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Parents of lost babies and potential of all kinds: come here to share the technicolour, the vividness, the despair, the heart-broken-open, the compassion we learn for others, having been through this mess — and see it reflected back at you, acknowledged and understood.

Thanks to photographer Xin Li and to artist Stephanie Sicore for their respective illustrations and photos.

parenting after loss > minor wig out at doc's office --┬ájustified?

I took my beautiful baby girl in for her nine month check up today. She did great, and everything seems to look fine. Her pediatrician noticed that one leg is a teensy bit longer than the other... I think it is because she scuttles on one knee and one foot instead of crawling on all fours. But the doc sent me to x-ray, she wanted to be sure my daughter's hips are developing properly. So, after dressing and undressing this poor little girl for the 3rd time, The nurse has me lay her on the xray table and then, after everything is in position, she says to me, We have to take one shot with no protection (lead vest), it's gonna be right over her ovaries, is that ok with you? Uh, ummmm, yeah... wait, why did you wait to tell me this until we have her half naked, squirming and crying on a cold metal platform under a giant scary machine?? Oh, ok, fine, just take it. No. Wait. No! it is not ok! Wtf? Her whole life flashed in front of my eyes, till I imagined her crying in a waiting room in her thirties, wondering why the f she can't get pregnant when everything else seems so "normal" and healthy. Here I am thinking how far I have come, not to be having PTSD in a doctor's office then bam. Perhaps it would have been just fine to take the x-rays. Will the pediatrician call me back tomorrow and tell me oh, it's just minor radiation, it's really no more than an airport scan..... Tainted by my seven year odyssey to be come pregnant, the loss of my first beautiful daughter to a heart defect at full term, what can I claim to know about the harmfulness of x-rays? or GMO's? or anything else in this perilous fucking planet we inhabit? I was really mad, and of course I felt bad for being short with the nurse as I yanked her almost-patient off the xray table and stormed out of there.

I am new to this world of the living child. Am I being crazy? Will I be one of these ridiculous over-protective moms because of my scars? Anyone have any wisdom on this?
November 22, 2016 | Unregistered CommenterLi
Li,
I don't exactly have advice for you but, I want you to know that you are not alone in feeling this way. My Son just turned nine months as well and I often wonder if I will feel overprotective like this for always. Often when I have particularly strong anxiety I describe it as feeling of impending doom which is something that I have struggled with in varying severity since my first child died. I have been paranoid about every little thing which had resulted in a lot of anxiety and a lot of doctor appointments. I think our Mama instincts are just in overdrive because of our past traumas, we just want to and have to do everything possible to keep them safe whether other people see it as rational or not. I think you made the best choice with information that was available to you at that moment. As a side note, my son had to have his hips checked when he was younger but they did it by ultrasound, is that maybe an option for your daughter? Then there are no worries about radiation. Just a thought.

I think as time goes on we will only continue to learn how our scars will shape how we handle the world. And I think it's almost certain that they will continue to shape our lives forever, I just try to take it day by day and do the best I can.
Love to you.
November 22, 2016 | Unregistered CommenterAmanda
Oh, Li, I'm storming out of there with you! It never ceases to amaze me how casual health professionals can be at times. They're probably so used to doing the x ray they figured it was a rhetorical question. They forget that patient there might be their 500,000 one but it is your precious child to you. I hate it when that happens. And I have the urge to wear a huge sign over my head saying My Daughter Died, please find your humanity before discussing treatment and procedures! Maybe I should make a t-shirt...
Anyway. I'm with you. It was unacceptable to give you the information so casually and with so little time to process it given it was not an emergency. I would complain.
As for being over protective with our living children... I wonder the same. My son is five months old and every time there's something not quite right I fight with myself for ages to make the decision to call doctor or wait it out in case I'm being paranoid. It's a horrible feeling not knowing if you're psycho or tuned into your instincts!
No advice, just sending love....
November 23, 2016 | Unregistered CommenterGaby
Li, I would have done the same thing! You most certainly are not crazy. I'm living every day with more and more confidence in my gut-feelings and mother's instinct. If you felt it wasn't right, it wasn't right. I have very little faith in the medical system and find it frightening that they so rarely feel the "need" to give us the risks and benefits of ALL medical procedures before we consent.

I remember being pregnant with my first rainbow and a doctor telling me I needed to take a blood thinner after his birth. I questioned whether it would pass through my breast milk to the baby and she replied "I can see you are a very intelligent person who wants all the information so I'll print out the medication insert and give it to you" which didn't flatter me, instead made me think "wtf? I shouldn't have to ask! Why isn't this information given to EVERYONE as routine?!"

