A Repetitive Theme

Today, my four year old looked at Kenneth’s picture on the wall and said “That’s my brother Kenneth! He’s in Heaven though.” He thought for a minute, then asked, “Mama, when Kenneth is all done being in Heaven, can he come to my house?” 

It just about broke my heart to have to tell him that people can’t come back from Heaven. I posted about what he’d said on a small, private message board, and one of my friends said something that I’ve heard many times: “I don’t know how you do it.”

The truth is, most days I’m not sure, either. The answer has changed over time, and sometimes it’s different from day to day.

In the beginning, I got through by trying to remember to breathe. I gave myself over to my grief body and soul. If I wanted to cry, I cried. If I wanted to yell and scream, I waited until I was home and blistered God’s ears. 

Now, it’s a little different. In some ways, the beginning was almost easier because I knew to expect the grief and the overwhelming pain. There was no surprise in living in the darkness. Just shy of six years later, things in life are mostly normal. Mostly. Every now and then, a moment happens that is a kick to the gut, a knife to the heart. Those moments are hard, because they never seem to happen at a time I expect. They catch me off guard and take my breath away, and many times they happen in such a way that I have to maintain my composure, like when my son asks me if his brother can come to his house.

I should never have to explain to my son that his brother will never come to our house, but it is our reality. How do I do it? By doing what I have to do, and doing my best to do it well. My son deserves to have his questions answered, even if it feels like answering the questions steals my breath and knocks me flat. Will I cry later? Probably. I’ll save my tears for after my son is in bed, use this blog for catharsis while he watches his nightly cartoon, and pray that somehow God gives me the strength to do this for another round.

All of us are given things in life that we didn’t choose, but were instead chosen for us. I didn’t choose any of this, but I have it. In life, we have a choice. We can get knocked over by whatever unfair circumstance that gets dished out and choose to stay down and stay bitter, or we can choose to allow our grief and hurt to have its season and then try to live again. You can’t choose what happens to you in life, but you can choose how you respond to it.

How do I do it? I’m too stubborn to give up. I love my other children too much to have their lives overshadowed by Kenneth’s, but I love Kenneth too much to pretend that he was never here and didn’t matter. It’s a balancing act. Sometimes I fall, but I get back up again.

Nobody ever said life was fair or easy.

Oh Texas, My Texas

I am a Texas girl. I’ve lived here nearly my entire life, even though I was born in a different state. I love Texas– the food, the culture, the friendliness of strangers to other strangers. The politicians and I very rarely see eye-to-eye, however. Sometimes, they make some decisions that leave me wanting to slap them silly.

Take the decision made during the last legislative session to defund Planned Parenthood, for example. Planned Parenthood provided a very large portion of the women’s health services to low-income women in this state, but they are also an abortion provider. The good ol’ boys (and a few token girls) didn’t like this, so they decided not to give any State funding to Planned Parenthood. The federal government took issue with this and said they’d cut off funding for health programs unless the Texas legislature funded all organizations equally. Texas stayed stubborn. The federal government cut off funding. The end result? Low-income women are finding it much more difficult to get well-woman exams, and, as a consequence, birth control.

Now, I’m pretty well against abortion; I think it’s morally wrong except in the most extreme circumstances. I’m also smart enough to know that if you give women the tools to manage their own fertility, the demand for abortion goes down. It seems to me that if the government here in Texas wanted to reduce abortions in the state, the way to do that would be to fund access to women’s healthcare and to birth control. In fact, research backs me up. 

 

The good folks over at http://www.everydayhealth.com sent me this handy infographic; you can find it on their website by going here: http://www.everydayhealth.com/sexual-health/free-birth-control-can-reduce-abortion-rates.aspx

The Republicans in Texas are cutting off their nose to spite their face. It doesn’t take a genius to figure out that less access to birth control is going to mean more unplanned pregnancies, and therefore a higher birth rate and a higher abortion rate. 

Let’s see here…

• Texas has defunded public education
• Texas has defunded public health programs 
• Texas has reduced access to birth control, meaning the birth rate in low-income families will rise.
• Texas has a large network of for-profit prisons, all of which demand a 90% occupancy rate.

Anybody else see some problems with the way things are going right about now?

