She is Me, I am Her

                                                                                 
Sometimes I think Fate, perhaps God, has a way of showing us what we otherwise wouldn't realize on our own.  What we have been too blind to see, too stubborn to accept, too ignorant to learn.  It takes a chance encounter, and even then, we don't smack ourselves on the head say, "Oh, that's what I was supposed to learn," until way later in the day. Or maybe the next day.  Or maybe in ten years.

I did something today that I try so hard to avoid doing at all costs - I took all four boys with me to the grocery store.  Between the triumph of getting Baby E to actually nap, to cleaning out my filthy mini van, to having a mommy and kids lunch and playdate, I just didn't make it there today.  And I needed something for dinner (damn my family for needing to eat every day).  So, after school we went.

Each of the three older boys wanted their own mini cart to push.  Okay fine...review started about how to appropriately push the cart. Two boys take off running with said mini-carts and go sliding across the polished floor, while third boy runs in circles with his cart.

First warning is given. 

Someone has to go to the bathroom, so we go to the far opposite end of the store from where we need to be to get to the restroom.  While boy is in restroom, two other boys chase each other around a display with the mini carts.

Second warning is given.

Back in the deli section, two boys are playing kamikaze carts and ramming them into one another, almost catching an elderly woman in their crossfire.

Everyone is told to put the carts back, which incredibly they do without arguing.  Of course, they all run at full speed to do so, ducking and dodging through the produce section.

As we make our way through the store, I forget several things, due to the concussion I surely have from smacking my head on the trunk door of my van earlier in the day.  The headache has been building, and now my brain feels like it will explode out of my skull.

And I have three decent-sized boys hanging off the back and sides of the grocery cart as I try to maneuver it through the aisles.

We stop and argue in front of the Lunchables display over whether a certain boy will actually eat the turkey sandwich from the one he has chosen or just drink the juice and eat the Oreos instead. 

And the meat shelves are void of the one item for which I came.

At the check-out, the boys are playing Ninjas and getting in everyone's way as they walk by.  But even though I have had it, I refuse the offer of help to my car (must be the concussion talking), and we make our way to the parking lot.

One boy not paying attention weaves in front of the cart, and I run him over leaving him sprawled in the path of oncoming traffic.  Another runs ahead, not noticing a car backing out.  And still another engages in what can only be described as something out of the final scene of Scarface.

I grab his arm, saying, "I have had it. Get in the frickin' car!"

And then it happened.  I looked over and saw myself.  The Me from fifteen years ago.  The twenty-something single gal loading her two bags of groceries in her car, looking at me out of the corner of her eye with a smirk on her face.

A look that said, 'Lady, why did you have so many kids if you can't handle them?'  And a smirk that announced, 'I will never let my kids act like that when I am a mom.'

I know this because that was me looking at so many moms who had their kids with them at the store.  Kids who were throwing tantrums and running away and talking back and being too big to ride in the cart.

And I was being judged now as the moms that I judged then.

I was that mom.  That mom who was unable to handle her own kids. With grace, no less.

I wanted to either say to her, "Give me a break.  I have a concussion," or run over, grab her by the shoulders and shout, "This is it.  This is what motherhood really is, and you need to know this so you can avoid this fate of being judged for how you handle their kid-ness."

But instead, I got into my van, took the whole crew home, and let them have the run of the house while I put an ice pack on my head.

Yes, I have learned not to judge "lest ye (me) be judged."  Oddly enough, everything I used to judge moms about before I was a mom, has come back to chomp down on me.

Earlier tonight, as I sat nursing Baby E and crafting this blog in my throbbing head, being assured by Hubby that I did not have a concussion because I was not forgetful and confused (more than usual anyway), I checked a blog I had commented on earlier.  Underneath my comment, another mom had replied to what I had said in a way that really upset me.

The crux of my comment had been how it upsets me when I see moms on social media complaining about their children - their healthy, living children - because I lost a son, and it pains me that they don't seem to be thankful for what they have.

Her response, in short, was to tell me to "ease up on the people that have different challenges" than me.

I was incredulous.  She was telling me that I needed to be okay with listening to her bitch about struggling to parent her three-year-old - - her living three-year-old - - as I sit here mourning a dead child which is surely the biggest parenting challenge of all.  The audacity and ignorance of her comment threatened to cancel the blog post I had been planning in my head.  I considered writing back, emphasizing my point about my dead child, but I didn't want her pity, nor did I want to engage in a written volleyball match of comments either.

Words my sister-in-law has said to me many times swam into my head, don't let this person steal any more moments of joy from your life.  And since writing gives me joy, I set about writing.

