived to tell the story. Plenty of people who have watched others hit rock bottom and stood by them faithfully while they picked up the pieces. Plenty of people who are still struggling and continue to put one foot in front of the other because that is all they can do. Our stories are unique to us, that is true, but there are common threads that are undeniable.
As a 37 year old (almost), I find myself feeling much less lonely than I did at 21 when I had the rest of my life ahead of me. I think one of the biggest reasons is that I am far more honest with myself and with my loved ones. I am still a HUGE work in progress, but I’ve come a long way from that young girl who felt unworthy of love. Both Glennon and a dear friend of mine said yesterday that they do not feel ashamed of who they are, their faults, their struggles- they own it, and they feel comfortable putting it all out there. I’m envious of that total lack of self judgement. But again, I’m working on it. As I am sure they both have had to in their lives. Remember, therapy, it’s a beautiful thing. Gift certificates should be available.
Am I right?
Wished I could just sit down and chat with her for hours.
Well, we’re married….the engagement happened a good 7 years ago. But it will make sense shortly.
Sorry friends, the whole plan to write one post a week sort of evaporated a long time ago, didn’t it?
But I know you understand. This working mom thing, is no joke. As I have mentioned before..here and here.
Just too busy doing things like this.
But that being said, things are going really really really well.
Evan is loving school. And I think school is loving Evan. (at least that is what they want us to believe to keep us quiet…. 🙂 ) just kidding….sort of.
Seriously, he is just one of those kids that NEEDS school. He thrives on it. Thrives on the interaction, the structure, the constant activity. Lordy be, the constant need for activity.
“Does he nap?”
“He must be EXHAUSTED when he gets home from school the way he goes goes goes all day!”
Yup. If I had a nickel for every time I heard one of those… Nope, hasn’t napped on a regular basis since he was about two. And when he gets home from school, he is still raring to go. In a more overstimulated-body-is-tired-but-mind-wants-to-keep-moving kind of a way.
But his teachers get him. I was so worried that they wouldn’t. That with the other kids, the two different classrooms, that it would be hard for Evan. Well Pshaw says Evan.
As usual Mom, I got this!
We had some worries in late August about Evan’s engagement with his peers and the adults in his life. If I am being honest, I was worried that the bubbly, overly social side that we had become quite fond of and accustomed to- was staring to dissipate. During the summer, his attention span had become much shorter, and his interest in objects had increased while his interest in socializing and engaging with folks seemed to have lost its luster.
I don’t think we even realized it was happening until we received some key advice from a very well regarded doctor who is one of the few experts in Williams Syndrome. She noticed it right away and encouraged us to go in a different direction with Evan, instead of worrying about any academics or even the fine motor school prep stuff- pour all our efforts into making Evan remember how rewarding it can be to engage with his peers and family.
My heart was SO full.
I remember feeling kind of lost, like maybe this was just our new reality with Evan. That it would have to be okay if he didn’t want to play with me or even just be with me without being “taught” to do so.
I needed to slow my roll, as my very dear friend Talia would say. Because it is now November, and I barely even think about it anymore. Evan will bring toys to me, just because. JUST BECAUSE. I mean….it’s hard to explain why that is so huge unless you know what it feels like to never have your child do that. He only would bring me things because he needed something or because he wanted me to manipulate the toy in some way. But now he just wants to share. He calls for me from the playroom. From his crib. From the front door when I leave in the morning. He asks for me when I am not here. These are all things he was not doing this summer. He will come over and say “Hi mommy!” and look at me with those eyes and I just melt.
This morning in church, he sat to my left in his stroller. Munching on some veggie straws. I do long for the day when we can have him sit in one of the chairs with us but for now, if we want to participate in any part of the service where Evan is there, the stroller it is. Two of his favorite songs opened up the service.
“Be Thou My Vision” and “How Great is our God.” I stayed seated while the congregation stood and sang in his direction because I wanted to see if he would sing with me. Instead, he stared at me with those eyes. His eyes twinkled with joy. He would squint every few lines and giggle at the memory of a song we sang when he was just an infant. But for almost every last word of each song, he locked right on my eyes and wouldn’t let go. I almost broke down in tears because I was so happy. He wasn’t watching my mouth because he liked the sounds (which he known to do). He was looking at his mama.
