Archive of ‘development’ category

Oh…….wow.

This is the post that a friend told me I would write eventually.  The one about having a child with typical development following a child with special needs.  The one that has me simultaneously in awe, and slightly heartbroken.

In a nutshell, a hard post.

This kid.

This kid.

This morning I decided to organize Melody’s clothes. She has a few bins of hand-me-downs from friends that are willy nilly all over her room and it was high time that I went through them.  On the dresser was a Baby Einstein book with buttons on the outside. When pushed, they play short snippets of classical music.  Evan had a few of these books. I remember his adoration of them. I remember being in a store and giving him one of them and he would play with it for the entire store visit. This was Evan’s norm.  He could be given a toy- especially a musical or push button one that had some type of cause and effect mechanism and he was good to go. I could go to the basement to do laundry while he sat on the floor of his pack and play at 18 months playing with a musical box, pressing each side over and over, laughing, singing, etc.

So today, when I ripped off the plastic on this book for Melody, I thought, “Hmm, this will be perfect. I will give her this book, she will be so excited to play with this new electronic toy- that I will be able to organize and she will be happily occupied. (and without T.V! score for Mommy!)

I gave it to her, and she smiled through her pacifier stuffed mouth and tapped the book on the cover while looking at it quizzically.

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I turned to my pile of clothes and started sorting.  A few minutes later I noticed M walking around her crib.  Thought nothing of it.  Still sorting.  Then a few min after that she was in her closet trying to open boxes.  Few min after that, she was crawling in my lap, trying to get me to put a headband on her head through several gestures and vocalizations.

Oh…..wow…..

That musical book is not magical.

Melody is not caught in its spell like Evan was. (and might still be if given the opportunity. do NOT mention Fisher Price to that kid)

She is more interested in playing.

interacting. keeping joint attention.

throwing fits when she doesn’t get her way.

doing what 14 month olds do.

Not what my child with Williams Syndrome and autism did at that age.

I have these moments a few times a week.  Actually probably a few times a day but I don’t dwell on every one.  Melody is not a baby genius. She is not advanced. She is just developing at a typical rate.  What is true is that things come much easier to M than they did for Evan.

On one of our trips to see Dr. Mervis, I remember her saying that Evan really needed to practice dropping objects into containers. I think he was about 18 months at the time.  He would hold things over a box or a bucket but not let go.  This was HUGE in the eyes of the early intervention evaluators.  I had never thought about it before they pointed it out to me.  I can remember like it was yesterday, the night after we saw Dr. Mervis- Evan dropped his elephant toy into one of the hotel room drawers and we all celebrated. It was a massive milestone and we lamented that he waited until AFTER the research study to do it.

I can’t remember the first time Melody dropped an object into a container. It’s as though she has always done it.  I can even ask her to retrieve a toy and she will crawl behind furniture to get it and bring to me.

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Climbs. Every. Thing

This difference in development is both fascinating and tough.  I constantly am asking Todd, “Did you see her do____________??” Did you hear her say ___________? Did you see her point to her body parts?

That is the fun, exciting part. The hard part is the little tiny punch in the gut I get each time I realize what Evan wasn’t doing at Melody’s age. I feel a weird guilt that I didn’t know any better but also……………. relief that I didn’t know any better.

I have heard that the really hard part is when your younger child starts to move ahead of your older child developmentally.

Well, we’ll cross that bridge when we come to it. For now, we are just enjoying our kids and doing our best to celebrate all their achievements and not get caught up in every “Wow, I get it…..” moment that occurs.

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Hey Mom, you can be proud of both of us!

 

Children Will Listen…..

Careful the things you say
Children will listen….

So it’s no secret I am a huge Broadway musical fan.  Possibly more of a secret is my love of Josh Groban.  Recently I attended his concert and was in lala land for a few hours listening to his velvety voice and his witty repartee. What surprised me was how emotional I felt during a few of his songs.  One teary moment was due to a connection the song “Bring Him Home” from Les Miserables has with my late father. But the one that really got me was “Children Will Listen” from the Stephen Sondheim musical, “Into the Woods.”

