1 year, 5 months, 13 days, Again

Tommy's little sister Amanda is 1 year, 5 months and 13 days old today -- the same age as Tommy was on the day he died.

The weeks and months leading up to this day have left us apprehensive.  We've had the feeling that we're spending our last moments with Amanda -- as though she would be taken away today.  Although it doesn't make much sense, that is what we feel.

Today is also special because it marks the beginning of a venture into the unknown.  Until now, we've been fairly confident parents because we've "seen it all before".  But that era has come to an end.  From this day forward, we are like first time parents again.  It's a strange feeling.

It's also a bit mind bending to try to come to grips with the age inversion.  Tommy will always be the first child, but is he still the oldest?  I'm not sure how to think about that.  In our minds, Tommy keeps aging, so he will always be our oldest child.  But I've read that in other families, the surviving child starts to refer to the child-that-passed as their "little brother/sister" as they get older.  That makes perfect sense since children probably think "age" just means size.

Like all parents, we compare our children.  Not in a better-vs-worse way, but in terms of milestones, likes, and personality.  For example, both Tommy and Amanda are very active, but over the last few months we've noticed that Amanda has slowed down and taken an interest in the details of life.  Seeing the differences is a source of amusement and amazement because, despite growing up in as-close-as-possible-to identical situations, they are different.  We will miss being able to compare them.

Papai e Mamae

Two years ago

Today is Tommy's second death anniversary.  We've been wanting to write about what happened 2 years ago since we started the blog but we never had the courage or energy to do it.

Tommy was a very healthy boy -- he never needed antibiotics and was rarely sick.  We were also "psycho-parents" and were very careful with him, especially health-wise.  And if you don't know what 17 months looks like, imagine Tommy running, climbing and even starting to jump.

We went to grandma and grandpa's house on Thanksgiving and planned to spend the long weekend with the whole family.  Tommy had a mild cold and a low fever which quickly went away with Tylenol - nothing worth worrying about, we thought. He was a little less active than normal but still played with his cousins and ran around the house. He didn't eat much at dinner time, and around 7pm we gave him a bath. We thought that he wouldn't enjoy it because he was sick but, oh boy, were we wrong! Tommy had a lot of fun gargling water, practicing his back float and trying to make bubbles in the big bath tub with Daddy. Then he wore his brand new Christmas red reindeer pajamas and drank a little milk from his sippy cup. Tommy had outgrown his playpen so that night was the first time he would sleep on the floor. I sang the good night song to him and put him to sleep around 8pm; I noticed he was very tired as he laid his head on my left shoulder. We normally used the Angelcare (breathing-sensing) monitor, but since we were not at home we used a regular audio monitor instead. We heard nothing on the monitor after putting him to sleep.

Around midnight I went to check on him in the bedroom. I thought that it was weird Tommy didn't move when I opened the door and that he was completely face down. I touched him and his back was warm but he still didn't move. I called his name and kept touching him, but he didn't respond. I finally turned the light on and knew he was dead as soon as I saw him. I called Troy and asked someone to call 911. When Troy arrived and saw Tommy he fell down on his knees and started crying desperately. We immediately started CPR even though we knew he was gone. The paramedics arrived not long after the call but there was nothing they could do to revive Tommy. He was pronounced dead a little past midnight the day after Thanksgiving. The police arrived at the house and everything became a blur. We wanted to hold Tommy but we couldn't because everything was considered a potential crime scene, so we both laid down next to his lifeless body and cried telling him we were sorry for what happened.  It was horrible being asked pointed questions implying that we might be at fault, or worse, directly responsible.  When the sheriff was done taking photographs and collecting information he needed to start an investigation, he said that they were going to take Tommy's body to the coroner's office for an autopsy.  We didn't want to let them take him away from us, nor were we able to go to the coroner's office with them.  It was a cold night in November so we sent a warm blanket with Tommy.  We asked the driver to be careful with Tommy and he said that he understood our concerns because he also had children.  We were in disbelief.  A stranger took Tommy away from us and there was nothing we could do about it.  That was the last time we saw our son. 

