This is a post that was the inspiration for my blog. I did not have a blog at the time so I posted on FB. It felt right to re post it here. For the record, right now is a good time and the joy outweighs the grief. For that I am thankful.


I don't have a blog, so I thought I would just share this here. Thanks for hearing me out.

Let me start by saying I love my son. I am very proud of his strength, determination, joy. He is a sweet and wonderful boy who brings joy to all he meets.

Unfortunately, he is also sick. We found out when he was 6 weeks old that he has epilepsy. We spent most of his first year trying to keep him alive. There was very little time for tears. We had to learn about oxygen stats, seizure meds, CPR, ER visits, learning to speak medical jargon to speed services in crisis, feeding tubes. We spent a lot of time on humor websites. We had a choice, laugh or cry and laughing kept our heads clear.

At 5 months we started a special diet to help control seizures. It was working! It also added to our work load. No time to cry. We have to weigh, measure, track, read, create new recipes and test them. Then the ear aches came…and ear tubes…then glasses, and learning about vision therapies to add into his physical, occupational and speech therapies.

My son is almost 3, and he is amazing. He started crawling last month and I nearly cried. He is happy, starting to respond to some simple signs. Most importantly, he has not seized in the last year! (Knock wood) I should be happy, right? I am but, I am sad too. There are so many things he can’t do yet. Walk, talk, eat solid foods, push a button with a single finger, say Mom, say Dad, or recognize how much we mean it when we say I love you. These things scare me, because I have no way of knowing if I will ever see them. I fight hard to believe I will. I have to. But at the same time I grieve.

I grieve the child I thought I would have, the mother I thought I would be. I feel guilty for grieving because he needs me and part of me is distracted by the things I don’t have, I hope to have and may never have: Afternoons teaching my child to bake cookies; Days in the backyard planning our garden and planting seeds together; Making art, teaching him to draw; Walking in the woods; Riding bikes.

Some of these thing I know we can do, or will do…in time, but friends with children his age or younger are already doing them, with ease, and simple joy. They crawl up onto the counter to help mommy cook. Then they walk over to their play kitchens to practice. After a bit they look mommy in the eyes, and offer her make believe coffee. They giggle and laugh and play with their friends. They fight and get mad, cry, ask for hugs and laugh when it makes it all better. I try not to dwell. I try to hear their stories and be happy for them. I try not to be jealous or sad. And sometimes I succeed, but always there is effort. I grieve ease. Ease of joy, ease of play, ease of conversation, ease of tears.

That sounds funny, ease of tears. It is true though. I miss feeling sad, crying for a bit and letting the feeling pass. Now I am afraid to cry. There are too many tears that have been held back. I am not sure if it would be a bit or a torrent.

Now for all you friends and family, who will read this, please don’t try to protect me from your good news. I am happy for you. It is just a bittersweet happiness weighted by my experiences. One day I will be ready to say I am glad for my journey, for all of my luggage, but right now, today…I wish I had a lighter load.

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