Don't Judge a Book By Its Cover

We all know the old saying...don't judge a book by its cover. And we all know what it means. The cover of a book gives us some information about the book, but it's what is inside that really counts. And, of course, this isn't just talking about books. We all do it...we judge people based on what we see. We judge the lady at Wal Mart in her pajamas. We judge the mom at the grocery store yelling at her kids. We judge our students for not getting their homework done. It's easy to do. But we don't take the time to think about what might be going on inside...we don't ask why.

Grief is a very "inside" process. It's easy to judge the outside...oh, she's smiling...she's living her life...she must be "back to normal" or "okay." I'm lucky...it's rare that I feel judged based on how I'm grieving. Occasionally, though, it does happen. It's usually not intentional, and it often comes from a place of caring, but it hurts nonetheless.

I make deliberate decisions daily...from deciding to get out of bed to deciding to choose one positive thing each day to record in my gratitude journal. Every morning at school, I greet the kiddos coming in for breakfast and walking club. I greet them with a smile and a hello. Some days the smile is forced, some days the smile is genuine. Regardless, I choose each day to put that smile on my face and start my day. I interact with students and staff, probably seeming as though I am okay. This "okayness" is much less of an act than it was when I first returned to work after Henry died. Some days I truly do feel "okay," but there are others where I am still putting on an act...pretending that everything is okay.

I am thankful that I have the energy to smile...whether it's genuine or forced. I am thankful that I can get myself out of bed every day and function appropriately at work and (for the most part) at home. I am thankful that this journey has led me to a more positive mindset and to find the good in each day. My plea, though, as a grieving parent, is this: please don't judge my grief. Please don't expect me to always be happy or for my smile to always be genuine. Beneath my "okay" appearance, I am still hurting. Especially now, as we are moving into the time of year when Henry started getting sick, I am dealing with a lot of feelings and emotions.  I don't take the support we've received for granted. I appreciate each and every one of you who follows our blog, sends us messages or comments on our posts, thinks about us and prays for us. Thank you for the grace you've given us to grieve as we need, and for allowing us to share this journey with you.

Don't take time for granted

Today, I finally got the nerve to attempt to make my mom's pasty (pronounced like past-y...it's a short a) recipe for dinner. It's a recipe for a Welsh meat pie, one that her dad made for her, and she made for us. As I grew older, I always wanted to learn how to make them, but I never took the time to do that with my mom. So instead of going through the steps with Mom by my side, I had to attempt to figure out the recipe on my own. And it's one of those recipes that isn't necessarily the most clear...there are some places where you have to infer what comes next. Even when I was younger and Mom made pasties, I never hung out in the kitchen with her...instead I made myself scarce! So today was definitely a blind attempt on my part...

This was just another reminder to never take time for granted. Before Mom got sick, I didn't feel the urgent need to learn the art of making a pasty from her...it was just something I wanted to do "sometime." Once she got sick, she no longer had the energy to spend a couple hours in the kitchen, putting dinner together. Even on her good days, she tired easily and was much more comfortable sitting in the sun room chatting than working in the kitchen.

As Mom got sick, I did spend more time talking to her...about how it felt when I was first born...being a new mother. I asked her to share more memories from her childhood...her teenage years and her college years...and stories about when she and Dad first met. When I got pregnant with Henry, and she started getting sicker, I remember finally feeling that feeling of urgency...wanting to know all I could about Mom before I could no longer simply ask her.

It's thanks to Mom, and to Brady, that we didn't take time with Henry for granted. I certainly didn't do this because I feared his life would be cut so short. I simply did it because I knew how precious time is. Even if Henry hadn't gotten sick and passed away, he still wouldn't be the tiny baby he was when he was born, or the infant just learning to eat solid foods. Now he would be a young toddler, crawling and walking, and getting into all kinds of things. So I cherished each moment because I knew that those moments would be gone all too soon.

It's why now, I try not to take time with Tim for granted. I don't expect that he's going anywhere anytime soon, but we will never have this day, this moment, again. I don't make enough time for our family even now. It's something I have tried to improve, but an area where I know I can still make more time. However, I do still try to enjoy the moments we DO have together, even if they aren't frequent enough. Time is one of those things we can't make more of...we can't add hours to the day. It's something we'll never have enough of, no matter how hard we try. All we can do, then, is appreciate the time we do have, and make the most of each moment.

Things I Miss Most...

You might expect that the things I miss most are the giggles...the snuggles...the smiles...the hugs.  And I certainly do miss those things.  But there are some things I miss even more, as these days stretch on.

