It is only Tuesday.

When the developmental pediatrician, neurologist and the geneticist all agreed that Edda was significantly delayed in all areas, physically and mentally, I figured, OK, well she’ll probably never learn graduate level fluid dynamics (I never did learn it either – but at least there was a cute guy drinking coffee who always sat in the row behind me), but we’ll start today and slowly teach her how to do everything, first how to walk, next how to walk on grass, next how to climb stairs, next how to run and then, finally, how to dance like Michael Flatley. It was going to be forward – going ahead – making inroads – being the last person in the race (you know, the incredibly stubborn who person spends 24 hours running a marathon because she has no legs, but is dragging herself on a skateboard with her hands…) but at least going forward one step
at a time.

When the geneticist told us which genetic abnormalities they were going to test for, I sat in the doctor’s office and I promised myself that I wouldn’t look up any of the diseases on the internet until the test came back positive for a particular syndrome. Because what’s the use of suffering in advance? But I’m very good at suffering in advance. I love to think about what might happen and then get all stressed about it – on a small scale, it might be worrying about hosting a dinner party for friends and on a large scale, well, it could be the various hideous ways we could all suffer and die, one of which might be in a graduate level fluid dynamics class (low Reynold’s number! scaling arguments, people! Argh, falling over!) Well, I think that promise to myself might have lasted a week? Maybe a week and a half? So now I’ve spent some time looking at some of the various syndromes and basically freaking myself out about what the future might hold for Edda. It turns out that some of these syndromes are degenerative, which means as she gets older, it could get worse. Which, of course, is a bummer for everyone involved.

I don’t want to imply that I’m sad or stressed these days, I’m actually pretty happy. Edda’s walking and becoming steadier on her feet, we are trying to keep her hand out of her mouth because we’ve been noticing that she’s been using it less and less to pick things up and we want to keep the functionality in the hand and I think she’s learning (not to speak, but to understand) a couple words (although I’m always the skeptic). She’s not suffering in any way and so I’m also trying hard not to suffer too much as well.

4 thoughts on “It is only Tuesday.”

  1. I know you know this already but there is no “right ” way to feel about your situation. Of course you are going to look up the diagnosis Edda may get. That is perfectly normal. And, responsible in my opinion. Basically, when any thing negative is occuring re: our kids it sucks. Be it watching them struggle to walk or worse, or watching them get their heartbroken in a million tiny pieces, not being able to get a job, struggling in a math class, not being invited to a birthday party. The list goes on and on. When it comes to our children reason and logic and rationality take a back seat to the love we have for them. That is how it should be. I had no idea how hard it was to be a parent before Joshua. I am a much better daughter now that I have a child. You do sound happy and you look great as do your kids. Edda and Vince are beautiful! I know edda is having struggles as are your whole family but she is happy and that shows in the pictures. You are doing a great job Doris. So is Jeremy. Just keeping loving them all you can. That is about the only thing we can control in this crazy world. Sheila

  2. Doris, life is precious in any form and shape. Edda is lovely and I am sure everyone in our family will do the best to cope. But, Jeremy and you are up in the front line doing the hardest things and for that Mom and Dad are really very thankful. Just try our best and hope things will get better. I am also sure Edda feels the love from friends and family memebers no matter what happens.

  3. As Sherah said that Vince and Edda are both lovely and beautiful. We all love them. I know it is not easy to be parents. You have to work even harder with Edda’s conditions. Life itself is very complicated. So keep it simple and keep it going. Good thing is that Edda walks now. So let her use her hands and legs as much as possible and do not worry other things. Of couse, it is easier to say and harder to do. “Do it” is more precious since it is hard to do. Looking the photoes, Edda is a very happy girl and no problem if she is bit slow. I still think she will be OK.

    Love always,mom

  4. I did study fluid dymanics in college, but that is another story. And I should say I was an Art major…The pictures are great and Kiki’s report on her visit and how my mother would have hated how organized and hedge-trimmed Singapopre is made me smile. I can see where it is good for you, although we wish you were here in Austin. Just so we could hug you and talk, and have an margarita…
    Love to all,

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