New Year's

New Year's has never been one of my favorite holidays.  For one thing, there seems to be an expectation to do something crazy and wild to bring in the new year.  As a child, this meant sleepovers at home with friends, and as I got older it usually meant I should be out drinking and partying.  Usually, however, I ended up at home, in my pajamas, and often asleep before midnight even hit.  For another thing, the start of a new year seems the perfect opportunity to lament over everything you DIDN'T do in the year that is now ending.  I didn't keep to that diet I started, my exercise program lasted just a few weeks, I didn't read as many books as I planned...and so on and so forth.  Also, New Year's is a reminder that the holiday season is over, and that the long stretch of school (as a kid or now as a teacher) is upon us.  For these reasons, I've never been a big fan of New Year's, and most years I even dreaded New Year's Eve and Day.


This year something feels different.  I'm not dreading this holiday.  Perhaps it's because I have a husband who is more than happy to stay in and watch news bloopers on YouTube while snuggling with the puppies.  Maybe it's because I can look back and see how much I've grown and changed over the past year.  Possibly it's because I feel that good things are coming for us in 2016.  Maybe because I now can see that a new year is not necessarily for starting over, but it is for continuing what you have started.


In 2015, my goal was to become more positive and grateful.  I don't mean to brag, but I feel that I have very successfully met this goal.  Since January 1, I have kept a gratitude journal in which every day I list one thing I am grateful for.  Some days it was harder than others to find something to record, but every day I found something.  I plan to continue this in 2016.  I had other goals that I did not meet quite so successfully...I wanted to read every day.  For a librarian, I read very little.  But instead of getting down on myself for not doing this, I will make a new and better effort to do so in 2016.  Other goals are a bit more out of my control...making and growing a baby, for example.  But what I learned in 2015 is that I have purpose outside of being a mother.  I can be happy with what I DO have, while continuing to hope for more children.


To celebrate all that 2015 brought us, I created a highlight video.  As I did this, I realized how much we did this year!  From my trips to California and Virginia, to our Cure Search walk and blood drive and childhood cancer awareness events, to time with family and friends, 2015 was a pretty darn good year.  Sure, we continue to struggle with our grief, but in spite of that we managed to live our lives and even enjoy it.  It's nice to go into a new year with a positive attitude and a good feeling.  That is what I wish for all of you as well.  Don't dwell on what you didn't do or what didn't happen, but look at the good that did come your way.  And I hope everyone goes into a happy and successful 2016.

The Business of Death

The death of a loved one is a traumatic, emotional event.  And the emotional aftermath lasts weeks, months, and years.  Unfortunately, death is also a business event.  And apparently, the business aftermath can last weeks, months, and years.

As a loved one is sick or dying, there is business to take care of...time off...medical care...insurance coverage questions...when is it time to stop medical intervention.  Shortly after a loved one dies, there is more business to take care of...funeral plans, burial decisions, obituary wording.  And in the weeks and months that follow, there is the business of paying for all of this...the medical care, the funeral expenses, possibly dealing with life insurance claims and health insurance questions.  And even more than a year later, a bill can unexpectedly show up in your mailbox, for care your loved one received over THIRTEEN months ago.

Unfortunately, hospitals and insurance companies are businesses...they deal with money, not with emotion.  Now, that's not to say that the hospital staff are entirely removed from the emotion of death...the nurses and doctors and staff on the floor are just as human as we are.  But once you get into the business of hospital, it's just that...business.  And so from the business side, I shouldn't be surprised by a bill over a year after Henry's death.

But I'm not a business...I'm an emotional human...a still-grieving mother...and that bill is just another reminder of all the horrors my baby endured.  I understand that the hospital did not send us this bill as the kick in the gut it felt like, and I know there were hundreds of thousands of dollars worth of medical care to sort out between the hospital and insurance company.  I understand the business side of death and dying.  But that doesn't protect my emotional side from the impact.

Merry Christmas from A Monster's Mission

Wishing everyone a Merry Christmas from A Monster's Mission and the Seretta family. We are grateful for the love and support we receive today and every day. We hope everyone can find something, no matter how big or small, that makes them smile today. Happy holidays!

Christmas

Christmas for me has changed over the years.  When I was a little kid, Christmas was searching for the perfect Christmas tree and carefully putting our treasured ornaments on it before the underneath filled with presents.  Christmas was spending Christmas Eve at Grandma's with Jack, Patti, Chris and Leslie...the adults teasing (or sometimes not!) about looking at lights before opening presents.  Christmas was waking up early with Jamie on Christmas morning...stockings...trying to get Mom and Dad out of bed to open presents.  Christmas was egg casserole and other goodies for brunch.

