Archive of ‘fear’ category

We’re Engaged!

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?

Sigh….

But I know you understand.  This working mom thing, is no joke. As I have mentioned before..here and here.

Too busy doing things like this.

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.

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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.

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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.

These eyes.

These eyes.

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.

Engagement.

Connection.

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.

Full. To the brim.

 

 

Darlin’ Do Not Fear

I was getting ready in the bathroom the other day and I felt like I needed some music to move me along. One of my favorite albums is the Parenthood TV soundtrack. I am one of those. Those who LOVE soundtracks. My dad and I would croon along to the Cocktail soundtrack on roadtrips. And don’t forget the infamous cassette tape of us singing “I’ve Had the Time of my Life,” from Dirty Dancing. (recorded in an amusement park “recording studio” nonetheless) It’s kind of amazing, and kind of scary.
Anyway, I heard these lyrics, loud and clear:
If you have a broken heart or a battered soul
Find something to hold on to or to let go
To help you through the hard nights like a flask filled with hope
Darlin’ do not fear what you don’t really know

“Cause it won’t last – your worries will pass
All your troubles they don’t stand a chance
And it always hurts the worst when it’s the ones we love the most
Darlin’ do not fear what you don’t really know

Do not fear what you don’t really know.
How simple is that? Do not fear the unknown. If you cannot control it, and it is in the future, however distant- don’t fear it. Clearly this is much easier to read and talk about, than it is to put it into practice.
But I thought I would try.
Should I focus/worry about the things I do not know for 100%, like will Evan develop heart issues? Will I get pregnant again? Will we have another baby with special needs? How will Evan be accepted in school?

Darlin’ do not fear…..focus on the things you DO know.
This I can do.
I know that we participated in a fundraising walk for Williams Syndrome this past weekend and we were surrounded by people who love us.
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I know that Evan is finally starting to use the pronoun “I” when talking to us.
I know that Todd gave me a mother’s day card yesterday and in it, he listed all the things I do for Evan and it made me melt.
I know that Evan played with his new teddy bear and practice pretend skills without any prompting.
I know that I work with some of the most supportive individuals.
I know that all I need to do is make Evan giggle (not a hard feat) and my mood will lighten.
I know that the beach is a happy place for me, and I was able to go there a few weekends ago (BY MYSELF) because of the kindness of a friend, and the support of a loving husband.
I know that it brings me a type of peace and pride to share about Williams Syndrome to anyone who will listen.

For now, I can heed Brett Dennen‘s advice.
And it’s all about that, right, the moment to moment observations?
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Take a chapter out of Evan’s book.

Dear Mama

Colorado August 2010

Colorado August 2010

Dear Erin,

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.

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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

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

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.

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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.

March 2014

March 2014

I’m telling you. It’s going to be okay.  xoxoxo

Walk the Line

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I feel physical pain when I look at this picture.

This is hard to write about.

Tonight I walk the line.

Tomorrow I probably will too.  I might stay on one side, linger for a little while, and then I will go back to the line. Teetering ever so slightly, trying to keep my balance.

I walk the line between complete acceptance of Evan’s Williams Syndrome, almost to the point of celebration- and complete worry, disappointment, and concern for his differences and how they will affect him throughout his life.

When Evan giggles and jumps in his car seat peering out the window, simply thrilled to be waiting for me to bring in groceries and to see me peek out of the door to see him- I celebrate his WS. I celebrate that he is filled with joy, simple, unadulterated joy about 80% of the time.  When he whispers “I la you” before I leave his room at night- three words we have worked on for over a year, I celebrate.  When the director of his preschool writes me a note, thanking ME for allowing them to be Evan’s teachers because of the light he brings to their lives- I celebrate. (I also blubber like a weepy fool- but that is another story)

When I watch video of adults with WS lamenting how difficult their high school experiences were due to bullying, I am concerned.  When I hear an adult with WS say to a newly diagnosed child’s father, “I am so sorry to hear she has WS, it can be really hard,” I hurt.  When Evan greets someone with a happy “Hi!” and then repeats it over and over and over no matter how many times the person responds, I feel a little weird inside.  I feel guilt because of course I know he means well, he just wants the positive interaction- but I also know the recipient is wondering how to respond. And then I start thinking about what will happen when he is in middle school and he greets others with no abandon.  When I listen to other children Evan’s age and I realize how far behind he is with speech and language, I can feel disappointed.  I live in a little bubble sometimes, where Evan’s progress is only compared to Evan’s progress.  Until, it’s not anymore.

