“Got my own mind
I wanna make my own decisions
When it has to do with my life, my life
I wanna be the one in control”

-Janet Jackson

I tripped and fell while holding my daughter this morning.

It was as scary as it sounds. Every bit as shocking as I have dreamt for years it would be. As a man with a physical disability, I have always wondered about my instability and how it would affect my ability to care for my children. When Megan and I got pregnant, that fear became real and consistent. It was the largest concern before she arrived.

Throughout the first 5 months of her life, I have stumbled here and there but never actually tripped and fell. I am usually so hyper-focused when I am holding her that my stability increases.

And yet this morning, on my way to the couch to feed her, I tripped over a blanket that was left on the floor. Amelia was in my left arm. As I was headed down, instinct clearly kicked in because my left arm tightened around her and my right arm went out to break my fall on our coffee table.

Amelia didn’t drop, although her head did bump into mine pretty hard. She started crying. I instantly started repeatedly calling out, “I have her! I have her! I have her!” so that Megan in the next room would know the most important information. Amelia hadn’t been dropped. I quickly got up and sat on the couch. The baby looked fine. I put the bottle to her mouth and she instantly stopped crying and went about eating breakfast. I went about the process of breathing, snapping out of shock mode, and starting to absorb the four thousand thoughts running through my head.

These thoughts were, to the best of my honest recollection:

  • I’m the worst parent.
  • Do I even deserve to be a parent?
  • It wasn’t a fault issue, it was an accident.
  • I don’t care, it was my fault.
  • It’s a man’s job to protect his child.
  • It’s my job to teach my child that a disabled man can care for his child. Bumps and all.
  • Do I honor Amelia by not carrying her consistently?
  • How does a disabled parent decide what is safe and what is not for their care of their children?
  • Can I even control any of this?

And that brought me to the bigger picture here: control. And the complete lack of it that I possess these days. In retrospect, it is the hardest and the best part of parenting so far. The sheer and total lack of control. I can’t determine when she will sleep and when she won’t. Sure, there are patterns of repetition that create semblance of schedule, but she sharply waits for the very day that I outwardly acknowledge the success of a desired pattern, and completely jumps off board. I can’t predict her smiles any more than I can her outbursts. I can’t seem to always find the right way to hold her or lift her up that prevents her from flailing just the wrong way as to stop my heart. And I sure as hell can’t seem to ever get her to chill at the precise moment when I need to sit down and decompress. I have control over nothing. She has taken that away from one of the great control freaks of our time.

And yet, in my stillest of moments, I must admit, it brings me absolute joy. Like being force-fed the medicine you need and didn’t ask for. My sweet Amelia has let me off the hook from trying to control it all. She has gifted me moments of release from my lifelong addiction to manipulate. It is freeing. It is light as a feather. Even though the dark circles under my eyes are vast, the focus of living moment to moment is awake in me. On the daily. And that applies even, if not especially, to our fall this morning. I couldn’t control tripping over that blanket any more than I could control the instinct I possess to hold her tight and break the fall. It’s life. It’s beautiful and it’s bumpy. And about the only thing I could control this morning was my attitude towards the event and towards moving forward.

The attitude. I have CMT. I am part of the Tribe of the Funky Feet. Despite all efforts not to, I fall sometimes. And that is not going to change. All I can do is try to walk with caution and care. Especially when I have that sweet smiling child in my arms. And when I do fall, I need to show her that I will get up and dust off and continue on my path. And thus, may the falls be few, and the smooth strides many.



14 thoughts on “Control

  1. Awww, Jonah, beautifully written! I love watching and listening as you grow in your parenthood with that beautiful girl. And your beautiful wife!

    Loss of control has always been the reality. The illusion is that we ever have control!

    I also have to chuckle as you gain more of grasp of how we lived with Mark and Eric.

    All our love,


  2. I am crying as I read this blog. Do any of us have control over life and what it brings. I am a new grandmother at 73 years old and dealing with a spouse who has Parkinson’s. I too have the physical disability that Jonah has. I cannot control any of this and yet I get through all of it. Life throws you uncontrollable punches but it is how you adjust to those punches that describes the person you are. You dearest son are one of the outstanding examples of strength in life


  3. Jonah- you are far too hard on yourself. We don’t need to have a disability to have worries about always being able to completely protect our children. This is life- always something unexpected can happen to any of us. The important thing is that your daughter knows you love her completely!


    1. Thank you, dear Jonah, for your honest and deeply moving account. I remember, to this day, the time I was pinning on Dahlia’s cloth diaper (ancient history!), and instead of pinning the diaper, I stuck her; omg, she screamed— it upsets me even now to recall it . Parenthood— and life — no one could ever prepare you. I do know that you and Megan are amazing parents— and that Amelia is the luckiest of all!


  4. Jonah, as I read this post, I weep. I weep because when I was 35, my unplanned gift that I ever received came to me (to us!). I feared that I wouldn’t be able to protect that lovely little jewel due to my less than perfect body. We made it through intact, and by the grace of god, that wee one who was given to me has grown into a strong 29 year old young woman. She also has CMT, but I like to think that she has learned the strength to live with it through my example, and thankfully through my not injuring either of us!


  5. Thank you for this glimpse into your life. It’s nothing unusual to feel unable to control life’s twists & turns. The beauty is in understanding that in the end it’s going to work out just as it is supposed to. Love to you & your precious family❤️


  6. Jonah, how beautifully written. Welcome to Parenthood. From the day they are born Our job is to keep them safe and so many times it is out of our control. Amelia is so beautiful and precious and I know that you are the best dad ever.if I get to come out this fall I hope we can get together so I can give her one big hug and a kiss. Being a parent is nerve-wracking and scary but it is the most joyous job I have ever had and I’m so blessed to be able to have a wonderful son.


  7. Dearest Jonah: Who would have ever believed that the young boy that played with Sam (Sammy) for so many years would have turned into the such a wonderful human being. I am so proud of the outstanding man, husband and father you have become in spite of the obstacles you have overcome. I never had any doubt that this would happen. Love ya guy, Sheila Passman


    1. Jonah, Amelia is so lucky because you are her Dad. Things will happen. Especially falls. The important thing is showing her how you get back up. That’s the best lesson a Dad can give their child. There will be stumbles in life. It’s all in how you deal with them that helps you get through them. You are awesome!


  8. Little Amelia is so lucky to have you and Megan, Jonah! This is so thoughtful and well written. Control is an issue we all deal with, especially parents. It never goes away, bu tI think you nailed it when you said how important your attitude toward it is. I remind myself so often that there are things I can’t control. I think we make up for it with all the love and other gifts we give our children. Love you and your beautiful family!


  9. Kelly Stahlman and I have a saying we call it the “shitty Mom” moments. The coulda, woulda, shoulda moments when you inevitably say to yourself “I am a shitty Mom”. But wait! It can be overcome with self-value when you reach out to your friends. Just like you did here. Rock on Dad! She is lucky to have you in her life. You are the best of the best.


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