Sunday, December 22, 2013

the next step

I've been in a fog these last few days. I'm somewhere between 'this may be the thing that breaks me' and 'God will use this in our lives and everything will be okay.' I find myself leaning toward the second option more than the first, which makes me feel better about my mental health.

I keep coming back to the idea that Ainsleigh's diagnosis is a small blot on the landscape of crisis we have traversed as a family, but then the thought of it consumes me over and over like a constantly cresting wave and I lose that idea of smallness. I think I just have to accept that I need to drown in the hugeness of it for a while. Once again I find myself rearranging images in my mind because the sweet little life I imagined for my child can't be everything I hoped it would be. And I know good can spill forth from loss and unexpectedness because I have lived and walked that road, but right now I can't see the good; I'm still lost in the forest of what ifs and whys.

The time of year makes everything a little more difficult. This season of joy and a weary world rejoicing is a cornerstone of my faith, but I haven't been able to find peace or rest within its borders since Charlotte died. I put my head down, place one foot in front of the other, and wait for the easing that comes with January and the new year. But that has landmines of its own as it marks the beginning of another year without Charlotte.

Last night I told J I'm at capacity. I simply cannot take anything else. The smallest things make me burst into tears. What do you do when you reach that point? I think it would be nice to go to Hawaii like we did last January, but that trip netted me Ainsleigh and I'm not willing to go through that process again .... Also: we can't afford it. Maybe I'll make us a little Hawaii in our house. Fill the bathtub with water, turn up the heat, let Bennett pour sand all over the floors. I think it would end up more toddler heaven, less imaginary Hawaii, but that might be fun for a minute or two.

I'm not sure I should share this post because I have this thought in the back of my mind that I'm handling this all wrong. Like I should be able to pull myself together, Like every other parent going through something similar waltzes gracefully with the notion of a changed life while I wrestle the beast of change and try to throw it out of our lives.

I've spent a large portion of my life feeling like everyone else has life and self sorted while I stumble around in the dark and fall to pieces. I've been trying to let go of that notion the past few years, because I know it's not true, we all fall apart for varying reasons, but when things like this come up the doubts creep in. I know how to mother a dead baby, I know how to mother Bennett, but this, this is different and three days in I'm already worried I'm doing it all wrong. There was a time in my life when I had self-confidence, but when Charlotte died a great wind rushed through me and when it finally left - though there are still traces left - a lot went with it.

I know this post has traces of my last one, but I'm processing via obsession and I have to leave some of it here so I don't drive J up the wall. He is able to focus on the now and be quite calm about things while I worry endlessly and try to think up every possible scenario that might come up as a result of this diagnosis. I will feel a lot better when we have a few appointments behind us and the beginnings of a plan in place. I always do better with a plan.

Christmas is three days away. I was going to put together a cute video of the kids and post it here, but I might not get to it. I thought it would be sweet for you all to see Ainsleigh in her Christmas dress, but the stupid thing has not arrived, and might not arrive, and right now I just don't have the energy for something like that. I may pull it off tomorrow or the next day, but if I don't Merry Christmas from our family to yours.


  1. I think anyone who can handle difficult news about their child's health and future without going to pieces now and then has no heart. Speaking as someone who does NOT sail through life calmly swatting at passing disasters, I think you are coping marvellously and your response seems completely normal to me.

  2. I'm wishing you moments of peace.

  3. I read your last post thinking, "my she's handling this well...a little too well actually. I think I would be a bit of a disaster, especially this close to Christmas..."

    I think sometimes that's what baby loss does to you. You feel like any other awful thing should be considered 'no biggie' in comparison. I think all of us go back to those first few days/weeks/months after our kids died when we'd hear some parent complaining about something wrong with their kid and you remember thinking at the time "well at least YOU have a kid to worry over...if it was ONLY ____ wrong with MY child, I'd consider myself lucky" Now however, when you finally get there you realize, there is LOTS to be stressed/down/unhappy/worried about, even with a normal child. Nothing is 'no biggie' when it comes to your kid. Everyone wants their baby's future to be certain and happy and worry free...and it's scary when you realize you can't make it that way, no matter how hard you try.

    I know I've done this so much since Kaia was born (alive! (mainly) healthy! normal!). I blew off the prematurity, the hip dysplaisa, the torticollis and need for a helmet to friends and family. I even blew off the sadness that she might (and seems likely to remain) my only living child. In my mind I thought it shouldn't matter. We should be totally fine since Kaia was alive and otherwise well (and to think back we came SO CLOSE to it all NOT being fine...) But here I am, Kaia's 2 and a half and totally normal....and sometimes I think I'm not fine anymore. I get angry and stressed more than I wish. I feel down with a lack of energy more than I thought I ever would. Parenting a two year old is HARD, but sometimes I think it's more than that. It's the sadness and disappointment and grief catching up with me. It doesn't sneak up on you when things are going well and you're having fun and handling it all. No, the emotional baggage of baby death is attached to your feelings of inadequacy, loss, stress, sadness, grief and disappointment. When you have something else that triggers those feelings again it always brings you back to THAT time, THAT grief, THAT loss. Life's kind of a bitch that way.

    So, no, it's not at all strange or odd to think that you might be freaking out a bit about unilateral deafness/hard of hearing (is that what it's called?) It's a big deal, a big diagnosis and something your family will be dealing with forever...but just like you have coped with Charlotte's death, and just like you coped with B's allergies, you will muddle through. You will struggle with it. It will be a challenge...but you will cope. You will feel strong and capable again...just maybe not tomorrow. Maybe not next week...but you will. We all will.

    Merry Christmas to you and the family, Angela. I hope some good, peaceful moments were interspersed in there amongst the worry.


thank you!


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