Autism | Sensory Processing Disorder

How We Live Our Days

I have had a sinking feeling for weeks now. It wasn’t any one thing that triggered it – it was more the slow progression of many things, one after the other, building over the course of days and then weeks. It finally culminated in last week’s meltdowns.

We are sliding backwards.

It happens. It has happened to us before. It has happened to other families we know. Many of you have left comments sharing that it is happening to you, right now. So I know it is not out of the question.

But…

We were getting used to things being easier, not so intense, not so destructive, not so rigid. We began to relax, to exhale, to forget.

We also began to schedule more, take on more daily requirements, travel to see family, eat less strictly – because we were doing so well. Maybe we got a little too ambitious. Maybe we forgot a little too easily.

It was almost imperceptible at first – a minor irritation over the schedule not being just so, small noises suddenly being an issue again, staying in his room under the lycra sheets for longer stretches of time. Then, it was obvious.

We are sliding backwards.

I am fighting feelings of fear and panic…like it’s happening all over again. The stress and the chaos, the damage and the pain – the little boy I love so much feels like he is slipping away again.

I have spent a lot of time the past few weeks bouncing back and forth between total denial, general anger, and waves of depression. Because, you know, there are stages of grief, and this is grievous.

More than that, I have spent a lot of time wishing it was different. Or worse yet, thinking that it needs to be fixed, needs to get better, needs to be changed, before we can live again.

And then, I came across this quote –

“How we live our days, of course, is how we live our lives.” – Annie Dillard

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“How we live our days, of course, is how we live our lives.” – Annie Dillard

I teared up reading it, not only because I was exhausted and emotional and a little crazy, but because I knew I had not been living like it.

How we live our days, our hours, our moments – they all add up.

These moments, even the ugly ones, are all blending together to create the tapestry of our lives.

They ultimately will make up my boys’ childhoods. They ultimately will make up my motherhood.

I don’t want to wish them away. I don’t want to resent them. I don’t want to sigh and moan and groan and think that I am somehow getting a raw deal.

I don’t want my first thought to be, “I can’t do this again.” I know better. I know that playing it all out and expecting the worst never serves me or my family well. I know that the real beauty, the real grace, the real living happens only in the day-to-day, right now.

No matter what, this is the day that the Lord has made. I may not always understand, but I pray for the faith to trust. God has shown us over and over again that He is in our midst.

He is in our today.

Oh, for grace to trust Him more.


How We Live Our Days

 

 

 

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13 Comments

  1. Oh that feeling of loosing it all and not be able to do anything – just watch I happens…. That emptiness, sorrow and feeling of despair, it is undescribable. And even you know it will end up good again, it is very difficult to stay happy and calm.
    May the Lord shower you in his mercy, give you tons of strength and wisdom and let your soul rest in his healing power.
    Prayers and love from Dorthe
    PS. I takes shorter and shorter to restore for every time we slide backwards.

    1. I needed to hear that today, Dorthe – that the timeframe gets shorter and shorter each slide. I have seen that to be true here too, but I forget that in the moment. Thank you for reminding me and for always encouraging me in Jesus. I am grateful for you.
      Love,
      Shawna

  2. Oh yes. That feeling of being blindsided, even though we know (intellectually) that these hard times will reappear…Sending-up prayers for a peaceful heart and calm days ahead! You are not alone.

    1. Thank you so much, Kristin – for the reminder that I am not alone and for the prayers. I needed them both today!
      Love,
      Shawna

  3. I wanted to take a second and just tell you how thankful I am for your posts, as in all of them. The road of motherhood is hard but add in the component of special needs (for lack of a better word) and motherhood feels nearly impossible even on our best days. You have reminded me several times that we are fighters, survivors, and overcomers… We may want to collapse beneath the weight but yet we press on. Thank you for being you, not painting a pretty picture and leaving the rest of us feeling inadequate or condemned.

  4. I agree with Helena, thank you for blogging!!! I know it must not be easy, at all, but your words are so honest and Christ-honoring, and have been a HUGE encouragement to me as I walk this path too, about 6 or 7 years behind you. As I am telling myself, may I tell you, His Grace is Sufficient to meet ALL our needs. As you said, Oh for grace to trust Him more. Love you Shawna!

  5. I know I read many people are leaving comments about the same feelings, slipping backward, regressing…I hate to call it. It sounds so final. I know this, every time I think about losing my boy, that he is slipping away, further and further away. Then I remember the promise I made to him at 6 months old when I knew something was wrong but the Drs were still so reassuring, the promise of “wherever you go I will come in and find you. There will be no place that you will go that I won’t come to even if just to be where you are so you are not alone, I will find you, I will love you because of not instead of and I WILL BRING YOU BACK TO ME”. Go forth mama, find your boy, bring him back to you for this is where he needs to be, his heart next to your heart, where it all began.

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