But the more I thought about it, the more I realized that I really haven't learned anything.  That I was judging this woman by her one comment without knowing anything more about her.  Maybe she is a single mom.  Maybe her husband is deployed.  Maybe her child has special needs.  Maybe she has special needs.  Maybe there are other things going on in her life, and her child's behavior is just the tip of the iceberg.

Sometimes, when the rage and sorrow over Joey's death build up inside me, I go to that place of entitlement that says, 'My tragedy sucks more than everyone else's,' and I expect everyone else to see it that way, too.

But then, I remind myself that not everyone has lost a child.  Just as I have not ever lost a spouse or been divorced, or fired, or hungry, or in an abusive relationship.  I have never had everything taken away from me and been stripped of my dignity and left completely alone in this world.

Maybe the above are more extreme examples, but everyone has something she is fighting, and hers is no more important than mine, nor is mine more important than hers. They are simply different, but tragic to each in its own way.

Sisterhood aside, we are all in this world together, and bad things - tragic things - happen to us all.  We all have bad days, we all feel inadequate or lonely or heartbroken or overwhelmed at some point in our lives, and to be judged by another person just adds to our feelings of anger, isolation and resentment.  Instead of superiority and judgement, we should be offering empathy and understanding and a helping hand. 

To that mother who is struggling through her day.

To that wife whose husband is overseas.

To that friend whose divorce has been bitter.

And yes, even to that neighbor whose biggest problem seems to be where to spend their two-week vacation this summer.

Because even she could be hiding something.  Maybe it's something that you know all too well about.

Put yourself in someone else's shoes.  Be her.  Understand.  Accept.  Love.  Forgive.  Let go.

And hope.  Hope that she can put herself in your shoes, too.

Today

Three years ago today was the absolute worst day of my life.  Three years ago today, I learned that my darling son, my little soul mate, had a tumor in his brain.  Three years ago today I thought I knew what that meant.

I knew that it meant he would be sick; but for how long was unknown to me.  I thought it could mean that he would get better, live to be the adult I'd always dreamed he would be.  I was certain it meant my emotional demise because when the doctor told me, "Bad news, it's a tumor," I started hyperventilating, and I thought I would never breathe again.  I knew I would not be able to function, for Joey, for myself, for my family.  I was absolutely certain that none of our lives would ever be the same again.

Today, I know that it meant something entirely different.  I know that it meant that Joey would die, that he would never live to be an adult, to play sports and date girls in high school, attend college and become passionate about something and someone.  He would never walk down the aisle to the woman he grew to love more than me, and he would never be the amazing father who started out as the sweetest, most loving big brother.

Today I know that his cancer changed me in ways I never thought possible.  Today, I know that I was able to breathe and to not only function but be strong for Joey and for my family.  To publicly hold my head up with grace and privately cry without my sons seeing me.  To come to terms with something so awful and emerge from it without being an entirely bitter, cynical, hateful person. 

Today I feel certain that something bad will happen to every single person in my family, and that it will happen when I am not guarded against it.  I know that the very least that has happened is that we are less happy, less joyous about the everyday events of life.  I know that we took so many things for granted, and even now sometimes we are too tired and too sad to change that.

But today, I have this:
                                     


and I am certain that every other gift I have has been left in place.  They may be flawed, angry, bitter, sad, confused, but they are mine, and I am theirs.

Today I know that my life is not defined by tragedy and my attitude should not be controlled by misery.  Regardless of the little white pill that I swallow every other day, it is my decision to wake up happy and live life the way I want to live it, or wallow in a gloomy place that closes off every wonderful and sacred part of my life.

Today I know that I am angry that Joey died, and that his absence hollows out my heart.  Today I know that I will feel that way tomorrow and next year and when I am an old woman.

But I also know that I am capable of love and laughter and happiness and that my sorrow will not break me.  I know that I have a life today, and it would dishonor my beautiful son not to appreciate it and try to live it with joy.

Mr. Big and the Envelope

This morning, Hubby had to take Slim to the church for First Eucharist practice.  Since "professional" pictures were to be taken, he had to dress in his suit he will wear tomorrow.

I never dress my boys in suits.   And this is why...

He looks so big and grown up.  Which is funny, because the poor child, at eight years old, only weighs 45 pounds.  Even the smallest suit coat looks huge on him, and the tie, a child's tie, hangs well past his waist.

But he is getting bigger, and that fact is squeezing my heart in its vice-like grip and tormenting my head with a mixture of emotions - pride, joy, happiness, sorrow, anguish, nostalgia.

As I readied his photography payment envelope, I noticed the line, "Please use one envelope per child."

