Late to the (Hunger) Games

This post contains spoilers for the books in The Hunger Games series. Read at your own risk!

When I was in high school, I was a big fan of utopia/dystopian novels. I think I am one of the few people who liked reading 1984, Animal Farm and Brave New World. I still love them, but, as a mom with kids, I have become super sensitive to violence anywhere- movies, books and real life. The idea of children hurting children, people dying would and could set me on edge for days. Thankfully, I know my limits and stick to things like Percy Jackson (if someone dies, it's a Greek monster and not real anyway), Harry Potter, Dan Brown books (I love all the twists and history and art references) and history. Oh, and fluff. Lots not forget the fluff.

I knew I would like The Hunger Games novels- dystopia at its finest! However, the whole premise of the books is children being forced to kill each other in sadistic games and... no. Just no. I've had enough of sick and dying children thankyouverymuch.

But when the movie came on Netflix for free, I hemmed and hawed about watching it. We don't really rent movies and I wouldn't buy it without seeing it first. Finally, I realized that if it got to be too much, I could stop the movie and not deal with it anymore. I fired it up on my laptop, put on the closed captioning so the children could hear it and . . . got sucked in.

I told myself I wasn't going to read the books but Cole had a sleepless night and I'm a fast reader. I finished all three in a weekend. Since then, I've read them two or three times each and the literary part of my brain, the part that gets put on hold because I need to be thinking of making dinner, the next IEP meeting, getting homework done... that part of my brain began to awaken. It began to- dare I say it?- catch fire.

I went back and re-read the parts where Katniss talks to President Snow. I muse why she killed Coin, the president of the rebels. I sent Gale through the literary wringer and decided that he's kinda a jerk. I wanted to shake Katniss and tell her that she loved Peeta from the Victory Tour in Catching Fire. And I really, really wanted to get the poor kid some PTSD help.

I googled to see what people thought of the ending of Mockingjay. I was surprised- but not- to see that people thought it was unrealistic.They thought that she didn't want children and that she and Peeta should not have brought them into the world. Many people thought she should just "Get over it."

But you know what? I got her. I got her actions in the last book. She's young, 17 or 18 or so, and had never felt safe. All her actions from the time her father died were about survival. Find the next meal, keep Prim alive, keep her mother sane, survive the Games, keep everyone alive, keep herself alive. When the war is over and she's home, who can blame her for not feeling safe? She has every right not to trust anyone and not want to bring children into her world. It doesn't mean she doesn't love them or want them- it means she knows that no one can promise her that her children, who she knows she will love, won't be taken from her.

In my world, everything goes back to the NICU. After you've had a preemie, no one can promise you that your next baby will be term and healthy. You know you will do everything in your power to keep your baby safe, but the worst has happened to you. You are not immune- and if it has happened once, it can happen again. Yes, yes just like Katniss in the Hunger Games.

As a teen, I think I would have understood the ending in some abstract way. Now, as a mother and an adult, I understand in a deeper way. I haven't seen nearly the horrors that she has but I completely understand her feelings of terror. I know the flashbacks. I know the dreams. I know the feeling of wandering aimlessly, finding places to hide, wanting to sleep and not dream.

The craziest thing about these books, though, is that they have made me happy. While the content is certainly depressing, the books are a love story- the love Katniss has for her family, the love Peeta has for her, the love Gale has for rebellion and making the world a better place in his own insane way. It reminds me of the love I have for these kinds of novels, the part of me that loves pulling apart books and discdisecting characters. It's something I can discuss with very few people and do very rarely. Reading those books reminded me of the hunger I have for literature.

What will I do with this hunger? No clue. I likely won't go back to school and I don't know if I want to return to full time teaching. But this is something I need to keep doing for myself, my quirky little self who can pick apart characters and themes and ideas.

It's something I hunger for, really.

I don't get it anymore

Maybe it's envy, a sin our priest cautioned against in his homily during Mass on Sunday.

Heck, whatever, I know it's envy.

And anger.

And confusion.

At this stage in my life, the "friend's having babies" thing is starting to wind down. Sure, being Catholic, I still know people having babies but most of my super close friends are "open but not hopin'." Even if they desire more, we're at the point in our life where we have the baby thing down. Breast or bottle feeding debates aren't on our radar; we've made our "baby choices," we know how to parent that stage. We're more worried about the tween years.

Yet, still, I have friends whose feeds are full of ultrasounds and car seats and newborn clothes. The other day, I saw pictures of the car seat some friends will use, God willing, when they bring their son home from the hospital.

The kicker? She's 22 weeks pregnant.

Twenty-two.

At one time, I suppose as a first time mother, I would have made that choice. I would be looking at car seats and wanting one rightnow because OMGosh I only have nine months to get ready for this baby and nine months isn't very long and what if I made the wrong choice and will they have the color I want and what if my baby has to come home in a car seat that is the wrong color? But this isn't their first baby or even their second. I find it. . .  odd. Because if I were to be 22 weeks pregnant right now, I wouldn't have an infant car seat in the house. I wouldn't even be looking for one. I'd be praying, praying, praying for many more months of pregnancy.

I'm too wary now.

At one time, maybe I could do it. At one time, maybe I could have my child's car seat purchased and waiting before I hit viability. At one time, maybe I could. By Cole's pregnancy, I couldn't.

In some ways, I didn't have to purchase anything. 16 months between births gave me a good "out." We had a perfectly good, non-expired car seat waiting in the basement. We had a bouncey and a Bumbo. The baby toys were still in use and the newborn diapers hadn't been packed far away.

Yet, I couldn't. I couldn't have too much laying around the house, staring at me, mocking me for daring to hope. It was such a delicate balance. How much did I need to get ready? How much did I want to do? And how much could I stand to look at if (Please, God, no) my child was born early?

Prematurity was a very real possibility. Thanks to George (and I mean that in the best way, not the most sarcastic), I had friends with extremely pre-term infants. Infant loss wasn't something that happened to random strangers, it happened to people I loved. I'd seen codes and tears and too much sorrow (and yet, so much joy) to get ready too soon.