In a World Gone Crazy

Today marks eight days since a gunman took the lives of 26 innocents, most of them little children between the ages of 6 and 7 years old. 

I saw the news on my lunch break at work. I had pulled out my phone to mindlessly scroll through Facebook updates while I waited for my food to heat up in the microwave when I saw status after status about the shooting. I told my co-workers what I’d read, and spent the rest of my lunch break in stunned silence as I tried to comprehend.

After lunch, I teach third graders for an hour, followed by fourth graders. Every Friday, the PE teacher and I combine all of our classes to team-teach out in the gym, so that meant that I had an entire grade level of kids to watch over. I held it together during third grade, but just before fourth grade, the PE teacher got a call from a friend. That friend told him that most of the victims had been children.

I generally don’t react emotionally to the news. I didn’t cry over the Colorado shootings earlier this year, even though I was sick over it. I cried over this news. I had to go into the PE teacher’s office for a few minutes to get myself together so that the kids wouldn’t wonder what was going on.

If you are looking for the cause of this, look no further than the state of mental health treatment in this country. Guns didn’t do this. Guns couldn’t have prevented this. Arming teachers won’t prevent another Newtown. Neither will disarming the general public. To prevent another Newtown, we need to look hard at a system that requires families to pay upwards of $30,000 per month in order to put their children into inpatient care. We need to ask why most insurance companies limit visits to see psychiatrists and psychologists to 20 or so visits per year. We need to help the parents of mentally ill children, not demonize them for having a child that is “out of control” while simultaneously denying them any real treatment for their child.

I have taught kids that are mentally ill. I have taught violent kids. I have seen “the look” in a child’s eyes and known in my gut that if something were not done to reach that child, he or she would hurt someone one day.

If you want to prevent another Newtown, start by being willing to help children– all children, not just the ones that are cute and loveable.

I think I might be a terrible person.

I’ve been reading about a new approach in treating kids with HLHS (Hypoplastic Left Heart Syndrome, also known as the heart defect that stole Kenneth from us). Apparently researchers at Boston Children’s Hospital have had some success in getting the left ventricle to grow, meaning that HLHS kids that fit the criteria to be a candidate for their procedure have a chance at having two functional ventricles. 

This is some pretty huge news for the heart community. It’s a wonderful advance. It is hope for families and for children. So, why am I so mad?

I’m mad because no matter what miracles modern medicine discovers, they are too late for us. Too late to help my baby boy, who I miss with an intensity that still sometimes catches me by surprise. It is too late for us, and it just isn’t fair. I want to stomp my feet and kick and scream about it all.

From what I have seen, Kenneth’s subset of HLHS (mitral stenosis, aortic atresia for those that wonder) would have meant that he wouldn’t be a candidate for this procedure anyway. Small comfort.

I miss my son. I want him back. 

Post Traumatic Stress

I have PTSD. It probably doesn’t shock anyone reading this, given everything that we’ve been through in the past 6 years. It comes with the territory when you’ve lost a child, I think. Lately things have been a bit more at the surface than usual. Why, I don’t know.

Anyone with PTSD will tell you that the flashbacks to the traumatic event are the hardest thing to deal with. I am very good at reminding myself that it isn’t happening rightnow, but the memories are still hard. For me, the trigger for the flashbacks is usually sound; not too shocking for someone whose whole life revolves around the auditory. Beeping can bring me right back to the sound of the alarms in the hospital. The hiss of my husband’s CPAP brings back the rhythmic hiss of the ventilator. Anything that triggers the flashback sends me right back to 2007 and the horror of seeing my baby with his chest wide open. The swelling that was so bad it made his skin weep fluid. Seeing a silently screaming baby and not being able to pick him up to comfort him. Watching his entire body turn into a giant bruise. The sensation of holding a cold deargodtoocold little baby that had already gone from this world. The scratch of the pen of the insensitive twit of a nurse, filling out paperwork and leaving toe tags out for us to see as we rocked the swaddled body of our son. Waking myself up sobbing in my sleep. Shopping for funeral clothes to fit my postpartum body. Watching my husband carry a tiny casket from the pavilion where the funeral was held to the grave site. Our tiny living room, overflowing with funeral flower arrangements. The nursery upstairs, decorated and ready for a baby that never came home.