When I hear E singing on the monitor, singing, “The Water is Wide,” and then humming the parts where I hum because I do not know the lyrics, I feel joy.  Pride that my son has Williams Syndrome. That he has an emotional connection to music that even I cannot comprehend. When I talk to others and educate them about WS, I enjoy talking about it, I feel pride in every detail that I share.

But then I can be quick to say, “But don’t forget, Evan is not defined by his diagnosis. He is Evan first, and he just happens to be missing a 25 or so genes out of over 20K that we each have. It is just a small part of what makes him Evan. ”

I just keep walking that line.

The line between celebration and worry.  The line between pride and guilt.

I can say that I am on the side of celebration far more than I am on the other side. I feel very blessed for that to be true.  But the other side exists. And it can be an ugly, dark spot to step into.

That is why I walk the line.

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Striving for Celebration

 

 

How Great Evan Art

So I sit here in quiet. Beautiful, thought-provoking quiet.  I used to lament the fact that I never had time in our house by myself anymore. Todd and I have always been good about letting each other have our “me” time, whether that means going to an exercise class, going camping, blogging, out with friends, etc. But just by the way of scheduling and being a mommy- I never got the house to myself. Well wouldn’t you know it, going back to work actually provided me with not one, but two days where that happened. Even if just for a short while. It’s weird, I keep thinking I hear Evan on the monitor that isn’t even turned on.  Since I am a teacher in N.J, we still get off for the annual NJEA convention in Atlantic City.  This year since there was an election for governor, we also got off on election day. I decided Evan could still go to school, since he loves it so much, and this way I would get more done.
So I decided to spend election day working on insurance phone calls and paperwork that had started to pile up. In my crazy little head (actually the Gaynor cranium is not a small one), I had thought it would be a great day. A day that would clear my mind, and get all that insurance stuff off of my shoulders and some more money in our pockets from reimbursements to come.  Oh Erin, silly, silly Erin. How quickly you forgot how incredibly frustrating it is to go through menu after menu of automated voices. How infuriating it is to speak to four different people at the same insurance company but only one of them seem to have an idea of what is what. How emotionally exhausting it is to realize how many therapies your child receives and how much it all really adds up to financially.  And honestly, we do not have it that bad. I know our situation could be much much worse. But Tuesday afternoon, after about five hours of sitting at a laptop with two different phones and bills strewn around me, I felt myself start to crumble a bit. I popped on the beautiful piano music of Alec Sweazy.

Can’t you see Evan in his kind eyes and smile?

I felt myself relax and the tears flowed a bit. Not in frustration though. In appreciation of Alec’s talent and hope for Evan’s future.  Alec also has WS and he is handsome, talented, and honest. On his website he mentions the meaning behind some of his compositions. He says this about one song:

I’m Still Standing —As a student in elementary school… being treated like a scab… other students picking on me and beating me up.  It hurt a lot.  I tried to let people know of the threats, calling me names, pushing me down stairs.  It was like having monsters with laser beams for eyes coming after me, destroying me from the inside out.
Of course this tears me up from the inside out too. Some of my worst fears are of Evan being teased and bullied.
But then he also writes this about another song:
Long Time Coming — “This project.  To have goals for yourself in life… and the CD is probably the biggest thing I’ve done in my whole life.  I’m pretty sure I haven’t done anything that takes so much patience, doing things over and over again.  To keep it moving takes many steps.  Many people are needed to get a big project like this off the ground.  Who would have thought, after the variety shows in junior high school, that this is where I would be now?”    
Thank you Alec. Thank you for sharing your talent and your honest feelings.  It scares me, but I know not to be driven by fear. It will get me nowhere.
Here is a little glimpse into how Evan reminds me not to fear. (There is no video, just audio)

He “gets it.”
at two and a half years old.
So lucky to be his mom.
So gosh darn lucky.