As I got older, Christmas was time I got at home...a break from college and studying...time to hang out with my family.  Christmas was still (until just a few years ago) waking up early on Christmas morning with Jamie...stockings...and trying to get Mom and Dad AND Trent out of bed to open presents.  As we moved out of college and into adulting, Christmas became the sacred time of year when the whole family got to be together.  And as I got engaged, married, and pregnant, Christmas was a time of dreaming up traditions to start with our own kids.

To be honest, Christmas this year is hard.  It's even harder than it was last year, for me at least.  Last year, I was in a fog...numb almost...and I ignored everything Christmas.  So in a way, this year is my first Christmas without Henry.  And it's another Christmas without Brady and my mom.  I wish we had a tiny toddler running around...that we had to place the Christmas tree and its ornaments strategically not because of the dogs, but because of the kid!  I wish we visited Santa after Santa, trying to get that perfect picture.  I wish we had a Christmas card mailed out...filled with pictures of our happy family.  I wish we had to pack up half the house to travel to grandparents' houses for Christmas celebrations.  I wish Tim and I were shopping for presents, and trying to decide what the perfect "Santa" present would be.

I've done the things all the articles suggest...I've taken care of me...I've given myself a "five-minute" rule where I can decide even five minutes before an event if I will attend or not - and my friends and family have been so graciously accepting of this...I've done things to honor the boys - put up their ornaments, and we'll get something to leave for them on their graves...  But it's still hard.  It's hard seeing families visiting Santa...it's hard seeing all of the elf pictures...it's hard seeing complete, happy families.

Yet I still have so much to be thankful for.  I got to spend several days in Firth with my family all together.  Jamie and I found treasures, shared laughs and memories.  We found a new game that we all enjoyed.  Dad cooked hearty and tasty meals that we enjoyed together.  We had our morning coffee in the sunroom.  And the family time isn't over!  Tomorrow night we will gather with Tim's family, along with the Stowe's, where there will no doubt be some amazing food, but even more importantly some time we can all be together and just enjoy each others' company.  And on Christmas, Tim and I will get some "date" time at a movie, we'll visit the boys, and we'll have some more quality time with his family complete with his mom's traditional Christmas lasagna (that tastes amazing and weighs about 80 pounds!!)  We might play some games...games where we can be hilariously inappropriate and just have fun and laugh. 

So it's true...Christmas this year isn't what I would have dreamed of a few years ago...but it isn't all bad.  And, in the spirit of Christmas wishes, we can still hope and wish that next Christmas we will have that tiny little elf to fuss over, play with, and love.  After all, what is Christmas without a little childlike spirit of innocent belief and hope??

Cherish

I've spent the start of my break in Firth with my family.  Jamie and I have kept busy today by going through some of the things that Mom had stashed away.  We found many treasures...we found the dress that Mom wore to my wedding, and it fit me...we found my FAVORITE childhood book...Little Boy with a Drum (rat-a-tat-rat-a-tat rum-a-tum-tum)...we found the book The Wonderful Way that Babies Are Made, which I remember reading the small print meant for parents and thinking we were so sneaky...we found a trunk full of baby clothes that we must have worn when we were tiny......we found a Gators sweatsuit which must have been a hand-me-down from our Florida cousins...we found our Cabbage Patch Kids dolls...we found a copy of Love You Forever, which Mom had left a special note in.  Of course, we also found a lot of things that can be sent to garage sales, Goodwill, or the trash can.

However, we also found some things that seem to have had sentimental value, or family history, but we don't know the stories.  We found some tiny (real) silverware...baby spoons and such...some silver serving dishes...a couple of sets of china...even the sets of real silverware that Mom had told me about, and told me which set went to which one of us, and I can't even remember those details!  It's another reminder to take the time to ask for the stories...find out what the family heirlooms are and what makes them so special...  Especially this time of year, when we spend time with family and friends, take the time to BE present and cherish that time together.  You never know when a day will come that you'll wish you had asked this, or done that.

I am thankful for the time I've had with my sister today, sharing memories, laughs, and time together. I'm looking forward to a bit more time with my family, and then some time with Tim and his family a little later in the week.  We are surrounded by family that loves and supports us unconditionally, and for that I am forever grateful!

