The Mask of Grief

I think everyone who has grieved has worn a mask.  I myself wake up every morning, and the first thing I put on is my mask.  I put on this mask even before I get out of bed...in fact, it is necessary to wear in order to get out of bed.  This is the mask through which I smile, and say I'm doing okay...it's the mask that gets me through the day.  It's the mask that makes it look as though I'm your normal, everyday person...going to work, taking care of the house and the dogs, running errands, living life.  But it's also the mask that hides deep, sharp pain...tears...despair.

If it weren't for the mask, every time someone asks me how I'm doing, I'd probably break down into tears.  If it weren't for the mask, I'd smile much less often.  If it weren't for the mask, I'd probably scare most people away.  In fact, I'm not sure who I wear the mask for...if I wear it to protect others, or whether I wear it to protect myself.  More often, I think the mask is there to protect me...it's fragile, and it must also be protected.  If I were to tell people how I really feel, the mask would begin to crack...if I let the tears flow constantly the structure might weaken.  And if I damage the mask enough, would I even be able to put it on in the morning??

Tim and I work hard to keep living...not just to keep going through the motions.  We try to find reasons to be happy, and we try to make the world at least a slightly better place.  But this is exactly that...hard work.  It would be so much easier to simply succumb to the pain.  Sure, it would still be exhausting, but the effort required to succumb would be minimal compared to the effort required to live life. 

These last few weeks, I definitely feel as though I have put some cracks into that mask.  I've allowed myself to feel all the feelings...the bad along with the good.  I've allowed the tears to flow when I need to, but I've also smiled when I can.  I'm hoping that these last couple of days of a much-needed break will allow for those cracks in my mask to start to heal...

Why We Know We're Ready for a Baby

We're still not pregnant, and although I'm not getting super worked up about it (well...trying not to at least!!) I did come up with this rather exhaustive (and somewhat sarcastic) list of how we know we're ready for a baby...

We have a nearly-ready-to-go nursery...complete with crib, rocker, blankets, binkies, changing area...basically everything except a baby.

We have a car seat with two bases, and we know how to install it in both of our vehicles.

I wake up around 5 every morning...weekdays and weekends...so I'd be ready to get up and play early.

I have simplified my morning routine to cut out any wasted time, so I could easily add time to care for a baby.

Our dogs think they run the house and need to be knocked down a few pegs...and from experience I know a baby would do that!

Speaking of dogs...I'm so ready to nurture a small being that we run the risk of acquiring another dog or small animal if we aren't having a baby...

And speaking of acquisitions...we have an abnormally large collection of Build-a-Bears and stuffed animals, and we run the risk of running out of space in the nursery for an actual baby...

We have the perfect house to start a family...besides the nursery we have plenty of room for playmats, playpens, swings and bouncy seats.

The hospital where we'd deliver is right across from Evergreen, so we would very easily be able to visit our new baby's angel big brothers.

We already have the best doctors ready to get us through a pregnancy, and a pediatrician ready to keep our little one healthy.

We have grandma, grandpa, aunts, uncles, and so many friends ready to snuggle a new baby.

I've already got a plan for making space in the kitchen for the bottles and drying racks, along with the teeny tiny baby dishes and utensils.

Sebastian heard us talk about Henry yesterday, and started looking around for that silly hairless puppy dog (well, in my mind that's what he was doing!)

Henry has filled our walls and shelves in our house, which I love, but maybe he'd like to share the love.

We have the perfect guardian angels looking out for us and any new life we might be blessed to nurture.

Everyone else is (or at least seems to be) doing it.

I would love to get to chat with Carrie at the beginning and end of each work day...and say hi to our daycare friends.

It's a little awkward to sit and play with baby toys by myself...

I love reading books to my boys at the cemetery, but I'd also love to share some of Henry's favorite books with a baby in my arms too.

I wouldn't even be upset if I were put on bedrest...I've got a list a mile long of shows to Netflix and books to read...and maybe I could even work on that book I keep saying I'm going to write. Plus, Hy-Vee delivers groceries now, so that would make life a tad easier for Tim too!