Careful the things you do
Children will see…. and learn….

I have been really struggling lately with Evan’s delayed language development.  Don’t get me wrong. He has come LEAPS and bounds from a few years ago.  He is speaking in short phrases, and he has the capability to speak in longer sentences but it is hard for him to find the right grammatical combination. So he chooses shorter chunks because it is easier and more effective.  A few years ago I would never have thought he could ask me clearly for a certain food, or tell me that he needs to use the potty, or tell me that Melody is funny.

Alas….the perspective of looking back and realizing how far he has come does not come into play most days.  Most days are filled with moments where I feel my stomach twist because I hear a child ask his mom, “Does Evan talk mom? He barely says anything.”  Moments where I watch an adult struggle to connect with Evan because he keeps saying “Hi!” and repeating the same phrase over and over.

But something really struck me at that outdoor concert the other night.  I had a long conversation with my dear friend about Evan and his progress, challenges, strengths. And she said something to the effect of, just because his expressive language is delayed, he UNDERSTANDS. He is listening to everything.  She mentioned how she was trying to engage him in a conversation about his time at school that day, and he just kept repeating the same thing but she said his eyes said a different story.

Children may not obey, but children will listen
Children will look to you for which way to turn…

And she was so right.

He is always listening.

(Well, maybe not when he is on his Ipad and he doesn’t want to come to dinner.)

But children are always listening.

For better or worse.

Think back to your childhood. The memories you have of biting words a peer said to you on the playground.

A phrase your parent uttered in a moment of anger and frustration that you still hold on to 30 years later.

After a tussle with Mommy over leaving the speech therapist's office

After a tussle with Mommy over leaving the speech therapist’s office

Look at his eyes.

They speak volumes when the words couldn’t come.

We went to the zoo recently and I was not looking forward to it because in the past, it has been hard for Evan to connect with the animals because of the distance.  He just didn’t seem to be a “zoo kid.”

But then this happened:

Petting Zoo

Petting Zoo

And not the rough petting he does with Zoey, our very patient choc lab mix.  He was soft petting and smiling and quietly connecting with this goat.

Post petting

Post petting

Just taking it all in. He didn’t want to leave. The complete opposite from years past where he would just run from trash can to trash can to flip the lid or play with the water fountains.

We asked him the goat’s name and he said, “Goaty the Goat!”

HUGE, people.

MASSIVE.

I didn’t think the zoo would matter to him.

Adults need to listen too.

Children will see….
And learn….

Guide them, but step away

Children will glisten…..

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I’m going to try harder, buddy.

To speak more carefully.

To listen to what is not said.

To let you glisten.

To trust.

 

Look at me, Mama

Evan and our family has been a part of a research study out of the University of Louisville since he was 18 months old.  I’ve talked about it here, here, and here.

A part of that study is a monthly phone conversation that I had with Dr. Carolyn Mervis, the principal investigator in the study.  I had multiple forms to fill out monthly, to update Dr. Mervis on Evan’s speech and language process.  Some months I looked forward to the call, because I was excited to share the new words Evan was using.  Some months I waited until the very last minute to do the forms because I knew he hadn’t made much progress that month, or maybe our lives were crazy that month and I hadn’t noticed any big changes. (ie: Melody’s birth, one of my miscarriages, etc)

Some items would stay unmarked for months, sometimes years, “Does your child use his/her index finger to show INTEREST in something, not just to ask for something?”

Nope. Still doesn’t really do that.

But there was one item that puzzled me month after month.

The item said, ” When your child is playing with a toy, does he/she look at you and then back at the toy?”

Huh?

I remember admitting to Dr. Mervis one month, that I didn’t quite know what that looked like.  I’ll never forget what she said. “You’ll know it when you see it,”

Ok sure, I’ll just figure it out on my own.

Well, until a few months ago, I don’t think I really knew, but I do now.

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Look at me, Mama!