Fear

According to my ever faithful Timehop...two years ago was my first full day on bedrest.  I remember the emotions of the day before vividly.  It was supposed to be just my normal weekly check and shot, and Tim was busy at work so I went by myself.  Everything had been looking great the week before, so we weren't worried.  Once the doctor came in, he looked at the ultrasound and told me I wouldn't be going to work anymore.  After that, I think I was in shock.  I nodded along with all of the things that he told me, but my mind was blank.  It felt like a bad dream...about the same time in the pregnancy we had lost Brady, and now my body was showing signs of doing the same thing.  I took my doctor's letter (that I knew I'd need for HR), and got into my car to drive home.  I was shaking, anxious, scared, sad...all of the feelings I didn't have walking in that day.  I took care of business...calling Tim, and my secretary and principal, but the rest of that night is a blur.  I was terrified that something was going to happen to Henry, and I wasn't sure I could handle that.

Fear is a funny thing.  It changes shape, and at times can fade away, but I don't think it ever really disappears.  Our fears change tremendously throughout our lives.  When I was younger, I remember a span of time that I was terrified to get into the car because I was sure we'd be in an accident (and I have NO idea where that fear came from, but I remember it!)  Then there was another period of time I refused to walk by my window at night because some creature might reach in and grab me.  As I went through high school I started worrying about college, afraid I wouldn't be able to afford it.  And then in college, being afraid I'd never actually finish (which I did...after six and a half years...)  Then, of course, the fears of finding a job...one that you like and that pays the bills.  And I remember being afraid I'd never find someone that I could spend this crazy life with.

I now know that I can make it through tough times...even losing another child.  Yet I still have fears...everyone does.  I'm afraid of trying to find my purpose in my current life, as a childless mother.   I'm afraid of not getting pregnant...and how I will continue to deal with that if it takes months and months...or more.  I'm also afraid of GETTING pregnant, and then trying to get a baby to term before he or she is born.  I'm afraid of losing the people I love...I'm afraid I don't make enough time for these people while we have it.  But I try not to live in fear.  I try to keep these fears at bay, and to do that I focus on what I DO have, and what I am grateful for.  It doesn't make the fear disappear, but it makes it manageable, bearable.  As we move into Christmas and New Year's, I will continue to try to focus on the good...hope for the dreams we have to come true (sooner perhaps rather than later)...and ENJOY the time we have with the people we love.

A Not-So-Beautiful Mess

I think perhaps I'm struggling...  Last night, I got irrationally angry with Tim because he was a few minutes later leaving the gym than I thought he would be.  I didn't just get irritated...I was angry, almost furious.  And even though in my head I knew that I was being ridiculous and irrational, I just couldn't quite get myself together.  Then this morning I woke up, still feeling a little cranky from my (irrational) anger last night, and I ended up full-out sobbing because I didn't like how my hair ended up.  That's right...I was sobbing because of a perceived bad-hair day...because I couldn't get my headband to sit nicely in my hair, even though it looked absolutely fine.  Again, in my head I knew I was being ridiculous, but there was nothing I could do to stop the frustration.

I'm pretty sure all of this emotion is from pent-up emotion...anger...sadness...grief.  In fact, I know that's what it is.  I thought I had been doing pretty well.  We made it through November, including Henry's angelversary and Thanksgiving.  We had the energy and spirit to put up a small tree, to hang stockings, and to set out a few other decorations.  I found myself listening to Christmas music in the car as I drive around.  I've made it to the last week of work before a two-week break (which of course will go way too fast.)  Unfortunately, all of that is just on the surface.  On the surface, I'm doing pretty well.  But underneath that smooth surface, I'm a mess.  I see pictures of kids with Santa, and my stomach drops.  I hear about everyone's happy holiday celebration plans, and inside I scowl.  I've been searching all over town (as has my sister in her respective area) for red and green gumdrops like my mom always had at Christmas, and I get angrier with each store that doesn't have them.  I think about our upcoming holiday plans, and I get an anxious pit in my stomach.  I've avoided one holiday celebration already, and I feel guilty.  Last Christmas, we avoided everything holiday related.  This year, I'm trying, but I'm afraid at some point (like last night and this morning) I'm just going to lose it.

I've never been one to wear my emotions on my sleeve.  Even when Henry was in the hospital, we would get tough news, and I would wait until I was in the bathroom by myself to cry...even though it was absolutely appropriate for me to cry, and knowing that no one would judge me for my emotions.  Now the problem is I don't know how to let these emotions out...until they build up to a point where I have no choice.  Unfortunately, Tim usually bears the brunt of this build up.  So if you see me or ask how I'm doing, and I suddenly burst into tears, don't be alarmed.  Or if I get angry over something trivial, know that my anger is not actually at that trivial thing.  And if you see Tim, give him a big hug and a smile, knowing he puts up with all of my crazy mood swings with nothing but love and a smile. 

(And pardon the crazy get-up...it's spirit week at school...)