Instead, I did everything in stages. I washed tiny preemie clothes, knowing that, well, at this stage, he would need clothes even though he would be in the hospital. I rearranged the boys room early- but not too early. I wanted George to get used to the new room before the baby came but not so early that I would burst into hysterical tears every time I walked into it. I installed the car seat 37 weeks. Everything was a balance, the balance of a mother who knew- and was terrified- of the other side.

Although Cole was healthy and term, if I had a fifth, I couldn't do it. I couldn't buy a car seat at 22 weeks. I might buy a blanket in case of an emergency baptism, just so there would be something white to put over the baby. I know I would have Holy Water on hand. I know we would have a name. Everything else could wait.

Do I envy those parents who, even on their second, third or twelfth child, can buy a car seat at 22 weeks? Yes. I don't envy them for their child or their life. I envy their innocence and wish I could go back to a time when fear (what if... what if... what if...) and anxiety didn't surround a pregnancy.

I wish I could go back to a time when there was only joy.

Flashback: PSTD, the NICU and Control

If  you've read this blog for more than two seconds, you know that I suffer from PTSD related to my son's early birth and NICU stay. While his stay was shorter than some, and he is healthy overall, the birth and aftermath left me emotionally scarred for a very long time. The link below links to an old blog post from June of 2010. George was 19 months old, Cole was two months and I was still having dreams.

The good news? I am so much better than I was. SO MUCH. When my niece was born in April, I was able to walk into her room.  All I saw was a lovely little lady, my sweet Miss Who and all the things that made her Miss Who. Clinically, you can go on-line and read about what a micro-preemie looks like. I didn't see that. I saw her big hands and feet, her tiny cow lick and how she loved to hold her mama's hand. There were no overwhelming memories. No dreams. No huge, sobbing tears. The PTSD beast did not rear its head.

Unless you have been there, you have no idea how huge this is for me. Huge. And throughout the entire NICU journey my sister went on, I didn't have one knee-buckling flashback. Not one and I spent enough time in her room that I should have. I should have been on my knees, sobbing at the memories and I didn't.

Will this happen for everyone? I don't know. I can't promise that. It was a long slogging road and I won't consider myself healed. I do consider myself better, stronger and healing.

I can't promise that anyone will be able to walk back into a NICU room after having their own NICU baby. I can't promise you will be able to do what I did. But I can promise that, with the proper help and time, it will get a bit better. Easier. Healing.

Flashback: Trigger Control

Questions without answers

There are questions children ask that need answers but have none.

Why I born early?

Babies float in a big swimming pool of water. Your swimming pool broke and the doctors took you out because they were afraid you would get sick inside of Mommy.

I sick?

No, you weren’t sick. We were afraid you would get sick.

I had owe in my nose.

Yes,  you had a tube in your nose to feed you and a tube in your mouth to breathe.

Like Baby Who.

Yes, like your cousin.

George’s birth story is important because it is his story, the way he entered this world. It’s important to know not only because of this, but because his start in life is part of his health history. For years, people will ask me if there were complications with his birth and pregnancy and he will have heard the same answers over and over again: PPROM, RDS, the vent, the oral issues. One day, he will have to take charge of his own health and he will have to answer these questions for himself.

I rejoice that my son has his own voice and is able to ask these questions on his own. He has the questions and I should have the answers.

I don't, though.

I can tell him scientifically, why. I can tell him what the doctors told me. I can tell him about the wonderful people we have met, the gifts we have been given, the joy that has come with his journey.

But I don't know why.

I don't know why him.

I don't know why us.

Most of the time, I trust. Most of the time . . . I wish I knew why.

For the Glory

A few weeks ago I met up with a long time friend for coffee. We chatted about children and somehow got on the "six degrees of separation" about people we knew. A relative of hers is a special education and she said she often prayed to God for a special needs child because she knows how to be an advocate for children, isn't afraid to make waves and has lots of connections in the special needs community.

I nodded and sipped my coffee. I said nothing. Inside, I was thinking, "Are you frikkin nuts?"

(Now.  Let's digress here. You're going to read this and may think, "Laura is telling me to abort my unborn child because he or she has been given an diagnosis and will have a life with disability! The baby will suffer and I will suffer and it isn't worth it!" Let's clarify: HELL NO I AM NOT SAYING THAT.)

This friend- and she is a friend- is a devote Catholic. No matter what a doctor told her about her potential unborn kid, she would chose life. I completely agree with her. Life is always worth living, no matter the suffering (perceived or real), no matter the struggle,  no matter the long term out come. As a mother of a special needs child, I will say it loudly HIS LIFE IS WORTH IT.

But. It is not EASY.

My friend has what I mourned Monday- blissfully normal kids. They are polite, well mannered and well behaved. They make excellent grades and are good at sports and music. Do I believe for one minute her life is picture perfect? No. But she has many things I cannot brag about because they do not exist in my life.

And I think, "What mother wants to see her child struggle?" I ache when I see my son struggle to enjoy something kids his age love, like loud music, dancing, a play area, certain foods. (What four year old does not eat pizza? MINE.) Think about it- even the Blessed Virgin wished she could help Her Son as He struggled with the cross.

But.

The Blessed Virgin knew what Jesus was going through was for the good of all humanity. She ached with the real and intense ache of a mother seeing her child suffer and die. No more, no less, as that is the most intense ache a  mother can know. Yet . . . she knew. She trusted. As much as it hurt her to see Jesus suffer and die, she knew it was for the glory of God.

If I could take this from my son, would I? Yes. I offered. I prayed. I screamed, "GIVE IT ME, MAKE ME SUFFER, NOT HIM!" Believe me, I prayed that I would be left with the lasting scars of his early birth, not him. I am a mother and my basic, most burning desire, is to "make it better." That's why I cannot fathom wishing a child of mine would have a special need. Would I love my children no matter their abilities or needs? I do! Would I wish it on them? No. Because no mother WISHES to see her child suffer, to struggle, to overcome.