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Inspiration

I have a lot I want to blog about but it has been craziness central here in our household with illnesses and an artistic endeavor that I was involved with this weekend that was SO good for my soul. More on that later.
This week on the WS Support page there was a video shared about Amy Koch, a woman with WS who was on a television clip about women and girls being leaders.  I was mesmerized by this woman, her confidence, her incredible grasp of the English language , and just her beautiful spirit.  Please watch it if you have time:
Watch here: Amy Koch video
Bathtime is his favorite time
For some reason I focused only on all the positive things she said, sort of glossing over the parts where she mentions being called names and being ridiculed in the work environment before she found the wonderful place she is now.  A few of my friends on the WS Support board mentioned that they were also touched by the video but that they just can’t get a handle on how it will be when their child will start to be looked at as “different,” and could possibly face ridicule as well.  That started to affect me a bit. THEN a mom posted that her five year old son went to a party with her younger son, age 2 with WS, and a playmate at the party said that he was “weird because his face looks funny.” 
Wow. Age 2. 
That stung me deep in my chest.  I feel so guilty because when Evan was first diagnosed I often would find myself thinking that it is all good and fine now because Evan is so cute and little and everyone loves him but what is going to happen as he ages and his looks change and his disability is not so invisible? That is so hard for me to admit. Why should it matter to a mother, how her child looks? But I was just so scared of how his appearance would affect how he is treated by others. But……. as has happened with most other worries and fears I had those first few months, my point of view has since changed and I KNOW that no matter how Evan might look, or sound, or act, he is will still be the same incredible human being that he is today and was on the day he was born. In fact, with each day, he becomes more awesome in my eyes. Isn’t that was being a parent is all about? Being in love with your child no matter what? But of course, that is not the issue- the issue is how others perceive your child and how they may treat him or her. 
I stumbled upon another amazing blog written by an incredible woman who has two children, one of which who has special needs. She and her husband have faced many adversities, some of which are painful to read about as a parent. But she is honest, and her writing is inspiring. She personally responded to an email I wrote her, which really spoke a lot of her character. 
This entry is a great one, where she writes about “Stargazers,” the people who stare at her son, and how we all “stargaze” sometimes. Click here to read it.
The entry that really touched my heart is this one.  Please read it if you have time. 

After church and brunch and some cracker consumption

Five Minute Friday- "Afraid"

So I was going to do a funny, simple blog today but I will save that for another day. Today I am going to take part in Five Minute Friday, which is inspired by a blog I read very often, Tales from a Gypsy Mama. Every Friday she writes for 5 minutes without editing or rereading her work, on a prompt. She also encourages others to do the same and link back to her blog. I have never participated, but thought today I would try it out. So I am setting an online timer so I don’t cheat and go over. Ready?

Afraid.

GO:

I have entirely too many fears. I wish they were “normal” fears, like spiders, or heights, or snakes. Well, I’m not thrilled about all three of those either, but they do not paralyze me.  I know deep down I am afraid of the biggies. Illness and death.  And you know the funny thing? I very rarely worry about them for myself. In fact, I found myself the other day watching the t.v. show Parenthood, which you should watch right now or at least sometime within the next 24 hours if you haven’t already, because it is the most phenomenal show on TV. (no paid advertisement, I swear.)
Anyway I was watching, and they had an episode focusing on the character who has breast cancer. They did a knock out job of showing the ugly, scary, heart wrenching parts of fighting cancer, along with keeping humor spattered in throughout. My mind drifted a bit and I found myself thinking, I’m sure I will probably be diagnosed with cancer one day. And I will fight it. And if I lose, that’s okay….And then I focused back on the show…..

Mumming

What?
Yup. I didn’t feel scared, or paralyzed or even the least bit anxious about it. I have had a few health scares over the years, but I was never really overwhelmed by them.
What overwhelms me
is losing my loved ones.
I honestly cannot imagine losing another person.
I am so blessed to have so many of my loved ones still in my life, but losing my dad ripped me in two.