We had somehow received two envelopes.

Sorrow, anguish, anger for the son who is not here to have his picture taken today.

I have the feeling that these subtle reminders, these jabs at my heart, are going to be popping up for the rest of my life, not allowing my heart to fully heal.

Simply Slim - Part 2: Medical Mishap

Many people mistakenly believe that a baby born with a cleft lip and/or palate will only need one surgery, and then he will be "all better."  But it's really not as simple as that (if only it were!).  As a child grows, so does his face.  Only in a child that has had surgery on his face (or probably anywhere, I'm assuming), the part that was repaired doesn't grow like the rest of the face.  So we knew that Slim was facing a lifetime of facial revisions, rhinoplasties, and implants in addition to his initial repairs.

Slim, left, and Joey, one of their first weeks home from the NICU.
Slim's red cheek is from the tape holding the NG tube.  The knob you
see above his mouth is actually the ridge where his teeth should come in.

After haggling with the medical staff over Slim's extended NICU stay, we finally convinced the doctor we could figure out how to feed him, and they let us take him home.

Medical tests and doctor's appointments began almost immediately.  First was genetic testing.  Neither of us has relatives with the condition.  My doctor surmised that Slim's clefting probably happened as a result of the "twinning" process, but this made no sense to me.  As a cleft is decided before ten weeks gestation, when the fetuses were small, I wasn't sure how that could have happened.  Plus, we did fertility treatments.  This was the first time the thought that God was punishing us for that entered my mind.

Thankfully, the geneticist found no signs of any kind of syndrome in Slim.  Many children's clefts are part of a larger syndrome or a group of symptoms that collectively indicate or characterize a disease.  In other words, it looked as though it was an isolated condition.

So Hubby worked on getting the best doctors he knew and had worked with to begin seeing Slim.  First up was a doctor who would fit Slim with dental appliances to rotate the part of his alveolar ridge (the "knob" under his nose where his teeth should grow in) back and up into his mouth to ready him for his initial lip repair.  These appliances were basically plastic retainers, five of them in all, and I lived in fear that my baby would choke on each one as he slept.

When he began to smile at around 6 weeks, I fell in love with him all over again, and understood the meaning of the "wide smile" that many parents on the support sites said they missed once the repair was complete.

You can not only see his gorgeous blue eyes here, but his darling wide
smile.  If you look really closely, you can see the plastic appliance.

By the time he was nearly five months old, he was ready for his lip repair.  Hubby and I sat in the lobby for what seemed like forever until the head of the anesthesia department came out to talk to us.  Slim was unable to breathe on his own after the surgery and had to be re-intubated.  The anesthesiologist had taped over his nice, fresh lip repair.  The surgery hadn't gone as well as expected, and we were greeted with a shocking post-surgery sight:

The thing on his nose is a bolster dressing used to control bleeding.

We were disappointed, but knew we had to press on.

Shortly after that time was our move to New York.  For the first three months we were there, Hubby was constantly fighting the infection growing at Slim's surgery site. One night after consoling his angrily crying baby, he said, "I'm his father, not his doctor!"  It was hard on both of us.  But regardless, we returned to the Midwest for his palate repair, which went better, if only slightly.

We were fortunate to find a cleft lip and palate parents' group on Long Island and through that met a wonderful surgeon who did nothing but cleft repairs.  At Slim's initial consult, she took one look at him and said, "What happened to him?  Who did that to him?"  I guess that's how we knew we were in the right place.

When he was a little over two, she revised his nose, lip and palate.  She did a marvelous job. When parents of other cleft children see him, they are impressed and want to know the name of his surgeon.

While we were in New York, Slim was also diagnosed with torticollis and low muscle tone, so he received physical therapy twice a week in addition to the twice weekly visits from the speech and feeding therapist.

Slim still learning how to walk at 17 months.





I loved his physical therapist.  She was smart and delightful and had the sense to have him x-rayed to see if anything else was going on in his little body.  That's when we found his syrinx, a fluid-filled cyst in his spinal cavity.  Another medical issue, another surgery.



                                         

But he continued to grow and delight us with his quiet ways, his gorgeous smile, and his sometimes-quirky behavior.

Simply Slim - Part 3 coming soon...

Simply Slim - Part 1: The Discovery

We knew Slim was going to be special even before he was born.  At twenty weeks, my high-risk perinatologist doctor (the loveliest, smartest doctor I will ever meet) told us that Baby B had "a complete bilateral cleft lip and palate" in a tone that might have suggested that she was merely telling us it was raining outside.

I always thought this ultrasound picture, taken at about 16 weeks,
looked strange.  I realized later that his cleft lip is visible in this
picture.



