Mourning Mallory

It feels like my life has come to a point of closure. Recently, my wife and I experienced a difficult period that I have documented often in this blog. We lost a baby late in the pregnancy to triploidy. It is a freak chromosomal disorder that has always been fatal for the fetus.

We both have worked hard to grieve appropriately and deal with the emotional roller coaster that accompanies a loss such as this. Fortunately, this experience doesn't have any lasting physical problems so we have been able to continue our lives as planned.

We now approach the one year anniversary of the event. At this year mark we have a beautiful baby girl. We are celebrating this joyous experience with sleep deprivation and plenty of diaper changes and feedings. These events present their own challenges believe it or not, but each one is graciously welcomed.

So now I reflect on the past year with all that has happened and wonder to myself if I should put the loss to rest. But I don't want to let this go. I fear that moving on would distant myself from the memory of Mallory even though there was never really a physical memory. I recall the weeks following the loss and how determined I was to make sure we didn't sweep it under the rug. My gut was telling me that I needed to make a big deal about the loss.

I still question if that is appropriate. Plenty of couples lose babies. One thing I learned from the experience was that the number of babies that are lost is surprisingly high. A number of women lose numerous babies before they finally have a successful birth. I lost count of the women in our lives that came out of the woodwork and told us their own stories of lost babies.

They remained silent about these losses. If this is the case and many of them don't mourn their losses, does this mean I am blowing this out of proportion? Is my effort to remain so open about my experience a cry for attention? Am I making a big deal over nothing? Am I too sensitive? Is this something I should let go?

I'll be the first to admit I crave attention. Isn't this blog really an example of me crying out, "Look at me! Listen to me! Watch me!" I think everybody enjoys positive attention at some level whether or not they'll admit it openly or even to ourselves.

So is this a function of that craving?

I do know that in my private moments, I have been emotional over the loss. I really did carry the burden for awhile and throughout the successful pregnancy, I would revisit the memory of the loss in a fearful or saddened way. I didn't always publicize those moments. I would share them with my wife, but she was my partner in this experience.

My wife refers to our daughter as our "miracle baby" because of the loss. She feels it is time to put the loss behind us and has said it is OK to let go of the mourning.

I, on the other hand, still feel that ending the mourning would be one more step to forgetting Mallory. It is all I have of her. My brother and his wife are so generous and caring. They gave my wife and me two gifts. One for the new baby and one to remember Mallory. It meant the world to me. I felt like it gives me a tangible memory of Mallory and I could begin to let go without erasing her. But here I am still wanting to hold on to the sadness. I'm still afraid that letting go would erase Mallory.

Another thought I had was to tattoo her name somewhere hidden on myself. I would then have a tangible way to keep her with me forever. But this would make a hypocrite out of me since I have major issues with the trendy tattoo thing that has risen over the last decade or so. Also, if I did this, I feel I would need to add my two living children and then I would be approaching NBA player level. Wait. No, until I have body ink crawling up my neck and down my arms, I'll be OK.

Maybe my newborn is my closure. She may represent what Mallory would be. Maybe she represents what Mallory is. But I do not want to put that on her. I don't want my youngest daughter to live her life carrying the memory of someone else. I want her to be her own unique person to me. I recall a good friend of mine whose twin was lost at birth. We have discussed this subject manner in the past and his opinion would be worth hearing. I am curious if he feels like he was carrying the memory of his brother throughout his life and if that was a positive or negative thing.

This is a joyous time in my life. I have had numerous setbacks over the past several years and it feels like I am beginning to climb my way back to the surface. This is a time I should be celebrating all the joy, not dragging out the pain. I just can't leave this behind me.

Life is not about the destination but the journey right?

So cliche!

When Is It Enough?

Today I observed a tendency in my daughter's handwriting. As we practiced writing letters at the kitchen table, she would change her hand. I am not a father that prefers her use of one hand over the other. I want her to use the hand that is best. So I have not pushed her to use one over the other to allow her to develop her own preference. But I now wonder if she needs to commit to one. She already deals with a significant cognitive impairment and I want to help her do what is best to compensate for it as much as she will be able to.