I miss being nauseous, and having no appetite.  I miss the total exhaustion of the first trimester.  It meant that I was pregnant, and that my baby was in there and growing.

I miss being on bedrest, worrying about every little twitch and pain.  I miss the restlessness and the loneliness of being stuck in the house all day, with my main social interaction with my husband and my doctors.  It meant that my baby was developing and safe.

I miss being exhausted in the morning after being up with Henry throughout the night.  I miss being able to soothe him, and rock him back to sleep.  I miss the satisfaction of gently laying him back in his crib, and watching him rustle and get comfortable, without waking up.  It meant I could soothe my baby.

I miss my house being dirty, because I was busy taking care of an infant.  I  miss sitting with Henry on the couch, seeing the layer of dust on the coffee table, and not even caring too much about it.  It meant I had someone else to take care of.

I miss having to change after already getting dressed for the day because Henry spit up on me.  I miss cleaning spit-up out of the car seat and the car upholstery.  It meant that my baby was eating and growing.

I miss losing sleep, trying to doze in a hospital recliner, to the sound of beeps and nurse's footsteps.  I miss the anxiety of wondering what each new day would bring.  It meant my child was still fighting.

We complain about so many day-to-day things...cleaning, making dinner, paying bills, running errands.  I am guilty of this too.  We take for granted the fact that we are alive...that cleaning means we have a house to live in, making dinner means we have enough money to eat, paying bills means that we have a job that covers those expenses (most of the time), and running errands means we have a life to live.  I didn't take a second of Henry's life for granted.  I honestly appreciated the middle-of-the-night snuggles, the spit up, the dirty house, even the hospital stay.  All of that meant that I was a mom, and that my main job in life was to take care of Henry.  I miss all of that.  As I continue to struggle with that hole in my life, I am working on enjoying the day-to-day things that I typically complain about or take for granted.  Things can ALWAYS be worse, and I don't want to meet my maker wishing I had appreciated and enjoyed my life more.  When I once again hold Henry in my arms, I want to know that I made the most of my life, whatever my life may bring.

One year ago

One year ago, daycare was closed so Tim took the day off to hang out with Henry. Honestly, it was hard for me to let Tim have the day...I wanted an extra day to play! But they did visit me for lunch. And all the playing they did wiped Henry out! In the afternoon, Tim had been playing with Henry on the floor, and he just fell asleep right there.

Henry and I are lucky to have Tim. He is a devoted husband...wanting nothing more than for me to be happy. He willingly will sacrifice his wants and needs to take care of mine. He took care of me for months of bedrest without a single complaint. And once Henry got here, he was a loving and devoted Daddy. He did feedings, baths, diapers. He could make Henry smile in a way no one else could. And Henry's giggles were usually a direct result of his daddy's silliness.

So today, although I miss Henry terribly, I am so very thankful that I have Tim. He and I have become a strong team, leaning on each other to get through the hard times and together celebrating the good times. And we both look forward to the day when we once again have a little one so tuckered out from playing that he or she simply falls asleep on the floor.

Childhood Cancer Community

Growing up, there are always groups you want to be part of...clubs you want to join, cliques you wish you would be invited into, teams you hope to make. One group I never imagined I'd be part of is the community that is childhood cancer. Yet it is one of the most welcoming, loving and understanding groups of people I have known.

We have not been part of this community long...yet we are greeted and welcomed at every event we attend. We get hugs from people who are strangers, yet these strangers understand us in a way even those closest to us can't. Nurses and doctors we met just briefly hug us and catch up as though we are long lost friends. There is no discrimination between fighter families and angel families...we have all been changed by the same disease.

This is not a group I would ever wish anyone to join. Yet I am eternally grateful for the love and support we have received, and I hope our love and support has been felt in return. To all the families we have gotten to meet, whether in person or via the Internet, thank you. Thank you for fighting for these kids...all of these kids. Thank you for welcoming us as one of your own. Thank you for being there as we, and all of us, navigate the unimaginable.

Frame of mind

I started a post...a post that was very negative, about how I'm feeling cheated out of raising my boys. And although there was nothing untrue about that post, I wasn't feeling good about writing it. I am free to feel my emotions, and I did allow myself this anger and frustration over the weekend. And I will continue to feel all the feelings. But as I was looking at pictures to share, I came across these. And I realized that no matter how angry or cheated I may feel, none of the negative feelings even come close to the love and joy I feel as I see these pictures.

