I don't think it will come as a surprise to anyone when I say that this last year has been a tough one for me. That's pretty much a given after loosing a child. But the truth is I haven't just been struggling with the loss of Ellie - I have also been struggling with the loss of myself. Let me back up a little bit. After Ellie was born my entire life drastically changed. Not only was my current day to day life completely different, but my entire future had shifted course. Goals and dreams of where I wanted to be and what I wanted to be doing with my family in one, five or ten years were completely washed away by the fact that my life now revolved around raising a medically complex child. Of course I was willing to do anything I needed to do for Ellie, but that didn't take away the sting of all I had to give up along the way. After months of trying to fit our new life with Ellie into the mold of our old life it became apparent that it wasn't going to fit. In fact, being surrounded by the remnants of the life I once loved was often a painful reminder of how different things were now. So we decided to take advantage of an opportunity to leave it all behind and go build a new life for our new family. Every decision we made in our move to Omaha revolved around Ellie and her care and we felt incredibly blessed as every last detail seemed to fall perfectly into place. It all felt so right and we had no doubt Omaha was exactly where we needed to be to raise Ellie. The three months we spent in Omaha with Ellie were without a doubt the prime of her life. I felt happy and felt optimistic about our future. Then, in the blink of an eye Ellie was gone and now I am left in the life that we created for Ellie without her and with nothing of my previous life to fall back on. I am having to start from scratch to figure out who I am and where I belong now.
Before Ellie died I was first and foremost a wife and mother. Now I am less of a partner and more of a dead weight that Scott is dragging behind him in life. One might think that losing a child would create a deeper love and appreciation for each of my children, but motherhood is nothing but a constant and painful reminder of how I failed and what I lost. Everyone experiences Mom guilt from time to time over things like letting your kids have too much screen time and not making a healthy home-cooked meal each night. But at the end of a less than ideal day they can always say, "but everyone is still alive." Each day I live with the guilt that because of choices I made, my child died! It makes all the other aspects of motherhood feel pretty unimportant when I have already failed motherhood in the biggest way possible.
It doesn't stop there. I am no longer a practicing nurse, but I am no good at and have no desire to be a full time homemaker. I am no longer a special needs parent and feel more and more like an outsider in those groups as I live my easy life with three healthy and typical children, but I am scarred in a way that makes fitting in with typical moms difficult. I am a Mormon, but I don't share the same warm and fuzzy everything will work out mentality that people prefer to focus on at church. Nebraska does not feel like home to me, but each time I return to Utah I feel less and less like I belong there either. I feel like an outcast in my own family. My old friends are too far away to know and understand the person I have become and my new friends have no idea about what kind of person I used to be and who I wish I could become again. I used to be a fit and active person and now I look in the mirror and can't even recognize myself physically.
To put it simply I feel completely lost and alone. It's like when I am following GPS directions to get somewhere and I make a wrong turn. All directions stop and I have to wait while my GPS reroutes me to get me back on course. Right now it feels like my direction in life is frozen and all I can see in the future is a big Rerouting banner with a circular Throbber that is circling and circling, but no new directions are loading. It makes it hard for me to believe that Ellie's death was all part of the plan. With how perfectly our life was set up for Ellie in Omaha and how forced and wrong every path in life feels now without her I can't help but feel like her death was simply a wrong turn and the result of my mistakes and shouldn't have happened. If I had been a better mother, a more knowledgeable nurse, and a more faithful person she would and should still be here today. That is the reality I have to accept and be accountable for every day of my life.
I know that eventually a new route will appear and life will go on, but I will always live with the pain and regret that this is not the path I was intended to be on.