So I just sat back and observed her writing. I soon picked up on a pattern. It seemed that she consistently made the same errors with one hand but not the other. For instance, when using her right hand she would draw the letter C backwards. When she used her left hand, she would draw the same letter C correctly. She was consistent with this as she repeated the same mistake with her right and repeatedly wrote it correctly with her left. Also, with other letters that required the same direction as C like the letter G, she made the same errors....EXACTLY.

When it came to a letter with the OPPOSITE motion like a D, B, P or R she would be able to write correctly with the OPPOSITE hand. And consistent with the first letters mentioned, she made the same backwards errors, with the other hand. So with D, B, P and R she would write correctly with her RIGHT hand and backwards with her left hand. The opposite of the opposite letters.

Clear as mud? Or do you get my pattern here?

What does this mean? Anything? Honestly, I feel it means something. It may be something we already know, but it may be a clue. I was quite excited that I discovered this. So excited my head was spinning and I couldn't think straight to reflect on what it meant.

Unfortunately, I was soon brought back down to earth as I realized it probably doesn't mean anything. And I found myself back in the old discussion about when is enough enough with my battle to find "answers" for my daughter's condition. At what point do I just accept her for who she is and quit trying to find out how or why things are the way they are. There is probably no cure. I may never know exactly why it has happened. I am draining the pond dry to find these answers and some point I have to realize it is out of my hands. So these "clues" mean very little other than the fact that she has a neurological condition and her brain is not developed the way it needs to be. This is stuff I already know.

So what should I do? Do I continue my M.O. and seek answers or information about this pattern? If so, where do I look and who do I ask and what do I ask? This is what I want to do. I was told when my precious daughter was only hours old that I was her advocate. I was and am her voice and I need to look out for what is in her best interest until she can do so on her own. I clearly recall standing in the hallway with my dad looking through the window of the nursery at her feeling like I had know her all my life. I remember the feeling of helplessness and how fragile she was. It was very apparent to me how important my role was to this little, beautiful person. At that time I had no idea exactly how I was going advocate for her. I had no idea the "battle" I was in for. I didn't realize how alone I would feel in this "fight" sometimes. But I did know I had to look out for her and I have never let go of that.

This is why I have taken her to see geneticists, developmental disorder experts, MRDD services, neurologists and other specialists. She has taken what seems like every test known to man. I have read articles and asked people questions. I have joined website forums and tapped the special education expertise of my wife. I have brainstormed numerous possible causes and asked doctors. I have changed neurologists so I could understand the language they speak. I have asked friends who are doctors themselves and pharmacists about other possibilities and the drugs we have had to use. And I feel like all of this is not enough.

Am I not accepting my daughter for my daughter? Am I trying to make her something she is not? Am I unable to handle that she is not as normal as her peers and therefore, trying to make up for it in this way?

In my heart I know I love her and do this because I want what is best for her. I know I would not love her more if she was on the same level as her peers. I don't love her any less. I worry she won't be able to live a normal life. I fear she will be called retarded and made fun of. Honestly, it would not be bad if she gets made fun of because every kid needs to deal with that but I don't like the idea of her being sad. That kills me.

So when am I crossing the line of advocating for my girl and trying to make up for some sort of feeling of inadequacy?

Positive Affirmations

Recently I learned something new about our behavior and feelings. I hope it is going to change the way I view things or think of things. The power of thought is much more powerful than I anticipated. In a round about sort of way I may have already known this but never acknowledged it. Now, it is time to address it and use it for good and not evil.

I was aware of the chemicals and hormones racing through our bodies all the time. These chemicals dictate how we feel and react to things. They play a major role if not THE role in our perception of reality. These are the things that make me feel there is no God or a puppeteer like God. Today is not that kind of blog post though. These chemicals can be triggered by the thoughts we create in our heads. Therefore, we can control our feelings to a certain degree through our thoughts. I don't mean to be so cut and dry and make this out to be an easy task. This is obviously easier said then done or our whole world would be quite different and the need for counselors and therapists would be much smaller.