Yet like the Blessed Virgin (and let's be clear I am SO FAR from the BVM it's not even funny but we are both mother's and, in that,we get each other) I love my child. Deeply. I also love Him enough to trust that all the challenges my child faces are for His Glory. I don't think all this is due to random chance. I think there is a reason behind it all, reason why it is him, a reason why it is our family. Do I pretend to know why? Nope. I just have to trust, to accept, to be the best mother I can be. I have to walk with him on his path and give him the tools to be the most wonderful person he can be and let him know (as I must all my children) that their weaknesses will show God's greatest glory.

(post inspired by these verses:  The Gospel according to JOHN 9 As he walked along, he saw a man blind from birth. 2 His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” 3 Jesus answered, “Neither this man nor his parents sinned; he was born blind so that God’s works might be revealed in him.")

Apraxia Awareness Day

According to the website apraxia-kids.org, today is the first Apraxia Awareness Day.

Although I tend to write more about prematurity than CAS, Childhood Apraxia of Speech affects every single aspect of our family. It's why George started preschool last year rather than this year. It's why we've welcomed speech therapists into our home at least once a week, every week, for three years. It's why he won't eat unfamiliar foods or at unfamiliar restaurants. It's why he screamed at me every morning for six months straight.

But . . .

He has apraxia. Apraxia does not have him.

George is happy. Yes, happy! He loves cows, Chik-Fil-A and trains. He loves his Grandpa and his Nono. He likes pancakes and pasta. He is strong willed, stubborn, and loving. He's a typical little brother and a great big brother! He's a NICU graduate who kicked prematurity and took names. He's the reason we host a NICU Thanksgiving every year. He's loving, caring, kind and compassionate. Now that he is finding his voice, he says the most hysterical things! Yes, yes, he has apraxia. It is a part of him but it doesn't define him.

He's the reason I will never take my voice for granted. He's the reason I was given the gift of speech and writing. He's thrust us into the world of special needs and made us all more comfortable around those with different abilities. He's the reason for many tears and so much more JOY. He's the reason the sentence "car get ow" is the best darn sentence I have ever heard.

Yes, Apraxia is his dragon and he must slay it. But amidst that spinney, scaly, snarling dragon is a precious flower, blooming against all odds.

Some of my favorite posts about Apaxia:
(Please note that these posts were written at various times in our journey. What they say may or may not reflect how we currently feel.)

A Voice for My Child: Orginally written for this blog, it was reposted on the Natural Parents Network last March. In it, I reflect on how my greatest strength is my son's greatest weakness.

She Kept Mocking the Way He was Speaking: My oldest son does not have Apraxia but that doesn't mean he is affected by it. At recess, one of his classmates was mocking George, something that upset my oldest.

Heal My Son: Sometimes I still get angry that my son, my baby, struggles so much with something that should come easily to him. I wish he was healed and perhaps healing is taking place through the hands of his therapists.

His Voice: The best first sentence in the world! Written for the Carnival of Natural Parenting.

I Knew it was Coming: The first time a child asked, "Why can't he talk?"

Apraxia Therapy: Different therapies we have used to help our son.

Fine: Related to prematurity but also about apraxia. How I feel when people say, "But he's fine, right?"

Cup

We all have a Cup.

Placed in front of us, we've all stared down this Cup, thinking, looking calculating. We've looked up and said politely, "No thanks. I don't want it. I pass."

The Cup is pushed forward.

Again, perhaps a little firmer, "No. I don't want it. Take it from me."

The Cup is placed in our hands and we resist the urge to throw it against the wall. "No! Oh, HE LL NO. I don't want it! I am NOT going to drink from it and YOU CAN'T MAKE ME!"

We think we have a choice: take this Cup or not. The truth is, we really don't have a choice. We want the choice,we wish we had a choice but there really isn't a choice. It's there, it's ours and we have to have it.

"Take this Cup. Pleasepleaseplease take this Cup. I don't want it, I can't drink from it. It's too much."

We sob and cry and wail against the Cup. We pound our hands, pitching a fit like a two year old, wailing about how unfair it is to receive the Cup.

After a bit we calm down and sniffle, looking at it. We know we have no choice. It's there, it's ours. Not drinking from it really isn't an alternative because not accepting it would lead to disaster. No, allowing the Cup to pass would mean a horrible alternative, one far worse than drinking from it.

Sniffling, we take a tentative sip and then down the contents in one fell swoop.

In agony, the Cup becomes a Cross. In the dark recesses of our mind, we are bitter that we drank from the Cup- although we know there was no real alternative. We heave our Cross on our shoulders, dragging it forward, stumbling forward into the abyss.

Then . . . light. We look up, squinting into the light in the darkness. It's dim at first, then brighter. We step forward slowly.

Brighter.

A lightness. Tentatively, we look back. There is someone there (Someone?) holding the end, carrying our Cross with us. He smiles. We smile back slowly.

We raged against the Cup, struggled with the Cross but there is always someone there to carry you through it...

to step together to the light.

"But it could be worse!"

If there's one phrase I hate more than "at this point in time..." it is "But it could be worse!"

"Your baby was bon at xyz weeks? Mine was born SO MUCH EARLIER! Be grateful because it could be worse!"

"Your child can't talk? Ha! It could be worse! Mine can't walk!"

"Your kid has cancer? But it's treatable? Well, it could be worse; it could be the kind that would KILL her!"

"Your kid has a fatal birth defect? Whatever. At least you don't have to watch him suffer and die!"

Yes, all of these things have been said to me and to people I know. I know what you are thinking: the statements are mocking and hurtful. All cancer is bad, whether it is the "easy" treatable kind or the rare kind. Loosing a child is hard, whether it is shortly after birth or after a long illness. The people who are saying "it could be worse" are really saying, "Suck it up and deal with it because there is someone out there who has it worse than you. No one wants to hear your whining."

While the examples I gave above are indeed extreme, the fact that people often take a certain situation and remind you "But it could be worse!" isn't extreme. It isn't new. Often, these people want to pull you out of your own suffering and make you feel better by reminding you of how good you have it- because they (or someone else) had it "worse." At its heart "it could be worse!" is both an effort to pull people out of their sorrow and a cry for acknowledgement of their (or someone else's) pain.

