Donna's Story

I know I am late sharing this, and I can't put my finger on why I haven't shared it earlier. There is a wonderful woman and mother that writes for the website chicagonow.com,  Mary Tyler Mom, whose daughter, Donna, underwent 31 months of treatment after being diagnosed with a brain tumor. As September is Childhood Cancer Awareness Month, she's written a new blog entry every day this month. Each entry represents a month of Donna's treatment. I was fortunate to have started following this early on. Though my heart is breaking now as it draws to a close and the inevitable is coming ever nearer, I've found so much strength and inspiration through reading about Donna and her family. October 1st will be the final entry about Donna's struggle with cancer, followed by a post on October 2nd containing resources about how we can help the fight against cancer.

If you are interested in following the story, you can do so beginning here: http://www.chicagonow.com/mary-tyler-mom/2011/08/gold-is-the-new-pink/. I won't lie and say that is hasn't been a heartbreaker, but it's also been a tremendous eye-opener and example of the strength we're capable of as human beings. I can't fathom being able to survive having made half of the difficult decisions this family has had to make.

Russian Roulette

My dear friends on facebook, you've already sampled a tiny bit of the rant that is to follow if you read what I posted about Listeria this morning. If you're Kate, you've seen more than that, even, but you started it so it's your fault. It got me all fired up, and I've come to vent and possibly set some stuff on fire. I am going to focus specifically on the choices women are faced with during pregnancy.

I don't want to assume all pregnant women feel the same way I did, so I'll refer to myself only.

When I was pregnant, I was a sponge. My pregnancy occupied my thoughts constantly. If I wasn't talking about the human being growing inside of me, I wanted to read about it and absorb all of the information. I joined a forum community (to be fair, I'd already been a member since pregnant with Riley, but never really participated) just so I could interact with other women who, like me, were too preoccupied by being pregnant to carry on with their normal lives without frustrating everyone around them.

Pregnancy, for me at least, is this massive thing to come to grips with. Creating life is intimidating, exhausting and demanding. Lifestyle changes have to be made, more for some than for others. Your decisions are no longer only affecting you, they're now being forced upon your future child. When I was pregnant, the idea of my "child" was more abstract, especially before I started showing. I was able to hear a heart beat, and it meant a lot to me, but at that point it was all potential and possibility. I had images in my head. I was envisioning what life would be like someday when I got to meet this little one. As the pregnancy progressed and I felt the movements and eventually saw them, things start to become more real- like a fuzzy picture gradually coming in to focus. Then we knew what gender it was, and assigned a name. This was no longer a "pregnancy", this was our baby. This was Riley, or Zoey. This was our future, this was the rest of our lives growing in there, if we were lucky. This was tiny socks, fists clamped around our fingers, first words, days at the park, first days of school. This was graduation, college, the future president, a cure for cancer.

Having children means your life isn't really your own anymore. I had no true concept of this before I had Riley, and I was more reckless during my pregnancy with him. After he was born, I learned the true meaning of selflessness, and subsequently was more consciencious during my pregnancy with Zoey. The fact is that, like any other life, you have to cultivate and care for a pregnancy to the best of your ability because a healthy infant is NOT A GUARANTEE. Even if you do your very, very best, it's not a guarantee, but the silent agreement you make by deciding to have a baby is that you WILL do your very, very best to ensure its health.

There were things that I didn't take seriously enough during either of my pregnancies, and one of those things was listeria. There were always "by the book" moms or pre-moms I'd encounter that would preach about avoiding lunch meat or heating it to 'steaming' before eating it and I'd blow them off. The fact was that I was arrogant and of the mindset that bad things only happened to other people, people I didn't know, people that I didn't share any kind of connection with. I ate whatever the hell I wanted to- thank you very much- and I had done so with Riley, too. He was fine, so there you go. It didn't help the situation that many doctors were advising women that listeria was nothing they needed to worry about. I remember reading things from other pregnant women on the forums like "My doctor never heard of anyone actually contracting listeria from lunch meat, so he said not to worry about it."

