Tag Archives: Parenting

Self Care

Posted on by

Self Care

I think most moms look at the words “self care” and cringe.

“I’m sorry–what? Care for myself? I don’t have time for that.”

We went to the beach on Saturday, and I put sunscreen on the kids at least 3 times each. I’m so worried about their precious, toddler skin burning. If they get even the slightest bit red, I’m right behind them–slathering on more white goo. I don’t want them to feel the hurt of a burn or, worse, be susceptible to skin cancer.

I was so exhausted from putting on their sunscreen, not just on Saturday but from the Sunscreen Dance that we do every morning of the week, that I skipped putting it on myself.

My skin? Not important. Their skin? SUPER IMPORTANT!

If I get a little burn, I’ll just use some aloe or something…

Well, I look like a lobster. Worse, I feel like a lobster in a pot. My body has been on fire since Saturday. It’s painful for me to carry a purse on my shoulder. Yesterday, Emmy gently brushed up against my back with a pretzel, and I thought I was going to lose my mind from the pain.

Really? Is this the lesson that will finally encourage me to jump on the self care bandwagon? I hope so because, right now, the feeling of my shirt resting against my shoulder is enough to make me scream.

I think of self care as being selfish. How can I possibly worry about myself when I’ve got kids to care for? How can I close the door to take a quiet bath when they might need me at any second? How can I curl up on the couch to read my book when I should be sitting on the floor playing with them instead?

Two things:

1. If I show my kids that I value myself then they, too, will value themselves.

2. If I take some time to address my needs, I am a much calmer, happier, and more relaxed parent.

Charlotte kept looking at my awful burn and saying, “Mom, you really need to use sunscreen next time.” By turning into a lobster, I showed her how little I care about my own needs. It’s actually embarrassing…to show my 4 year old how little I value myself. That needs to change if I want her to value herself. The apple doesn’t fall far from the tree, right?

Ok so, I finally took a step in the right direction. I put on my headphones and went for a walk. But not just any boring old walk! I played music that I can’t play when the kids are around. Charlotte has a great memory and repeats everything, so there are some songs that I don’t play because I don’t want to answer any questions about the lyrics.

Realization: It’s amazing what listening to my own music for 20 minutes does to my psyche. I felt myself instantly unwind. Self care isn’t as hard as I make it out to be! And it only took 20 minutes. Next time, I’ll try 30…

Thank you for the birthday wishes for Emmy! She had such a good time and blew out her number 2 candle beautifully–with a tiny bit of help from mom.

As Long As It’s Healthy

Posted on by

AsLongAsItsHealthy

I was at the salon the other day, making casual conversation with the hair stylist. She was asking how many kids I have and if I want another. I don’t normally venture into the Emmy story unless I know someone pretty well so I said, in a general way, “I have two kids, and I’d love to have another.”

She responded, “Do you want a boy or a girl? Though, I guess it doesn’t matter, right? As long as it’s healthy.”

That phrase stopped me in my tracks. She kept asking more questions, but I was still on the “as long as it’s healthy” statement, turning it over and over in my mind.

I used to think the same thing. When I was pregnant with both of my girls, I prayed every single night for a healthy baby. That was, in fact, my only wish. I was terrified of having a baby that wasn’t healthy.

And then, five weeks after giving birth to Emmy, we found out that she has Williams syndrome. (They don’t test for Williams syndrome during general pregnancy screenings because it is so rare.) In my mind, my worst nightmare had come true. I wondered what I had done in life to deserve such a thing. I had been a good person, right? It felt like a punishment. I racked my brain trying to figure out what I had done in my past to bring this diagnosis upon my entire family.

Those feelings were so real back then–so painful. And today, I can’t even put myself into that same mindset if I tried. I love this kid so much, and she has brought such incredible joy to my life. The way she crinkles her nose, and gulps down her milk (“glug glug glug”), and reaches for her favorite book, and gets her red shoes when she wants to go outside, and drops her toys into an empty bathtub for us to find later, and giddily throws balls to our dog, and says “Charlotte.” Even though I didn’t realize it at the time, this was the baby that I prayed for.

Really, I can’t imagine that any pregnant woman wishes for an unhealthy baby. So it seems like a natural prayer. Who wouldn’t want a healthy baby?

But let’s look at the other side of that coin. What happens if the baby is unhealthy? Then what? Do we send it back? Do we ask for another? The “as long as it’s healthy” statement doesn’t allow for the other side of that coin.

Because what if it isn’t healthy?