Worldwide Candle Lighting

Tonight we lit candles for our boys that left this world all too soon as part of The Compassionate Friends Worldwide Candle Lighting. Around the world, people are lighting candles in memory of their children at 7:00 pm, thus creating a wave of light. This afternoon, we also lit candles with people with whom we have come together to grieve through Compassionate Friends.

One thing that was said at the candle lighting ceremony this afternoon was that we don't remember these children because they died, we remember them because they lived. Our boys, even in their short lives, have had such an impact and given us much to remember. We wish we had gotten more time with them, but we will always remember the time we did have.

To all of our friends and family who are grieving the loss of a child, remember that you are not alone. Share your child with anyone who will listen, tell their story, and keep the light of their life alive in your heart.

Why Me?

My current read is Every Day I Fight by Stuart Scott.  Stuart Scott first caught my attention with this quote, which I believe came from his acceptance speech at the ESPY's..."When you die, it does not mean you lose to cancer.  You beat cancer by how you live, and the manner in which you live.  So live.  Live.  Fight like hell, and when you get too tired to fight, then lay down and rest and let somebody else fight for you."  This hit home for me, as I always hate to think of people like my mom, my friend Jill, or Henry "losing" to cancer.  In this mindset, they all won...they lived their lives, however long or short, they loved, they enjoyed, they put their heart into living.  So I figured I might find some inspiration in his book.

I'm not too far into it...maybe chapter 3 or 4, and I've already found parts that truly speak to me.  This morning, the part that I read talked about asking why me?  This is what Stuart Scott had to say on the matter, "I hadn't allowed myself a single Why me? moment.  Because, if I start asking Why me as it relates to cancer, I'd have to start asking Why me? as it relates to all my good fortune:  Why was I able to do this job I love?  Why was I blessed with Sydni and Taelor and such a great family?  Once you start questioning the bad stuff that comes your way, you have to start questioning the good - and I wouldn't trade the good for anything," (p 25).

Tim and I have had our moments, when we ask Why us?  Why was our honeymoon period a short two weeks?  Why could we not bring Brady home?  Why did we lose my mom?  Why was it so difficult to get Henry here safely, only to lose him short months later?  Why were we "chosen" to carry so much pain and grief?  However, these moments are pretty few and far between.  Perhaps it is because we have so much good fortune that we DON'T want to start questioning.  Why did we find each other and know so quickly that we were meant to be together?  Why did we get to spend months anticipating Brady's arrival...hearing his heartbeat...feeling his movements (for me, at least)?  Why did Tim and my mom connect so quickly?  Why have we both found jobs that we truly enjoy, and colleagues that support us unconditionally?  Why do we have family surrounding us with love and support, requiring nothing in return?  Why have we been blessed with three crazy and lovable fur babies?  Why were we so fortunate to find and buy the perfect house, that we can grow into?  These "why" questions are just as unanswerable as the bad ones.  Sure, we worked hard to get where we are in our careers.  Yes, we both had our share of not as good relationships before finding each other.  Sadly, part of the reason that we got the house we had is thanks to Henry.  But that only gives us a piece of the answer.  The rest of the answer is as unknowable as the answer to any of the Why us? questions.

Does this mean that I never wonder Why us?  Of course not.  It just means that most of the time I would prefer to be grateful for what I have, while still grieving what I have lost.  It keeps me from going completely crazy...it keeps my feet on the ground...and it keeps me moving forward.

Hope

We've all said it, and probably had it said to us...don't get your hopes up.  We say it to our kids, in regards to getting something they want...we say it to ourselves, such as in hoping for a snow day...we say it when we're in a tough situation, worried about what the outcome might be.  I have said it to myself over and over again.  But now I'm starting to wonder...what really is the harm in getting our hopes up?  Isn't hope one of those positive things that can get us through a tough spot?  Will we be less disappointed in not getting something if we hadn't hoped for it in the first place? 

I think back to when we headed to the hospital when I was having contractions with Brady.  We didn't stop and say we'd better not get our hopes up.  Those few days we were in the hospital, all we did was hope...hope that what the doctors and nurses were doing would stop the labor, and that Brady could cook in there at least another week or two, and hopefully more.  When that didn't happen, it hurt...it hurt like hell.  But I don't think it would have hurt any less had we not hoped.  We knew that there was a possibility I would still go into full labor...we knew there was a chance he would be born too young to get to the NICU...we knew even if he made it to 24 weeks and was born he'd face an uphill battle.  But we kept hoping anyway.