I know now because Melody does it, all day, every day.  She crawls around playing with toys, standing up, cruising, playing again, all the while, she looks to see if I am paying attention.

So that is what she meant.

Evan looks at me. We cuddle together, we sing, we play rough house games and we check in all during those times.  But “social referencing,” or checking in with your play partner, loved one, etc while interacting…it just doesn’t come as naturally to him.  He does it more now, especially when in a situation where he is not familiar. He might look to me, because he needs comfort or security.

Melody does it because she is a typically developing 9 month old who wants to make sure I am paying attention. Just because.

Sometimes this feels amazing, exhilarating almost.  To know that she is “on track,” that she wants to make sure I am there.  Something we still “work on” with Evan. We have to be intentional about encouraging referencing and the motivation behind it.  To know that it won’t be so hard with Melody. (not that she won’t have her own set of hard)

Sometimes I feel a pit in my stomach. I feel guilty that I am excited. I realize how incredibly hard Evan works for all his milestones.

Melody is standing on her own, and almost walking at nine months.

No hands!

No hands!

Evan walked at 25 months.  I can remember it like it was yesterday. It was so exciting.

I know….they are different people. And not just because of their chromosomal makeup.  They are different genders, different personality types, etc.  I shouldn’t compare.

But having a child with special needs born first, it is hard not to.

I remember being pregnant with Melody and talking with other friends who had their child with Williams Syndrome first, and than a second child without special needs.  They said it would be so different.  Not bad, not good, not better. Just different.

I couldn’t agree more.

But I will say this, having the two of them together, is way better.

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Bro and sis, checking out the geese

Sigh....My heart.

Sigh….My heart.

 

 

Though She Be But Little…….

I pray she will continue to be fierce.

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So far, our Melody has been sassy, strong, outspoken, happy, did I mention strong?

Two years ago today, I posted this.

My world was broken. My heart was sore.  My soul felt very depleted. I was sure that our chances of having a sibling for Evan were extremely slim if not gone.

Over time I came to accept that, and embrace the family of three that we had become.  But there was always a little voice inside that whispered, “a sibling would be so good. for everyone.”

Fast forward to the present. We have a thriving almost seven month old little lady.  She makes her presence known and her development is one of the most amazing things I have ever witnessed.  Because of how hard Evan had to fight for each milestone, it just blows me away how rapidly things are happening for Melody.  I am torn on a daily basis between shouting how excited I am from the rooftops, or feeling compelled to compare this experience with Evan’s first year with each new developmental leap she makes.  I am so glad we had our children in the order we did. Evan’s experience was completely his and his alone.  I had nothing to compare it to, so I didn’t feel the delays as heavily as I might have, if he had an older sibling.

I felt my eyes sting with tears the other night.  I was reflecting on how I prayed nightly while pregnant with Melody. I prayed that Evan’s sister would fiercely love and defend him.  That he would be her hero and they would be good for each other.

Even though she now takes things away from him and she loves to yank his hair, you can see adoration in her eyes.  I hold her up to look at his school picture before he gets home from school and she giggles and kicks her legs all around in excitement.

Melody has her whole life ahead to decide who she is, and who she wants to become . But for now, I will revel in their relationship.

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H is for Holidays. And Hard.

I love holidays.

As a child, I would have countdown calendars, I would beg my mom to put out the decorations weeks and weeks ahead.

I would be giddy with excitement and riddled with anticipation for the month prior.

Will the Easter Bunny come? How many eggs will I find?  What songs will we sing at church on Christmas Eve?  What time am I allowed to be up Christmas morning?

During pregnancy and in the early years with parenthood, I continued to be excited at the prospect of including our children in our traditions.  Our family meals, board games, gift opening, egg hunts, the list goes on.

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Unfortunately, I still have a fondness for holidays but I no longer am riddled with excitement for weeks prior.

Instead, I find myself dreading the family meals, worrying about gift time, anxious about family gatherings.

Holidays are a time where I find myself seeing the diagnosis instead of seeing my son.