We know we make a great parenting pair...and we're ready to fill our empty arms and aching hearts with more love. We know another baby will not fill the space in our hearts nor the void in our lives left by Brady and Henry, but a baby would make his or her own place in our hearts and our home.

Empty...or Full?

We are coming up upon another Thanksgiving...a Thanksgiving with several seats empty at the table.  In a season of gratitude, sometimes what we're missing looms so much larger than what we have.  I miss having my mom around at Thanksgiving...and having her let my cousin and me be "in charge" of Thanksgiving dinner (as she and my aunt are hovering nearby, just in case).  I miss all the goodies she set out as dinner was being prepared, so many so we weren't even all that hungry by the time the turkey was ready.  But we filled our plates and gorged ourselves anyway!  I haven't ever had my children at the Thanksgiving table, but I miss their presence.  I want to spend so much time preparing their plates that my food gets cold on mine.  I want to plan Thanksgiving dinner time around nap time, hoping they would actually take a nap with so much activity going on.  I miss my grandma, and her crazy Thanksgiving antics...too many to list!  But I miss that feeling of anticipation, knowing we were going to spend almost a whole day with her, our aunt, uncle and cousins (with, perhaps, a game of not-to-be-named-on-the-Internet tag).

It's easy to feel this emptiness, especially around the holidays.  You see other families...seemingly complete and happy families...and you miss those people in your life.  It would even be easy to feel only this emptiness, and sadness.  But if I were to do that, I'd be missing all of the fullness of my life.  Although I have much to miss, I also have much to be grateful for.  I have my dad and my sister, who are always so good at letting me know they're thinking of me (and for whom I'm always thinking...but not as good at letting them know that!)  I have my in-laws, who have been absolutely amazing especially this month...letting Tim and me take the time we need, but also there when we want to be around others.  I have my "bonus" siblings and parents...cousins and aunts and uncles, with whom it can feel like no time has passed when we get together.  I have the MOST amazing coworkers, who let me know every day how much we are loved, and who get me through the days when I feel like I can't make it.  I have my three fur-babies, who sometimes make me crazy, but then one snuggle can make all the hurt disappear for a few moments at least.  And, most importantly, I have my amazing husband.  There were many years in my life when I was sure I was destined to be single...I even had my crazy cat lady persona all planned out.  Then I met Tim, and I just knew it was right...he was the person I had been waiting for...the man who would carry me through these turbulent years even as he processes his own grief.

I still don't know what tomorrow will bring...what emotions I will feel...whether I will choose to be a hermit, or choose to join our family in a Thanksgiving celebration, or whether I will be somewhere in the middle.  Which is another thing I am thankful for...the grace I've been given to make that choice...to do what I need to do for me.  No matter what tomorrow brings, I will miss those that are missing from our holiday...but I will also be thankful for all those that fill my life with love, joy, and laughter.

Hangovers

I've written about hangovers before, and how grief feels so much like an emotional hangover.  Today, I feel very emotionally hungover.  Somehow, the days leading up to and following major anniversaries and birthdays seem so much worse than the actual day itself.  It's as though our bodies and minds know that a specific day is going to be tough, so we can prepare ourselves, but we forget to prepare ourselves for the aftermath.


Now, as I enter the aftermath, I find myself a bit of a mess.  I've cried more today than I did yesterday...I feel more lost today than yesterday...I feel a bit deeper in that deep dark hole today than yesterday.  As is the case with grief, you never can tell how you will feel one day to the next.  Tim and I thankfully took today off, but I am a bit anxious as I plan to return to work tomorrow.  I just have to remember, I've made that return a few times now...and I have survived each time.  Plus, this time I only have to make it through a day and a half and then it's another long weekend.