Things that can’t exactly be taught. But they can be fostered. And foster, gosh darn it, we will continue to do. Because it is what keeps my tank full. And hopefully, Evan’s as well.
Full. To the brim.
(well, from my three year old, anyway)
1.) Bubbles trump everything.
2.) Being socially open and friendly is a gift.
3.) Listening is a necessity and can be a learned skill.(sometimes we need to admit we are hearing and not listening)
4.) Patience. Patience. Patience.
5.) He CAN reach that phone/toilet paper roll/glass of water/key ring/doorknob/stack of important papers.
6.) On a related note, don’t EVER underestimate him.
Underestimate me?? Pshaw.
7.) Everything can be made better with the right song.
Yup. He’s singing.
8.) Slow down. When he takes each stair at a painstakingly slow pace, it’s a reminder that it’s okay to slow my roll. Let him turn the light switch on and off a few times. Take your time on the steps. Whatever it is will wait.
9.) Hugs rule.
10.) Birthdays are pretty great. Even when they make mommy a little sad because you are not a little squirt anymore.
Happy Third Birthday Buddy!
I have been thinking a lot lately about how difficult it is to come up with the “right” thing to say when a loved one is facing a tragedy, a difficult time, or is suffering in some way.
As much as I try to see the glass as half full- and I think deep down I believe it still is- bad things continue to happen. They happen every day. It is mostly out of our hands.
Luckily, there is good that happens every day too.
Thank goodness, right?
But as I get older, the tough times keep a rolling for loved ones and for me. I think some of it is just age, the older you get, the older everyone else gets, thus developing more health problems. It might be that when we are younger, we are shielded and protected from the “bad” that exists. When we are young, we don’t have to come up with the “right words” to comfort each other. If we see a friend crying on the playground, we just go up and give our friend a hug. Then we bring them over to play with us.
I think there is much to be learned from how we handled our friends’ tough times as children.
When I lost my dad, I heard so many different things.
“He is in a better place.”
“You will be with him again.”
“This must have happened for a reason, you will know someday.”
“He lived a full and rich life.”
Are those things true? Quite possibly. And maybe 6 months after losing him, those statements would have been easier to hear. But when I was ravaged by the shock, the pain, the awful emptiness of losing a parent- no words were enough. In fact, I barely ever answered the phone. I asked friends to wait to visit. I just couldn’t face the pain in their faces reminding me of my own pain.
There were no words. And that is okay.
When I recently lost another baby, I received an email from a friend who has moved to another state and she wrote: ” I don’t know what to say…..My heart goes out to you, Todd, and Evan.”
I can’t tell you how much I appreciated her message. She admitted that no words really fit the situation. It just sucks, and she wanted to send her love.
There were no words. And that is okay.
Please know that I am not faultless in this department. It is SO hard to sit by while someone suffers and not offer up some type of supportive remark. But I want to share that I have learned it is not the words you choose as much as the offer to sit with someone and mourn/kick rocks/suffer/laugh with them. The text messages I received from friends who just wanted me to know they thought of me that morning. That they wanted to know that if I wanted to yell, I could call them. If I wanted to come over and not talk about anything serious, I could. That they were just there. And that is more than enough. That was so much.
Sometimes there are no words. And that is okay.
My heart has been weighed down with this blog entry for about a week. It has haunted me actually. Needing to be written. I mentioned in my last post that I’ve suffered multiple miscarriages. So it’s not a secret, but for some reason I have chosen not to really delve into it on my blog. I think partly because my first miscarriage was so wrapped up in my father’s passing, that I didn’t really process it. Evan was born a year later, and we chalked it up to one of the very common first pregnancy miscarriages that we’ve read about.
But here I sit four years after that dreadful week where I found out I was pregnant, lost my dad and then lost our first baby all in one fell swoop. Since that point we were so incredibly blessed to become pregnant again (very quickly much to our surprise) and have a beautiful baby boy.
Evan Robert June 2011
We received his diagnosis of Williams Syndrome a year later. Since that point, we went back and forth about having another child. The discussion was laden with many factors. Our age, the possibility of having another child with a diagnosis, and my fear of another period of awful post-partum anxiety. Ironically, we didn’t really discuss the possibility of miscarriage. It may have crossed T’s mind, but I didn’t really consider it very seriously. I was more worried about what would happen after the baby was here, not the possibility we might lose another one.
