It seems some of the best conversations I have with my husband are at the dinner table after everyone has left, the car or in bed as we both stare at the ceiling before we finally allow ourselves to sleep.  It seems we’ve had plenty of these moments the last few weeks.  Moments of intense conversation and just talking it out – putting those feelings out there.  I have to say that raising a special child and having her pass is something that has matured our relationship quite a bit and in some ways has made us stronger.  We are better communicators and share our feelings more often, some deep and very real. Some days it feels good but others…well, hard for me to listen, digest and share myself.

Christmas night as we both let out a sigh of relief that it was over we then reflected on why.  We missed our little girl so badly this past holiday season we couldn’t wait until the dreaded day was over – not for our kids, but selfishly for both of us.  My husband opened up for the first time in a long time sharing some of his deepest feelings, how he’s felt since that day and what goes through his mind every. single. day.

A brief topic of our several hour conversation was our guilt.  Our intense guilt for possibly missing a signal or sign she wasn’t feeling well.  I wondered if I was so excited for a weekend away if I didn’t see some obvious indications of her being ill.  He wondered if being exhausted from the work day if he came home and through the normal routine of medications and feeding if he too missed some sign of illness.  We both, for the 100th time, ran through the days preceding her death – her bowel movements (always important in the special needs world), her eating habits, and her behavior. She ate well, she played, she had BM’s – she was outside all day before she died walking around enjoying the unseasonably warm weather.  I remember someone emailing me after she died telling me they drove past our house and loved her smiles and seeing her walking freely around the grass.

On Christmas night as we lay there talking, I think for the first time we admitted to each other how we think about this almost daily – personally beating ourselves up for maybe not seeing something, anything that would foretell her future.  As we both agreed, it was so hard, she was nonverbal and didn’t have a way of communicating with a 12 month old mentality.  We hated laying her down to sleep not knowing if she was seizing or not because her seizures could only be seen on an EEG.  I always said that I held my breath when I walked in her room in the mornings. We also often didn’t know she was sick until she was VERY sick or until she stopped eating or going to the bathroom.  But even knowing all of this doesn’t make us feel better as parents and the heavy feeling on our hearts and minds.

On Christmas people near and far wrote us cards and notes to be placed in Lydia’s stocking.  My husband sat on the chair Lydia use to rock in and with tears streaming down his face read every single one.  He told me that night that before reading those notes he felt like everyone had forgotten her, that his little girl who he loved so dearly and wanted to hold so tightly forever was only the glimmer in his eye and not others.  However, after reading ALL those beautiful notes about Lydia or our family they helped him realize how many lives she touched…without ever uttering a word.  It made him so proud of his sweet pea.  His sunshine still shining bright in the eyes of others.

For reasons of privacy I won’t share everything we talked about Christmas night but at the end of what seemed like hours of conversation my husband said something to me that struck a chord – it was “I’m emotionally exhausted everyday. I come home and lay my head on this pillow and am not only physically but emotionally exhausted from thinking of her  -everything about her – all day.”   It hurt hearing it.  It still hurts as my eyes start to water even writing it.  To know someone you love, like your husband, is hurting that deeply, that much.

Death of a child gives you a numbness you never thought you would or could feel.  It puts these heavy gates around your heart as if to keep it from hurting more than it does now.  It takes your emotions and puts them on a shelf never to be used unless your upset about the loved one you miss so terribly.  You’re guarded from getting excited about anything because should you look forward to something it may all come crashing down around you…in an instant and be gone.  Forever.

As we embark upon a new year and what should be exciting new adventures of building and moving into a new house we both shared what death has done to us. As we drove in the car to yet another home improvement store my hubby said “It is hard to be excited for this house.  For some reason I don’t feel like we’ll be there long.  I hope not to another tragedy but it doesn’t feel like it will be our forever home.”

Shocked we both felt very similar I concurred as I’ve felt like there is a lack of excitement on my part too. It is certainly not from ungratefulness but just my numbness I think in full force.  Maybe because she won’t be there.  Or maybe because the carpet of life has been ripped from underneath our feet so many times we don’t know what to trust.  Maybe because we’ve learned that at the end of day a house is JUST a house, a car is JUST a car but a LIFE is not one you can replace…ever. And joys aren’t in what we have but in WHO we have.  We’ve lost our who.

Hard to believe in just 6 days it will be 8 months she’s been gone.  To us it feels like yesterday.  When I go to church or remember the cemetery service it seems like it just occurred.  However, when I try to remember some of the memories they seem so far away like she’s been gone forever.  I often wonder how I’ll feel at 1 year, 3 years and 10.  Will the ache be as prevalent?  Will I cry a little less and laugh even more?  Will the gates guarding my heart open a little wider each and every day, month and year?  Time doesn’t heal all wounds…I’ve learned that, but hoping time makes each day less numb.

One thought on “Numb.

  1. Sally, as incredibly sad as your words are – and heart wrenching – they are also so raw and real and NECESSARY. It broke my heart to read that Tom thinks people have forgotten her. I know that writing is cathartic and I’m so proud of your strength in continuing to do it. This is your story – this is your reality – and from your words, people will continue to understand and grow. I have not forgotten Lydia – and I didn’t even get the luxury of meeting her. From her – and your family – we have all grown. I wish I could wrap you in a hug. Keep going… xo – Jen Farmer

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