Perhaps, instead of praying for a healthy baby, I should’ve asked “Please give me an open heart to love my child fully, no matter who he/she is” or “Please give me the ability to see how my child fits in perfectly with our family.”

Yes, I’d like to have another baby. At this point, I’m actually much more worried about carrying the baby than I am about who the baby will be.

I, too, was born with a birth defect but, surprisingly, I didn’t find out until I was thirty years old and pregnant for the first time. An ultrasound revealed that I have a bicornuate uterus, which means it’s heart shaped. It sounds lovely, but it can be very problematic. I also have a secondary issue with my uterus which resulted from my first c-section.

So my mind hasn’t even gone down the “I hope it’s healthy” road yet. I’m still wondering if my own body will be able to hold strong.

But if I were to get pregnant again, I hope I won’t obsess about the health of my baby for nine months, as I’ve done twice before.

I’ve learned that health isn’t everything. It’s the whole picture that matters more.

Our Emmy turns two years old tomorrow! I can’t wait to see her opening the mountain of Elmo presents.

I spoiled her this year. She deserves it.

Being Present During The Bedtime Routine

Posted on by

Beingpresent

Things with Emmy have calmed down a bit. She’s feeling much better, though she can turn SUPER cranky on a dime. I’m a worrier by nature, so I’m constantly checking her incision (It’s quite a sight. Eek!) and watching her closely on the monitor during naptime. Because she’s doing so well and is generally happy, it feels as if the past month were a dream.

I can’t believe that happened… Did I watch a movie, or was it real? I’ll think about snippets of scenes from Emmy’s time in the hospital and it’s as if I’m struggling to remember something that happened 10 years ago. I think my lack of memory is my body’s way of protecting myself from going back there. At some point, I want to write it all down. I just can’t do it yet.

One ongoing lesson that really hit home during that insane experience is that I need to be present with my kids. I’ve known this for a while now, but it’s difficult for me to put into practice. I’m a multi-tasker. I want to do, do, do. It’s hard for me to sit and just be.

But time with my kids is so precious. Sometimes I have to just be and not think about my never-ending to-do list.

I read a quote recently that stuck with me. I wish I could remember the author because I want to give him/her credit. But my brain is fried…

Here’s my paraphrase of that lovely quote: When you’re spending time with your kids, don’t rush through it to get to the thing you have to do. Your kids are the thing.

That quote speaks to me at bedtime. We have a routine, and the routine has gotten very long and multi-layered. Emmy is easy to put to bed. She drinks her milk, says “night night,” gets 2 books and a song, and falls right to sleep. Charlotte, on the other hand, likes to stretch out the bedtime routine. It has gotten longer and longer and longer…

First it was a bath, book, and bed.

Then it was a bath, 2 books, and bed.

Then it was a bath, 2 books, think-about-a-story-in-your-head, song, water, two clips in hair, and bed.

Now it is a bath, 2 books, think-about-a-story-in-your-head, song, water, two clips in hair, hug from me to you, turn off and on the light to test darkness levels, turn off and on the colors of the ladybug night light to find the perfect color, and bed.

Once we manage to say “Night night” and close the door, Charlotte still cries 3-4 times for us. We have to go back in there and often replay parts of the routine (maybe an extra hairclip or a different color on the ladybug).

The problem is that, during all of this, I am thinking of the things I have to do! And there are many of them! After we put the kids to bed, Dan and I spend at least 2 hours getting chores done and cleaning up.

So, while I would like Charlotte to be the thing that I am focused on, while I would like to just be and enjoy this time together, I can get increasingly frustrated at the long list of add-ons to the routine.

I know she does it on purpose. Of course she doesn’t want to go to bed! I’m a night owl myself, so I can’t blame her. But it’s hard for me to cut the routine short because I am so very conscious of the fact that, when she’s a teenager, she’ll probably be stomping around the house in all black and ignoring us.

I know I will eventually long for this endless nighttime routine. I just know it!

I’ll catch a glimpse of my future self asking, “Hey, honey, would you like me to think of a story in my head?”

And I’ll see teenage Charlotte roll her eyes and say, “Get a life, mom. No one has time for that.”

It’s true. One day, she won’t have time for me. So I’m conscious of the fact that I have to treasure this time with her instead of getting to that next thing. (Though I maintain the the bedtime routine has gotten a little out there. She’s a smart girl, and I’m a sucker for “Just one more hug from me to you!”)

In Love

Posted on by

Love

I learned something really incredible over the past three weeks. I am so in love with this kid.