The images and sounds are a movie that sometimes plays itself out in my head, over and over and over again. Having to deliver a second child into the hands of the same surgeon that tried to save Kenneth seems to have brought it all closer to the surface than it was before. Even though Elise’s outcome could not have been more different than Kenneth’s, just the thought that we were so close to losing a second child is enough to give me chills. 

In some ways, I treasure those memories. Horrible as many of them are, they are all I have left of my son. Memories and pictures. 

At the End of the Day

Last week was a very difficult week at work. My “classroom” is the cafeteria stage. It has a partition that is closed during the usual school day. It’s the end of the school year, though, and that means end-of-year awards ceremonies. I usually lose my classroom in the last two weeks of school. Luckily, the PE teacher that I work with and I get along well and team teach on a regular basis. So, we typically combine all of the classes out in the gym during this time of year.

This is all well and good, except for one teeny thing. On Tuesday, the PE teacher had an all-day meeting to attend. He got a sub, but the sub was…well, the sub was worthless. That meant I taught every class on the grade level by myself all day long while the sub stood like a deer in headlights doing absolutely nothing. Most of the kids did just fine, but we have our share of kids that are a handful to manage. It was a very long day.

Wednesday, I received what was quite possibly the nastiest e-mail I have ever gotten, written by two of my co-workers. Apparently they got their noses out of joint over something, and rather than coming to talk to me about it face-to-face, decided to talk to others about me, get an incorrect version of events,and then send me an e-mail over it. I haven’t had anything so ugly said to me in any form since high school. The drama and cattiness continued all week long.

On top of all of this, there has been an undercurrent of discontent among the staff because of some directives that have come down from central office in recent weeks. To say that morale is bad and that tempers are short is the understatement of the century.

All of that had me in a foul mood by Friday afternoon. I couldn’t wait for the work week to be over, and I was thinking thoughts along the lines of “How am I going to do this until it’s time to retire??”. Then, one of my former students stopped in to visit with me. She’s a kid that I mentored for her last two years at my campus, and she’s one that I have thought about and worried over many times. She stayed and chatted with me for about 30 minutes in the foyer of my school. She told me about two of her siblings, both teen parents. I told her that she’d better not become one herself or I’d kick her. She promised me she wouldn’t, and said she was just going to adopt her kids. I told her to come back and visit me.

I left work on Friday remembering why I do this job. Despite all of the stupid, petty stresses that come with it, at the end of the day I just want to make a difference in the life of a kid. Getting a visit from that former student made me hope that what I’m doing matters after all. I desperately needed the reminder.

I’m still alive. I think.

I’ve tried to type a new blog post about 50 times over the past month, but something always seems to come up and interrupt me. Apparently I make a terrible blogger, because I frequently let a month go between new posts. Bad me.

Life here has been busy. Elise eats like a newborn but is 6 months old, so the cumulative effect of months and months of sleep deprivation has taken its toll on me. Somehow I’ve managed to be a functional adult, but by the time I get any moment of quiet in the evening I don’t want to do anything other than crawl into bed.

As tired as I am, I wouldn’t trade this for anything. Elise is a happy baby who smiles constantly, and Grant is an amazing big brother to her. Watching the two of them create their relationship is priceless. I know that they’ll have the usual sibling battles as they grow up, but I hope that they’ll always go back to being friends in the end.

I’m thankful for the family that Jacob and I have created. We have had some family drama worthy of The Jerry Springer Show in my immediate family lately. Without going into details that are not mine to share, it has made me grateful for the man that my husband is. How I got lucky enough to marry a man that is committed to me and a dedicated father to his children is beyond me. I have seen enough of the world to know that men like him are few and far between. He might drive me crazy with his housekeeping habits (or lack thereof), but at the end of the day I’m blessed to have him.

The school year is winding down here, and so I’m hoping that summer will bring a baby that sleeps longer than two hours at a time and some renewal to my mind. One of these days I’ll have the time to write about one of the several blog topics that have been rattling around in my brain, but until then, I’m just going to sit back and try to enjoy the crazy ride that is my life at this moment in time.