Whatever the desired effect is, that phrase, however, just makes them feel bad. Sadness, grief, anger and the like are complex emotions and they are all present in stresful situations. People who are reminded "it could be worse!" may feel like they are being ungrateful or overreacting to their stressful situation. The truth is, they likely aren't. Most people who are dealing with a crisis know it could be worse and are intensely grateful that it isn't "worse." Yet the knowledge of "worse" doesn't make their situation any "better."

"Better" and "worse" are also subjective. The person who is told that a child dying at birth is "better" than watching a child suffer might envy the other parents- not because they want to see their child suffer but because the other parents had more physical time with their child. Likewise, the parents who saw a child suffer may envy the parents who didn't see their child suffer from a painful illness. In an effort to remind the first parents of this, they dismiss their feelings by crying, "Suck it up, buttercup, because we had it worse than you!" The truth isn't that one situation is better or worse than another; all the situations are hard. It's just that there is a silver lining, however crummy that silver lining might be, and that silver lining is something other people want.

When a child skins his knee, you don't tell them to stop crying because "it could be worse! Some people break their leg when they fall off a bike!" No, instead you offer a hug, a kiss, clean the wound and put on a band-aid. That's what people in crisis situations really need:  a hug, a listening ear, a shoulder to cry, a cup of tea. They don't need their feelings dismissed or rejected. They need them acknowledged before they can begin to heal.

 

What can you say to someone going through a crisis? While it depends on what is going on, some helpful phrases might be:

 

I'm sorry for your loss.

I am here if you need to talk.

Call me if you want to talk. (or call your friend!)

Can I bring you a meal?

May I coordinate a meal service for you?

May I provide _____ (housecleaning, yard work, etc) for you?

I am thinking/praying for you.

Your feelings are valid and normal.

You are not a bad person for being angry/upset/mad/fustrated/etc.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 



To the mother at Trader Joe's

To the mom behind me in the checkout line at Trader Joe's,

I'm going to start this off by saying, "You are a good mother."

I am also going to say, "You love your son."

The other day, you were behind me and the Herd in the checkout line. Cole was tired, grumpy and pacified with a lollipop. I noticed your youngest son is about the same age as Cole and looked like he was feeling the same way: tired and grumpy. He was letting everyone in the nearby area know this in his toddler way. I smiled at you and asked if it was nap time.

"No," you said with a tired half-smile, "he's always like this." Then you told me that you find it hard to love your son and that he doesn't talk much. I saw you nearly cry at this admission.

Had my Herd not been trying to escape and had it not been a busy time at the store, I would have dropped everything and hugged you. Not because I felt bad for you or because you are a bad mom (which you are not) but because I think you needed it. You looked tired, at your wits end and slightly mortified that you told a stranger this.

I think you needed to tell someone that.

It's okay. It will be okay.

Few people understand how demoralizing it is to be yelled at by a 2-3 year old (or any child, for that matter) all the time. I told you this, how my two youngest don't talk much and it is hard to live with a strong willed non-verbal child. Few people understand how hard it can be to be screamed at for hours on end because you cannot figure out what your child wants. It wasn't that long ago that every single morning George would scream and cry because... well, I have no idea why. I would offered him food, drink, toys, hugs, the words to possibly express what he needed. He just screamed. More than once, I did too.

It does not make you a bad mother to admit that you have been given an intense child who wears you out- physically and emotionally. It does not mean that you don't love him if you don't enjoy every moment of pareting him. It doesn't mean you hate your child if he has behaviors and moments you find annoyig. No, all these feelings make you normal, human.

I'm not being trite when I say, "It will be okay and it gets easier." I promise you, it does. If you think your son needs help, please contact the local birth to three program. Don't listen to the people that tell you he's just a late talker or that you are spoiling him so he doesn't need to talk. This is likely not the case. (Actually, I know the latter is not the case.) If he does not have special needs, he will grow and learn to adapt to this world. You will grow too and you will help him.

Please take care of yourself too. You deserve and needs time away. Find a care giver that you love and trust and go out, even if it is to just do the grocery shopping alone, grab a cup of coffee or sit in the car alone and scream. It is hard to take care of demanding little people in the best of circumstances. When the going gets tougher, it can be even tougher. You are worthy of a break.

Why am I airing your "dirty" laundry on my blog? Because as you are reading this, someone else is too. They are nodding in understanding. Maybe someone is crying because this post brings back memories and feelings of their own child's toddler years. Someone else is breathing a sigh of relief and saying, "I'm not alone?!"

I will say it now: You are not alone.

As I drove away, I realized I should have give you my business card and told you to e-mail me, I wanted you to know that a random stranger understands. I have been there, and survived.

You will too and it will be okay.
Love,
WaldenMommy

If you think your child has special needs, please contact your local birth to three program for a free evaluation. If you cannot find the number, contact your local public school or pediatrician.

While a variety of feelings towards your children are normal, please seek professional help if you experience signs of depression. There is help for you and medication you take that is safe for breastfeeding. If you feel like harming yourself or your children, please call 911.

Feminister Odyssey Blog Carnival

My post, "The Yellow- what now?," is featured in the Feminist Odyssey's Blog Carnival about women in literature. Pop over to  Our (Feminist) Playschool to see more wonderful articles about feminism, women and literature!

I should have gotten the drugs.

In November I went to my therapist for my three month medication check up. She likes to check in on how I am doing and make sure I am on the proper dosage of medication. These take about 20 minutes of my time and really aren't a bother... although I sometimes wonder if they have me come in so often just so they can see the little boys! They love playing with the kids.

My therapist thought everything sounded great although my anxiety had been a little high. We just chatted and she offered to write me a script for anti-anxiety medication to get me through the rough holiday season. I declined it then but promised to call in if I felt I needed it. I really felt confident that I wouldn't, though.

Darned if I shouldn't have taken the script and chugged a whole bottle right then.

