So we ordered some bracelets.
It's kind of fun, like we're all in a 5K, but we don't have to run anywhere.
We're all wearing them, Tani's class and teachers will be getting them at her early-birthday/farewell to school party on Tuesday, and friends and family that are far should be getting their package of bracelets in the mail this week.
I ordered them because I thought they'd be a cute distraction in the days leading up to surgery. I had no idea how much Tani would like them or how much love she'd feel emanating from them. I'm so happy I didn't listen to the little voice in my head that said they were a waste of money.
It's not easy to always remember, but many times, that little negative voice inside my head doesn't know anything, and really, he just hangs out here to drown out the other voice, the positive, happy voice.
We're focusing on happy, positive thoughts and kicking the negative guy out. He has no place here today or any day. We're also working on getting rid of a nasty cough that invaded our house last week because hospitals frown on people who are coughing everywhere.
We really like mottos around here. Our motto, which we've been using for the past couple of months, is Love and Light.
Love and Light. That's it, just Love and Light. If you show love, if you are kind, then the light can shine in. And with that light comes the One Above. There's nothing to worry about, because once Hashem's light is here, we can hand all our worries over and be done. Nothing to worry about, all will be well.
So Love and Light, people. Love And Light. I possibly should have had that printed on the other side of the bracelets, but really, that doubled their cost. And that wasn't the negative voice saying it was too much money, that was Mr. Practical. But Mr. Practical can stick around for now, he's an okay guy.
Happy Memorial Day, 2016.
And by that, I do mean to remember all the wonderful people who currently serve, who have served and who gave their lives so we can enjoy the freedoms we do today.
Who knew a pre-op tour could be an excellent way to bring more clutter into my house?
Hint: Not me.
But Tani, my child and a lover a good deal, seemed to know that intuitively.
Almost before the child-life specialist finished showing Tani the oxygen thing that has blinking lights that the doctor keeps on your finger during surgery, Tani was already asking if she could take it home with her.
I give Jenn, the child-life specialist, a lot of credit. She didn't even blink. She said Sure! I've never been asked that before, but sure!
It would seem that Jenn did not at all see what was coming. Because the next thing Tani said was, do you have a bag for that?
And just like that, my child scored herself a bag of goodies from the pediatric surgical floor. By the time we left the hospital, we were the proud owners of not only the finger thing, but of a pair of lion themed pajamas, the shower cap thing the nurses wear, a surgical mask, surgical booties, heart shaped stickers that measure your pulse on various body points, a doll, some markers, a Columbia-Presbyterian paper cup from the water machine, a very nice pen (that I really hope didn't belong to someone), a blood pressure cuff and a kidney shaped plastic bowl that one might use to throw up in. Except in our case, it's currently in use in the little play kitchen.
Here, three out of four, trying things on. There's always one outlier in this house.
I think we might have our theme for next Purim.
I get it.
She has the worst job in the world. Phlebotomist at a children's hospital. Drawing blood from squirmy kids all day. I get it. I do.
But being snarky with my kid? Even if I'm the only one who caught the snark, even if it totally went over my kid's head and she didn't hear it at all? Not okay.
So I was snarky back. It wasn't right but it felt good. And it got her to back off.
We'd just spent the better part of the day walking through endless hallways from one appointment to the next, being extra nice to everyone because if I'm nice enough, my kid won't need surgery, right? The doctor will have to say, oh, these very nice people, they're just so nice, no surgery needed for them, right?
The last appointment we had, as part of Tani's pre-op appointment, was for blood work, which if anyone really thought it through, should be the first stop of the day because why should a little kid have to spend the whole day asking, is the blood thing next? But no one asked me.
The phlebotomist didn't really ask me either. But I told her anyway.
Tani sat on my lap and put her arm out so bravely, holding her package of Twizzlers as a treat in her other hand. She was pretty cool about it even though she really didn't want to be cool about it. And then she felt slightly panicky and asked for a minute. And the woman didn't listen to her. And she asked again for a minute, as the woman ignored her and tied the blue thing around her arm. And she asked again, louder. And again, she was ignored and the woman wiped her arm with an alcohol swab. I didn't say anything right away because I really didn't think, even for a second, and even though this woman has the worst job ever, that she wouldn't respect her patient. That she would ignore her. So when she asked me to hold her other arm so she wouldn't move it around, I said no.
I won't hold her other arm.
And then I said, she just needs a minute, so we're gonna give her a minute.
And the woman, who thus far, had not looked either of us in the eye, said, and just how long of a minute is she going to need?
In a children's hospital.
Honestly, what the hell?
So I said, her minute will last as long as her minute will last. Okay? I said that while nodding my head, with big eyes, and a wide smile but not so much smiling.
She rolled her eyes. But she backed off. I kept nodding and smiling.
I don't care what she thinks of me. You don't get to be a jerk in a children's hospital. Go work at Quest labs - that where all the mean phlebotomists work anyway.