When my mom was diagnosed with cancer, we hoped.  We hoped the surgery would take care of it...we hoped that the treatments would take care of it.  When I got put on bedrest with Henry, we hoped.  We hoped we would make it past 24 weeks, then past 28 weeks, then into the thirties, and maybe even to 36 weeks.  Sure, we knew that we could lose him like we did Brady, but we kept hoping.  And when Henry was diagnosed with cancer, we hoped.  We hoped that the treatments would take care of the cancer, and that the dialysis and medicines would help get the fluids down so he could start coming off some of the paralytics and breathe on his own.  We hoped that the ECMO would give his body the rest it needed so that he could continue his fight.  Even that night, when we knew we were probably facing the worst, we kept hoping.  In all of these situations (except bedrest, of course), the outcome was unimaginably painful.  But I still believe that having hope didn't make this outcome any more painful.  It just made the journey to that outcome a bit more bearable.

Even now, we hope to get pregnant, we hope to become parents again.  That doesn't make it more painful each month when we find out we're not...it makes the whole month more bearable.  What is life, anyway, without hopes and dreams?  That's what we work for, what motivates us, what keeps us going.  So, despite all that we've been through, we continue to hope.  And although I may still say to myself at times...don't get your hopes up...I don't think I quite mean it anymore.

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.

Stress

For all of us, stress is a part of life.  We have stress in doing our jobs every day, paying bills each month, keeping our households running, trying to make enough time for all we need and want to do.  I myself have often found myself stressed.  I get stressed when my to-do list gets to long, my email inbox seems overflowing, I have too many events on my calendar.  I get stressed over silly things...like trying to get my laundry done or making a weekly meal plan.  This normal, everyday stress has never caused big issues in my life.  I've been able to cope...move things to the next week's to do list...ask Tim to help do things around the house...divide large tasks at work into manageable pieces.

Now, however, I am dealing with a completely new type of stress...the stress that comes along with grief.  This stress is there, but yet it is hidden.  And it's manifesting in ways that are not especially healthy for me.  We already know that stress is not helpful when trying to conceive...and my visit to the dentist yesterday revealed that stress is causing issues with my teeth and gums (seeing as that's all that has really changed since my last regular visit earlier this year.)  Stress is also likely the cause of my constant exhaustion despite getting plenty of sleep.  The physical stress response in my body causes me to use up energy that I don't even have.

This new stress, and realization of the effect it is having on me, has caused even more stress.  Now I'm worried about taming and controlling this stress response to grief.  I don't want my teeth to fall out.  I want to get pregnant.  I don't want to feel constantly exhausted.  Being less stressed would help in all of these areas.  Yet I already do so many things...I see a therapist weekly, I take antidepressants daily, I say no to doing things when I feel overwhelmed, I journal and write regularly, I listen to music, I eat relatively well...  I suppose really the only thing I haven't yet tried, and that I know would probably be helpful, is exercise.  I need to find the motivation to get off the couch...walk the dogs...find a gym that isn't scary...try yoga...  It's so hard, despite knowing the benefits, to find the motivation when I am so tired all...the...time.  But maybe this new worry will be the push I need to get started doing something.  It may not cure my stress issues, but any little bit will help at this point!  So feel free to check on me...ask if I've done any physical exercise lately...and hopefully eventually the answer will usually be yes.  :)

(This picture has absolutely nothing to do with this post, but it's cute and I wanted to share it...maybe it will make someone smile and reduce their stress a bit!)

Strength and Weakness

Sometimes, when I think about all that Henry went through and how sick he must have felt, I feel weak.  When I had a cold...just a cold, no fever, no nausea, just a stuffy head and nose, I complained and acted like I was deathly ill.  Yet Henry, little Henry, had cancer...leukemia...and he smiled and carried on like any normal six-month-old.  Looking back at pictures, I see how sick he was.  At the time, of course, we had no idea.  And why would we have?  No one assumes that their six-month-old who has a bit of a cold or an ear infection is actually battling something much bigger.  To me, Henry is the definition of strength.  He smiled, he played, he snuggled, he loved...even as this vicious awful disease was attacking his body.

The other day, though, I realized that Tim and I do actually have some of Henry's strength.  Henry felt like crap, but he smiled anyway.  And on a daily basis, Tim and I feel like "crap," but we smile and carry on.  We may not have a cancer eating away at our body, but we have a grief eating away at our heart.  And just like Henry fought to beat the cancer, we fight to survive the grief.  And had Henry "beat" the cancer, it would always have still been there.  Every doctor's appointment would have brought anxiety...every sniffle would have us worried.  So it is with grief.  We will never "beat" grief.  But we are learning to live with it...learning to make our way in a world without our boys in it...learning to find happiness with what we do have and what we will have.  That's what I have to remind myself of in those moments when I feel weak...that Henry gave me the strength to go on.