Even in the midst of my messy emotions, I am so thankful to everyone who has been thinking of us.  We were showered with love on Facebook and through messages yesterday and even today.  Our house is bright with several flower arrangements, several with a theme of orange.  We've gotten cards in the mail, and emails of support.  And even today we had a special delivery of orange flowers and a favorite adult beverage.  I've said it before, and I'll say it again...it's the love and support surrounding us that gets us out of bed in the morning.  Thank you for following our story through this first year, for keeping us in your thoughts and prayers...and as we enter year two, as long as we have even one person reading, we'll keep sharing.

What a difference a year makes...

It's been a year now since Henry gained his wings...a year since I held my baby boy, my husband's arms around me, as he took his last breath...a year since we had to once again leave the hospital without bringing our baby home...a year since our life was forever changed... It's been a year of grieving, crying, learning...we have grieved and cried for our sweet monster, and we have learned what a huge impact his short life had not only on us, but on so many and even on the world.

Our lives are completely different now than a year ago. Our house is a little less hectic, though not necessarily quieter since we have acquired two more dogs (for a total of three). We are a bit more free in our social planning, not having to plan around naps, feedings, or availability of babysitters. Things like quiet time together as a family are even more valuable now than before.

We are still learning how to live without Henry. Each day, we make the decision to get out of bed...go to work...to adult. Some days it's easier, some days it's harder, but we keep on going. Even through our immense grief, we also feel immense love and joy, as we witness the impact Henry had on so many.

I know I myself am a much better person than I was a year ago, thanks to Henry. I am more compassionate, more patient, and much less judgmental. I have faith in the good in the world, as Tim and I continue to be showered with love, prayers and support, even a year later. I am, surprisingly, more optimistic...I know that I have many things and people in my life to be thankful for (especially my husband) and I know that more good things will come our way. Even as we struggle to get pregnant, I know our boys are planning and plotting...making sure they get the perfect sibling(s). 

Most importantly, Henry taught me the true meaning of the word hero. Tim and I always say Henry didn't lose his battle against leukemia. He would have kept fighting, but his little body just couldn't keep up with his fighting spirit. Henry's strength and spirit lives on, and his strength and spirit keeps us going. We love you Henry, today and every day. Thank you for bringing such joy and love to the world.

Henry

I've been flooded with sad memories lately...Henry sedated, intubated, and paralyzed...getting dialysis...a hospital room filled with machines...it's getting a bit overwhelming. That's not how I want to remember our monster. So I've been trying to remember better memories. And then I figured I shouldn't keep that joy just to myself...

I remember spending that summer with Henry. As he got a little older, he enjoyed sitting in his MamaRoo. I had it angled out toward the living room, but he always twisted himself around so he could see the TV. I worried a bit...as I was catching up on Game of Thrones that summer. I told Tim often that if Henry grew up to behead people or sleep with his siblings it would be my fault...

I remember we were so excited when we got his Exersaucer that we had to use multiple blankets and pillows to prop him up, and even on the lowest settings he couldn't touch the bottom. But he smiled as he explored the toys on it, and as Sebastian sniffed around curiously.

I remember flying home from Florida, proud of our "skill" in traveling with an infant...and all the gear that goes with an infant. I remember getting settled for the flight, and then just as we were taxiing for take-off Henry blew out his diaper. Rockstar mom that I am, I managed to change his diaper on my lap in the airplane seat.

I remember hanging out in our bedroom after work one day and Tim was folding Henry in half...folding his legs up by his head. And I remember Henry giggling, which led to some giggles for Tim and me too!

I remember how excited we were to start foods with Henry...and how unimpressed he was with rice cereal...bananas...apples. And then how much he loved sweet potatoes...so much that he grabbed the spoon from Tim's hand and took care of feeding himself.

I remember taking Henry shopping...and whether it was Wal-Mart, Target, or the mall, he was just happy to be out.  He loved the lights in Wal-Mart and Target, and at the mall he loved watching people and listening to what was going on.

These memories don't erase the hard ones, and they shouldn't. Those hospital memories are part of Henry's life, after all. But I much prefer remembering Henry with a smile on his face rather than with tubes running into and out of all parts of his body.  He was such a sweet little boy...happy to be alive...and that's how we remember him.