The fact that the autopsy showed nothing was both comforting and disturbing.  Comforting because we wouldn't be criminally charged, and because there was nothing we should have noticed and taken him to the doctor for.  But it is profoundly disturbing because we'll never know what happened and how to prevent it if we choose to have more children in the future.  We spoke to the doctor that did the autopsy and she said the cause of death was Sudden Unexplained Death in Childhood (SUDC).  SUDC -- like SIDS -- is a "diagnosis of exclusion" which means that it is prescribed when all known causes of death have been ruled out.  In other words, saying that someone died of SIDS / SUDC is the same as saying, "we don't know why they died."  The only difference between SUDC and SIDS is the age of the child.  SIDS is for children under 1 year old; SUDC is for children over 1 year.  

We have no regrets.  We enjoyed every minute we spent with Tommy, and we did our best to make his life happy.  He will always be a part of our family and, of course, we will always miss him.

1 year, 5 months, 13 days

Tommy and Papai assembling his activity table

Tommy lived for 1 year, 5 months, and 13 days.  Tomorrow he will have been gone longer than he was with us.

Although we are not really date people, today feels like a big day.  It's big because a bereaved parent's fear is that their child will be forgotten by the world and even by them.  Children, naturally, haven't had time to create a large social network, so the memory of their existence lies with close family and friends.  And somehow today feels like crossing a threshold with respect to those memories.

I once told a friend that I feared the passage of time because each day took me farther away from my son, farther from my memory of him.  He told me to think of each passing day as one day less to wait to be reunited with him.

Tommy, you won't be forgotten -- ever!

Eu te amo muito muito muito,

-Papai

Happy (belated) birthday

Dear Tommy,

We were supposed to have written this post a long time ago.  June 10 was your birthday, and you would have turned 2 years old.

Papai and Mamae were really nervous about the first birthday without you.  Last year when you were still with us we were already making plans for your birthday.  We talked about throwing a party at Pump It Up or at the swimming pool.  But since you loved animals we knew that what you would really enjoy was a petting zoo birthday party just like the one we had on Halloween.

Tommy (15.5 months old) and the bunny rabbit at the petting zoo

If only we knew our plans would be quite different this year.  Instead, we had a small family gathering at the cemetery where we remembered you and released balloons with messages to you.  I hope you got them all!

Cousin Parker's message to Tommy.

Also, on June 10 Uncle Darren, Aunty Oona, Parker and Riley got a birthday cake just for you.  Grandma and grandpa were also "virtually" there online when we sang Happy Birthday to you!

We are very lucky for our family and friends that have been so supportive for the last year.  I just wish you were here with us to blow out your candle.

Eu te amo muito muito muito.
-Mamae

Aliens

It's been a while since I last wrote on the blog.  These past few weeks have been hard.  The sadness is the same as it was 6 months ago, perhaps even stronger.  Back then we were sad, but everything also felt very foggy; deep down there was hope that one day we would wake up from this horrible nightmare.  Now everything feels very real.

Lately I have been feeling a little bit like an alien, like I don't fit in this world.  The world is shaped for unbroken families that celebrate Easter, Mother's Day, birthdays and enjoy summer time together.  Those dates have a completely different meaning to us now.  They remind us that Tommy is not here with us.

I'm afraid most people think (and expect) that we are probably getting over our grief.  For example, some friends were surprised to hear that we go to the cemetery 3 times a week.  But there's no "getting over" or "moving on" when you lose a child.  Going to the cemetery is part of our new life, just like our other rituals of saying good morning to Tommy or sleeping with one of his stuffed animals.

The funny thing is that last December a lady whom we had never met before came to us at Tommy's memorial service and shared that she had also lost her child unexpectedly more than 30 years ago.  She bluntly confided: "I just want you to know that in a few months you will feel much worse."  I honestly thought that was very strange.  After all, who says that to a parent who just lost a child?  But now thinking back those were probably the most honest words we heard, and I am sincerely grateful for her.  Much better than "everything happens for a reason", "Tommy is in a better place" or other platitudes I am so tired of hearing.

On the positive note, in these past 6 months we have also made new friends.  Unfortunately, they have been in our shoes, they are parents like us who also lost their precious children.  They have helped us feel not so unfit for this world.  They've taught us that it is okay to be in a dark place and there is no getting over the grief of your child.  It has been a safe place where we can share our feelings and fears.  