Exhaustion

There have been many times in my life when I have been exhausted. As a young child who wanted to stay up and play...as a middle school student after sleepovers with friends...as a high school student getting home in predawn hours from speech tournaments or marching band competitions (yes, I was a big time nerd in high school...well, and I still am!)...in college pulling nearly all-nighters to get assignments done that I'd procrastinated...as a new teacher trying to get my job figured out...as a newly pregnant mom trying to grow a tiny human...and, of course, as a new mom learning how to take care of that tiny human. Exhaustion is nothing new.

But then there's the exhaustion that comes along with grief. This is different than any other exhaustion I've experienced. It's complete and total exhaustion...complete mental, physical and emotional exhaustion. It's an exhaustion that takes everything I have just to go through the motions. I have to make myself focus on work...when I get home I have to remind myself that I am hungry so it would be beneficial to make something for dinner. It takes energy just to convince myself to get off the couch and get groceries or do laundry. I have been able to do all of these things, but it takes intentional thinking and motivation. It's more than just going through the motions, as I have to first convince myself to go through the motions, and then I actually do it. And it's an exhaustion so complete that I'm wiped out and ready for bed by about 7:00 every evening, though I usually force myself to remain out of bed until at least 8:00.

In some ways, I have to count my blessings. I can't imagine being this exhausted and still trying to parent. I am thankful that I can be selfish and take care of myself in whatever way I need. I am grateful to have a husband that understands, and doesn't push me to do more than I feel able to do. (There have been several instances where we had social plans, and I backed out with nothing more than understanding from Tim.) I am thankful that my schedule has been pretty quiet so that I can be lazy most evenings and weekends. And I'm thankful for my fur babies who are more than happy to keep my lazy butt company! One day we'll once again have different reasons to be exhausted, and I look forward to those days.

Heartbreak

Today marks eleven months since we said goodbye to Henry.  It's been eleven months of putting one foot in front of the other...eleven months of putting on a "happy" face...eleven months of finding the good in the darkness of such tragedy.  It's been eleven months of exhaustion...taking all of our energy just to go through the daily motions, leaving little leftover for things beyond plopping on the couch in front of the TV. 

I feel a bit like a Negative Nellie or a Debbie Downer lately, and it's hard not to get down on myself for that.  I have spent most of the past eleven months trying every day to find something positive, to focus on the good things in my life, and I feel like I have been pretty successful overall.  But now, in this time of year, I'm back to using most of my energy to get myself out of bed and to work, and I'm lacking the energy to find that positive.  I know it's the nature of grief, that the waves come and go, but that doesn't mean that I like it.

Thank you for allowing me to share my feelings...the good and the bad.  It helps tremendously to be able to share, and vent, and feel.  I feel like apologizing for the negative tone lately, but then I know that isn't really necessary.  I know that it is my reality, and that's okay (even if I don't like it.) 

Traditions

We are getting into a time of year when traditions are important.  Every family has some sort of traditions, and most families have holiday traditions.  These traditions may grow and change as families grow and change, but they are important traditions nonetheless.  As soon as Tim and I got together, we started building our traditions.  Again, these traditions have grown and changed even in the few years we've been together.  Once we found out we were expecting Brady, we started dreaming about the traditions we would build not only for us, but for our kids.  When we lost Brady, we lost some of these dreams.

Then Henry came along, and we started dreaming again.  Henry got to be a part of a few traditions during his short time on earth.  He celebrated his first family holiday at Easter, at the tender age of 6 days old.  He celebrated the 4th of July at some of the Ralston festivities.  And, of course, he dressed up as the cutest monster for Halloween.  Henry the monster visited the Fall Festival at Mommy's school, and made appearances at both Grandma's and Grandpa's workplaces.  Henry got to enjoy a couple of other fall traditions at the apple orchard and at Vala's.

Unfortunately, that's where our traditions with Henry (here on earth, at least) ended.  We spent what would have been Henry's first Thanksgiving holiday at his visitation, funeral, and burial.  Henry's first Christmas was spent in a fog of grief, as was his first New Year's.  And we celebrated Henry's first birthday at the cemetery rather than having a party with his family and friends.  When we found out we were expecting, and especially once Henry was here, these were not the traditions we dreamed about.

Now we are starting to start some new traditions.  We visit the boys at the cemetery and read to them.  We painted pumpkins for the boys' graves.  We recognize their birthdays with fresh flowers and balloons at the cemetery.  These aren't the traditions we dreamed about, but these traditions are now our reality.  More importantly, these are traditions that we will carry on when we have more children.  It will be a way to keep Brady's and Henry's memories alive, and to include them in family and holiday celebrations.

