Well it has finally happened; ‘Buddy’ has gone to school by himself. There are so many moments in my life that are typical plus. What exactly does that mean, ‘typical plus’? It means that every parent frets about someone else watching their precious child. Every parent worries that something bad might happen. Or even something good, that it will go great and they won’t need us quite as much as before. Every parent secretly looks forward to not being responsible, for just a little while. To have a cup of coffee or tea in a quiet house with the sure knowledge you will not be interrupted for feedings, diapers or owies. All these things I know are typical. Here is the plus.

When I send my son off to school I have to worry if someone will be distracted for a moment and feed him something not on his diet, something that will make him seize for months, something that will put us in the hospital for weeks, or worse.

When I send him off to school I know he is in good hands (I am lucky in that regard). He has caring teachers who really get kids with special needs. But these women have an incredible burden. I have taught preschool and it is very challenging. These women are preschool teachers, therapists, nurses, dieticians. Yes, they have people who officially have those titles helping them, but they have to know enough to know when to call in help. They have to know enough to oversee the waiting periods. To keep these kids interested and challenged amidst all their various and plentiful health and development challenges. I have managed to do all this for one child, but they have to do it with 6, and they have my undying admiration for that. Still I worry that some crisis will happen in the room, and as wonderful as they are … I don’t really want to finish that thought.

When I send my son off to school I have to worry about his communication. He cannot talk or sign (much). ‘Buddy’ has opinions. He is determined and strong minded. It does not work to battle him. It is best to work with him. I am able to do that because I know him so well. He is potty training himself in part because I know the subtle grunt that means he has to go. Will they hear that? Will potty training revert? He is a happy boy because he is able to tell me with subtle cues and expressions that he is tired, hungry, in pain. Will they know what he means? Will he get sullen, or angry if frustration becomes a common thread of his day? Will he get bored and check out? Already he is not eating solids because I, who know him best, thought I could make him eat. He won that battle…for now.

I really just wish he could tell people what he needs. I wish he could move well enough to get out of the way, or protect himself from the everyday struggles of preschool social life. I wish I could put a protective bubble around him, and that brings us back to the typical. Every parent wishes they could do this. I guess I will just have to let him go out into the world. I will just have to do my best to use this time to restore my energy so that I am better prepared to support him when he comes home.

And now, where is that cup of tea?

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.

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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.