If there is anything I have learned in these last 4 years, it is not to count anything out. The good possibilities and the bad ones. The very good and the very bad. I tried so hard to rest in the mystery, rest in the unknown, put it into God’s hands. I had prided myself in losing the need to ask “why” all the time for the challenges in our lives. I realized that no matter what I did, things were going to happen, good and bad, and I might never know the reason. It’s in God’s hands, I would tell myself.
For whatever reason, God’s hands decided to change our trajectory yet again. He decided to take a second child from us before we could even meet him or her. I am a Christian and darn it, this has tested my faith like nothing else.
I’m pissed. I’m frustrated. I’m devastated. This time around I most definitely am processing it. Whether I want to or not. As my friend Jamie said, “The universe is making sure you go through it.” She is so right. Beautiful, glowing pregnant women everywhere. Some are very treasured friends of mine who I am thrilled for. But that doesn’t make the loss of our baby any easier. Baby showers, pregnancy announcements, smiling babies at Target. National Siblings Day was celebrated all over Facebook the other day. Another reminder that we may not be able to provide a sibling for our son. Repeated blood work to make sure my pregnancy hormones are going down. Unsuccessful blood draws that have led to repeated visits to get MORE blood drawn. Weeks of cramping and bleeding after we lost him or her. I won’t even go into the actual physical process of losing a baby. It’s horrific. I am conflicted about it because I understand why people don’t talk about it, but at the same time, when you go through it you feel so alone. No matter how many people love and support you. You are on this island, wanting to grieve your baby and still physically carrying him. It’s simply awful.
It’s not fair. I want to kick rocks and scream ala Charlie Brown.
Actually, I want to stop kicking rocks and crying. I want to get over this, and move on. But I know that’s the whole point of crying and kicking rocks. In order to get through grief, you actually have to feel it. Well jeez. That just stinks. I like to keep moving. To keep busy and focus on the beauty that is around me, not the pain and crappy stuff. It’s not really part of my genetic make-up to focus on the negative. But it’s also part of my genetic make-up to take care of everyone around me and sort of forget myself.
So…..here I sit. and I walk with Sorrow. And I am sharing it with you because it is the only way I know how to be honest with myself. The days I sat at home waiting to pass the baby, I tried to find blogs about miscarriage that would help me feel less alone, but also give me some hope. This poem gave a little light to my walk:
I walked a mile with Pleasure;
She chatted all the way;
But left me none the wiser
For all she had to say.
I walked a mile with Sorrow,
And ne’er a word said she;
But, oh! The things I learned from her,
When sorrow walked with me.
-Robert Browning Hamilton
So today I walk with Sorrow. And as strange as it sounds, I feel less alone for it.
I loved Punky Brewster growing up.
Who wouldn’t want to be as cool as this chick?
So much so that I would wear a bandana tied around my knee and I wished my name was Soleil or Moon more than once. One particular episode remains emblazoned in my mind. The “Very Special Episode” surrounding the exclusive club, The Chiclets. Click HERE to see them in all their scrunch sock glory. You can watch the first minute or so to get the idea. The Chiclets were this “totally awesome” group of stylish sixth graders that Punky was dying to be a part of. Turns out that they are “like totally” into drugs. Specifically “grass, a few uppers, and some nose candy.” Pretty sure I had no clue what any of that was when I was eight years old. Of course, Punky decides that she does NOT need to be a Chiclet and that she is much better off following Nancy’s Reagan’s advice and creating a “Just Say No” club.
I may or may not have created a similar club with my best friend on the second grade playground that met over by the see saws.
(around 1986) I was probably wearing this awesome floral romper as well.
Clubs. Secret societies. Exclusive groups with super cool people in them.
We have all wanted to be a part of one at some point in our lives.
As an adult I have realized that I have been thrust into several of these clubs without my permission. Hoodwinked you might say.
The sudden loss of a parent club
The parent of a child with special needs club
The multiple miscarriages club
I don’t think a super cool gal like Emily with her charm necklace and pastel sweater came up to me when I turned 30 and said, “Hey, Erin, wouldn’t it be great if you joined our club? You know, the one where all the members have lost a parent before they could become a grandparent to your children? Do you want to join the club where all the members have suffered more than one miscarriage?”
I think I would have remembered that.
So here I am. A member of several clubs. Ones I would never have asked for membership.