Despite these traditions that we are starting, the holidays and this time of year continue to be difficult.  I feel like we are making the best of the reality in which we are living, but that doesn't make it easy.  I have no idea what the holidays will bring this year, and Halloween is just the beginning of that.  Even as our family (hopefully) grows, this will always be a tough time of year.  Yet I still dream about what other traditions we will build...what traditions we will create to honor our boys in Heaven and celebrate the children we will one day have on earth.

Issues

I'm sure it doesn't come as any surprise that I have issues.  To be fair, I've had issues since long before I had and lost babies, before I was married, even before I was an adult.  Sometimes my issues are simple...I'm hungry but I don't know what to eat, or I'm tired but I'm too lazy to move to bed from the couch.  Other times my issues are slightly more complex...moving, deciding whether or not to change jobs, deciding to go back to school.  And then there are times that my issues are completely emotional...sadness, despair, despondency.

Today, and lately, I've definitely been dealing more with the latter set of issues.  The last few weeks have (finally) been relatively quiet.  After a busy summer and an even busier start to the school year, things seem to have settled down.  This should make me very happy.  I'm usually happiest when my calendar is relatively blank...when I can come home from work, put on sweats, cook dinner, and chill in front of the TV.  And I love the blank weekends...a blank slate to fill with football, maybe a beer or two, and then the essentials like grocery shopping and laundry.  But I'm starting to feel a little restless...a little lost with all of this free time.  This is where my issues come in.

I don't want to have a busy schedule, and when I do have commitments I usually don't want to keep them.  But when I'm home, with a glorious day stretching ahead of nothing planned, I start to get restless, stir crazy, and even a little bored.  Even when watching football, my mind starts to wander, and wonder what else I could be doing.  Yet I'm too lazy to actually DO anything.  Do you see the dilemma?  Like everything else, I'm trying to be patient with myself.  I'm trying to convince myself to do things that I have always liked...such as read the mountain of books I've collected.  I'm trying to convince myself to get back into the habit of cooking meals.  And, I'm trying to convince myself (not very successfully) that it wouldn't be a bad idea to clean our house.  But I also know that the upcoming months are going to be rough, and that some days making it to work, or moving from the bed to the couch on a weekend might be about all I can manage.  For now, I'll go back to watching a little football, and maybe read a bit, as I continue to dream of the day when I'll be so busy I will MISS these days of being bored!

Wave of Light

Tonight we participated in the wave of light for pregnancy and infant loss. It was nice to take an extra moment to remember our boys, and honor all those precious babies lost during pregnancy or infancy. However, for us as parents, we don't need a special day for this. We remember our babies every day...every minute...every second. Many times, we (parents who have suffered a loss in pregnancy) may feel uncomfortable talking about these babies. People don't want to think about babies dying before they even take their first breath. But we want to talk about these babies...we want to share their story, the hopes and dreams we had. We want to talk about how perfect they were...how tiny but perfectly formed. And once you experience such a loss, you realize how many others in your circle of friends, family, coworkers, acquaintances have also experienced a similar loss.

I hope by sharing our story, we are helping to diminish that stigma, that awkwardness. The loss of a child at any stage is traumatic, and being able to talk and share can be very therapeutic and comforting. Let's open our hearts to those parents who have suffered miscarriages, stillbirths, or infant death. And let's remember all of these sweet angels with whom we will one day be reunited.

**If you follow our story and have suffered such a loss, feel free to share your child's name (if you were able to give them one) and your child's story!

Happy Half-Birthday to Henry

This morning, I woke up to a reminder, via Timehop, that today is Henry's half birthday.  One year ago, we were celebrating our sweet six-month-old.  At six months old, Henry was a rolling over pro (at least front to back), NOT a fan of baby cereal or bananas, sleeping through the night (except when he wasn't feeling well), he loved his toys (especially his musical turtle, his football, and of course his Mickey), playing in his exersaucer, on his play mats, and in his jumper, he liked books, lights, television...anything with lights and/or color.  Most of all, at six months old, Henry was a happy, smiley baby who brought joy to all who knew him.  He was happy whether he was snuggling with mom, playing with dad, hanging out at Grandma's, getting his picture taken at Grandpa's, or playing with his friends at Carrie's.


On this day last year, I never could have predicted how I would be spending this half birthday.  Instead of spending it with my 18-month-old, I spent a bit of it visiting my baby at the cemetery.  It was a beautiful afternoon...sunny, about 70 degrees, a light breeze.  I brought Henry's orange beach towel, and his favorite book.  I've never been a big cemetery visitor, so I felt a bit awkward as I spread out the towel and started to talk to the boys.  As I continued my conversation with them, though, it started to feel a bit more natural.  I read Henry's book (The Rattletrap Car...he loved the sounds the rattletrap car makes!) and spent a little time just chatting with both Henry and Brady. 

