What If It’s Getting Better?

CVS helpers

I haven’t written in over a week – not for a lack of things to write about as there is always something going on around here – but out of fear.  Things are changing a lot – slowly but significantly, and I’m just not sure what that means for me, for my family, for my life, for this forum.  This blog has been a place of solace for me, a place to feel surrounded while still wrestling with my solitude.  It’s a place where I think people come to read, to listen, to pity, to relate, to appreciate their own lives, to understand mine, to support, to understand, to share, to just…be there (be here?).

I don’t know where this blog goes if I’m not wallowing, if I’m not feeling lonely, if it’s a day without a major struggle…if there is no blood, no sweat (there are always tears). Is anyone still out there?  Do I need the drama, the stacked odds, the tragedy to make this worth reading?

Where do we go from here?

I was lonely last week when I wrote that post – I was in a dark and dreary place emotionally and I just had to let it out.  The response I got was staggering.  People emailed, texted, sent me messages through Facebook, tweeted, called, and came up to me when they saw me at pickup or drop-off at Parker’s school.  They were touched.  They related.  They hurt for me.  Ironically, I never felt so understood.

But sometimes, I’m okay with my life.  I accept it.  I find joy in it – maybe not in the same places other people do – but it’s there.  It’s what I’ve been given and there is so much good in it. My kids are adorable, my husband is amazing (not perfect, mind you, but we’re encroaching on Father’s Day so now’s not the time). I have so many supportive friends and family around me, and I’m finally learning who is worth hanging on to and who to walk away from. But do people want to hear about the happy, satisfied parts of me?  Or is my identity – my essence – only that of the forlorn mother and woman who has been repeatedly beaten-down by what life and fate have handed her?

What if there is “normal” sometimes? Is there anyone out there who wants to hear about that?  Is the “getting to normal” as interesting, as enthralling as when I’m writing about being so far out on the periphery of it?  Is this what I’ve become? Created?

Owen has been talking more – saying words we didn’t know he knew.  A good portion of the time he still sounds like the subtitles of his speech would come out like someone is reading a Boggle board, but he has come so, so far.  And it’s amazing.  And Scott and I look at each other and constantly say “Did you hear that?” after he has uttered some new word we had no idea he could say or understood the meaning of or was able to use in context correctly.

I gave him a large mug yesterday with some herbal iced tea and he went to pick it up and said “It hell-wee”. And I knew he was telling me it was heavy – regardless of how garbled it came out.  And I got choked up because I didn’t even know he knew what heavy meant.

I told that story to my cousin Wendy last night when we were out celebrating a good friend’s new baby and I said to her with a hopeful, quiet voice “I think he might be smart”.  And we sat there and cried together across the table and dabbed at our happy tears with our napkins. Because she knows how hard it is for me to hope for that.  How much of a question mark there is over where he is intellectually and what that means for his future.  Just a day earlier I heard my nephew say to my sister-in-law “I know he’s three and-a-half, but he acts more like he’s two”.  And he was matter-of-fact, not at all malicious, or mocking.  And he’s right.

But there might be hope.  There is hope.  And there are more words.  And there is so much more laughter.  And there is still crying and screaming – and some of it is from me and some is from the kids.  And some of it is normal and some of it is just our normal.

And I’m getting to know my son.

And I sit here and I wonder  – if there are days that I see the light at the end of the tunnel, will there be anyone there to watch it grow with me or is the darkness in my life the only thing that anyone wants to see, to hear about, to be close to?

If the thing that makes me feel so isolated starts to get better, is that when I will truly be alone?


  1. says

    I like to always think that life is getting better. It has to. That being said, you will only be freed from your challenges upon death. The only constant is change. Up and down and down and up. People who are genuinely interested in you will stick around to hear about your good times. We will cry with you, and smile with you. Serious blog posts tend to make me think hard, but posts recounting blessings and special moments leave me inspired. Both are good and equally important, I believe.

  2. Alanna says

    I love seeing some hope written here!! When I saw you all at the park, you all looked and seemed like you were having fun! Everyone needs a break from the tough stuff for a minute and I am glad you are getting it and even more so appreciating it:)

    • says

      Thanks, Alanna! It was wonderful seeing you guys too and seeing just how far our little men have come. Sometimes, it’s hard to hope that things are turning around, but so wonderful to be able to watch it actually happening!

  3. says

    i just found your blog and this post gives me hope. i adopted my daughter two years ago and we have similar challenges with her. she had a massive stroke when she was a baby, and we still have no idea what the future looks like with her. she is very delayed but making so much progress. so we are choosing to hope as well. i know how hard it is, especially as the delays become more obvious (with age). i look forward to reading more of your blog:)

    • says

      Thank you so much for reading, and just…being here, Christina. I cannot tell you how much strength I got from reading the stories (both good and bad) of parents who had been through the same unique experience we had with Owen. It was my tether to the ground in that first year and has continued to help me navigate emotionally murky waters. I am so sorry to hear about your daughter – I hope she meets and exceeds her potential. These little ones constantly show us how much more they can accomplish than we ever dreamed. Welcome, and I hope you gain something here… J.

  4. says

    the good and the bad, there is so much to say, to write, to share, it’s not just about the bad, is sharing the good that puts a smile out there, somewhere, to whoever is reading, keep writing, for you, for us.

    • says

      What a touching and heartfelt response, Lillaisa. Thank you for that. I began this blog for Owen, for me, for our family – and I am surprised and honored and awed at how many people think of it as something for them as well… J.

  5. says

    I was very touched, just reading this post and identifying with your excitement over Owen doing new things. When you have setbacks and disappointments, your readers will lift you up and when you have hope and progress to report, we will celebrate with you! I’ve read a few posts on your blog so far and this has been my favorite yet 🙂

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