 

Nightmares

Last night I had a nightmare...involving Henry. Thankfully, I rarely have nightmares like these. In this dream, we were back at Children's with Henry again. Henry had gone through his treatment, but the cancer had returned. The doctors were doing everything they could, but it was not looking good. I felt that same, hopeless feeling I had last year at this time, watching my child fight, and not being able to do anything to make him better.

It makes me think of all the other families we've met, who have been affected by childhood cancer. Some of these families fight every day, fight for their child, fight to make life as normal as possible even amongst all the appointments...hospitalizations...scares. Families whose life can be turned upside down by something as seemingly simple as a cold. Then some of these families are fighting a fight like ours...fighting to go on after a traumatic loss. Some had children who fought for months...years...before the cancer finally took over. Whether a child is fighting, or has earned their wings...either way it leaves a parent feeling helpless...feeling as though they failed their child...unable to protect them from such a nasty disease.

Just looking at pictures like these hurts my heart...whether it's a picture of Henry or any other child. Today my heart goes out to all those parents, grandparents, aunts and uncles, brothers and sisters. Whether you have a fighter or an angel, it's a tough road. I wish this wasn't something any family had to know.

  

Hibernation

Yesterday, I texted Tim and told him I was feeling worse than the couple days before...even though there was no momentous anniversary yesterday.  His response was perfect...this grief journey we're on is like riding a rollercoaster...in the dark.  We don't and can't know what's around the corner.  Years from now, when we feel like we've somewhat healed, something will happen that will knock the wind out of us, and make us feel that pain all over again.  Even though I know this, it doesn't make those days any easier.

Today is another one of those days.  If I had my choice, I'd bury myself in a hole until I felt a little more like myself.  I don't want to worry anyone...I don't wish I could die.  I'm not feeling suicidal.  I'm feeling like I would like to  hibernate...use minimal energy only for life sustaining purposes.  Or at least burrow under my covers and ignore the outside world for a day or two.  Unfortunately, being an adult doesn't exactly allow for hibernation.  There still are bills to be paid, chores to be done, needs to be taken care of.  There are children to be taught, computers to be fixed, books to be ordered. 

Thankfully, I work with the most wonderful group of people.  (I don't care what you say...my colleagues are definitely the best.)  Every day this week I've come in to surprises on my desk...orange flowers...my favorite candy and/or coffee...a basket filled with orange goodies (even an orange bone toy for the dogs.)  Knowing that I have people surrounding me that care about and love me makes it at least slightly easier to get myself out the door.  We've gotten loving and caring messages on Facebook...text messages...in these dark days it does help to know people are thinking of us.

I still want to bury myself in a hole and hibernate...but I'm here, and doing the best I can, with the support of the best people around.  With that, here was one of my Timehop pictures today...sharing Henry's smiles with the world...

Cancer

One year ago...we headed in to the conference room on the PICU to attend our first set of "rounds" on Henry.  We walked in having no idea what to expect.  We walked in to a room filled with doctors, nurses, residents, pharmacy staff, and other medical personnel.  We sat in two chairs off to the side of the room...feeling small like mice.  The doctors started talking about Henry...this 6 month old male patient.  They said a lot of things that I don't remember, and that I definitely didn't understand.  But one word kept coming up that I did understand...chemo.  We had been told the night before that Henry probably had leukemia, or another type of cancer, or most unlikely some type of blood infection.  But we hadn't been given an official diagnosis.  As the doctors and medical personnel kept throwing that word "chemo" around, my dad (who was sitting in the back of the room with Tim's mom) finally asked if we could talk about the elephant in the room.  He said you guys keep throwing around these words, but no one has told these guys what we're dealing with.  At that point, one doctor (who turned out to be Henry's oncologist) turned to us and invited us into an adjoining room to chat.  At that point, we officially got the news that Henry had acute myeloid leukemia.

