The unknown is terrifying. The anxious, helpless feeling of not having a diagnosis is debilitating. You have no control. You have no power.
You walk by a giggling baby saying, “Mama” at the grocery store. With a punch in the gut, you are reminded that you haven’t seen your baby smile in three weeks. The clerk asks how your day is. You briefly debate mentioning that you were holding your crying, seizing baby in your arms just that morning, feeling powerless and decide, instead, to say, “Great! How’s yours?” You then wait until you’re in your car to let the sobs escape and the tears stream down your face.
Any “little” thing is a trigger- a tipsy toddler walking about, a friend’s nine-month-old saying their first words, a monthly milestone birthday, a friend’s social media post announcing one of her baby’s many firsts, brand-new and hand-me-down baby toys that are collecting dust in the garage…
You know there’s something terribly wrong with your baby, but you don’t know what exactly. Your mind is constantly worried and imagining worst case scenarios mixed in with a little ray of hope. “Maybe he’s just slower than other babies”, you think positively. “What are the chances it’s something rare and devastating?” You feel powerless.
You avoid parks, play dates, and birthday parties because you’re not strong enough to handle the stares and the questions. “How old is he? Oh, he must be sleepy!” You don’t want to give away his age because any mother of a young child knows that a 10 month old can hold his head up, smile, look at your face, and respond to their name, and when they realize that yours isn’t the awkward glances and sympathetic smiles begin. Since he doesn’t have a diagnosis, there is no easy way to explain his situation without making others uncomfortable. For fear of being the party killer, you avoid these situations entirely.
You take very strategic monthly photos to post on social media, careful that he “looks normal” and that no one would be able to tell that he’s different. You fear that people are going to judge and blame you. After all, it’s believed to be a reflection on the parents when a child isn’t meeting milestones. “The mother obviously did something wrong when he was in the womb”, or “His parents aren’t reading or talking to him enough”. In your heart, you know this isn’t true, but you can’t help wondering what you did to cause this in your child.
You hold your seizing baby in your arms as tears stream down your face. How are you going to do this day after day? Then you realize that all you can do is love him. That is your power.


  1. Hi I'm mom to Savannah who is also a CDKL5 survivor. This post really hit me as I've had the same emotions when my daughter was experiencing struggles related to her seizures and her developmental delay. I honestly don't know if these emotions change, or if you just become used to them. I still have so many triggers when I see other children near her age doing things that developmentally she would typically be doing. Just know that for them the way that they view the world it's so different than us and they do experience joy they just express it completely differently. I don't feel our kids need to smile or laugh to really be happy or content. They are unique and they express themselves in a special way. Just remember that God gave special people to special Mommys. Sending love to you and Bennett.��

    1. Thank you so much for reading. I agree so much that our children are happy without having to smile or laugh. I believe that the feelings do change and evolve over time. This was a very tough time in my life and I’m happy to say we are no longer in this place. I don’t feel sad or triggered anymore by typically developing children who are doing things Bennett can’t. I will write more about how my journey has evolved in this blog. Hugs to you and beautiful Savannah. Our babies are true earth angels that can teach the world so much.❤️

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  3. Beautifully written, my beautiful Grandaughter has CDKL5 and as her grandmother I feel the same feelings granted nowhere near what parents must feel like. We cherish every smile she gives us and when we hear how she laughs out loud it totaly fills our heart . When She looks straight into our eyes for those brief momement means the world to us . We just have to stay strong and support each other ❤❤


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