A time where he is surrounded by cousins, children who are the same age or younger, and they are doing and saying things far beyond his development.  It used to upset me more because it would be hard for ME to handle but I always thought Evan was doing fine with it.  He would play with the electronic toys, happily flitting from one to the next, not worrying about his family members, happy to play and do his own thing.

But that has changed.

It seems now Evan is more aware of his environment. More aware of his “sticking out.”

Not in the same way that I might feel like I don’t fit into a group.  More that he does not understand why everyone is running around playing pretend games. He doesn’t understand why we seem so adamant that he do an egg hunt. I can just see in his eyes the thought, “Why are mommy and daddy so upset that I don’t want to do this? What is the big deal? I just want to play with the toys that are easy and fun for me. They make me happy. Let me be happy.”

Damn it. That is HARD.

Choosing when to include your child because you think it is important for him, or is it because it is important for YOU?

Because of Evan’s delayed speech development, we don’t always know what he is thinking or feeling.  He didn’t say he didn’t want to do the egg hunt. He just kept making a bee line for the door and requesting to go back in the house.  But later on at the party, I knew exactly what he was thinking and feeling. I caught his gaze from across the room.  He was playing with some electronic toy and staring off into space and I could see it written all over his face. He was exhausted and tired from the noise, the rapid movements, the conversations all around him that he didn’t feel he could or should be a part of.  I went over to him, sat down next to him and he crawled into my lap, “Cuddle you, mommy.”

My heart sank but I also felt this strange relief.

Relief because he told me what he needed. He needed comfort, closeness, a sense of familiarity in a dynamic environment that overwhelmed him.  12186378_10208003238498964_5136476171225720603_o

Once again, through a difficult situation, a little light shines.

“There’s a crack in everything, that’s how the light gets in.” -Leonard Cohen

Holidays will continue to be tough sometimes.

Holidays will continue to have joy sometimes.

Thank goodness for cracks.

Thank goodness for cuddles.

 

 

 

Slow My Roll

I think if I was a little more tech savvy, I could search my past blog posts and find the ones where I have quoted one of my closest friends, Talia, when she says, “You need to slow your roll!” I can remember her using that phrase back when we started teaching together 10+ years ago.

She is very right.

I do need to slow my roll.

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This face.

This guy deserves that.  He deserves much more of course but at the very least he deserves a mama who can practice what she preaches.  I often use the phrase, “Presume Competence.” and I relate it to Evan and his ability to rise to the occasion when you give him the chance.

So why is it so hard for me to remember that myself?

In the past few months, he has started drinking out of an open cup.

He has moved into his big boy room.

Evan bouncing on his bed with his Uncle Joe

Evan bouncing on his bed with his Uncle Joe

And he is potty trained.

Yes, I sure did say that.

Potty trained. (and I’m choosing not put underwear pictures, because I already take a huge risk putting his pictures out there, but I don’t want to go that far…)

My proud big boy

My proud big boy

Ok…so he is not fully potty trained. We are not night training right now and probably won’t for a little while. But he is WAY further along in the process than I ever would have imagined. We implemented the popular three day potty training method (a loose version) a little over a week ago. It was hard. HARD. Three of the hardest days I have had in a long time.  But…..fast forward a week. He has had only a handful of accidents. None at school, and he has gone several days in a row without any.  After being in diapers only for for four years. The biggest accomplishment was staying dry through a very stressful CHOP (Children’s Hospital of PA) visit this past week.  I totally planned to put a pull-up on him before he went through some testing and a very nerve wracking doctor’s visit, but he initiated potty trips while we were there, so I decided to PRESUME COMPETENCE gosh darn it and let him wear his big boy underwear and surprise me.

And of course he did.

This time last week I was sitting at home writing an email to Evan’s ESY teachers preparing them for the possibility of accidents, and letting them know how the weekend had went. I sent in multiple pairs of underwear, extra clothes, the works.  Fully expecting that he would come home in a different outfit. I was a little bit of a nervous wreck all Monday morning. Messaging my WS mama friends asking them if it was too much to expect. Could he make it through a few hours at school without an accident? and maybe I was expecting too much too fast…

Fast forward to Thursday, after four days of school. Every day his very kind and accommodating teacher (who knows I am a mama that needs reassurance) would email me a little update saying, “Yay! No accidents, and a bm on the potty!!!”