Henry brought love and joy to me, and to all that met him. His sweet face and smile could brighten the darkest day, and continues to do so even in his absence! As I said yesterday at the brick dedication...Henry was just as happy when he was swimming in the ocean as he was riding in a cart at Wal Mart. He saw the good in the world, he felt the love we all had for him, and he was happy. And his happiness changed me. His happiness made me a happier, more positive person even through my immense sadness and grief.

So that is why I changed my post. Not because I think I should always be happy, and not because I won't allow myself to be angry. Today, I changed my post because Henry's smile changed my heart...I changed my post because today it feels more right to honor Henry's legacy of love and laughter...I changed my post because I want Henry to see that he still can make me smile. 

Many emotions!

It has been a busy and emotional weekend! Yesterday, we were one of over 50 families honored at Sammy Superheroes' Glow Gold event in Columbus, Nebraska. It was humbling to see all of the yellow shirts throughout the event...the large number of parents, kids and siblings affected by childhood cancer. Some of these families were still fighting, others, like us, were families of angels. Regardless, cancer has touched all of our lives.

Today, Tim and I attended The Compassionate Friends Omaha chapter annual brick dedication. This took place at the Angel of Hope memorial at Boys Town. We had a brick made for each of the boys. As a family with a new brick, we had the opportunity to share a little bit of our story with the other families, all of whom have been touched by the loss of a child. It was a beautiful ceremony, in which we all could say the name of our child(ren) we are missing.

Even though we were honored to be a a part of both of these events, I have felt more angry this weekend than I have lately. I almost feel as though I skipped the anger stage earlier, and am now coming back to it...with a vengeance. I love seeing, saying, and hearing my boys' names...but I am angry that I see their names on grave markers, memorial bricks, and angel signs. I am grateful to have the opportunity to honor and remember our boys, but I would so much rather be busy raising them.  However this anger, and the accompanying sadness, makes me ever grateful to have support from both the families affected by childhood cancer and The Compassionate Friends support group.

Some Days

Lately, most days are okay.  I can get out of bed (although I still never really want to, but that's more because I'm just not a morning person.)  I get to work and feel like I'm doing a little more than just going through the motions.  I can make plans with friends (though I still get a little cranky if I make too many plans).  I look forward to spending time with my family.  I have the gumption to actually make dinner most nights.  Overall, I'm doing pretty well...most days.

Then there are days like today.  Days when I'd really rather just call in sick to work so I can stay home in my pjs, lounge on the couch, and snuggle my dogs.  Days when Henry's absence is for some reason so much more noticeable, and so much more painful.  Days when the loss seems more like it happened yesterday and not going on a year ago.

I know there will always, for the rest of my life, be days like today.  There will be times when Henry's memory is sharp and painful, rather than sweet and joyful.  There will be times when I want to hide in bed all day and not talk to anyone.  That's the thing with grief...it's a journey that never quite ends.  It gets more bearable, easier even, but never disappears.  I am thankful that most days are getting easier.  I am thankful that most days memories are sweet and not so painful.  I am thankful that I had Henry, and that I got to be with him for seven months to make memories that I can carry with me today and every day.  As much as I hate the pain, I wouldn't for a second trade it for not ever having Henry at all.  And I am beyond thankful for technology for allowing me to have so many visual memories like this one!

Pieces of Cheese

I'm starting to feel a bit restless and aimless lately. I am missing a "piece of cheese." Tim and I refer to events or goals we are working toward as our pieces of cheese. After Henry died we had a few...Henry's birthday, vacation, blood drive, Cure Search Walk... But lately I feel as though I'm missing that drive, that motivation to do things. I am a person that needs to have goals...needs to have something to work for. Otherwise I tend to become (even more) lazy.

When we had Henry, he was my entire piece of cheese.  (Okay...I realize that sounds a little odd.  Bear with me!)  My photography projects revolved around pictures of Henry, my goals were all Henry-related...working on tummy time and rolling over, starting solid foods, keeping up with the baby book (which still isn't actually finished), visiting people and places.  This worked well, except that when Henry died, I was left feeling rather lost.  That's why, regardless of if and when we become pregnant again, I feel like I need at least one piece of cheese just for me.

Often, I use an event as a piece of cheese...a 5K run or a long bike ride. I hesitate to do that now for a couple reasons. First, winter is approaching, and I am a wimp when it comes to cold weather! Plus active events are harder to find during the fall and winter. And, if I were to get pregnant, with my history I avoid too much physical activity. So for now, an active event is not quite what I'm looking for.