It was impossible to comprehend...our sweet, perfect baby boy...leukemia...these aren't things that are supposed to go together.  It still is impossible to comprehend...living a life without our son...all the milestones that he will never reach...all because of this beast called cancer.  And the worst part is, we are one in a huge sea of people affected by cancer every day...every minute.  Every day forty-some kids are diagnosed with cancer.  Every day people lose their spouses, brothers, sisters, grandparents, friends to cancer.  We have met so many families whose children are fighting or have fought cancer.  It's a disease that doesn't discriminate...old or young...rich or poor...perfectly healthy or medically fragile...it doesn't matter. 

That's why we want to do the Twelve Days of Giving.  We don't remember Henry as a kid with leukemia.  We remember him as our monster...happy, smiling, giggling, playing, up for anything.  We want to spread that joy as far as we can in his memory and in his honor.  So today as we start these twelve days, find someone that could use a smile.  Give them a hug.  Let them know you're thinking of them.  You don't have to spend money or give anything to let someone know you care.  Every smile we can pass on will fill our hearts, and will bring smiles down from our angels in heaven. 

Twelve Days of Giving

We are nearing the start of our first annual Monster's Mission Twelve Days of Giving.  Starting on Wednesday (the one year anniversary of the day Henry was officially diagnosed with leukemia) and going through November 22 (the one year anniversary of the day Henry gained his wings) we will be sending smiles and love.  We decided to keep it simple...sending a small gesture of love and support to those who could use a smile.  We wanted to honor Henry's legacy of love and joy and spread that at least a little bit to others.

Any of our followers are welcome to join in our Twelve Days of Giving.  You could send a gesture to someone you know is in need of a smile.  You could pay for the person's coffee in the drive-through line behind you.  You could help a neighbor rake their lawn.  You could do a small task for a coworker to make their day a little easier.  It doesn't have to be big, and it doesn't have to even cost any money.  Below you will find a card that will accompany our gestures, and you are more than welcome to use this card as well.  And if you feel comfortable sharing, we would love to hear about all the gestures of love and kindness that are being sent in honor of Henry. 

Finally, we will also be accepting donations to A Monster's Mission over the course of these twelve days.  Any money donated will be used to help spread cheer in Henry's honor.  Any that is not used for this particular Twelve Days of Giving will be donated to the Cure Search walk in June.  (The Cure Search walk raises money for research into treatments specifically for pediatric cancers.)  Perhaps instead of getting your morning coffee or donut one morning, you could donate that money to A Monster's Mission.  Or instead of grabbing that afternoon soda, you could donate that money to A Monster's Mission.  We are not an established non-profit, but any money raised will be used either for small acts of kindness or donated to Cure Search.

Whether you send a monetary gift, or smile at someone in the hall, thank you in advance for helping us to honor Henry's legacy and helping us to remember our sweet little monster.

To donate directly to A Monster's Mission, use this link: bit.ly/ammgiving

If you would like to use this card to share Henry's story and the inspiration for the Twelve Days of Giving, feel free to do so!

November

It's now November...the month we've been dreading since we celebrated Henry's birthday in April.  Each month, as it's gotten closer to November, has gotten a little tougher.  We know there are some hard days and hard memories coming up.  But yesterday was a happy memory...it marked three years since Tim got down on one knee (in his apartment, because he knew I wouldn't want anything even remotely public) and asked me to marry him.  Even though my initial response was, "What the heck?!" I of course did say yes, and I haven't regretted that answer once!

This morning I read an article that was posted on a friend of a friend's Facebook wall that talked about the most overlooked characteristic in who you want to marry.  (http://www.familyshare.com/marriage/the-most-overlooked-characteristic-of-who-you-want-to-marry)  This most overlooked characteristic is "can I suffer with this person?"  When I said yes as Tim asked me to be his wife, I can honestly say that I wasn't thinking about the whole in sickness and in health thing.  I knew I loved this man, he had a sparkly ring to put on my finger, and I knew I wanted to spend my life with him.  I knew he was a man that loved me for me, that would always take care of me, and that would make me laugh.  But I didn't specifically consider if he was someone I could suffer with.