I am sad to say that like so many others have, I had to learn the hard way by watching my best friend's first child succomb to listeriosis. The kicker, in her case, was that she was following all the rules and it happened to her anyway. The doctors said it was likely cross-contamination, maybe from a restaurant. Shortly afterwards, I found out about two more people in my extended family that had lost their pregnancies to listeriosis- one of them from lunch meat. Suddenly this was a REAL concern, and the group of naysayers I'd once been a part of seemed abruptly very reckless. If this could happen to someone that was taking care to follow the rules, think about how much more a risk those who weren't following the rules were running?

It is easy for many people to make selfish decisions when the life growing inside of them is still an abstract concept, or a distant potential. It's not unheard of for women to not relate to their child until it is outside of their bodies, and even sometimes then it takes a while. What's important is that we acknowledge the potential and possibility there. It has become a matter of grave importance to me over the past year to caution women that disregard the warnings they're given during pregnancy. They aren't just myths. They are warnings for a reason. Far too often, I've seen the excuse "But I did _______ during pregnancy and _______ is just fine!". I liken it to a game of Russian Roulette, where a revolver is loaded with a single round, the cylinder is spun and the gun is fired against the side of the head. Chances are better that you will get lucky than they are that you will put a bullet in your brain.

But do you really want to risk not getting lucky?

I have seen and felt the pain that accompanies the loss of a child. It is awful regardless of the situation, but I can only imagine how much more awful it would feel to endure it wondering if there was something you could have done to prevent it from happening.

Your responsibilities as a parent start at conception. Take warnings seriously, and if your doctor doesn't? Get a new doctor.

August 19th- Day of Hope

I've mentioned previously that this was a rough week. Today, I am going to delve a little bit into why. This is going to be hard to write and maybe hard to read (especially if you're as sensitive as I am) but I'm going to approach it unabashedly, like I try to do with most topics.

Today is the Day of Hope, founded by Carly Marie Dudley. I accepted an invitation to acknowledge and honor this day on facebook, but I'll admit it had slipped my mind until I saw the following quote mentioned in a status:

‎"August 19th is a day to break down the walls of society that keep pregnancy, infant and child loss a hush hush subject. People view the death of a baby as just a sad thing that happened.These babies that die are not sad things that happen. They are people, much loved and wanted children. They are brothers, sisters, nieces, nephews, grandsons and granddaughters." ~Carly Marie Dudley~

So that's exactly what we're going to do here. Talk about loss.

Let's be honest- who really WANTS to be sad? All psychological, masochistic issues aside, a healthy human being doesn't generally set out to make themselves depressed on a regular basis. Unfortunately, when you have been affected by loss, you don't always get to make that decision for yourself. The sadness is there, staring you in the face every morning when you wake up, forcing you to acknowledge it and make a decision about how you're going to handle it that minute, and hour, and day.

For those of us that haven't been as close to the loss, it's a bit easier to avoid dealing with it. It's less of a struggle to turn that part of ourselves off and simply not confront our feelings about it as often. Many people take this approach. They acknowledge the gravity and sadness of a situation and then move on. Sometimes, either voluntarily or involuntarily, they will think back and mourn for a while. There really can't be any blame in that. Again, no one really WANTS to be sad.

But making the choice to not think or talk about it doesn't make what happened go away. It doesn't erase the life that was lost, however short that life may have been.

On August 16th, 2010, Simon Maurice Rivers was born to two wonderful parents, one of whom I've been friends with for 21 years. I was pregnant with Zoey at the time. We'd arranged marriage between our children, naturally, before we were even aware of their genders. I'd bought Simon a tiny pair of booties, which were scheduled to arrive at my house any day. Simon wasn't due until October 31st. The circumstances surrounding his birth weren't favorable, but he was a little fighter. We all had high hopes. I ordered a teddy bear from the hospital gift shop with a card that said "Congratulations!". I prayed throughout that day, as I had in the uncertain days before. That night as I settled in to bed, I received a phone call from a friend visiting the family in the hospital. I can remember the phone call in extraordinary detail, telling me that Simon had passed on. He had succumbed to the listeriosis infection that had ravaged he and his mother both. I don't remember the hours after it at all. Nor the day that followed. I remember receiving the booties that week, and all I could think was "I'm so glad I didn't have these shipped to Karen. I don't know what it would have done to her to get this package now." I still have them. I never figured out what to do with them.