On Tuesday Cole had a follow up appointment with his ENT. (I say "his" because we are now the proud patients of TWO ENTs.) We still have some concerns about his speech development and our birth to three program encouraged me to ask about more in depth hearing and possibly an ABR.

At the ENTs office, the audiologist tested his hearing as best he could on a 2.5 year old who hates people in white lab coats, sitting still and cooperation in general. He passed the exam and his ears looked perfect. He's grown several inches and gained a few pounds too, which we were all thrilled about.The ENT said that it can often take children until they are 4.5 to 5 to catch up on speech if they had a hearing loss related to ear infections, which Cole did.

BUT I have a history of hearing loss in my family. Coupled with the fact that he hasn't made as much progress as we would like, the ENT wants me to bring him back in six months for another hearing test. He passed the exam as much as he can without being "heavily sedated" for the ABR.

Yeah, as soon as they said "heavily sedated" I was like, "Oh, we can wait six months. I'm cool."

The next day, Adam had his foot surgery. He has a condition where the bone in his ankle "flakes" off and loose fragments of bone hang around in his joints. It's not exactly pleasant and every few years they have to go in a suck out the bone. (I offered to do it on the kitchen table with a sharp knife and the vacuum. He said no, even after I offered whiskey as an anaesthetic. Whimp.) The surgery takes a few hours and is at an out patient clinic.

I was fine when we were at the clinic, even thought the place smelled like a hospital (read: sterile. Read also: NICU). I kept my mind off everything by grabbing a snack (stress eating) alone and sewing the ears on a stuffed cow. The real problem came when they brought me back to the recovery area.

Adam was sitting up in bed, shivering, attached to heart and respiration monitors and an IV.

For a moment, he wasn't there and I was with baby George, watching the monitors.

I had to take a few deep breaths to compose myself, reminding myself that this was my husband, not my son. My son was home with his grandmother, being spoiled rotten and enjoying himself.

But I still watched the monitors, remarking on his heart rate and breathing to the nurse. I felt my heart rate rise and I willed myself not to have a flashback or panic attack.

It worked and we drove home fine.

But when Sandy Hook happened, that was IT. I was DONE. I was dreaming at night that my daughter and niece were in school and hurt. I dropped the kids off just fine, but I was more worried than normal and stress eating.

I called in for the anti-anxiety medication and picked it up. There was only one problem... it would make me very, very sleepy.

Now, this is a common side effect of the medications I can take. Normally, it isn't a problem and when I sleep at night, I feel better in the morning. Win-win. But I know from experience that I am hard to wake up at night... and my husband would be doped up on hard-core painkillers. Even without the pain killers, he couldn't walk. If there was an emergency at night, neither one of us would be able to help the kids.

Sigh.

I never took the medication and muscled through somehow. It wasn't ideal. My in-laws ended up coming one afternoon just so I could nap. My parents were in town for a  few days and helped to wear the kids out and took two of them for the night. I still didn't sleep well but the help was valuable.

Thankfully, Adam recovered well and will be getting his stitches out soon. He's more mobile and is back at work. He had to wear a "boot" and use crutches as needed but he's no longer laying in bed all day, watching Star Trek on TV. I hit a wall last week and took a 3 hour nap on New Years Day.(Snuggled with Camille and Cole... it was sweet!) I'm still tired and run down, but a few days of some good vitamins, food and the kids back at school should help!

Still... I wish I hadn't had to muscle through on my own. I wish I could have gotten some sleep. It wasn't the most fun filled holiday season ever, but we made it through and plan to enjoy 2013.

9 Days that Changed our Lives: Thanks and Giving

Every year since 2008 Adam and I have coordinated a team of volunteers to bring Thanksgiving dinner to parents who currently have babies in the NICU. Adam cooks the turkey, I get the volunteers together and we all come together Thanksgiving Day to feed the families who are where we were years ago.

This is our fifth time bringing Thanksgiving to the NICU and we had 3 TV stations filming the event. All three covered the story from different angels. Adam and I were interviewed by KMBC.

Many of the parents who help out are parents of micro-preemies. They spent months at the bedside of their child while we were there for only 9 days. It was only 9 days but it was 9 life changing days. It changes everything about us- how we parents, how we view life, the causes we are passionate about. Because of those 9 days, we have the NICU Thanksgiving.

Adam started it. He told me he had "nervous energy" and need to do something. In 2008, while George was still in the NICU, he brought dinner to everyone by himself. In 2009, we had a small group of volunteers. Now we have the NICU Foundations, Circle of Hope, helping us and I feel that this year was our biggest and most successful yet!

 

 

People ask why we do this. In his clip, Adam said "guilt" but that's not really the case. We came to love and care for the other parents we met in the NICU and really wanted to do something for them. It's our way of offering love and support to the people who are where we were four years ago.

 

Some say that the short amount of time late term preemies spend in the NICU doesn't matter. Some say they aren't real preemies or real graduates or that the long term problems they have are nothing. But remember- that late term preemie of mine, those short 9 days.... they are the reason for this. They are why we give thanks and give back every year.

 

Those 9 days.... they mean everything.



How's your mental health?

If you go to my sidebar, you can click on "The Yellow Wallpaper (PTSD)" and see all my posts about dealing with PTSD and PPD. I don't know if I have ever told you the whole story of what happened. I don't know if I can right now. It was a hard, hard time and I remember telling my father that I knew why veterans would turn to drinking as a way of coping after a war. I felt like I had been through a war zone. I got it.

In many ways, I had been through a war zone. Studies show that the emotional trauma of the NICU has a huge impact on parents. It is something that is hard to understand, unless you lived through it.

In addition to depression and PTSD, I experienced anxiety after the NICU. I think it is common, because anxiety levels are high while your baby is in the hospital and they may remain like this afterwards. When you have spent so many days wondering if your child will live or die, it's normal to be anxious about their health! To this day, I dread cold and flu season, wondering if George's lungs are still strong enough to take the onslaught of germs. Yes, I know it is silly because the child has never had anything wrong with his lungs (since birth!). But it is there. This article from Hormonal-Imbalances is a source of good information about one woman's experiences with anxiety after the birth and death of her twins.