However, this quality was made clear to us just a few months later.  We had been married two weeks when we ended up in the hospital, in preterm labor with Brady.  We had been married less than three weeks when we gave birth and had to say goodbye to our firstborn son.  Later that year, after still less than a year of marriage, we saw the cancer take over my mom's body, and held her hand as she gained her wings.  And another year later, we held each other tight as we said goodbye to our second son who had brought nothing but love and joy to our lives.

Thank goodness that I married someone that I could suffer with.  Tim has never turned inside himself, left me to my own grieving, abandoned me to deal with his own grief.  The experiences we have had in less than three years of marriage are more than some couples deal with in a lifetime.  These experiences very easily could have torn us apart...we could have turned away from each other...blamed each other...but instead we came together, and have become an even stronger couple.  Although I would never wish these experiences on anyone, in some ways I have to be thankful...thankful that I have Tim by my side, and thankful that he has been there for me every step of the way.  Even in the depths of his grief, he finds ways to make me smile, and hopefully I do the same for him.  Knowing we can suffer together makes remembering happy memories like these, and looking forward to more happy times even more sweet.

Henry's Angelversary

The anniversary of Henry's death, or his angelversary as we have decided to call it, has of course been weighing heavily on my mind as we've entered November. I've been dreading this month and all the memories that it holds.

But this morning, as I was drying my hair, I had an epiphany. Why don't we (A Monster's Mission) do something to pay forward Henry's legacy of love and joy? Why don't we use his legacy to make someone's life just a little bit better? Why don't we bring something positive to a month with so much sadness?

I already have a couple ideas, but am reaching out to our followers. Do you know of anyone who could use a little extra joy this month? Do you know of an organization that could use a little extra support this month? I'm not looking for volunteering time, simply because I'm not entirely emotionally stable. But is there something we could do behind the scenes to help someone else?  Like I said, I've got some ideas rattling around in that crazy head of mine, but if anyone else has ideas or suggestions we'd love to hear them.  Feel free to comment, or if you'd prefer you can message us with your ideas.  Thanks in advance for helping us to brighten this difficult month just a bit!

November

One year ago, Henry had a busy weekend.  He spent Friday visiting both of his grandparents at work and showing off his monster costume.  Then he stole the show as the ring bearer in his Uncle Will's wedding.  Throughout the weekend, he brought smiles to many faces, and only got cranky as the wedding party rolled on.  And even then, he continued to party for a bit...dancing with Daddy...until he finally let us know he had done enough.  But once we got him in the car, he fell asleep and he was happy!

It's so crazy to look back, and realize that by this point Henry was already in a fight for his life.  When he was diagnosed, the doctors said he probably had only had the leukemia for 2-4 weeks.  So by this time last year, the leukemia was already taking hold.  And we had absolutely no idea.  We thought our sweet boy was fighting a cold, or maybe a virus he had gotten from daycare or that mama brought home from school.  It never entered our minds that it might be something so much bigger.  Even as he started to get really sick, the worst scenario we came up with was pneumonia.

I think this explains why I'm so emotional lately.  This anniversary month will always be a tough one, and especially so this year.  Most of the year, it's the happy memories that float through my mind and my heart.  But this month, I start remembering the sickness, the fear, the sadness.  Yet, even though these sad memories, Henry's love and strength shines through.  He was fighting a disease that was eating away at his insides, and he continued to smile, and bring smiles to others.  And that is what I turn to when the sadness creeps in.

I miss this monster every second of every day, and I am forever grateful that we never took our time with him for granted.  We took Halloween off to show Henry off to the grandparents, both of us took sick days to stay home and snuggle him when he wasn't feeling well.  I left school every day excited to pick Henry up from Carrie's.  We planned outings around Henry's schedule, and enjoyed being together as a family.  I wish we had gotten more time, had been able to make more memories, but I am thankful for the memories we have and the love that continues to fill my heart.