Tim and I talked this morning, and I think we came up with a couple ideas. One is to start compiling my blog writings into a possible future book. I have over 100 pages of writing, so this could be a good project! Then I may also look into some photography projects. Something to get my creative juices flowing again. These are both projects for me, which is just what I think I need right now.  I don't need anything huge, just something that will get me going...feeling like I'm still moving forward rather than stuck where I am. 

Flashbacks

I have a feeling that the season of flashbacks are upon me. This morning, this picture and others of Henry not feeling well showed up from a year ago. According to the doctors, he would not have been sick with leukemia yet...he only had that for 2-4 weeks before he was diagnosed. So chances are this was one of those little bugs Henry caught at daycare, or one that I brought home from school. If I remember, it only lasted a day or so and he was back to his happy self. But this was our first time with a sick baby.

More of these memories will follow. It took a couple of months of these stubborn cold-like symptoms that finally brought us to the hospital. And even a cold is bad enough...no one likes to see their baby not feeling well! We were so lucky that Henry was generally healthy until near the end. And even when sick he would still smile, and snuggle of course. In fact, it was his missing smile that was one of the clues that something was really wrong.

As I enter these months leading up to Henry's "angelversary," I will face the flashbacks, but I will also remember the happy memories...the smiles and giggles, the hugs and snuggles. For although Henry died due to his cancer, his cancer was not who he was. And I will always remember Henry as the happy baby that brought love and joy to our lives.

Go Big Red!

Henry really didn't have a choice...he was a born Husker fan. Tim never really followed college football until he met me, and of course I converted him into a Hisker fan! So poor Henry had no say. I suppose had he grown up and gone to another college, I may have let it slide...but until then, Huskers it was.

But then again, he was a pretty darn sweet Husker fan! He was always happy to "watch" football, since it meant quiet time with mom and dad. I'm sure Henry and Nana are teaching Brady all there is to know about Husker football (such as when Grandpa gets cranky with the team it's time to go watch the game in another room...) 😉 To all of our followers who are Nebraska fans...this one's for you. GO BIG RED!!

Awareness

It's only a few days into September and I'm already blown away by the support for childhood cancer I've seen as I scroll through my Facebook feed. It warms my heart to know that there are so many people that care about these warriors and their families.  At the same time, it breaks my heart a little. It breaks my heart that there are kids that have to face the big "C" word. It breaks my heart that parents have to hear those fateful words...that they have to watch as their child fights for his or her life. It breaks my heart that siblings have to watch their brother or sister be sick, unable to play and be a kid. It breaks my heart that friends don't get to see their friend at school every day, and teachers send assignments to their student in the hospital. And most of all, it breaks my heart that sometimes we lose these children...these sons and daughters...these brothers and sisters...these friends and students.

I wish it didn't take such tragic events to make us aware. I wish I had cared about raising awareness for children's cancer before I lost Henry to this terrible disease. I wish I could have lent support to families and fighters without having had to suffer my own loss. But at the same time, I would not have felt so passionately about the cause had I not lost Henry. I can never say I'm glad Henry died, but I can appreciate what his death has taught me. And in this case, I appreciate that his death brought the importance of this fight to my attention...and into my heart. No child deserves this, no family deserves this, and that is why I will fight...in my own quiet way.

Be someone's hero

It's September! It is a month to raise awareness and funds for childhood cancer. We have some events coming up, and an idea for raising some money for cancer research. But for today, I want to raise a different kind of awareness.

Henry was a happy soul. His smile brought smiles to so many. He was laid back, content, and up for anything. He was happy to stay home and snuggle, wander Target (our go-to spot to get out of the house), play in the pumpkins at Vala's, or "swim" in the Gulf of Mexico. So today I challenge you to carry out a bit of Henry's legacy. Sometime this week, smile at a stranger, hold the door open for someone behind you, make an appointment to donate blood. If you're in the drive through, pay for the coffee the person behind you ordered. Leave a note for a coworker letting them know you appreciate them. Wash the dishes for your wife (or husband) or mow the yard for your husband (or wife.) Give an extra hug or kiss to your child, or to your mom or dad.

Even little things such as these can make a big difference in someone's day. So this week, I challenge you to make a difference...not by spending money or large amounts of time, but simply by doing something simple. Honor those around you, and do it to honor all those who are fighting big battles we don't even know about. As Henry is saying...be someone's hero!