I used to think it was weird when people said they were in love with their kids. It seemed like a strange turn of phrase. I used to think that we are in love with our spouses or partners — but we love our kids.

I found out what it meant to be in love with my oldest child when Charlotte turned 1 year old. That’s when I felt it for the first time. She turned from a little baby into my little buddy. She was fun to interact with, and I saw her personality start to emerge. I remember taking pictures of her eating blueberries outside on the grass. She put a play phone up to her ear — upside down. And, as I snapped away, I thought, “Wow, this is it. I am in love.” I finally understood what that phrase meant.

With Emmy, the road has been different. I was overwhelmed with a lot of information early on that scared me. She was only 5 weeks old when I found out that she has Williams syndrome, and I was really intimidated by what that meant for her future and ours. And then there was a lot of work to do. We had to arrange doctors and call physical therapists and organize medical bills. There was a lot of stuff getting in the way of my connection with my daughter.

These past three weeks have changed everything. When her heart stopped beating and the doctors were trying to save her, all of the other stuff disappeared. I was so purely connected to my daughter, and I wasn’t even in the same room as her. I couldn’t even see her. The doctors and nurses were inside her room, trying to save her life. And I was in the hallway, kneeling on the floor and sobbing.

But the other thing I was doing was talking to her. I named all of her favorite toys and activities. I named family members. I named friends. I begged, “Come back. Come back to me.” There must’ve been twenty people between us and around us, but I felt as though it were only the two of us. That connection, that bond, was so strong and so pure.

As special needs parents, and parents in general, we have many hurdles to overcome and struggles to deal with. Over the past two years, I felt that stuff getting in the way of a pure connection to my child. It felt like baggage, and it was heavy.

Being in this position with Emmy made me realize that I need to focus on keeping a pure connection to her. Yes, she has special needs. And it is important for me to help nurture those needs. I actually love that she has Williams syndrome. The diagnosis has brought many, many wonderful qualities with it. And I love so many of the people I’ve met that Emmy has brought into my life — caring doctors, incredible nurses, excellent therapists, sweet teachers; supportive friends. I would never have met them otherwise.

But, at the end of the day, when I tuck her in at night, the only thing that matters is that Emmy is my daughter and I’m her mom. And that connection is so very strong and pure.

I am absolutely, head-over-heels in love with her.

This Part is Hard

Posted on by

image

Compared to where we were last week, Emmy is in much better shape. She is making slow but steady progress, and every little win brings us one step closer to holding her.

She was on a paralytic, which didn’t allow her to move, since May 16. It pained me to see her on the paralytic because it seemed unnatural for a toddler to be still. I wanted her to MOVE. I kept asking, “When are they going to take it off??”

Well, they just took her off the paralytic, and she’s moving. It’s a good sign. She’s closer to coming home. But, wow, this part is hard. She has tubes down her throat and up her nose so, when she tries to make a sound, nothing comes out. She is sedated with morphine, but she still reacts to noise and touch. She has her eyes closed, and she opens her little mouth. Her forehead strains. She looks upset and, perhaps, in pain. The nurses have to suction old blood out of her lungs. And when they suction, Emmy looks so incredibly uncomfortable. She squirms away from the suction and seems to be saying “No no no,” but there is no sound. This is hard.

The nurses are excellent, and I know they’re treating her with such care. They give her baths in bed and even put little clips in her hair, which make me smile. So I know they’re gentle and wonderful with her. But I also know that when I see my kids suffer in any way, I suffer. I can’t even watch when they suction her. I have to put my head down.

There is a woman down the hall who has been living here with her daughter for 6 months. I have friends who have lived here for 1, 2, and 3 months. I’m in awe of the strong people who live and have lived on this floor.

This energy here is mixed. In one room, people are celebrating. In another, they are crying. Ten days ago, I was the mom kneeling on the floor outside her daughter’s room weeping and pleading and praying. Today I’m the nervous mom who doesn’t like to see a suction. You swing back and forth. One day you’re depressed and the next you’re panicking and the next you’re feeling positive.

At this point, I see the door. I want out. I am desperate for us to be able to lift the sedation, take out the tubes, and interact with Emmy. I want to see if she remembers me. I think she does because when she hears my voice, she starts moving. Her forehead strains. And I can almost hear her say, “Save me, mom. This hurts. Come save me.”

I’m trying, sweetie. I’m trying.

Pre-Op

Posted on by

PreOp3

This is a picture of Emmy at the hospital after 5 solid hours of pre-op. This picture was taken after a 1.5 hour echocardiogram, an EKG, a urine test, blood work, an X-ray, and a few consultations with various doctors.

