Wait and see...

Don't you just hate that term? I do. :-( It riles me. But it's also an unavoidable part of life. I'm not a patient person. Far from it. So to sit back and wait, is soooo difficult to do. I read the stories of some mothers that are pregnant with spina bifida babies. And they're told to "wait and see". There's absolutely nothing else to tell them, because they really, literally, have to wait and see. Until their baby is born. Until the baby's back opening is closed. Until the baby starts cruising around. Until baby needs pottytraining. Wait. And. See.

Those poor poor parents. To wait for months, not knowing if your baby will be okay. What the extend of the damage might be. How baby's back will look. How much pain baby will be in after the operation. How long baby will be in the hospital. So many unknowns. So many fears and sadness. I can't imagine what those parents go through during their pregnancies. I heard many of the mommies say that pregnancy was the hardest part. I believe them.

I have my own waiting and seeing to do. I think all parents have to "wait and see". You don't know what the future holds. None of us knows if our children will reach adulthood safe and sound. But having a special needs child makes that "wait and see" just so much more difficult. There's so many added worries with a special needs child. Even with Mr N and his epilepsy, I don't worry as much as his dad does. His dad is worried if he'll be able to drive one day. With our appaling and sometimes non-existing public transport in SA, it's difficult to lead a full life if you can't drive.

But I digress. About the wait and see. Well, I have to wait and see if my youngest child might just develop symptoms of tethered cord. There's nothing much else I can do. Chances that she has a tethered cord is very, very slim. And I don't really believe that I should worry about it. So it's not going to influence my day to day life with her at the moment. But one day, when she's around age 2 or 3, she'll potty train. And I know I'm going to worry. Very much so. As I did and still do with Monkeyman. Pottytraining with Boeboe went so smooth. She caught on within 2 days. Two days of accidents! Just amazing. I was so proud and impressed and happy and relieved. Her symptoms of tethered cord wasn't clearcut. It wasn't like she had no control whatsoever. That would've been easier in some ways, because then the drs would've agreed with me sooner that something is wrong.

She had about 1 accident a week. And absolutely NO bowel accidents. For years. Only when she was 5, did I start to think there's something up. That means, for TWO YEARS we all thought her NORMAL. Yes, she had accidents, but that's NORMAL for children age 3 and 4, not true?!?! Mr N had accidents until age 4! And yes, Monkeyman still have accidents, both nr 1 and nr 2 accidents. And he's well on his way to age 5. Do I think he has tethered cord because of it? No. But does it contract my heart in fear everytime he does get an accident? Absolutely.

So theoretically, we won't know if Peanut has tethered cord until she's age 5 or so. Because she might have accidents after pottytraining, and she might not. And if she does, it might be normal and it might not be normal. Only at age 5 would we be able to say "yes, she's completely continent", or "no, she still has accidents". And diagnosing a tethered cord at age 5 only is risky. Very risky. I believe Boeboe would've been MUCH better off if she was operated before age 5, because her nr 2 accidents only started at age 4.5. So we might not have lost that function. But to operate a child for tethered cord because they have one accident a month?! So even if Peanut has accidents, would she get help in time?

It's easy to say "wait and see". But the logistics of what that might entail...it's difficult. We can wait and see. We have to. We don't have a choice. But what if we wait and see and it turns out too late to save bowel function like it did in Boeboe's case? What then? But alas, we don't have a choice. We can try to be proactive by getting an ultrasound, but I've read up on it and I'm not sure if it's worth it at this point. They miss so much with it in any case, will it really make me stop worrying? Boeboe's tethered cord wasn't even picked up on MRI. Chances that it could've been picked up on Ultrasound when she was a tiny baby...is slim to none.

Something interesting. I watched an old video of Boeboe when she was in NICU after birth. Her dad was filming her very first bath when she was about a week old. The nurse was drying her, helping me. And on the video you can hear me ask the nurse "what's this on her back, is it okay?" or something to that effect. I forgot about that, until I heard it on the video. Unfortunately it's not filmed, her back. But I do remember what bothered me. I noticed it a few days after birth when I was allowed to change her nappy. There was a tiny dimple or bump (can't remember precisely, I seem to remember it was a shallow dimple). But what bothered me and prompted me to ask, was the colouring of it. It was yellow. A shiny yellow. Clear as the sky. Very obvious. It wasn't a bruise or anything I've seen before. Just a small yellow mark on her back. The nurse of course dismissed it as nothing. So I ignored it. It must've faded with time, I don't know when. I'm pretty sure it wasn't there around age 1 or so anymore. But it does make one think, doesn't it?

So yes, we have to wait and see with Peanut. Her back might be fine, or maybe one day I'm going to say..."yes, her butt was crooked at birth but we hoped it meant nothing". But, let's hope that at age 5 I can rather say..."phew, thank goodness she's pottytrained and has no signs of tethered cord!!"

Something else I was thinking about. I wondered why is it that when a mom mentions her baby's birth defect, or a medical diagnoses on the internet forums, people always say "it'll be fine". They give virtual hugs and comfort, and then says "don't worry, baby will be fine". Is that what a mom wants to hear? Because I don't. So maybe I'm the exception to the rule here? When I say "my daughter has tethered cord" I want people to say "oh my word, I'm so very sorry. Poor little girl. Wish that didn't happen to her. Her life must be tough in some ways." I want people to commiserate, to understand, to support and to get it. I don't want to hear "she'll be fine". I know she'll be fine. That's not my worry! My worry is this and now. I want people to get it that at THIS moment, I'm worried. At THIS moment, I struggle. Or that my daughter is struggling. That we're in pain, at THIS moment. I know we'll be fine. I'm an optimis at heart. Even though I'm also a big realist. So even though my logic can tell me the probable (possibly bad) outcome, I'd still see the good afterwards. So when I complain, I don't want to hear that we WILL be fine ONE DAY. I want people to understand that at this moment, I need to hear how awful it is. How horrible. How horrendous. And then I can accept it, get my optimism together and move on. But alas, I guess I'm in the very minority of parents that wants to hear how awful things are when I complain. Seems like most people just want to hear "it will be fine".

Enough for one day. :-) My baby will be fine, that I know. Even if we have to wait and see for 5 years if she'll be fine with or without a tethered cord.