Seeing the terror and confusion in my eyes, she turned to Hubby, and they began speaking in "doctor talk" while I listened as if at the end of some long, garbled tunnel.  I didn't know what it meant, but I began to realize how grateful I was that she had kept insisting that I bring my oral surgeon husband to our appointment.

She left us alone in the room to absorb the information, but soon returned to deliver another blow: I was in preterm labor and would have to spend the remainder of my pregnancy on bed rest.

Luckily (and I use that term loosely), I could remain at home.  I remember calling my mother and trying to maintain my composure when telling her about the bed rest, only to break down sobbing hysterically when I told her about Baby B, "And there's something wrong with one of the baaabieeess," I managed to get out between sobs.

I had heard the term cleft lip (sometimes referred to as a "hare-lip," an antiquated and rather insulting term), but I didn't really know what it meant. And I couldn't even begin to imagine what Baby B would look like when he was born.  But Hubby, being in the midst of his oral and maxillofacial surgery residency, knew exactly what it meant and what he would look like.  He explained it all to me - his palate (the roof of his mouth) would be open all the way back, and his lip would be open on both sides as well.  He knew of websites that would show me pictures, adding gently, "...when you're ready to see them."

Initially, I cried for about three days  After fourteen months of trying, three rounds of fertility treatments and a miscarriage, I had been ecstatic to learn I was pregnant with twins.  The news of Baby B's birth defect (which is the third most common behind heart defects and neural tube defects), coupled with the bed rest, just knocked me back into my pit of helplessness.  But somehow in that three days, I pulled myself up and let my stubborn side out.  I knew there was no way I would have healthy babies if I sat and cried for the next twenty weeks.

So, I scrap booked and watched Birth Day on the Discovery channel and enjoyed the wiggles and kicks of the two babies growing inside me.  And eventually, tentatively, I asked Hubby to show me the picture of what Slim would look like.

Instead of the deformed, tiny monster I had originally feared, I saw picture after picture of darling babies with adorable wide smiles.  Smiles that were fixable, and I began to see that Baby B's fate wasn't as dire as I had imagined.

Then, at 34 and a half weeks, the babies wanted to make their appearance in the world.  Joey was born at 5:25 p.m.  They held him up, then whisked him away to the NICU before I even got to touch or kiss him.  Then my cervix closed and wouldn't let Baby B out.  And true to what I now know his personality to be, he didn't mind.  He just stretched out and enjoyed the room, probably finding something to do to distract himself while he waited.

At about 8 p.m., I began to see the look of concern on the doctor's face.  She wouldn't let me even eat ice chips, fearing she'd have to perform a C-section to get Baby B out.  But then, at 8:27 p.m. he finally arrived.  The nurse held him up to me and the first thing I said was, "He doesn't look that bad."

In fact, he was darling. And she let me kiss him before he too was whisked to the NICU.

In the NICU, he had to have an NG (nasal-gastric)
tube because he was unable to nurse.



The more I watched Slim, the more he fascinated me.  It was his eyes.  Beautiful, blue, knowing eyes that seemed to search the corners of the room.  I would whisper to him, "Do you see the angels?" because I was convinced angels were watching over him.

I knew, even back then, that there was something special about Slim.  Something amazing.



Watch for Simply Slim - Part 2 tomorrow.

Magic or Miracle?

Lil' C was all excited tonight after finding his blankie that had been lost for a few days.  He came running into the hall to tell us about it.

"Oh, you found your blankie. That's great!"

"No, I didn't find it, but do you know who did?"

"Who?"

"God found it!  He whispered to me, 'I found it.'  It's magic!"

I have to say that I was quite surprised this was coming from my four-year-old hellion.  But, if he was initiating faith in God on his own, who was I to disagree?  So I ooed and ahhed and said how wonderful it was.  I tried to get Hubby into the act as well.

"Isn't that great?" I said, "Tell him how God can do anything."

"Yeah, right," he replied sarcastically under his breath.

I was a bit taken aback by his response, but then a thought occurred: does he, like me, not really believe that?

Was he thinking about how, when Joey was sick, people would write in our Caring Bridge guestbook that they were sure God would perform a miracle and cure Joey?  And how every time we read those comments we would roll our eyes and feel more helpless and sad?  Helpless and sad because we knew what they didn't: that some of the best neurosurgeons and oncologists in the country had given us no hope for a cure.

So instead of praying for a miracle, we prayed for the strength to say good-bye when the time came.

But Lil' C doesn't know that.  In his sweet, innocent four-year-old mind, magic did happen and brought back something he loved.  He doesn't know that given how the blanket appeared folded neatly over his bed rail that it was likely the cleaning woman, not God, who found his blankie tucked among the bed sheets. 