I found out later that same week that another friend of mine, due in December as I was, had lost her twin boys. Though we weren't as close then as we are now, the news was devastating nonetheless, especially when paired with the loss of Simon. I was reeling, and heartsick, and confused. I didn't know how to deal with it, what to say to these grieving friends of mine that could offer some solace.

One year later, it still hurts just as much. The pain is less confusing now. It has a sad familiarity about it. It has moved in and made itself at home, but unlike the memories it binds itself to, it will never be welcome. Though I never forget, I am not confronted with the reality of the situation on a daily basis the way the parents are. This abstract hurt that I feel as a bystander, to them is a much more constant and physical absense. It has changed everything in some ways, but perhaps what hurts the most are the things that should've changed, but haven't.

It is important that those of us that haven't experienced the loss of a child directly understand that those that have don't have the option of forgetting it, or not acknowledging it. To them, in place of a child, there is only 'what if's and 'what should be's. We have the ability and responsibility to make sure that we don't forget, either, and don't neglect to acknowledge these lives just because we don't want to feel the hurt.

Today, and always, I hope you can join me in remembering those who never had the opportunity to make their own memories.

All my love to Simon (8/16/2011), Bryston, Colton (8/15/2011) and Elliott (11/28/2010).

http://carlymarieprojectheal.com/

Is this what normal people feel like the morning after?

Hi. Did you miss me? What do you mean you didn't notice I was gone? I took the whole three-day weekend OFF from the internet. Well, with the exception of hours of research I did trying to figure out why my home computer keeps crashing. This is a big deal. I mean my break from the internet, though my computer crashing is a close second. You see, if it weren't for the internet, I probably wouldn't have friends. I am really bad at keeping in touch, but I'll be damned if Facebook doesn't make it a crapton easier. Since it's obvious that you've all (I mean you, and you. Thanks for reading) missed me terribly, let me entertain you with a summary of my weekend.

Friday, I finally hauled Riley in to register him for Kindergarten. Zoey, too, but she only wishes that she were being signed up for an opportunity to get away from me. For those who haven't met my son, it is an understatement to say he's not shy. He's also not even the slightest bit intimidated by adults. We walked into the school's office (cute school! The sidewalks are all decorated with illustrations of the school's values, Riley and I had fun on our walk up to the door) and Riley immediately steamrolls those sweet, unsuspecting personnel. He walks in, past the front desk, back into an area that I'm sure is typically reserved for staff, and starts questioning a lady there about what she's doing on her computer. She thought it was hilarious, thankfully. I was a little worried he was going to be banned before I'd even gotten him registered. She offered him a job as her personal assistant, and I practically had to beg him to come out and sit beside me while I filled out forms. I talked him into playing with my phone instead (and found out later he'd started a game of Words with Friends with Russell). Zoey started chanting (ehhhhhhh-UH! ehhhhhhhh-UH!) in a tone that grew progressively louder, until everyone in the office was cracking up and my face was burning. Riley then impressed the ladies by loudly reading everything on the bulletin board in the office for them as I tried to drag him out the door. I get the feeling they might remember him.

It was absolutely lovely outside that afternoon, so the kids and I went out into the backyard to play. Zoey and I set up camp under a tree while Riley played with his "Stomp Rockets" that he'd gotten from Grandma Crossley for his birthday.



You put the styrofoam rocket on the tube and then stomp on that pink thing.

Or, if you're Zee, you eat grass.

I was fortunate enough to capture this heartwarming action shot.

Saturday, we went grocery shopping, then school shopping. Riley had fun picking out a lunch box and backpack, and I even let him help pick out his clothes. He doesn't have bad taste, for a five year old.

Sunday, Russell smoked a chicken and some baby back ribs, and I drank some beer. I think- THINK- I might have my first hangover ever this morning. I've got one of those headaches that saps all your strength. I wasn't even able to get the deadbolt to lock on the door when I left the house, and I had to cut open the package my breakfast was in even though it's perforated for tearing. Pretty lame.

Seriousness coming-

All those things having been said, my heart is heavy today, and probably will be throughout the week. I am remembering three baby boys that left this world far, far too soon, and am so heartbroken for their families. Please take the time to appreciate your families a little extra today, and if you pray, try to remember to ask for peace for those who have holes in their hearts that can never be filled. All my love to those who have felt the pain of losing a child, particularly to the Cortez and Rivers families this week. My thoughts are with you and your sweet baby boys.