That is basically Evan’s way of saying, “Mom, seriously….slow  your roll.  I’m not perfect, as we have already discussed, but I am trying my hardest. Let me try.”

Deep breath….I will buddy, I promise. I owe you that. xoxo

Knock knock.

Knock knock.

 

We’re Not Perfect

Phew.  Our kids really teach us some tough lessons right when we need them to, don’t they?  In an effort to blog and share a little more often before Baby Sister comes, I thought I’d share this quick story.  Lately I have been struggling with patience, especially with our dog and our son.  This is not a new struggle for a parent, I know this.  Especially with a four year old. Especially with pregnancy hormones. Especially with a four year old who does not really realize/understand/care that I am supposed to have some authority over his life. Sigh…

Especially because I am hot, uncomfortable and not at my best. (I’d insert a picture here, but who wants to see that?)

We have been trying to find strategies, techniques, direction, anything to help us with teaching Evan right from wrong, especially when it comes to our dog.  He has been overly aggressive with her and for some reason even though I know in my heart that she is not really hurt, and Evan does not really understand what he is doing- it GETS TO ME very badly.  Like nails on the chalkboard badly. Like lemon in a paper cut badly.

I guess everyone has their things that get to them. Traffic, dirty floors, lateness….

Evan smacking the dog. This is mine. For this week.

So the other day there was a swirl of rough things that occurred in a short amount of time.  We were probably late for something (not new), the dog was anxious because she could sense that we were preparing to leave the house. Evan has decided it is super fun to not want to wash his hands, get dressed, come to the car, you name it, he decides on a daily basis what he is not going to do that day.   At that moment he was avoiding one or more of those things. The dog started barking at something outside, Evan smacked her and I lost it. I yelled and I think I scared all three of us.  I am not really a yeller by nature and lately it has come to my attention that maybe I could become one if I am not careful.

After all three of us cried, well at least two of us. (not Zoey) Evan started marching around the room.

He bounces back rather quickly.

This is what he sang.

“We’re not perfect….no we’re not. We’re not perfect. But we’ve got what we’ve got. We do our very best, we do our very best, we do our very best each day. Cause we’re not perfect……but you know that I love you that way.”

Yup. a beloved Laurie Berkner song that we have been singing a lot lately. (he really over articulates the t’s.)

And he sang it right when we all needed to hear it.

Nope, Evan, we’re not. And I’m going to keep working hard to be patient and you are going to keep working hard to be the best Evan you can be.  And Zoey, well she will benefit from both of us doing that.

We’re not perfect, but we do our very best each day. (at least we try.)

This face helps me to keep trying...

This face helps me to keep trying…

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.

 

 

Time keeps on ticking

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September 2013, 26 months

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Walking in like a boss

A year ago, we took those pictures. Wearing a plaid button down onesie and walking with a super wide gait and arms up like a T Rex, our son plowed his way into school. I wasn’t sure if it was the right time for me to go back to work. The right time for Evan to be in school. It ended up being the PERFECT time for him to be in school. He flourished and was loved. Boy was he loved. Man, I could go on about that school for hours….

Anyway.

Fast forward a year.

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September 2014, 3 years old

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P.S. that is only half of his supplies…..

Evan started official big boy school yesterday. At a school with children in grades Preschool-6th grade. If you know me at all, you know I was a teeny bit of a wreck yesterday.

Yes. You are correct. He did just fine. I thought he would be so tired tonight after school for 4 hours and then going to hippotherapy and riding Vixie. Nope. He was energetic and ready to go until about 8:45 pm. Teacher reported he sang, met new friends, and followed all directions today.

Sigh…..worry really does get you nowhere doesn’t it?

Trust me Mama.

I got this.

I know buddy……….

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

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