If you want to know why I call PTSD and PDD "The Yellow Wallpaper" go here.

If you want to read about the niggling effects of PTSD and meeting one of our nurses 3 years later, go here.

In some ways, trying to take control of PTSD and living with PPD/anxiety is like constantly living in fall, praying you never see winter and wishing for spring. But sometimes, fall isn't so bad. There can be help in fall.

And maybe you can skip over winter and head straight for spring.

Dear Prematurity

I wrote this a few weeks ago when I learned of another baby in "our" NICU. The news came after a long week of struggles with George. I went home and just cried, funstrated and sad and angry.

As far as I know, the new little one is plugging along well and should be home around his expected due date this winter.

Dear Prematurity,
I hate you.

I know it's proper to begin a letter with "how are you?" or "I hope you are well." You know what, though? Let's just cut to the chase. I hate you. I really, really, really hate you.

George in the NICU, 2008

Aside from seafood, hair clogs in the drain, and barf, there isn't much I hate. Things I find annoying? Sure. Things that temporarily steam my broccoli? Yep. But hate? Naw, not much I hate.

But you? You I hate. I hate you with the fire of ten thousand suns. I hate you with the tears of every mother who was told her baby had to be born too soon. I hate you with the grief of every parent who has ever lost a child for any reason. I hate you with the devastation that comes with seeing your child breathe with a machine. I hate you with every chug chug of a breast pump that reminds a mother that a machine is emptying her breasts, not a baby.

I hate that you claim 1 in 8 babies. I hate that you steal those one in eight couples from hearing their fat, healthy baby cry for the first time. I hate that, because of you, 1 in 8 couples is denied the chance to have their baby thrown on their chest, fat and wiggly and warm from the womb. I hate that, because of you, children face life long complications. I hate that, due to you, my son must struggle to speak.

I hate that my oldest son now asks if a new baby is going to be born healthy and come home. I hate that I now have a mental disorder commonly associated with people who have been through combat. I hate that our family's innocence has been stolen. We can no longer enjoy a pregnancy; it now brings the fear of a preterm birth with it.

I love my son and the friends we have made on this journey. But you, you prematurity, can go eff yourself.

You know what I hate most of all? I hate that you claimed another family. I hate that last night, I learned of another family who has a little one in the NICU, born much too soon. I hate that they are now learning about monitors and tubes and wires, instead of being at home, snuggling a milk drunk little one. I hate the weeks and months they have ahead of them, sitting there in the hospital, all because of you, prematurity.

Go away.

What's the cure for you? We have made such great strides in keeping you at bay- surfactant to help immature lungs breathe better, medicines to keep a baby healthy inside a mother, new ways to stave off labor. But yet, too many babies are still born too soon. Babies like my son. Babies like this new little guy.

How can we kick your ass?

Because, by golly, after weeks like this one, I want your ass on a platter.

This week, my son struggled with talking- something that is a direct result of YOU. YOU stole my son's voice. You did something to his brain. You are the reason he refuses to talk to other people, and is hard to understand. YOU.

Every week, I strive to look at the blessings- the friends we have made, the lessons we have learned, the strength we have gained. But after weeks like this, I would trade it ALL in for my son to have a voice and for no other child to be taken from the womb too early.

I want every baby born healthy and I want you to be a thing of the past.

Yours, not so fondly,
Laura

(Photo credit: my mother-in-law or myself)

The Yellow- what now?

I first became aware of Charlotte Perkins Gilman's famous short story, The Yellow Wallpaper when I was in high school. I was very well versed in childbearing, labor, delivery, and infant care. My mother had been a childbirth educator and she was very open and honest about everything to do with human reproduction. I was deemed responsible enough to baby sit for weekends on end, often staying overnight.

(I know, right? Back then, I thought I was awesome. And while I was very responsible, nothing ever happened and I have very fond memories of the children I was baby-sitting, now I wonder, What the heck were those parents thinking?!)

I knew about post-partum depression and since my mother was an adoption worker, I knew about post-adoptive depression. I knew enough to know that the "rest cure" described in Gilman's work was a load of crock. I ached for the mother who wanted her baby. I knew enough to know that she needed help, yes, maybe some medicine but, mostly, she didn't need to be taken away from her baby.

I knew but I didn't truly know.

After the birth of my first child, I experienced mild depression that, in hindsight, was the result of my thyroid being out of whack. I had a large, cystic mass growing on my thyroid that caused me to experience a short luteal phase, hot flashes, weight loss (not a bad problem! ;p) and depression. The mass was taken out and I conceived my second child shortly after.

Although I had some mild problems after my second was born, it wasn't until the birth and NICU stay of my third that I had hard core- PPD and PTSD. I had depression, flashbacks and the inability to cope with daily life. Oh, and the anxiety!

On my biggest fears during this dark time was being taken away from my children. Logically, I knew it wasn't going to happen. My husband was able to help me and I was actively seeking treatment. I did well on medication and my children were never, ever in any danger.

While I was going through all this, though, "The Yellow Wallpaper" kept running through my head. I understood how someone could go mad and feel like they were trapped in the wallpaper with no way out. For a brief amount of time,I feared I was teetering on the edge, about to topple into the wallpaper with no way out.

It's my weird, twisted and literary sense of humor that led me to label posts that deal with PPD and PTSD "The Yellow Wallpaper." I might be healing, I might be managing, but the wallpaper is always there, surrounding me, sometimes fading from view, sometimes slapping me in the face. I know there are other women being drawn into the wallpaper, feeling alone, wondering if there is hope, a treatment.

There is. By speaking about the wallpaper, I want to reach in, draw them out and let them know they are not alone. The wallpaper might be there, but it doesn't have to grab them. There is help.

I know. I have lived it, survived it and they can too.

Quick takes Fridays: Linky Love and Speech

1.

From the combox at Conversion Diary: Gettin' Real in the Whole Foods Parking Lot. I normally don't like this type of music but this is funny! (And I don't even live on the West Side of LA.)