If it were me, I would’ve been curled up in a ball whimpering and pleading to go home. Emmy, on the other hand, decided to run around the lobby for 25 minutes. As I ran after her, exhausted, I thought, “Kids are tough!”

When we drove to the hospital early this morning, I thought about the last time I was preparing for surgery. Back then, it was a c-section, and I couldn’t wait to meet my daughter. I was beyond giddy. Going to the hospital to have a baby is such a thrilling time. You don’t know who is inside of that belly, and you just can’t wait to see his or her little face.

Driving to the hospital for that same baby’s pre-op for heart surgery is a different feeling altogether. The excitement has vanished. In its place, are hearty doses of fear and anxiety.

“How did I get here?” I kept thinking.

It was a long, nerve-wracking day. I kept my eye on the clock, wanting to rush through it all.

And then I look back at that picture of Emmy who, after hours of testing, was dashing around the lobby. She was waving her hands over her head, saying “Hiiiiii” to anyone who looked her way.

And then I think back to our weekend when we watched this little girl, my oldest, run around happily. She knows that her sister has a “boo boo on her heart” and enthusiastically proclaimed that she would miss her when she goes to the hospital but would see her soon.

PreOp2

As much as I want to fast forward to the future, I am acutely aware of these fleeting moments in time.

I keep thinking, “I want this to be over.  I want this to be over.”

But if I keep rushing through the days leading up to surgery, I’m missing what’s right in front of me. There’s a sense of happiness and positivity radiating off my children, which I’d like to bottle and hold close to my heart.

A Master of Should

Posted on by

AMasterofShould

I am a master at using the word “should.” Here’s what I thought when I went back and looked at this Daddy/daughters picture:

  • It should be in focus.
  • Everyone should be sitting next to each other with gloriously happy smiles.
  • I should be able to see the girls’ matching shirts which say “Daddy’s little sweetie.”
  • I should be able to see more of Dan’s face than just 1.5 eyes.
  • Emmy should not be crying.

In other words, this picture is a failure, right?

On the contrary. I think it’s one of my favorites.

When I look closer, I see the following:

  • Charlotte’s personality is perfectly captured (easy-going nature, eagerness to please, her headband which is always askew because she likes it that way).
  • Emmy’s personality is perfectly captured (generally happy but can be very quick to get upset, especially when pulled away from Mommy).
  • Dan’s personality is perfectly captured (smiling eyes, comfortable being surrounded by his girls). I looked closer and noticed his wedding band peeking out behind his oldest daughter. His original wedding band was lost to the ocean on our honeymoon. This one was much cheaper but still holds the same value, in my eyes.

Maybe when things are not as they “should” be, that means they are just right.

We took Emmy to the doctor today. It’s the same hospital where I gave birth to Emmy and, every time I go back there, I’m flooded with the emotions of that time. We didn’t know Emmy had Williams syndrome, but she was in the NICU for 8 days, and the entire experience was emotionally painful. The hospital staff was wonderful and they did their best to console me, but it was very sad to be separated from Emmy right at birth and then not be able to take her home for an entire week.

I found myself thinking: “It should have been different. Emmy should not have been blue when she was born. Emmy should not have had heart problems. I should have had the happy hospital stay that most new moms have…” The laundry list of shoulds continued.

Then I stopped myself. What can defeat a case of the shoulds? Acceptance.

I accept that I had an emotionally rough stay in the hospital. I accept that Emmy was in the NICU. I accept that she was not 100% healthy. I accept that things did not turn out exactly as I expected.

I accept it, and I am grateful for all that I have.

Going to the Chapel

Posted on by

Goingtothechapel

I’ve been thinking about Emmy getting married. Yes, I realize she’s only 1.5 years old. Hear me out.

When Emmy was born, I thought that her life was full of limitless possibilities. The world was her oyster. She could be President. She could be an astronaut. She could be a lawyer or a doctor or a professor. Anything at all. There is joyful freedom that comes with telling a child, “You can be anything you want.”

Five weeks after Emmy was born, I found out she had Williams syndrome and looked online to find out more details about her condition. Within seconds, I was distraught to see all the things that she might never do: drive a car, live on her own, pursue a career, get married, have children…

There is nothing quite like sitting on the couch with a beautiful newborn baby in your arms and staring at a long list of things that she may never do. My limitless world of possibilities vanished, and I found myself hoping that she would be able to just cross the street or tie her shoelaces.

