The Momoir Project

 By Taryn Skees

There is a fog that I’ve been fighting for a few weeks, months, not exactly sure. It’s crept up slowly but steadily, until its presence can no longer be passed off as something I can easily wipe away each morning so I can focus fully and clearly on my day.

I’m tired. Exhausted. Emotionally and physically. It is a constant struggle for me to get through each day with my head held high, with a positive attitude. I am okay - in the sense that you may be wondering about me now. I am okay - in the broadest sense of the term. But I’m still hurting. And fumbling through the grief, fears and worry that became a part of my life a little less than two years ago.

Sometimes I catch a glimpse of myself in my wedding photo hanging on the wall in my family room. I find myself staring at it, the picture of me - carefree and hopeful with my hair swept off my shoulders. I looked beautiful. And I’m not saying this to sound conceited. I’m saying it because I felt that way. I was at my best.

I hate it that those pictures now make me cry. I see the look in my eyes - the pure and unknowing strength and confidence to take on whatever life might possibly throw my way - and I think about where I am now, what I’ve endured, and how naive I was to think that life could always be that innocent.

I spent 4.5 weeks on bedrest when I was pregnant with Ethan. A little longer during my pregnancy with Aiden. And each and every day from the moment I saw the two pink lines (or in Aiden’s case the digital “pregnant”), I prayed for a healthy child. “Do you want a boy or a girl?” people would so predictably ask in the supermarket, at the doctors office, at work. “It doesn’t matter to me,” I’d reply. “As long as it’s healthy.”

The night Aiden was born, I was unforgivingly introduced to a world that was foreign to me. Medical terms and jargon that had no place in my life nanoseconds before his arrival became common place: Anomoly. Craniofacial. Craniosynostosis. Syndactyly.

Words that once carried no meaning now seep out in everyday conversations. The night Aiden was born, for the first time, I fully understood the phrase I had been known to dramatically shout to my parents during my teenage years when I couldn’t go on spring break or stay out past midnight. “Life is so unfair.” Little did I know.

Surprisingly, I was able to hold it all together quite well during the months after Aiden was born. In fact, it never really crossed my mind to become depressed or to wallow in my pity. I was resolute. Determined. Steadfast in my thinking that a positive attitude would help me get through it all and that, in itself, would most benefit my son. It took me a long time to realize I was on auto-pilot. I didn’t think about being depressed because I didn’t have time. There were doctor’s appointments, surgeries, geneticists, tests. But no time to deal with what was going on all around me. I was strong. Still am. But with several months of not having to worry about every runny nose, and whether or not it will stand in the way of my little boy having his next operation to give him separated fingers and toes, I now have the time to turn my thoughts to other things. Like being depressed.

I guess you could say I am one of the lucky ones. I recognize that with all the ways my life has changed over the past two years, I am pretty high up on the risk list for becoming depressed. So when I began crying more than I smiled and having stress-related chest pain that no healthy 28 year old should have, I pretty quickly self-diagnosed the fact that I might be battling more than just a case of the “blues.”

When your world falls apart, no matter what brings it about - the loss of a loved one, a miscarriage, a divorce, a diagnosis - it is pretty common to experience the seven stages of grief:

1. Shock and denial
2. Pain and guilt
3. Anger and bargaining
4. Depression, reflecting and loneliness
5. The upward turn
6. Reconstruction and working through
7. Acceptance and hope

I seemed to have teetered through all stages, only to re-experience one of them again several months later. Obviously not knowing about Aiden’s condition provided the shock factor when he was born. And denial wasn’t too far behind, although I think I “accepted” his diagnosis. The pain and guilt is a real stickler. I feel pain everyday for what Aiden has to go through. And any mother will understand when I say that no matter if it’s a stubbed toe, a splinter or in my case, an extremely rare genetic disorder (ha!), there is a level of guilt that only a mother can experience. It somehow feels like it’s your fault. Even when the logic in your head and every bone in your body knows it isn’t. You find yourself saying ‘If only I’d…’ this or that ‘then maybe this wouldn’t have happened.’

That led me right into the anger and bargaining stage. During my pregnancies, I ate right (granted I understand that my craving for Sour Patch Kids was probably not super healthy). I started taking pre-natal vitamins several months before I knew we would try to become pregnant (and with Ethan being only 3 months old when I got pregnant with Aiden, I hadn’t even stopped taking them yet!). I read every book. I followed every piece of advice. I stayed away from deli meat and stopped drinking caffeine.

I. Did. Everything. Right.

One could say that thinking about that made me angry. Very angry.

I doubted God. I stopped going to church. I found extreme irony in the fact that our parish priest couldn’t console us during his visit to our hospital room when Aiden was born because I was so angry at all things religious that it only made sense that this wise man of God couldn’t find the words. That proved it. It had to all be a farce. God must not exist.

For the next several months, I spent most of the time going back and forth between stages two and three. Then I quickly entered stage four and have probably spent more time there than I even realize or care to admit. However, I do feel that I’m slowly approaching the “upward turn.”

When you think of grief in stages, it gives you a road map that helps you understand your feelings every step of the way. When my world fell apart, I somehow mustered up the strength to ignore my grief and get through some of the most difficult life experiences I hope to ever encounter. But I’ve learned that it is only after weathering the storm that you finally start to assess the damage. I’m no longer in shock. I don’t deny what has been chosen for me and my family. Guilt, I’m done with it. I’m through blaming myself. But pain and anger,- I’m not sure that will ever subside.

Aiden has proven so many of our fears wrong. His future is much brighter than I ever would have thought when I was just starting to digest the medical information given to me after his birth. I am more than hopeful. I am proud.

I am happy. I love my boys more than life itself and the love that my husband and I share is immeasurable. I am very blessed. And I do know that God does exist and he does have a plan for me, for Aiden, for my family.

It is for those reasons that I am allowing myself to move through each stage of grief rather than fight it. I have no doubt that I will get through this rough patch and will start to see the rainbow - it’s just a matter of time. Because if there is one thing I’ve learned from my family, it’s that when your world falls apart, you just have to pick up the pieces, put them all back together, and move on. With their help of course.

Taryn Skees took the online Momoir Project session and blogs at: www.theskeesfamily.com