Killing them with kindness didn't work in the first floor lab. So sad for all the people who work in that lab because that woman really brought down the whole experience for me.
Tani was fine, happily eating her licorice. But I really and truly wanted to hurt that woman.
Throughout the day, we had encountered one sweet nurse after another, a delightful x-ray technician, a caring doctor and a wonderful child-life specialist. Maybe that's why the blood draw is last. Maybe the hospital knows that once you encounter the woman who works there, you might start looking for a new hospital. Something to think about.
Either way, I'm happy to give you one chance to be nice to my kid, but really, you only get once chance.
It's been forever. If you're still here, you deserve an update, and quite possibly, a medal. I gave blogging a half-baked try this year but I just couldn't get it together.
But it's been been calling me back. It's always been easier to write and work out my feelings that way than to think and have to juggle it all in my head. I need to know it's on paper and once it is, I can relax because I don't have to hold it anymore. It's safe, and in print.
I think that many times, people look at other people through the lens of their Facebook page, Instagram account or, now that I am the mother of a child with a phone, their snapchat blah blah whatever. And other people's lives can look pretty darn good, even cover-worthy when all you see are smiling faces and beautiful dinners they've made and vacations they took.
I rarely post to Facebook anymore and even more seldomly post pictures of my kids because of a woman I vaguely know. She approached me in the supermarket one day last year and told me that she loved my blog and even though she really likes reading it, she almost always felt bad afterwards because she felt like her life didn't measure up.
I wanted to climb inside my shopping cart and hide my face. I was floored because I guess I always assumed that everyone knew that I always had dishes in the sink and that I never actually put away the folded laundry from the couch and that we really do not change the sheets on our beds often enough. At all. It's actually quite disgusting and I look back at my childhood and marvel at how my mother did the sheets every single Sunday. I honestly don't know how she did that; it takes us all day long to take the sheets off, wash them, dry them, put them back on the bed and then at least several more hours while we pretend that we think the other person will put the pillow cases back on the pillows and the blanket covers back on the blankets. It's an all day activity, all predicated on our not leaving the house because then who will move things from the washer to the dryer?
So after that, I really stopped blogging. And sharing. Because ugh, I didn't want to be that person that looked like she had it all together online when I never ever feel like I have it together. For goodness sake, I wear the same skirt every single day.
If I could talk to that woman today, I'd be sure to tell her all that, but I'd also tell her to never assume - because there is always always more to the story.
Everyone has a story that they might not be sharing with the whole world. We definitely have one.
We moved back to NJ from Florida this past summer and I've been driving my kids back and forth to school - a school that is far away-ish and the drive has been sucking the life out of me. Sometimes, I think all this sitting will literally be the end of me. As my excellent friend Jessica pointed out, "you know you're gonna die from all that sitting, right?" I know, Jess. I'm standing and typing right now.
The other half of me spends hours a day researching scoliosis and treatment options for my seven year old daughter. I've never named my kids on here before, but her name is Tani. And she's adorable. She gives me a run for my money more than I can ever possibly explain but I couldn't love her more if I tried.
We've known about Tani's scoliosis since her 5-year-old well check, and we've done it all to try and stop her curve from progressing. We went from Pilates to myofascial release, from a very inexpensive hanging bar in the doorway to a mucho-expensive scoliosis rehab program a bunch of states away. We went from doctor to doctor and have seen places of NJ that we'd rather never see again. Philadelphia too. And now, here we are.
When she was first diagnosed and we got an appointment with the doctor who literally invented the only new scoliosis surgery that has come out in the past 50 years, he told us that she was not a candidate for it because she was too young. Devastation.
He then told us that our best option was to have surgery for traditional growing rods. These rods will straighten out a spine and then are lengthened every six months until a child is grown, with surgery.
I thanked this very sweet and kind doctor, (so sweet and kind that he did not charge us for the consultation because we came in from out of town to see him and he was out-of network for us) and walked out of his office, trying not to vomit.
A few weeks later, that same doctor reached out and told me about a new surgery called Magec Rods (they are magnetic and quite magical, hence the name). This surgery is hugely amazing for kids with early-onset scoliosis. Instead of surgery every 6 months for years on end, these new rods are implanted once. They have a magnet attached to them and the rods can be lengthened from outside a child's body, via a second magnet that the doctor holds in his hands, every 4 months or so. Total game changer.
But here's the kicker. Two years ago, it wasn't available in the US.
Fast forward to now and it's been FDA approved (not that I put much stock in the FDA, but that's a whole other story) and available in the US. And we are super grateful that Tani is eligible for this surgery. Super-terrified because surgery. And hospitals. And hand sanitizer. I hate hand sanitizer. But also super-grateful.
So we're scheduled for June 3rd.
Lots to do before then.
I'm not ready and I'm not set, but it is go-time.
I hope you'll follow our story with us as it unfolds.
Are you a Mom?
Of course you are,
your shirt is dirty :)