Milka

P.S. If you've arrived at this blog because you've lost a child, I encourage you to seek out groups like the SUDC Program, Kara (a local grief support program in Palo Alto, CA) and The Compassionate Friends.

The Keepsake

From the beginning, I've wanted a keepsake to remind me of Tommy.  Something that I'd have with me all the time.

My brother suggested a tattoo.  It's a nice idea because it reflects the permanence of the father-son relationship, but I eventually decided tattoos aren't me.

There are pendants specially made to hold a tiny amount of remains of the beloved.  I really wanted one, but gave up after looking at thousands of them and not finding one that said "Tommy" to me.  I also found it disturbing to think that a cargo so precious could be lost if the chain broke.  

Troy's Keepsake

I nearly bought a photo engraved pendant, but again couldn't find something that really grabbed me.

After months of searching, I started getting frustrated.  Milka helped me out and suggested a ring on a chain.   I loved the idea because I wanted something I could keep close, something personalizable, but also replaceable if lost.  Of course, I spent another few weeks choosing exactly the right materials for the ring and the chain!  

I just got it a few weeks ago and love it.  It says Tommy & Papai ("Tommy & Daddy)" and has the inscription Fofo, te amo muito. -Papai ("Sweetheart, I love you very much -Daddy").

Smile

Dear Tommy,

It has been 4 months since you passed.  Four months!  We've tried to stop time by keeping the house exactly how it was.  We still have your lip-prints on our bathroom mirror; on cleaning day we cover it with a big piece of paper so that nobody accidentally wipes it off.  Your shoes and your green jacket are in the living room closet right next to ours where they always were; they are waiting for you for our morning walks outside.  All these things help us feel that everything is all right and that you are still here.

Unfortunately, the rest of the world doesn't follow our household rules.  Time is passing by.  Tree buds are starting to open, we see the signs of spring everywhere, and the world keeps turning.  However, it is still winter for us, and Mamae and Papai want to be frozen in time; we don't want to go anywhere.

Tommy on his birthday

I don't need to tell you how much we miss you.  You already know it.  I also miss seeing Papai's "Tommy smile".  When you were born you brought us a different kind of love and happiness we had never experienced before.  Papai had a beaming smile every time he was with you or thinking about you.  It was the signature "Tommy smile": a mix of joy, pride and sense of fulfillment that only you could provide.  That smile is gone.

I know Papai talks to you at night, usually after I fall asleep.  He asks you to come back and sometimes he talks directly to God asking for a miracle.  However, Papai suspects that even if you had the power to return, maybe you wouldn't.  You are our fearless, adventurous and confident son.  We know you must be very busy exploring Heaven.

We went to the cemetery today.  There were big airplanes and small noisy planes flying over our heads.  We also saw cows on the hills, wild turkeys and deer (eating the fresh flowers visitors had just placed on the grave -- how funny is that?!)  The fact that you loved making animal and airplane sounds made us wonder if they were all signs that you haven't forgotten us.  Even if it happened by chance, it doesn't matter; they still made us smile and think of you.

Eu te amo muito muito muito.
-Mamae

End of a Chapter

Dear Tommy,

A few days ago I called the coroner's office to see if they had made any progress on your autopsy.  They had warned us that it could take months to finalize the case.  It is a long and bureaucratic process.  We heard some families wait almost a year for the final report.  So last Tuesday I called the office but I wasn't expecting to hear anything new.  To my surprise, the lady said that they did have some news.  I froze.  Why did I make the call when Papai was not there with me?  Then she told me what we already knew (or at least suspected).  Cause of death: Sudden Unexplained Death in Childhood.  It means that they did not find out the cause of your death.

We had talked to the medical examiner in the past and she warned us they would probably not discover what happened to you.  So I wasn't surprised to hear the news (or the lack thereof).  Still, it was a slap in the face.  More than that, a realization that now it is official.  It made everything more real: you are not here, you are not coming back, and you did die.

