Struggling With Thanks

I’ve taken a couple of days off from blogging about Kate’s story. I am going to blame the business (busy-ness) of Thanksgiving Weekend. It’s an interesting day Thanksgiving – typically a time spent reflecting on what you are thankful for. For the abundance you have in your life and other fortunes in the past year – not of things, but ‘blessings’ like family and good health, Taking pause from a busy life schedule and being mindful of  what is most important in your life. It can also be a time of gaining perspective as you reflect and ponder on all of the things to be grateful for.

I have to say that I feel a bit of pressure at Thanksgiving. That by the virtue of having a medically fragile, medically complex, special needs child, I in particular am counted on to ‘count my blessing’ and be thankful for what Kate is and not focus on what she is not. I really dislike feeling pressured about this. It’s not that anyone has said it to me directly, “Kate is doing so well, you have so many things to be thankful for”. It is something I have set myself up for in my own mind – a feeling of pressure to reflect on and count my blessings, and to be thankful that Kate is feeling well, when I still carry a lot of sadness, frustration and disappointment about a disease that is ravaging my child and is absolutely unpredictable in its nature. It almost makes me feel like I want to hide, or keep my ‘all is well’ smile pasted on my face this particular holiday long weekend so I can fit in with the rest. It makes me feel guilty, like I am not thankful for what I have. That I don’t recognize that it could be worse, and that many other families face even greater challenges than ours.

I rarely break down in public when it comes to Kate. To what end would that help things, let alone how embarrassed I would be with myself once I had recovered my composure. I also don’t want to appear to be constantly complaining or sounding like I am not thankful for what Kate has achieved. It makes it hard sometimes to be part of a conversation with parents who are discussing their ‘typical’ kids. I wonder if they notice I am quieter than usual, or that I may not be contributing to the conversation, or perhaps that I have wandered away from it.  It is also sometimes hard to hear from others about ‘how well Kate is doing’, that it is ‘hard to believe she’s sick’.  I appreciate it when Kate is well, and I know she has a disease that she will never outgrow or recover from.  Sometimes in the middle of such a conversation, my frustration with our own situation will show through and the friend(s) I might be talking with at that moment will see a brief moment of that ache I carry within me all the time. The ache that carries the health, therapeutic, educational, language, emotional, developmental, recreational, social, diagnostic worries and concerns about Kate. At certain moments, triggered by a word, a thought, a moment, the ache becomes a sharp pain in my stomach, a stinging in my eyes, a dull ache in my heart. It is always with me, that ache of sadness, worry, fear – and it makes it difficult for me to be thankful. It flashes as a sort of anger and (still) a feeling of profound loss when I know I should be thankful.

Why I am not thankful

thank·ful – feeling or expressing gratitude

I am not thankful for the challenges Kate has. I am not thankful for the losses she has endured. I am not thankful for the diagnosis of a rare genetic disease that has no treatment or cure. I am not thankful for the day-to-day struggle with her health. I am not thankful that I am on a first name basis with more than 20 different doctors and specialists in this city alone. I am not thankful for the day-to-day struggle to advance Kate developmentally and watch her be passed time and again by her ‘peers’. I am not thankful that she couldn’t keep her balance as she walked across our backyard lawn this afternoon. I am not thankful that her strength, stamina and balance will be compromised for the rest of the life. I am not thankful that there is more to come, that her disease is progressive and degenerative in nature and we are unsure of when it will strike another significant blow to Kate.

What I am thankful for is Kate. I am thankful for my daughter. I am thankful that I am her mom, I wouldn’t give that job up to anyone else. For that, I am thankful.

And this is where perspective comes in, because for all those things I would give anything to change they help me to remember that there are things I appreciate:

ap·pre·ci·ate – to value or regard highly; place a high estimate on

My own strength and stamina

That we took a chance on Kate and gave her the opportunity to hear when others discouraged the surgery.

That we never gave up on our search for a diagnosis.

That we have advocated for her ceaselessly and have managed to assemble a pretty spectacular medical team.

That we have kept her safe.

That we have the courage to continue to advocate for her in all areas every day.

I am appreciative for those days where I have absolutely no energy and feel like I cannot keep this up, and I still do.

I value the small gains – like yesterday when Kate and I took a walk through the leaves and talked about the fall leaves. As I talked about the trees, Kate signed ‘tree’ for me.

I appreciate that Kate can walk.

I appreciate Kate as a happy and loving child.

So instead of feeling like I need to ‘give thanks’. I’ll focus on what I can appreciate. And won’t apologize for not feeling thankful.

Julie

2 Comments

  1. I cried when I read about Kate signing “tree.” I know what those signs mean!

    Ben signed “rain forest” yesterday because he wanted to go to the Rainforest Cafe — not sure if you have those in Ottawa.

    I think I had many of the same feelings you had on Thanksgiving. I think all of those feelings are natural — it does create pressure when a ritual tells us we “should” be feeling a certain way. It’s funny because when I read your blog about your 3 hour jog to meditate on what you’re thankful for, my initial thought was: “Why can’t I get it together like Julie and be more thankful!” It’s amazing how we’re always comparing ourselves to others — or to what we “imagine” others’ experiences are.

    I really like the way you articulated your feelings about the words thankful and appreciate, and where they fit for you and where they don’t.

    And I so get that ache that is always there — the sadness, worry, fear. This is very beautifully written. I can’t wait to see what you write next!

    Reply

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