Early on, the topics of marriage and children were constantly on my mind. If my children don’t want to get married or have kids of their own, that is totally fine with me. But I always imaged that they would at least have the choice to do either of those things. I couldn’t get over the idea of Emmy’s choices being taken away right from birth.

Williams syndrome was not in either of our families before we had Emmy. It was a totally random (1 in 10,000) occurrence. However, if Emmy has children, she has a 50% chance of passing it along.

I struggled with the marriage and children questions for a while and then finally managed to file them away into “things to worry about waaaaay down the road.”

Well, last night the questions popped back up again. We rented a lovely documentary called Monica and David about two people with Down syndrome who got married. JUST BEAUTIFUL. I highly recommend renting it on Netflix. It illustrated so clearly how people with special needs want the same things as everyone else. Above all, they want to feel love and connection. That is really the basis of all human life. And when Monica and David expressed their wish to have a child, to the dismay of their family members, it was because they had so much love to give.

There is an image that keeps scrolling through in my mind. The image is of Emmy playing with a baby doll and saying, “I am the mommy, and this is my baby,” as Charlotte has done countless times before. It’s the image of Emmy saying, “When will I be a mommy?” as Charlotte has asked countless times before. It’s the image of Emmy saying, “When I have a baby, you will be the grandma, right?” as Charlotte has reasoned before.

And then there’s the question that I’m left with every time this image passes through my mind: What do I say when this image becomes a reality?

I don’t know the answer yet, but I know that I want Emmy to have all the limitless possibilities that I originally envisioned for her–before I knew about Williams syndrome. I want her to have choices, and I’m trying to figure out how to make that happen.

Feeling the Fear

Posted on by

Feelingthefear

I am living in a place of fear right now. I have a friend whose child is in the hospital recovering from heart surgery. My own child is scheduled for heart surgery in a month. My friend, Erin, posted the most heart-wrenching story on her blog, which has just rocked me to my core: http://edivaput.blogspot.com/2013/04/when-it-just-isnt-fair.html

And then of course there is the horrific event coming out of Boston and that sweet boy’s picture on Facebook holding up a “Peace” poster.

I am living in the middle of fear. I must admit that a large part of me feels comfortable in a place of fear. My first reaction to any uncertain circumstance is usually fear, so this emotion feels spot on.

But I am very much aware of the anxiety in my chest, the constant nerves; the guzzling of caffeine which only makes it worse. Recently, I’ve found a new way to address fear which is to eat. I take those Lindor truffles that are only 73 calories each…and I have 10…in an hour. I fantasize about the rosemary fries at Smashburger. I eat slice after slice after slice of cheddar cheese.

Finally, I confided in a wise friend who replied that I was feeding the fear to make it go away.

I hadn’t even realized it. Instead of feeling the fear, I was feeding the fear.

The problem with that (besides the tight pants) is that even though I’m stuffing, I’m still feeling everything under the surface. The emotions are still there, bubbling up. They haven’t gone away.

Now that I realize what I’m doing, I can look at myself objectively.

“Self, why are you doing that?” I ask.

“Self, you know exactly why you’re doing that,” I answer. “You don’t want to feel.”

But, self, it’s natural to feel. It’s completely human to feel afraid and sad and upset and angry. And then it’s beautifully human to feel support and connection and love and generosity. And then it’s entirely human to feel hope and bliss and joy. It’s normal to feel all of it.

I don’t think that living in a place of fear is a good place for me. But I recognize it and look at it objectively and reach out to others and hope that there will be great joy on the other side.

Attached

Posted on by

Attached

Here’s an easy way to find me…

Look for a cute toddler with a bright smile. Now look to see who she’s attached to.

Why, hello there!

Emmy sticks to me like glue, which is interesting because Charlotte is the opposite. Charlotte has been fiercely independent from Day 1. She has no problem walking into a room full of new people and simply throwing a casual glance back to mom and dad.

Emmy, on the other hand, is either in my arms or clutching onto my leg. If I dare put her down, she turns red in the face and screams at the top of her lungs. She holds her arms in the air, desperately pleading with me to pick her back up.

We were in a restaurant the other night, and I got up to take Charlotte to the restroom. When we were halfway to the back of the restaurant, I heard a piercing scream from the front. “WAHHHHH!”

Emmy didn’t appreciate my disappearance one bit.

Yes, it would be lovely to use the restroom without hearing heart-wrenching screams on the other side of the door. And it’s exhausting to hold twenty pounds of toddler all the time. But I suspect that when she’s a teenager, I’m going to long for these days.

I have a feeling that I’ll miss those little toes following me everywhere.