The first few weeks here at the hospital after Felix’s diagnosis were hell. Watching every dream I’d ever had for Felix’s childhood crumble, one after the other.
But things have been better these last few weeks.
Most of all, because he’s been doing so much better. If you can look past the central line in his chest, the feeding tube in his nose, and the fact that he’s in isolation, he seems like a pretty normal and happy baby. We cuddle and play with him. He has favourite toys and favourite ways of being held. He interacts with us and really wants to learn how to crawl.
But we’re also adjusting to our new life and our new identities. And it’s not all bad.
I’m no longer a crunchy mom. I’m the mother of a hospitalized child with a rare, life-threatening disease. I have no say in what, when, or how my son eats (which, for the record, happens to be 90 mL of Neocate formula, every three hours on the dot, via NG tube), what he wears, or where he sleeps. This was a very difficult adjustment to make, but it’s my reality now.
And there’s some liberation in having no say. I don’t bear all the responsibility if something goes wrong. And I can focus my energies on other aspects of his well-being, like making sure he’s getting enough snuggles and exercise.
And I’m a part-time caretaker to Lydia now. I’m no longer her entire universe, and she’s no longer mine. That gives me more time for Felix, Ben, and other aspects of my life. It’s painful when I think about it, but don’t cry about it every day any more. I know she’s happy and having lots of fun with her grandparents, aunts and uncles. She has dance parties every day with her Auntie Maggie. She plays outside in the snow with her Uncle Joseph. She got to pet their new calf the day after it was born and she’s making friends with the dogs, especially Arwen. She’s doing great.
I’ve even been toying with cutting my hair (like, really cutting it . . . as in pixie short) to reflect this new identity. I’m not the woman I used to be or would have chosen to be. But I’m still an okay person and a good mother.
Now that we’ve gotten really settled into our lives at the hospital and Ronald McDonald House, we rarely even think about how weird it all is. We’ve got a routine that involves getting plenty of sleep at night and eating three times a day. We usually manage to get out at least once a day together — usually to a book store or a yarn shop, or to get groceries or lunch.
We don’t even have to think about what we’re doing when we “gown up” to enter Felix’s room — it’s natural and automatic now. Every time we go to touch him we sanitize our hands and put on a new pair of gloves. Feeding Felix is almost effortless: opening up the syringes, checking the placement of his NG tube with the stethoscope, and measuring out the formula don’t phase us anymore. It’s just part of our daily routine.
My life no longer revolves around food/cooking from scratch, as it used to, but rather around making sure Felix is well and comfortable in his room. We eat to survive — whatever is available. I don’t think about GMO’s or pastured meat or good fats — I just eat what’s there (in the RM House dining room or the hospital cafeteria) and what’s appetizing.
It gives me a heck of a lot more time to think about other things. I’ve been able to pick up hobbies and read books I’ve never been able to consider before — like crocheting and fiction. It’s kind of nice to get into these things, honestly.
Life in the Moment
We have no idea what’s ahead for us.
We can’t make plans beyond a couple of days in advance because we have no clue what next week will bring. All it takes is another fever or cough or bad blood count to bring everything crashing down again.
We don’t know if or when we will ever take our son home (although lately things are looking really positive. Maybe in a month or two!). We don’t know whether he will get into gene therapy (though we had a meeting on Monday and found out we are definitely on the waiting list.) Until recently, we couldn’t even bring too many days’ worth of clothes into his room because we never knew where he’d have an IV in his body (in his foot, his hand, his scalp) so we didn’t know what kind of pajamas he’d be able to wear.
All this has forced us to live for the moment.
For the first few weeks I felt perpetually sick with worry, thinking about his future. But these days I don’t. I can’t think about his future because I have absolutely no idea what his future holds. It’s a waste of energy to worry about it.
I wake up every morning thinking about the day at hand and nothing else. And lately, the days have been looking good. So I focus on that.
A Gentler Love
Over the last few months I have had to come to terms with the fact that I will very likely outlive my son. Whether it’s in a month or a year or twenty, there’s a good chance I will have to say goodbye to my baby before I go.
I have always taken it for granted that Lydia will always be there. That she will live a long, healthy, productive life. Of course, there was no way I could actually know that this was true and I still don’t. But I felt like I did.
I feel like I have always had a death-grip on her as a result. I CANNOT lose her. I CAN. NOT.
But it turns out I don’t necessarily have a choice.
This experience with Felix has shown me how little control I have over my children’s lives. And I’m even starting to see that I would be able to survive their loss. It would be horrendous, but survivable.
My grip on Felix has been a lot gentler as a result. I love him so much. But I can’t hold him in a death-grip. I have to be prepared to let him go. I will love him the best I can in the meantime, but I can’t force him to stay.
It’s a gentler love, in a way. He doesn’t belong to me. I know this now.