I enjoyed reading a book to my boys.  It felt natural...it's something I would be doing if they were here, and it's something I can do even though they are gone.  I've decided it's something I will continue to do.  I already have my next book picked out (I Need My Monster...how perfect!)  It will be something I can share with my boys...a way I can still be a mother and feel close to them.  I may not be able to snuggle them as I read, but I can share my love of books and some of my favorites with them.

Happy birthday, my sweet Henry.  I miss you today, and every day, but I know you are in a wonderful place, and that you have your older brother looking out for you.  We love you, monster!

The Love of a Bereaved Mother

I was inspired to write this post by an article I read earlier today on Still Standing (http://stillstandingmag.com/2015/10/bereaved-mothers-love/).  We all know the power of a mother's love...the power that allows us to get out of bed after being up with a fussy baby all night...the power that allows us to send our babies off to daycare, school, college...the power that allows us to hold our babies' hands when they are sick, have to get shots, get a broken bone fixed, an owie stitched up...the power that keeps us from hurting them when they do something wrong...the power that allows us to hand them off to a husband or wife. The power of a mother's (and father's) love is amazing.

But then there's the power of a bereaved mother's (and father's) love. It's a love that keeps burning even when we have nothing physical to love. It's a love that keeps burning despite the pain...the anguish...the tears. It's a love that grows stronger over time...a love that fills a space in our heart that can no longer be filled with hugs and kisses, trials and celebrations. It's a love that makes living worthwhile, even on the days when living seems like more than we can handle.

This was the sentence that stood out the most to me, "Death does not define me – it is life and this love that defines me." Brady's and Henry's deaths changed my life, and divided my life into before and after. But it's not their deaths that define me. Rather it is the love I have for both of them, their births that made me a mother twice over...that is what defines me. It reaffirms my work on finding the positive...I don't need to focus on the fact that my boys died...I can remember the fact that my boys lived.

Strength

I'm here at the Monster Mash Run/Walk and one of the main sponsors is Children's Hospital. They even have a Children's ambulance for kids to walk through. It's a beautiful morning, and a fun event, but it also brings back some pretty awful memories...seeing the look on the pediatrician's face when we brought Henry in that Monday...the flurry of activity to help him breathe while waiting for the ambulance...the sinking feeling of dread as they wheel him out of the office...and then seeing him hooked up to IVs and breathing treatments once I met them at the hospital.

It's a day and time of my life I hope never to repeat. After losing Brady, and even while Henry was in the hospital, I would say I can't handle losing another child. Obviously, that was not a true statement. Now what I say is that I HOPE never to experience something like that again. I know I am strong...I know I probably could handle it...but even thinking of those days when Henry was in the hospital puts a knot in my stomach. 

I know that worry and fear is a normal part of parenting, but my worries and fears are a bit different now. I worry about being able to carry a pregnancy to term. I worry that a sniffle or cough isn't just a sniffle or cough. I worry that I may not appreciate the time I'm given with loved ones enough. What I do know, though, is that when those fears come, we have the strongest support system. We have parents who would drop anything to help us, hold our hand, just be there for us. We have doctors that have been through the worst with us and won't assume our fears are just normal parental worry. We have bosses and coworkers who understand that once pregnant we'll be both excited and terrified. We have followers around the world who will send thoughts and prayers at a moment's notice. And, most importantly, we have the two cutest guardian angels looking out for us. With all that support, how could we feel anything but strong?

All He Knew Was Love

I came across this quote the other day, and it immediately made me think of Henry: "With life as short as a half-taken breath, don't plant anything but love," ~Rumi

I don't believe this quote was talking about short lives, but rather all lives. In the scheme of eternity, our lives here on earth are but the length of a half-taken breath. With such a short time, why waste it on anything but love? Henry just happened to be a lucky one, who truly only did know love. He will never know heartbreak, loss, disappointment, envy, or any of those other icky feelings we would like to avoid!

Thankfully, most of us are not as "lucky" as Henry...we get to experience life, including all the good and the bad. We can't avoid those icky feelings...life brings heartbreak, disappointment, loss, envy...but it also brings joy, happiness, love, accomplishment... We can't choose what life brings but we can choose how we respond.

So help us honor Henry...smile a little more often...love a little deeper...shout a little louder for those accomplishments, big or small! That's what we all should try to do for these short years we have together on earth.