But something crazy has happened. The messy, beautiful person I am today, would not be nearly as messy, and nearly as beautiful if not for being a member of these clubs. And not just because of the circumstances that led to my membership. Not because I lost my father without warning almost 4 years ago. Not because I have lost two babies before I could even meet them and hold them in my arms. Not because I am the proud mother of a little boy with Williams Syndrome
President of my club
Because of the INCREDIBLE club members I have been so privileged to meet. Because of the women who have become my friends. My sisters. My guides through this brutiful life. I would never have started blogging if it weren’t for my membership. I would never have met some of the most amazing women who I can reach out to any time of day or night and I know they will “get it.” I don’t have to explain what it feels like to wake up in a sweat because I dreamt about my father again. I don’t have to feel guilty when I message one of them to tell them I am feeling super overwhelmed by the prospect of Evan starting preschool with his school district peers.
I laugh with them. I cry with them. I spit nails of anger with them.
They somehow know me without needing to have been in my life for years and years. Some I have never even met in person. Some I did meet and it felt like they were a member of my Just Say No club on the playground in second grade.
I would never have met them if I had not gone through some of the most painful, difficult, and life changing events of my life.
Just this weekend I had the absolute privilege of attending a brunch for mothers of children with Williams Syndrome. It was like taking a deep breath of fresh air for 4 hours. I laughed, I cried, I listened and I shared. We have had Evan’s diagnosis for almost two years now, and there were some mothers with very newly diagnosed infants at home. I could see the fear, the pain, the hope in their eyes. And for once, I actually felt I could speak from experience and maybe even ease their worry a little.
Because of the pain, the struggle, the worry I have felt, I can support others who are going through similar experiences. One sweet mama told me that my blog actually helped her see a future for her daughter, helped her to see past the colicky, sleepless nights that are her everyday right now. Tears immediately came to my eyes.
There it was, the reason I started blogging. To help others who might need a voice, who might need to feel less alone. And to think that might actually be happening? Phew.
Thank goodness Emily in all her pastel scrunchy glory did not ask me to become a member of any of these clubs. Because I would have just said no.
(see what I did there?)
Sometimes we do not get asked. And we feel very angry about that.
Ahem….We meaning me of course……but maybe you are angry too? and that is more than okay, it is right and totally warranted. But I am just so glad that I can pull myself out of that murky angry place and realize that other women need to hear that it CAN be okay. You CAN lose a parent and wake up one day and realize it is not the first thing you think of. You CAN raise a child with special needs and see joy and beauty time and time again. Miscarriages do happen and they suck big time but you are NOT alone. There are so many women who have walked your path and would love to walk it with you. Or kick rocks. Or drink wine, whatever works.
I have plenty of women who did all of those things with me, and continue to.
I’m glad they are in my club. Maybe you are too?
This essay and I are part of the Messy, Beautiful Warrior Project — To learn more and join us, CLICK HERE! And to learn about the New York Times Bestselling Memoir Carry On Warrior: The Power of Embracing Your Messy, Beautiful Life, just released in paperback, CLICK HERE!
Colorado August 2010
I wish I could give you a big hug. Tell you that you are going to make it through the summer okay. The unbearably heavy sadness will begin to lift and change into a more permanent hole in your heart. It doesn’t sound great, but it is much better than the pain you are in now. 4 years later and I still think about him almost every day. But it is not the first thing I think of when I wake up in the morning anymore. When I dream about my dad now, I wake up happy that I had a chance to see him. It is not going to make any more sense than it does now. I wish it did. But you will find ways to remember him. Ways to honor him in your every day life. You don’t realize it, but next month you are going to discover you are pregnant. It will blow you away considering your pregnancy loss just two short months ago. You are going to get a chance to see glimpses of your father every day, through the eyes of your son, Evan.
Dear soon to be mama,
Tomorrow your life will change in ways I cannot make you understand right now. You will pace around the house tonight eating waffles and stopping every now and again to wince from what you “think” are the real deal contractions. Hold on sister, because they are just the previews. I want to tell you to breathe. Breathe in the peace, the silence, the feeling of being one with your son before he is born. Before he is out in the world and you have to care for him in such a different way. Know that things are going to change and they are going to be hard. Really hard. But I can tell you with certainty, it will not last forever. It is okay if you don’t make it without medication during the birth. It is okay if you struggle with nursing. As a good friend of ours says all the time, “no one gives out medals if you do those things.” GIVE YOURSELF GRACE.
