(So why aren't I ecstatic?)

OK, let me start with this:

This is the first photo EVER of Malachi supporting HIMSELF while standing. This was after a stream of firsts the day before, including sitting completely by himself for a few seconds while I let the cat in and several cognitive steps, such as touching his ear when I asked where it was.

These amazing things all happened midweek. So why has it taken me so long to blog about it?

Well, I could say I was busy (true) and that I'm working on bringing my novella to paperback form (also true), but the truth is I was confused by what I felt about Malachi's first milestones in a very long time. I posted the photo on Facebook and was startled at the immediate and overwhelming reaction of my friends and family. Friday night, I showed the photo to a woman I've met only a handful of times and she started crying. Crying.

I was happy about it, but I wondered why I wasn't as overjoyed as they seemed to be. Aren't I the person who should be the happiest?

Thinking about this in my car yesterday, I began to cry tears of joy that quickly turned to the not joyful kind. The situation bore too strong a resemblance to the many, many times I drove to the NICU with tears streaming down my face to see my children — one with undefinable brain damage, the other with serious lung problems — plugged into wires in heartless plastic boxes.

It is curious how easy it is in the midst of tragedy to imagine that things will never be good again, yet in the midst of blessings it is equally easy to imagine how it could all be snatched away. It doesn't quite seem fair that joy can be so easily sullied by fear while pain is fairly immune to solace.

As I thought about these things, hoping other drivers didn't notice how upset I was, Adele crooned over the radio: "It isn't ooooooooover."

That's when I realized why I wasn't as happy as I probably should be. It's not over. We have so much further to go and the gains Malachi has made are not assured to be permanent and, and, and....

And as soon as I identified why it was that I couldn't permit myself to be fully happy, I knew how silly that was. Yes, it's not over. Yes, we have a long way to go. But yes, today my boy has made me so proud and yes, today I'll take my joy where I can get it — straight up. No rocks, please.


  1. Anonymous1:26 PM

    I have felt the same way with my daughter and her milestones. And because I'm mostly concerned with her cognitive development, instead of enjoying the fact that she pointed to my eye when I said eye, I constantly ask myself, "Does she really know 'eye' or was that a coincidence?" If only I could embrace her achievements rather than question them. I think I'm preparing myself for the chance it might be coincidence, and she might not be the smart little girl I dreamed of once having. I can't allow myself to be let down, it's too painful. On the other hand, I can't rejoice with her development. Are we torturing ourselves or depriving ourselves of parenthood?

  2. Totally, I'm totally the same way. It's only been recently that some of Malachi's actions are unmistakable reactions to something I've said. Lots of people, including his PTs, think he will be just fine cognitively. But I only have Jaden to judge him against, so to me it seems like he is very far behind — he doesn't talk or sign or bring me books to read or say "mmm!" when I give him something he likes to eat. But how much of that is just physical? How much is that he's just a different person? How much is that he's concentrating on his deficient areas so much that he doesn't have a lot of mental energy left for the other stuff that he'll get around to eventually?

    It's a hard line to walk between abject pessimism and unrealistic optimism.

  3. Shasta I had to comment onthis one because this is a common yet unerving feeling that I've had and seen other families have as well. The feeling of not allowing myself to fully rejoice in the miracles of our son was something that held me prison for a couple of years. I eventually conquered this like any other challenge that seems overwhelming or that I believe has a long way to go in the future. I took the baby step approach of putting my mindset into what happens today ONLY and starting with that in how I celebrate even the smallest of success. This is what I've done for different jobs, long term projects, businesses etc etc. I thought I should treat the way I think about my child differently in someway and focus in on what's next but I had to let that go. Letting go of that never satisfied feeling has paid off in drives. You've heard the saying, It was like a weight lifted from my shoulders! Now we look at our son after almost 8 years now in have more happiness than the first couple of years. We celebrate all successes big, small, or otherwise. We celebrate the back steps and the pin of apnea challenges because it identifies my son as to who he is. You know he has a twin sister who is perfectly healthy but we cannot compare to our son because he is his own person now. We've given him life and he now thrives from the changes in our mindset. Again we're at almost 8 years old now so it was a process to get here but thank goodness we did and we have two entirely different children that bring us joy in all things they do. No more milestones, or pressures put on him. We continue to work with him and what will happen is up to his maker. God bless your little man for a HUGE HUGE accomplishment! He should be a proud little guy! :-)

  4. Anonymous3:49 PM

    He looks so proud to be showing mama what he can do! I'm glad you had a camera close by.

  5. I have found myself thinking, when Nina finally gets something, "it's about time" and then I miss the significance of the event. Then I have to mull it over and over, until it sinks in, settling in my heart, "She got it! She finally got it!" Sometimes, it is a journey to get there. But how sweet it is when we marvel in what took lace.

  6. Anonymous8:54 PM

    I get what you are feeling. I miss moments of significance, and then I second guess whether they are really significant. True of my non special needs kids too.

  7. Shasta - that is amazing! I am so happy for your little man! That is a wonderful accomplishment. Relish in it!!!! I hope that Parker will be able to show me that someday soon.

  8. Shasta, I also wanted to tell you that I finally made my own blog inspired by you! Yes, it is not much at all yet - very basic. I am still learning the ropes. But I am excited! Thank you for motivating me and making me laugh (and cry) with your posts. Check out my very simple one at

  9. Shasta - I'm the same way. Because like you said, "it's not over". There is still so much work ahead. Most of the time now, I only blog about Ben's milestones and dont' share them on Facebook. For some reason, the overly positive responses bother me. It almost seems like the commenters think everything is fixed...whereas it really isn't.

  10. Ed: Thanks for your wonderful perspective; I really appreciate it. I like how you gave concrete steps towards what you did to achieve that mindset. That said, I think you're also right that because your son is 8, you've had a long time to wrap your head around his disability and also — what I think is most important — you basically know what it is. A lot of my pain seems to result in the fluctuations between what I think is going to happen from one point in time to another. The not knowing is harder than accepting what is.

    Faith: I know, I'm glad I had my iPhone in my pocket!

    The rest: Thank you! I'm relieved to hear I'm not alone on this. I really thought I must be way too pessimistic to not be overjoyed at Malachi's accomplishment.

    BTW: update! Malachi just commando crawled about four feet today! Amazing! Christmas has come early!

  11. First of all a big congrats to Malachi! I can totally understand your hesitation though to get too excited or to do any type of celebrating! Your heart probably wants to do one thing but your mind is thinking another. I'll be praying for you guys and continued progress!

  12. I totally get what you're saying, Shasta., but then I look at Malachi's face and he just looks so proud of himself - his pride makes me smile. I'm glad you were finally able to feel the joy Malachi's mom deserves to experience.


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