I wonder if Papai had a feeling this was coming.  Because last week he had a delicate conversation with your stuffed animals.  We couldn't hide it anymore, so he told them the truth, the reason why you never came back home.  They seemed confused.  Just understand that it takes some time to absorb everything that is happening.  They had so many questions but Papai did not have all the answers.  I'm afraid most of the questions will never be answered.  Curiously, they were not so concerned about the cause of the death itself but mainly why YOU, out of all the people in the world, had to pass that way.  

They all agreed a universal rule has been broken: stuffed animals are not supposed to be orphans.  It has been hard to accept it.  However, they made a promise.  They will love you and celebrate all the memories they have with you everyday of their existence, even if one day another child decides to adopt them.

What happens now?  I don't know, meu amor.  But we will all keep searching for answers.  We will keep looking for you, and we will be always thinking of you.

Eu te amo muito muito muito.
Mamae

Dreams

Dear Tommy, 

On Thanksgiving night, just after we put you down to sleep I started looking up gyms for children.  In December you would have turned 18 months and we would have enrolled you in gymnastics.  You would love all the jumping, bouncing, tumbling and somersaults!  Papai and mamae had so many dreams and plans for you; I had no idea our lives were about to change forever only a couple of hours later.

Everybody knew how active and athletic you were.  Well, pretty athletic for a 17.5 month-old!  Grandpa thought you would be a football player, and that's a huge compliment since he is a serious football fan.  You also enjoyed swimming and were very close to receiving your third Aqua Baby ribbon at swimming school.  We were so proud of you!

Papai and mamae had big hopes when it came to your academic life.  Math, physics, chemistry and biology?  We had you covered!  We could just imagine "Admiral Prof. Dr. Thomas Chinen, MD, PhD, JSD, DDS, CPA, gold medal Olympic swimmer" on your own Wikipedia page!

I have to admit, though, that if your interests at 17.5 months old were any indication of what you would be, you would have become a garbage man or a mailman.  You always wanted to see what was inside the big dumpster and loved throwing things in the trash can, especially the lint from the dryer.  As for your promising career at USPS, remember how we used to pick up the mail everyday around 5pm?  First, you checked the "misdirected mail" box for hidden treasure.  Then we looked for our own mailbox.  I put the key in the lock, lifted you up, and YOU unlocked the little door.  You handed me the letters one by one and then put them back -- one by one! -- in the mailbox and closed the door.  By the third round, my arms were so exhausted I had to end our ritual by locking the mailbox!  Picking up mail was so much fun, wasn't it?  You have no idea how hard it is to do it by myself now.  I often ask Papai to come with me because it is too painful to do it without my little helper.

Tommy at 14 months: he loved getting into the mail box for big packages
 

Tommy, I feel like all our dreams and the future of our perfect little family were taken away from us 3 months ago.  Don't worry, papai and mamae love each other just as always and we love you more than anything in the world.  It's just that now we have a big empty hole in our lives, a hole the size of a Tommy, and nothing nor anybody will ever be able to fill this emptiness in our hearts.

Eu te amo muito muito muito.
-Mamae

Three month anniversary

Dear Tommy,

Today it's been three months since you left us.  Mamae and I are missing you more now than before.  I think it is because before we didn't really believe that you weren't coming back.  Even now when I watch your videos I feel that you are right here, perhaps just around the corner.  When I read you Goodnight Moon now, I can still feel you sitting on my lap, turning the pages.  And tonight when I saw your pictures I could feel your plump little feet in my hands.  All these vivid memories make it hard to imagine that it will be a while before I get to see you again.

It feels so strange to talk to you in English so I'll switch now so you'll understand me better, ok?  Filho, espero que voce esteja bem e feliz.  Nao se esqueca do papai nem da mamae, ta?  A gente nunca deixa de pensar em voce.

Eu te amo,
Papai

The Sun

One very good friend recently passed us a note on the blog. He is also a parent and we were just touched by his beautiful words. What really impressed us the most is that he was able to express exactly how we have been feeling lately. In fact, we don't think that we would have been able to write as well as he did, so this is what we would like to share today. (In case you want to read it in Portuguese, click HERE. It's the 4th comment on the page.)