Keep your head up high Mama, you are doing a great job. x
November 27, 2016 | Unregistered CommenterShelby's Mum
Oh my goodness Li, you are not crazy! I would have wigged out too...I think you were right to say stop, no and go back when you're calmer and not in PTSD-induced freeze/flight mode....I agree with Amanda, I would ask about doing an ultrasound first to see if anything else is needed. My son had some hydronephrosis (diagnosed via ultrasound when I was pregnant) and they just did two round of ultrasound, at six month intervals, to check on progress...But I had a similar wig out--for a different issue. My son is on the small to average side for everything except his head. His head is in the 95th percentile. This has been the case since the anatomy scan. I have a huge head too so he gets that from me...Anyway, one of the docs was worried about it, that he might have hydrocephalus or something so he ordered an ultrasound of the head (fine). The results came back with a tiny area that seemed a little enlarged so he wanted to do an MRI. He adds casually, "at your son's age, that requires sedation, so there's a small risk." I'm like: "a small risk? I've already had a baby die, no." And he says "but then we could visualize the whole brain" (and I'm thinking "you idiot can play with your toys but not with my kid"). So I say: "can''t we do another ultrasound in a couple months and see if anything has changed. And the dumbass doc says "of I hadn't thought of that, that's a good idea." So we did and they didn't find anything and I'm not going back to this doctor ever. What an idiot...Anyway, I think if they had found something, I would have just gone for a second opinion somewhere else. I'm not taking risks with my son. I don't care what people think. Hugs to you Li.
November 30, 2016 | Unregistered CommenterAB
li,
its interesting that loss moms (myself included) judge themselves harshly, or at least worry about it, for being overprotective.
like, its a bad thing. I think its just a thing. being a parent. sometimes, we are protective, sometimes clueless in our permissiveness or newbie-ness or just being a dumb dumb and not thinking things through.

we had our daughter, who is nearly 3, at the ER last week and she needed to get an IV. there was no choice, so I let it happen, but I was questioning myself because the nurse who wanted to do it clearly wanted to to get more experience on a child's veins. I am watching her and thinking "why am I not asking for a more experienced person to touch my precious only living daughter? why am I allowing this inexperienced person to invade my child's body, possibly causing in-needed pain?". I felt self-conscious- like, they would think I was a bitch for requesting someone else. is it better for me to be a bitch and overprotective? or is it better to be quiet and hope for the best... I did that before and it had some pretty bad consequences... you know? damned if you do, damned if you don't.

how can loss moms NOT be protective or paranoid or overly concerned about their living kids?! we suffered a traumatic loss. nothing really takes that away, it can feel different, but I think the base-line trigger to be a little freaked out in situations like this is totally normal and fine. cut some slack!

when we were there, they wanted to get a uyrine sample, and since my child is not toilet-trained yet, they just kind of said, like, no big deal 'oh, ok we can catheterize her'. what?!! that is where I put my foot down. I got bitchy. no joke. I said "look, I can do the IV, I can do the ultrasounds, but there is no way I am allowing her to get a freaking catheter. nope. no way.". they told me as the mom it was my prerogative to make that choice. ok, so moving on. when they left, i wondered why i made such a big deal. i have been catheterized and i have negative connotations. birth. infertility. d&c. all negative. painful. invasive. and i look at my weak, exhausted tiny little precious pearl on my lap, who already is probably blaming me for this experience (!) and almost laugh that i would consider letting that happen to her, when it wasn't really absolutely necessary- they were just doing the routine check-off screening stuff that happens at the ER. anyway, it felt twitchy and bitchy and i almost felt like i had to apologize or explain. but i didn't.

i seems obvious as an after-effect of losing a baby or child, or really any person that you love. you are more careful. you know the other side of the coin. its ok. i think that "regular" parents can be overprotective and what can you do? i wonder if i would be overprotective if my first baby did not die? or would i be haughty and clueless and "whatever!" about the welfare of my kids? i see parents like that. drunk at the playground. no helmets on bikes. no seatbelts. riding lawnmowers. boats with no life jackets. playing near traffic. wtf people?! seriously, i have seen with my very own eyes these very behaviors, all in my little town. don't even get me started on pregnant ladies... the ones who know the risks and do them anyway just to show that they thumb their noses at these so-called risks. omg, my own sister did this- even knowing my history, she rode a four-wheeler up thru her entire pregnancy... wtfucking f. its a little different, and off on a tangent, but just because some people choose to fall on other parts of a spectrum, doesn't mean where *you* are is wrong.

way better to err on the side of caution. you are the advocate! you did exactly what i would do- when presented with a situation where you suddenly feel cornered and without info, it is panic. wig out! that's what i think... you did the right thing.
November 30, 2016 | Unregistered Commenterss
Totally reasonable (and admirable) reaction. It wasn't an emergency, which means taking time to think on it, maybe get a second opinion makes perfect sense. After I lost my second son 7 months ago, every time my 2 year old is sick, I panic. I decided I will not be at all shy about calling the doctor too many times, paging nurse on call in middle of the night, etc. I pay for health insurance, and this is what it's for. Even if it's just to give me peace of mind. Good for you!
December 1, 2016 | Unregistered CommenterAbby