STOP

My Heart Hurts

Yesterday, on December 14, 2012, a horrific mass shooting occurred in a small, unassuming town in Newtown, Connecticut. This unthinkable event has America collectively weeping, shaking their fists, and screaming at the injustice. It only takes a few minutes of reading through the News Feed on Facebook or reading any comments on articles on news sites to see how this has rocked our nation. I know my blog was not created for social commentary but I cannot move past this day without marking it down and making sure that I remember it, and how it made me feel.
I tend to be a person who walks out into the world without thinking of the evil that can lurk behind each corner. I drive my car blindly, trusting that the person in the lane next to me will stay in her lane. I walk into banks late at night to do my ATM transactions, thinking for a moment that it probably is not the best time to do so, but the odds of something bad happening are so small, why worry over it? I have used Patco with my child, using the Camden station, with only a small amount of healthy caution that I would use at any public transit stop. Even though I have met stares of disbelief when I mention I have taken Evan on the train, and by myself???!! Typically I chuckle to myself internally and think, ‘Ah, how it must be tough to live in that type of fear.’ So glad I do not.
Unfortunately events like today pierce that bubble of security within me in an instant. I feel like a fool for feeling safe when it is possible for an individual to take the lives of 20 children in minutes without anyone being able to save them.  My husband could tell I was taking this very hard today, and my mind was elsewhere while we were driving. He kept trying to make commentary on the scenery, to lighten my mood. I could tell he was trying very hard, and I apologized for being lost in thought and explained why. He told me to try not to focus on it too much, that it is a horrible, horrible event, but that we cannot control others.
I know he is right. That is my typical response when tragedy strikes at the hand of another human being. There is Evil in this world, but we cannot be consumed with that fact or we will not be able to live our daily lives.
But for today, for this morning at 2:51 am when I sit in a Kentucky hotel lobby, frantically searching for some sense of peace to hold onto, I am focusing on it. I feel I must. I must be reminded of not only the evil that does lurk within this world, but more importantly, the fragility of life. I feel thankful that I know life does not end on this Earth. That the beautiful, innocent children and the adults who took care of them who lost their lives are living their second chances in Heaven. That belief, and my faith, however challenged it truly is right now- are keeping me afloat in a sea of confusion and doubt.

Driving home from the second exhausting day of Dr. Mervis’ research study, we drove past many gorgeous old homes in Louisville, KY that were ready to be lit with twinkling white lights and had wreaths on each and every window. My heart sparkled for a moment, remembering how exciting the Christmas season is. I still get that rush of joy and pure happiness that I did as a child during this month of celebrations, surprises, and family. It is not as pure anymore, tainted by life experiences, knowing the materialism that comes with the holiday, etc. But I feel so incredibly blessed to have had the holidays I did as a child, and I realized with a jolt that those children had that opportunity stripped from them. Hopefully at their age they had a few years of memories, but now their families are left with gaping holes and searing pain and sorrow.
 I thought immediately of my son, Evan, asleep in our backseat. I thought of his future, of his potential to see no race, to lack the social cues and understanding to know why he should not love everyone he meets. My eyes burned with unshed tears, and I fought back the impulse to lose it all together. I felt guilt at how I had been feeling just a few minutes earlier in the exit interview with Dr. Mervis. The words “typically developing children” were used over and over to show comparison with Evan. I have typed those words so many times in IEPs and I just felt so frustrated and pained that now my son will be the subject of that comparison and I will be reading those words and they will not refer to him. They will refer to my friends’ children, to his classmates, but not to him.
And I felt horrible guilt that I was bothered by that when 20 families were receiving word that they will not be able to take home their child that afternoon.
I picked up my sleeping son from his car seat, and sat with him in a dark hotel room, while he clung to me, asleep and exhausted from the assessments that day, and a lack of nap. I thought of his incredible smile, how it immediately captures your heart, no matter who you are. I couldn’t help but let myself imagine what it would be like to learn I had lost him. And it felt like a knife was turning over and over again in my chest.
My internal fists started to shake at the universe. Who cares if he is not “typically developing?” I know it is human to have those moments and I will not beat myself up over it (well at least not for much longer). But to waste time over words, when I have this living, breathing, example of pure love sleeping in his ‘pack and play’ right now, just seems disrespectful to the families who have lost their loved ones. If they had one more night with their child, with their mom, their dad- they would not waste it worrying about words on a paper or words being spoken in a research lab.
And I realize that is all I can do right now. Appreciate what I have and keep trusting. Keep using Patco from Ferry Ave with my healthy sense of caution. Keep driving down the highway trusting that the cars around me will follow traffic law. What can my worry or fear do for me? Nothing that is helpful or honoring to those who are no longer with us and their families who grieve. I will continue to love, continue to trust, continue to believe. It is the risk I must take as Evan’s mother.
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I will sum up our trip and the helpful information we received from Dr. Mervis and her team- probably sometime next week. Please know that my issues with the terminology being used to describe Evan’s progress are my own personal hang ups from being a special education teacher for over ten years. We had a really wonderful experience down here and I think Evan’s progress will be enriched by the information we gathered. I just wanted to include my thoughts from today because I feel it is important for me to remember this, and have it to reflect on in the future.