2.
Best Attachment Parenting Blogs! A huge shout out to some of my fellow NPN writers, Code Name: Mama, Hobo Mama, Kelly Naturally and Antangkle.

3.
If you've read this blog long enough (ie, two minutes) you know that I suffered from PPD and PTSD. Many people know it happens after the birth of a baby but did you know that it happens after the birth and death of a baby? It makes sense, once you stop and say, "Oh, yeeaaaah." Hormonal-Imbalances wrote about PP Anxiety after the loss of her twins at 19 weeks. Her story is a gentle reminder to be aware of the signs and warning bells of PP mental disorders and to seek help. You are not immune, no matter how happy or sad your story is.

4.
In a flashback to Better Speech and Hearing Month, 29 Milestones for Speech and Hearing. Is your child missing any of these milestones? Please speak to your doctor or contact your local Birth to Three program.

5.

Speaking of speech and hearing, Cole has been talking alot more. He is using different tones and inflections for his words and jargon more. Lately we have been hearing alot of, "Yeah! French Fry!" or "Yeah! Ball-ball." I even heard him call Camille "Sisder" and I think he tried to say "Joe." Oh, yeah, the surgery was worth it!

6.

My husband's car ate up several thousand dollars worth of money today. Something we thought was a simple fix was not. Ouch. In total, our cars have eaten up over eight thousand dollars in repairs in four months! I am not sure what is eating our cars but they need to get over themselves.

7.

Our garden has grown so much zucchini that Joseph is leading a revolt against it. He nearly cried when he saw me tossing shredded zucchini with the pasta tonight. I promised no more squash for a few days. I'm pretty tired of it too!

Check back in the coming week to see how the Baby Sean Fundraiser went!

Flashback: Grief and Joy

(This post was originally published on November 4, 2009 on my first blog. You can read it here. It has been updated and edited from its orginal version. At the time of the writing, Georgie was 11 months old and I was pregnant with Cole. I am reposting this in honor of our March for Babies, which is today)

Someone once told me that once you are a parent, you can understand how pure joy and pure grief  can co-exist. I didn't understand it then and I didn't fully understand it when Joseph was born. Not even when Camille was a baby, did I get it. I mean, I understood pride and grief. I am so, so proud of my kids when they master a new mildstone but I grieved a little for the fun, sweet stage they were forever leaving behind.

Then Georgie was born. And I got it. I did. I was so joyful my baby was born but I grieved so much because he wasn't with me. I was joyful when I pumped milk, but I grieved because there was no tiny mouth guzzling it directly from my breast. Everything, everything was a swirling mixture of those two strong emotions.

[In 2009] Georgie's nursing story was recently in LLL's New Beginnings.  I wrote it because I was asked, because there is a need for successful preemie nursing stories and because I thought maybe I could give hope to someone else in my situation.
.
JOY

Last night, when I got home from group [therapy], Adam told me someone named "Beverly" had called his parents looking for me. We were confused, because as to why someone would call his parents looking for me since we have different last names. And they couldn't know me very well if they didn't know my husband's first name! But, yet, the name sounded familiar.I took her number and promised my husband I would call her back.

This morning I had a fleeting thought, "I think that is the NICU's lactation consultant." And it was.

JOY.

We had a wonderful conversation. She thanked me for sharing the story and for being brutally honest. She said that alot of mother's go home breastfeeding and tell her that they continue but, of course, you don't REALLY know. On a professional level, she was happy to know that one of the preemies DID go home nursing.

And I am JOYFUL that Georgie's story could make someone else happy!

She asked about the troubles we had, which were touched on in the article. And I was brought back to that HORRIBLE month where my baby slept for hours on end and had to be forced fed. I remembered vividly standing in the hallway of the church where LLL met, telling my friend, "I'm not convinced he's home to stay." It took all my willpower to not burst into great, gluping sobs as she hugged and me and promised me he was home for good.

GRIEF.

I remembered being scared and fustrated when Georgie's bili levels wouldn't go down. My doctor promised me that he would request a bili blanket to do home photo- therapy for Georgie so, no, he wouldn't have to go back to the hospital. I trusted my doctor but I lived in fear and grief.

It is the most gut wrenching, GRIEF-filled thing to take your baby home and then fear he's going back.

The LC said that they have a parent group at the hospital so they can get feedback from the parents on how to better serve them. She said the problems I had with him coming home were due to his gestational age. Honestly, I don't remember them telling me he could have problems gaining or with his bili levels. That doesn't mean they didn't tell me; there are chunks of time that I don't remember. And would I have listened? I was so filled with JOY at FINALLY bringing my baby home that I really didn't give a damn about anything except getting HOME.

When we got off the phone, I was glad I had to take Camille to dance class. I couldn't sit around crying; I had things to do. I'm going to pick Joseph up from school and go to the mall since I need some shirts. I think we might do lunch too and then get their hair cut and pick up some medicine for me. I need to be busy and forced-feed myself joy or I will fill up with grief

I don't know why it made me so sad. I think it was the vivid memories, the retelling, the reminder of how HARD it was. It's the fear that we will be back there, the fear that this baby will have it WORSE than George. It's the grief.

Georgie's story needs to be told. There needs to awareness of what happens to late term preemies, what is normal and what isn't. People need to know you can nurse but it will be a long, slogging road. People need to know the JOY in every birth, no matter what the gestation, but the GRIEF too, that comes with seeing a child born too soon.

When I got off the phone, I picked up my big little guy, hugged him and kissed him, because at the end of every grief there is always, always joy.

Quick Takes Friday: PTSD and Lent

1.

Last week, I went to a party at a friend's house. One of her friends, who I know through MOPS, was beginning to sell jewlery. Normally, I hate those parties because I hate to feel the pressure to buy something from someone. This was low key, though, and  I really enjoyed everyone's company and, yes, I bought a couple things.

There was one other mother there and she looked familiar. We began swapping birth stories and all three of the women at the party tend to go late. We were laughing and joking and I said, "I'm one of those on the flip side- I go early!" It came up that the other mom was a NICU nurse who worked at the same NICU Georgie was born at... and was there the same time we were.