One day old Evan in the NICU
Dear Mama of a newborn in the NICU,
It’s going to be okay. He is fine in there, he is cared for so well by those dedicated nurses. I know you want him back in your room with you so badly because he is your little guy, you can’t believe how quickly he was swept away. But in a few days you will be home with him and you will be wondering why you didn’t sleep a little more while he was in the NICU in such good hands. His levels will increase, and you will take him home. Breathe.
Evan- a few days old June 2011
Dear very new mama with newborn at home,
This is the hardest letter to write. I look at this picture and I know the turmoil you are feeling. I know the insanely strong love you are feeling for that little man but also the intense feelings of responsibility, fear, worry, and guilt that are swirling around in your very sleep deprived head. I know you feel like you are physically attached to your child, and it is hard to get a chance to shower, sleep, eat, without needing to nurse, pump, or prepare for the next nursing session. And oh the guilt…..oh the horrible, purposeless, painful guilt you feel every time you wish for a moment by yourself. And then by the grace of god, you get one of those moments and you lie there trying to nap but you can’t because you feel like you should be holding him. Everyone is telling you how awesome it is to have a newborn and you just want that to be true. Instead you are walking around like a zombie, and worrying that you are not fit to be Evan’s mother.
Okay, so that is where I step in. You are wrong. You are the best mommy that little guy has, and he needs you. He needs you to take care of yourself and GIVE YOURSELF GRACE. No one is going to judge you if you need a nap. No one is going to judge you when you need to stop nursing because it is too much. It is hard right now. Capital H. HARD. Not hours and hours of non stop joy. Hard. Your hormones are plummeting, your hair is falling out, and you are getting up 4-5 times a night to care for your son. It is okay for it to be hard. Let it be what it is and I can tell you…..he WILL sleep through the night. Not when he is three, like some very mean moms have told you……When is about 13 months he will start to consistently sleep through the night. And before then you will get blocks of 5 hours at a time which will feel like absolute heaven. And all those doubts, those fears, those ugly nasty statements of guilt and shame you keep rolling around your head? They will soon lift as well. You will realize, you are doing okay. He is in one piece. You can take showers and he will sit in the bouncy seat and be just fine. You can make breakfast while he plays on the carpet with his toys. The HARD will soon become your normal and you will not even realize when the change happens.
Evan a few weeks shy of one year old May 2012
Dear Mama of an almost one year old,
This month is going to end on a very tough note for you. You have no idea what the doctors are going to tell you about your beautiful baby boy who lights up your every day. You have been cleaning up after hours and hours of repeated vomiting. You flinch when he coughs or gags because you know what follows. You have been trying different foods and trying some of the same foods Evan used to eat and he won’t have any of it. You worry because his weight has plateaued and the doctors just can’t seem to figure it out. You are going to go through his birthday weekend telling yourself that he does not have any genetic condition. That he just has a gastrointestinal issue and medicine or surgery will fix it one day. Mama, I say this gently, but you are wrong, and as I have said before- it is all going to be okay. Evan’s diagnosis will not change one bit about your relationship with him. If anything, mama you are going to become one dedicated advocate for your son. And Evan is going to start Early Intervention services, which will be scary, strange, and hard for you at first, but soon it will become a welcome support that you look forward to each week. Evan is going to flourish with his therapists. He will be eating some solids by the end of the summer. You would never believe it, but today, at almost three years old, Evan ate chicken nuggets, fries, and apple sauce for dinner. Toddler gourmet for sure, but I know how impossible that seems to you now. But he will. Keep at it mama, he needs you to be strong for him. That doesn’t mean you can’t cry or mourn the loss of the child and future that you had all planned in your head. Tears do not negate strength. They are a sign that you are being honest with yourself. But please know, that as you learn more about Williams Syndrome , the easier it will all become. Evan is going to do some amazing things. Just wait until you hear him say “I love you,” for the first time, ride a horse, and walk across the playground. It’s all worth it. He’s even going to go to school in the next few years. I know, don’t throw up. You are going to survive it. It is going to be so wonderful for him. And for you and Todd.
This is going to happen a few years from now.
I’m telling you. It’s going to be okay. xoxoxo
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!
Where has the time gone??
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.
Buddies for life
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.
I remember this day very clearly. Evan wanted to drink the water the whole time. 🙂
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.