I don’t like growing up.

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Sometimes I wish I could be Peter Pan, flying off to Neverland…
Typically I try to keep this blog upbeat, and definitely more on the positive tip.  Basically because I truly believe what you put out there is what you receive. I see no point in complaining about things I have no control over. Welllllll….today is a little bit of an exception.
 I am not happy this afternoon. I am frustrated over what it means to be an adult, and the tough stuff that entails.  I just updated the “About Me” section on here (finally) and I mentioned that I do not mind my age or birthdays, in fact I welcome them. And that is still true. 
But.
I don’t like what happens to the people around me as a result of getting older. I can take the wrinkles, the sagging skin, the getting loopy after two drinks, the funny looks I get from twenty somethings when I bring up a pop culture reference from my childhood. What I am struggling with, is the biggies-people divorcing, people getting sick, and of course, the worst one, people passing away.
 I know these things all occur all the time, not just because I am older. But clearly there is some correlation with my age, because it is happening a darn awful lot lately. 
Just last night I learned of the sudden passing of a soccer coach I had as a child. He coached alongside my father. Two of his three daughters all played soccer with me. I am not in touch with the family now, but I have vivid memories of team parties at their house and how proud he always was of his girls.  I know it was not expected because I follow the blog of one of the daughters- .http://www.jennifromtheblog.com, and I have since she started years ago. She posted two days ago just talking about her kids, going back to work after a maternity leave, etc. No mention of her father being ill. When I found out about her dad, I immediately turned to my phone. Without a second thought I was going to call my dad and tell him, “Oh my goodness Dad, did you hear the awful news, Mr. Dadura died.” 
And then it hit me. 
Like it does a few times a month when i forget I cannot call my dad anymore. Darn it. In that moment I felt more upset with myself than I was with the fact that he had passed. I felt embarrassed, silly, that I “forgot” for the moment. Then my heart just felt consumed with hurt for the Dadura family. I know that pain all too well.  
Then I get on Facebook, (which I know is not helpful), to get my mind off of it. I read a status update from a mother who I follow on FB and also on her website, Petite Peanut Boutique. She has a son with Williams Syndrome who was very ill back in June. That is when I discovered her and began following her son Clayton’s journey. Her post said: 
“I wanted to ask a special favor for all that follow my little Superhero Clayton.
Clayton is not doing well today, and really struggling to breathe– comparable to his breathing when we almost lost him in June. If you could please say a prayer for his comfort, peace, and strength I would greatly appreciate it. I know that my Heavenly Father hears and answers them.”
I read the words, “almost lost him” and felt a cold breeze across my whole body. It just hit me so hard. The reminder of life being so incredibly precious. That there are no guarantees. I prayed for Clayton and I sat in silence thinking of my blessings and how lucky we truly are that Evan does not have any major health issues that we know of right now.  
And if you know me, even just a little- I really really strive to not focus on the tough stuff, because I have come to find that we should not waste this precious time worrying about what we cannot control. But that is easier said than done sometimes. In the silence after Evan finally fell asleep today I just felt like I should write about it. 
My very good friend from work also shared with me that after having her son go through a grueling 3 day EEG at CHOP, his seizures have not improved even with a strict diet that has taken so much work and effort on her part.  Her son has come so far, beaten a lot of odds, and proven a lot of people wrong.  But still, I had to validate what she said, and it really stinks. It’s just not fair sometimes what we are faced with, and to question why is fruitless.  

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Now don’t go worrying that I am going to go curl up in a ball. I most certainly am not. I just felt the impact of aging today, and felt it was blog-worthy.   In my case, getting older also brought my marriage and beautiful little boy, so I do realize it has benefits as well. I was not ready for those things ten years ago. (even though I might have said I was) 
I do love the parentheses along with the ellipses……….
My thoughts are with my friends and loved ones tonight- I just pray that we all can pause time for a minute and look at what we have around us. Remember how incredible it all is since not one of us knows how long we all have together.  

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