I'm not going to be the one to tell him, though.

Because sometimes I wish I still believed that I could get back something I loved whether by magic...or maybe a miracle.

Innocence

My four-year-old, Lil' C, is quite smitten with my friend Heather's daughter, Kate.  She's pretty sweet on him, too.  They take swimming lessons together and are on the same micro soccer team.  They make a darling little couple.

I think a lot about the types of women my sons will end up with.  And I think about what kinds of mothers those women will have.  Since I adore Heather for being such a sweet, funny, and laid back friend, I'm going to hold out hope for the next twenty years that this is a relationship that will work out.

In the meantime, since they have so much fun together, we'll just keep planning playdates.  Before their most recent one, Lil' C excitedly said to me, "Kate can touch my weapon!"  Even though he was holding a toy light saber, my adult mind of course thought something else.  I giggled and went to update my Facebook status.

As soon as Kate arrived at our house, the kids disappeared and played great together. After Kate was gone, I asked Lil' C what they had played.

"We played doctor!" he said.

"You did?"  Hmmm, perhaps we should have supervised a little more closely, my adult mind again imagining something inappropriate.

"Yes, Mommy, animal doctor.  Do you want to see our office?"  He took me to the basement and showed me where they had been playing.  I was relieved to see that a chaperone was at least present:

Just as I was smiling in relief at the innocence of youth, he added, "After we were done playing doctor, we went up to my bedroom for a party!"

Aye, yi, yi, how will I ever survive his teen years?

Living in the Middle

I have lived in the Midwest my entire life.  For all but six years, I have lived in the same city.  I moved three hours away for college, and Hubby and I moved to Long Island for two years, knowing we'd be back in the city we both called home. 

And I've never minded living where I do.  Hubby's and my families all live here, except for my sister who lives three hours away, and one of hubby's sisters who lives in Chicago.   A good number of our friends are here, and we have made wonderful new friends from our sons' school and church, people who rallied behind us when we were battling cancer with Joey and who supported us after his death.

With the ease and quickness of text messages, Facebook, e-mail and, of course, blogs, it's so easy to feel completely connected to all those friends and family who are scattered around the country.  So much so, that when I see an old friend, I feel like there's not a ton to talk about anyway because I've seen all her pictures on Facebook, read her blog, or chatted her up via e-mail or text.

Long Islanders asked us all the time: Why on earth would you move back to the Midwest??  Never mind that not a one could tell us where our state was located or had heard of anything that our state has to offer (which is actually a lot).  We would simply sing the praises of friendly neighbors on quiet streets and houses with backyards and three-car garages whose mortgages were less than what we were paying in rent for a tiny townhouse with a slab of concrete and a patch of dirt behind it.

This was our place in New York.  Don't be fooled - we only lived in the lower left-hand side.
Someone else had the garage and the entire top floor. 

But, as much as I sing the praises of home, it's nice to be able to travel.  And to see this:

Monterey, CA, 17-mile drive

And this:

Miami Beach, FL

Even this:

Central Park, NYC

It's nice to live a life that can even afford a good ole' Midwestern sunset over the lake, like this:



Okoboji, IA



Hubby, Baby E, and I recently took a trip to California.  Hubby had a conference but took a couple days off for sightseeing.  We marveled at the beauty of central California, the rolling mountains plummeting into the rocky shores where glorious white waves crashed.  The stars seemed much more dazzling at night on the road to Big Sur than we had ever seen, and we fell in love with the quaintness of Carmel.

"When can we move here?" Hubby asked with his eyes sparkling.

I looked at the baby in my arms and replied, "In about 17 years."

It's true.  For the first time in my life, I could see myself actually wanting to live somewhere else.  Like maybe here:

Someone actually gets to live here and overlook the ocean every day.

I wondered aloud to Hubby if people who live by the ocean, or near the mountains, or on a lake, or even in a vibrant, cultural metropolitan community really appreciate it every day.

But I suppose it's like anything in life.  You get used to it.  You take for granted that it's just there.  And that it's still going to be there when you wake up tomorrow. And the next day.

And the day after that.

I have to remind myself sometimes that despite the sadness and the difficult times I have endured with my family, life is pretty good.  I do have "what I always wanted," and cancer would have found Joey in New York or California or in Iowa.  Bad things have a way of seeking people out.

But so do the good. 

I'm thankful that I am able to travel with a spouse who wants to see new places with me.  But it's also comforting to know that he is just as happy at home as I am.

Living in the middle is not a bad place to be at all.