Throughout my life I was fortunate to have two parents who made it a point to compliment me and avoid too much negativity. Of course, I still had to find a problem with that as I progressed through adolescence. My poor parents couldn't win. They managed to avoid being those overbearing, negative parents killing their kids confidence and self-esteem and did everything they could to build it up and I STILL complained about their parenting. My issues were that I would have a false sense of accomplishment and so I made it a point to cut myself down and ignore and positive remarks they gave me. To this day I have a hard time taking compliments even though I cherish every little one and starve for them. I usually find ways to rationalize how the compliment is not true or too positive. I can't just leave well enough alone and say thank you. Also, I am so afraid of getting insulted or criticized that I try to cut myself down first to avoid any criticism from someone else. I figured if I got the first punch in, the others would not get a chance.

So decades of creating these negative thoughts in my brain have hard wired it to the point that I automatically have these negative feelings about much of what I do. Any time I do something, I naturally react negatively towards it. Therefore, I feel bad about myself and lack confidence much of the time.

I have never had major panic attacks but from what I have heard and learned, they are pretty much adrenaline rushes. Chemically, they are the same as a rush of excitement. The difference is the feeling attached to it or the context of the adrenaline rush. Many times panic attacks or anxiety attacks or general feelings of fear or even sadness can be induced by thoughts. You see something happen and you react to it or think about it. These reactions or thoughts in the brain produce the chemicals that create that "attack" or the feelings of fear, sadness and so on.

With that in mind, you can control your feelings. I have been doing this by thinking negative thoughts about myself on purpose leading to low self-esteem and lack of confidence or general feelings of fear and sadness. What I should be doing is forcing positive thoughts in my head. I need to get to the point of making this routine. These positive thoughts will produce the chemicals that create happiness and confidence. The adrenaline rush would then have a more positive context to it and feel more like a roller coaster than a panic attack.

But let me tell you this won't be easy. The logical, left brain dominated self that am I will analyze things to a point of pure negative and not allow those positive chemicals to flow. The Huey Karma will have its way with me. The hard wired brain that is my head will be a tough one to plow through.

For now, I am going to try to recite positive attributes I consider myself to have each morning. I am going to use my dad's technique of pounding my heart and saying, "Today's gonna be a good day." Hopefully, this will foster a more general sense of confidence and self-esteem. I highly recommend you to join me.

Like Guy Smiley on the old SNL skits......."and dawgonit, people like me!"

Grieving

I remember learning long ago in my psych 101 courses in college and books I read later that when one encounters a traumatic life event they need to go through a process of 5 steps to properly handle it. These steps begin with Shock/Denial and proceed to Anger, Questioning, Sadness or Depression and finally Acceptance. I also remember Bargaining as a step but the basic premise remains with or without it.

Many people don't allow themselves to process through all the steps or to experience some of them fully. Others may get too caught up in a particular step and become obsessed or fixiated. When this happens the harmful effects can last awhile and intrude other parts and people in their lives.

It is good to experience all of them even anger and sadness. I recall stating this at my grandmother's funeral as I spoke during the ceremony. I said the experience was good. I meant that. I meant that the experience we all were sharing was a good one. We were crying, sharing memories and positive attributes about B and creating an energy together progressing through the 5 steps. I vividly recall the feelings of acceptance I had as we left the next day.

While we generally progress through these steps in order, many times we regress back to a prior step before progressing to the next. Sometimes we may fall back several steps just to skip ahead several and vice versa. I find it comforting that regressing in the steps doesn't necessarily mean you are not working your way through the pain properly. I can easily relate to getting angry over things I thought I was accepting or questioning my way through.

The questioning stage can be a very spiritual period of grief. As you ask yourself "why me?" and "how can God let this happen?" you need to avoid the self blame but you find yourself thinking about the after-life, pain and suffering to a point that hopefully progresses you to a place you are trying to get to or strengthening a place where you already are. But once again, getting fixiated on this step may cause more damage than healing.

To those who read this, try to remember during times of hardship that is it ok to feel these five stages. In fact, it is recommended to "do your time" in each stage to help you heal appropriately. Life goes on and so should you.

Time for me to practice what I preach.......