Yes, she was Georgie's nurse. That's why she looked so familiar.

She remembered Adam, of course, and didn't seem to have fond memories of me. I admit I was stressed out (duh!) but I know I didn't yell or chew out the nurses or anything. I apologized and tried to explain... but, really, I would like to think she understood. That didn't stop the little flash backs from happening later that night, and the intrusive thoughts about the NICU.

2.

Jack's mom on "Life With Jack" wrote about PTSD in her post entitled "Post Tramatic Stress Disorder." I'm sad that she had to go through that but happy that she wrote about it. And, selfishly, it reminds me that I am not alone.

3.

I've been following "Hand to Hold" on their Facebook page and I wish I had known about this when Georgie was born. Blaine Carr has an article about PTSD (PTSD: When the Trama of the NICU Persits). His daughter was born a month early. So many times we only hear about the preemie and micropreemie parents and their trauma. While no one will deny that children who are born more prematurily face more problems and complecation, the trauma to children and parents who have a "short" NICU stay is often over looked. I am glad that this article acknowledges the mental, physical and emotional trauma those with short NICU stays go through.

4.

On the preemie front, a new study shows that babies delivered via c/s may be at greater risk for respitory problems. However, the article I linked seems that they are only talking about children with IUGR. Also, anyone who has kept one finger on the pulse of the preemie world, or bith in general, would know that the ACOG decied a year or so ago to recommend that otherwise healthy babies and mothers not be delivered before 39 weeks. Their reason is that due dates are not often accurate and that if the due date is off two weeks either way, a 39 week baby (37-41 weeks) is still term, whereas a 37 week baby whose due date is off by two weeks (35-39 weeks) may not be term.

I was, however, pleased to see this note: At the same time, recent research shows that a baby’s lungs and brain undergo important growth and development during the last few weeks of pregnancy, and that babies born just three to six weeks before their due dates are more likely to suffer disabilities or developmental delays in kindergarten. Thank you! Let's bring some awareness to the fact that the last few weeks of pregnancy are not just for sh!ts and giggles. Really important stuff, like, I dunno, THE BRAIN develops during that time.

Again, if one more person tells me that late term preemies are just fine, have no problems and are NOT at greater risk for XYZ, I might kick them in the balls. Just sayin'.

5.

Lent began this week. I am giving up junk food and, as a family, we are giving up going out to eat. Joseph is giving up soda and I think Camille is giving up a cheerful disposition. Just kidding... I am not sure what she is giving up!

6.

Don't know what to give up for Lent? Check out LifeTeen's suggestions! So many times we think about giving up food or going on a diet or stick with the same old, same old.... but how about giving up your pillow? Or any "found" money, like in the couch cushions or on the ground, gets donated?

7.

Confused as to why Catholics do what we do during Lent? Busted Halo tells you in two minutes!

Quick Takes Friday: Word Edition

1.

Last week, PuddinPie's SLP said that he needs to work on the word "no." I jokingly asked if we could teach him "Anything you say, Mommy!" She was not amused. She's great but has no sense of humor! Of course, he picked up NO right away. It's darling to hear him say something! His actual voice, the one he uses when he says words, is different than his "apraxic voice," the one he uses when he jargons.

2.

Speaking of words, he's trying to tell us more stories. He's not just jargoning on anymore; he stops the jargon to clearly indicate a new word. (Think of how a baby says "babababa" and then one day says "Ba! Ba! Ba!") He even is picking up words on his own. Earlier this week, he said, "KEY!" multiple times.

3.

PuddinPie isn't the only one speaking. Cole said, "dench die!" (French fry) He also came out with "more" and "ri dere mama" (right there Mama). I think I heard "Water."

4.

Both little boys are into the PBS show "Dinosaur Train." I swaer I only let them watch it as much as I do because Georgie sings "riiiii! riiii! riiii!" for the line, "Riiiiide riiiiide riiiiide the Dinosaur Train!" and Cole "roars" with the dinosaur at the end. I am not amused, however, that the giant dinosaur is named Laura. Adam, however, is.

5.

This week, Joseph had a big project to do. He had to make a covered wagon and then type up the "how to" steps to making it. The kid did the whole thing himself, with very little input from Adam or I. He even managed his time wisely and there was no rushing around at the end. I am so, so proud of him!

(On a side note, what is it with parents doing projects for kids? Seriously- I get helping them but these parents literally DID the project for their kids. Ergh.)

6.

Camille is currently into watching "She-Ra" on Netflix. Every afternoon is like a blast from my past around here. I know I had a She-Ra doll and horse; I wonder if my Mom still has them?

7.

I recently came across this article, "Living in the Shaky Place" a

bout a NICU stay and PTSD. This article perfectly sums up what I went through. Aside from the details surrounding the birth and NICU stay (and the "blackouts") this article could be about me. It's scary to think of the place I was in and makes me so happy to be in the place I am now.

Prematurity Awareness Month- Linky Love

This month is devoted to Preemie Awarness. PuddinPie's prematurity changed how we viewed many things. One gift he has given us is the ability to know, on some level, what to say and do for people who have a baby in the hospital.

People can sometimes say hurtful things to parents of babies in the NICU. This article has some helpful advice on what to, or not to, say: 10 Things Not to Say to Parents of Preemies

I really, really loved this article from Inspire.The article is the results of a survey given to members of the preemie support community, Inspire. They asked the people (mostly mothers) about the impact insentive comments had on them. Overwhelmingly, the mothers reported that the comments increased their feelings of lonliness and isolation. They people giving the survey noted that there is a need for increased awareness and education about prematuity and the long term effects.

I especially liked the comment addressing the need for increased awareness in parents, medical personnel and the general public about PTSD and the NICU. Slightly more than 40 per cent of the parents reported PTSD like symptoms after the NICU experience. They also meantioned that the NICU does not end when the baby comes home, something which is often not acknowledged by friends and family.

Check them out and pass them on! Increase the knowledge about prematurity and how it affects the entire family for years to come.