"When we meet our significant other and get married, life before marriage feels so distant that we feel like we were already married before we were even born.  Then our children are born and we try to remember how our life was before them.  A life with no crying, diapers, bottles, no rush, tiredness and most importantly without the unconditional love that rips our hearts out every time our child has a fever.  It’s the same love that fills our hearts with joy when we see our children taking tiny, hurried, teetering steps towards us to give us a big hug when we get home from work.  At that point, life before their existence feels secondary, even meaningless.  Our children become the center of the universe. And then when a vacuum suddenly replaces the sun that used to bring us joy, the sun we used to orbit, we are left without a point of reference, we are lost.
At first, it feels like the pain of loss will never pass, but I believe that time will ease the pain.  Not because the love or the memories of Tommy will fade away; on the contrary, they will always be very alive.  I believe that when you think of him in the future your sadness will be replaced by good memories and the joy and honor of spending time with him during his brief journey."

A sign from Tommy

About a week ago I was feeling quite troubled about Tommy.  So I asked Tommy to give me a sign that he was okay.  Something concrete.  Something clear.

The next day we went out to dinner and, as the wait was half an hour, we went to the bookstore across the street to pass the time.  Most bookstores in our neighborhood have closed so this was a rare treat.  As we walked in to the store, we split up, and I walked up to a book table.  The first book I laid eyes on was a white paperback with gold letters.  It was titled "Proof of Heaven".

I picked up the book.  It is the story of a neurosurgeon that went into a coma for 7 days and had a very extended and detailed near death experience (NDE).  What is special about his experience is that his brain was completely shut down during this time.  It's also notable that, as a neurosurgeon, he had previously seen many patients go though NDEs but he wrote them off as figments of the imagination.  So what he experienced was real enough to make him change his position completely and write a book about it.

I'm still reading through the book now, but regardless of my conclusion about the book itself, I feel the sign from Tommy was concrete and clear.   Obrigado filho.

New lights

One thing that brings us peace is visiting and decorating Tommy's grave.  We recently added some solar lights, plants, a banner and a stuffed dog.  I never imagined I would do this but now, just a few weeks later, it's what makes me happiest.  Evidently, doing things for your child never loses its significance.

Over the long weekend we visited everyday, just before sundown.  We bring chairs, blankets, hats and even coffee and tea (there is a Starbuck's across the street).  We sit quietly, and wait for the lights to come on one by one.

Tommy would like the banner.

Tommy would love the lights too!

Bob the labrador

Two Months

Chuchu and Tommy (5.5 months old)

[Today's post is by Milka]

Dear Tommy,

I can’t believe it’s been 2 months.  I don’t like it.  Each day that goes by means that we are one day further away from you.

We didn’t change anything at home since the day we drove to grandma & grandpa’s house on Thanksgiving.  Zuzu, Chuchu and your other stuffed animals are still in your bedroom.  I don’t think they understand what happened.  They miss you.  But papai goes to your bedroom everyday in the morning to open the curtains “with you” and at night to say good night.  Remember that I wanted to wash Chuchu because he was kind of stinky?  You loved putting his nose in your mouth, and there was always a lot of saliva!  Anyway, I’m so glad he never got a bath because his stinky smell makes us believe that you are still here with us.

I hope you don’t mind that today I put away the puffs (a.k.a. “baby cheetos”).  They were kind of stale.  But I promise I’ll buy fresh ones.  Papai eats hummus and crackers everyday just like you both used to.  You definitely got your love of hummus from him!  I see tears rolling down his face every time he eats it; I think he is thinking of you.

I know you must be very busy playing with the other angels but we just want you to know that mamae and papai are here always thinking about you, and you are always welcome to visit us in our dreams.

Filho, nos te amamos muito muito muito!
-Mamae e Papai

Being Mono-Social

I'm not being anti-social; I'm being mono-social.

Lately, I'm finding that large social gatherings are tough.  It's probably expected that a bereaved person feel this way, but now I know why (at least for me).

There is some unwritten rule -- either in my head or in society -- that when in large gatherings you act normal.  That means talking about things like work, hobbies and acting happy.  But that makes me sad because it doesn't acknowledge the hugeness of losing Tommy.  It makes me uncomfortable when I say (either aloud or implicitly) "Yep, everything is fine."  

There is another unwritten rule -- either in my head or in society -- that one-on-one you're allowed to tell the truth.  You can say that things are not ok.  You can be quiet.  And that brings me peace.