Friday, February 25, 2011

What We've Lost

My son is very complicated and it takes a lot of time, energy, patience and professionals to help him through life. Doctors, nurses, teachers, tutors, therapists and us. There are a lot of us; probably 25 people together between mental, developmental and physical conditions for which people are actively working at to help him find his way.

Three years ago this coming May we noticed he was changing. It was a year post kidney transplant and the symptoms of depression with suicidal tendencies crept in, he’d started staying inside more, he became more defiant. Because he was always defiant that part of it was barely noticeable. We’d had an incident on Mother’s Day where he drew a picture of a train and me on the train track. He said he wanted the train to run over me. So obviously, we knew something was “off” with him, more “off” than his regular offness.

Back then we watched our child exist in extreme pain and exhibit the outward symptoms of such pain. It includes any of number of self destructive behavior including but not limited to anger, rages, suicidal thoughts/actions, self-hatred, reduced appetite, destructiveness, disengagement with life/friends, academic struggles became worse, bouts of uncontrollable crying, and complete shutdowns of silence. Long minutes, sometimes hours, sometimes days of deafening silence. Likewise it could also be hours of raging.

Any of those symptoms or all of them could and often did happen each day during a two+ year period. Two years of living in a way that seems unbearable now. Many days I would cry as his mother, yelling to my husband, “I can’t help him! There’s nothing I can do that will help him. It’s too much!” Many times I said, “It makes no difference that I am in his life, he could have any mother and it wouldn’t matter because he is not connected to me in any recognizable way children are connected to their parents.” Obviously big picture, I’ll do anything for him, but as his mother/caregiver, it was hard not to feel any connection from him.

A little over a year ago we drove our son to a (mental) hospital and we admitted him for psychiatric care. Since then I realized how truly horrible it was. I realized that even though I was doing everything I could do to help him, it helped me to believe that there was a chance that he couldn’t get better. It was my way of helping myself get through the next bout of whatever he was that day, or that minute.

I’m asking myself how did I get through the typical day? You know what I did? I told myself that my son was who he was and while a large majority of people didn’t understand him or care to be around him, that I would do my best and I would love him unconditionally. And then I cried. I told myself that I didn’t know how I would support and love him unconditionally day to day, but that I would do my best to not crack under the pressure or at least enough so he didn’t know it. And then I sobbed some more.

As we moved toward healing for our little family unit I was hit with the reality of how bad it was, how truly traumatizing. We’d been living in our own war zone and his mental health issues have set the pace for the family for a very long time and now that he is stable I’m struck by how PTSD is a part of my reality.

I’m grieving. I’ve many wiped tears away thinking about the time and opportunity lost. I’m so sad about what he lost and how his mental stability has affected all of us; but mostly our daughter. It’s not easy as a parent with the responsibility of helping your child with mental health issues, but being a 6-8 year old, watching your brother go through it? And with her own health issues? During the entire time that he was deeply suffering, she was going through her own personal health crisis; failing kidneys and transplant. I (reluctantly) signed up for this? But she had no choice.

While I am celebratory going into his four years of kidney function next month – something that has gone right for him – I am not without sadness and grief and fear today. I have learned that it’s entirely possible to live with some fear and with complete gratefulness at the same time. I’ve learned that while we are looking at the immediate future with hope, we’re stuck with the knowledge that there is a long road for all of us.

I’ve learned that there’s a rarely spoken about force that guides a parent to get you through what you have to go through for your child and it’s the ability to think it’s not that bad when you are in the middle of something that is that bad, but it comes at a cost. I’ve learned that loving all the truths about my son means acknowledging what has been lost. It means that there’s a part of me and our family that will never be the same. Time and opportunities we’ll never get the chance to retrieve.

Julia blogs at Kidneys and Eyes and has a social networking site for special needs parents called Support for Special Needs. She also writes for magazines and websites about special needs parents and Aiming Low, where she gets to (luckily) write about funny stuff.


  1. It sounds like you truly have been to war. I can't imagine.
    There are days when I wonder how I could possible endure another day, let alone another 20 years (or more), especially when there is so much uncertainty in the future. Somehow, we move forward.

  2. Yes, all so true. This is why I spent most of last fall and early winter stuck in a deep depression. After almost two years of acute instability, my son Carter was, finally, relatively stable. As relieved as I was, I was also suddenly faced with the emotional reality of all that we had endured. In the midst of it all, a sort of survivor's denial protected me from seeing the big picture.

  3. I can understand the fear and feeling of being unable to help. We placed our foster daughter in a mental health facility the week before she turned 13 years of age. At the time, it just about destroyed me to walk away and leave her there. Thankfully, a month of medication introduction and adjustment and we were able to bring her home. Not the same child that we took to the facility; a changed child. For the better in some ways (her highs and lows were not so drastic) but also with the knowledge that bipolar disorder was and is a part of all our lives forever. For some years she coped reasonably well, although she pushed boundries in an horrific way through her teenage years. Now, nearly 21 she realises that this disorder will be her lifelong companion, that in addition to her medication regime, she faces challenges with friendships, relationships, work, etc. And unfortunately, at this time I am the one on whom she takes out her frustration and anger. Being a parent of a child with a disability (be it physical, or mental) is a tough road - (we also care for an 8 year old with a terminal condition/and disability.) Thankfully, God gives me the strength for each day, although sometimes I don't ask for it in advance! Still thinking that I can do this! I pray for each family I read about who struggles and am glad when solutions present themselves to make the journey more attainable.