May 1, 2013

Don't Panic

RH in the back yard
Next week I'm going through a familiar ritual.

I'll be gathering together a useless heap of distractions, gnawing my fingernails off, and waiting for hours that seem to have no end in the hospital's MRI waiting room.

I've been doing this for five years- almost six. I've lost count of how many times I've gone through these motions. I could tell you with absolute certainty how many times it's been, I have obsessive records. But I really don't care to spend any of my free time going through the grim details of M's early months after his diagnosis.

But this time, it's going to be different. This is another new waiting room. This time, I'l be waiting at the Children's Hospital.

You see, when she was about two months old, RH did this totally normal baby thing. She put weight on her legs. She seemed to really enjoy it. And then one day she just... stopped.

And really, that shouldn't be much of a cause for concern. So she doesn't want to put weight on her feet? So what? She still kicked like the dickens, she still put her feet in her mouth, what did it matter?

It became an adorable little quirk of hers. You'd pick her up, and she'd just stick her feet straight in front of her. It was pretty darn cute.

So at the six month check-up, her pediatrician asked if she stood at all, and I said she didn't.

She thought that was a little odd, and recommended that I call early intervention to have her evaluated. I did. When the evaluation came through, they recommended physical therapy for an hour a month. I thought it was laughable.

Then the nine month appointment came around. We still hadn't actually gotten started with her one hour
a month of physical therapy, and she still wasn't standing.

In fact, she wasn't getting to sitting by herself, pushing to her knees, crawling, or pulling up to her feet on furniture.

I'd been very aware of this. I tried to trick her into it on a regular basis. Doorway jumper? She wasn't interested. Exersaucer? Just a chair with a tray. Dance parties? Forget about it.

But her legs were obviously very strong. Whatever was going on, it wasn't muscular. There were a couple of explanations.

First, and most obviously, she didn't feel like it. There's no telling a baby what to do and when to do it, they just do what they want. So she didn't want to stand up, and why should she? Her sisters and I are more than happy to give her what she wants, she doesn't exactly need to work for it.

The second though, that was the kicker.

The pediatrician told me that because of M's history, she wanted RH to see a neurologist.

Especially because she had put weight on her legs, and then she stopped.

The pediatrician said not to panic, that it was probably nothing, but that she should be checked by a neurologist. I asked if she was going to schedule a CT or and MRI, and our doctor said no, whatever she set up would probably be something the neurologist didn't want. Murphy's Law, she said. So she should just be evaluated by the pediatric neurologist and they would decide what to do.

I held my happy, kicking, babbling baby on my lap, and sqeezed her, nodding and taking mental notes on what the doctor said. Willing myself to stay calm even though my stomach seemed to have relocated to somewhere behind my collarbone. I smelled her hair, and felt her unbearably soft skin, and I did not panic.

With my ears buzzing, with the words "pediatric neurologist," I went to the pharmacy. The inside of my head was an unbroken stream of don'tpanicdon'tpanicdon'tpanicdon'tpanicdon'tpanicdon'tpanic...

And I didn't. I kept my cool.

She's pretty cute, right?
I kept reminding myself that until I knew for certain that there was anything, anything at all, wrong with RH, she was just fine. She was better than fine, she was perfect.

When M got home, I told him frankly and without a trace of fear that I needed to make an appointment for RH at the pediatric neurologist. His reaction was predictable. Outright terror.

We both knew that M had the most common variety of childhood brain cancer. We both knew what it could mean to see those white masses on the scans. As frequently as his neruo-oncologists told him that there wasn't a genetic link, who knows? There could be...

But I didn't panic. And M didn't panic. We agreed- no reason for it until we knew that something was wrong.

We also agreed not to publicize it. We might be capable of staying calm, of keeping perspective, but we couldn't count on anybody else. We didn't want to unnecessarily frighten them. People don't know how to react to M's battle with cancer now, and he's almost six years from his date of diagnosis. So how would they react to information like this?

But deep down inside, my heart felt like an eggshell with a tiny crack- ready to simply shatter and collapse.

I had to schedule RH's neurology appointment for a soon as possible, and the only way I could get her an appointment even in the same calendar month was to take her to an outpatient clinic an hour and a half away.

And so, I dropped my big girls off at their best friend's house, and I drove the ninety minutes to the far flung regions of the 'burbs. Alone, with the baby sleeping peacefully in her car seat.

It was an unbearably long drive.

The pediatric neurologist was a lovely person. She was kind, and understanding, and utterly non-threatening. That was nice.  She did a much more thorough examination of RH than the early intervention folks had, which wasn't surprising. RH liked her.

Then she told me that she didn't think that RH had brain cancer, and I very nearly cried.

Instead, she said, she thought RH had a cord tether. I actually knew what this meant, a friend of mine has two little girls around the same age as my kids, they both had cord tethers.

So she told me to schedule a spinal MRI for RH as soon as I could, and to get a full blood workup and MRI of the brain just in case.

And if she's right, and RH has a cord tether? She'll need corrective surgery. Yes, on her spine.

And if RH is completely fine and there's nothing wrong at all and it turns out she's just a very stubborn girl who doesn't want to put weight on her legs right now?

Well, that would be even better.

The hour and half drive to collect RH's big sisters was dramatically shorter than the one to the 'burbs. But no less filled with anxiety and circular trains of thought.

Regardless of the MRI, the pediatric neurologist prescribed twice weekly physical therapy. That hasn't started yet. It's amazing how much red tape there is when you're trying to get involved medical services for your child.

That pediatric neurology appointment was about three weeks ago. Now? RH gets to sitting by herself. She gets to all fours. She army crawls.

She even stands if you set her in front of the piano.

I want to think she's just trying to give me a heart attack. That was taking her time, waiting to take these developmental steps in the grandest, most dramatic way possible.

I'll still be taking her to the hospital next week to get her MRI. I'll still be holding her until she's fully sedated and asleep, I'll still spend the next several hours staring blankly at my kindle screen and not taking in a word of the first book I've had the opportunity to sit and read for ages.

It's going to be a long day.

It's so difficult to know what I'm feeling at times like this. If I'm feeling terror, or relief, or even nostalgia. I don't know what the layers upon layers of stress are doing to me. I don't know if I want to allow myself to be lulled into a sense of security by her progress, or if I want to maintain my fight-or-flight reflexes and not be caught emotionally off-guard for bad news.

Rh is blissfully oblivious. She plays with her sisters, makes mad, creepy-crawly dashes for forbidden corners, shoves fistfuls of grass and dirt into her mouth. That's her job.

Mine is to worry. And simultaneously not to worry.

And to give her endless kisses on her soft, chubby cheeks and arms and hands, to tickle toes, and to gently wash the oatmeal out of her hair. To watch her sleep, and marvel at how much she resembles me, and M, and her sisters, and her grandfather. To feel dreadful when she cries, and to feel unfathomably happy when she grins at her daddy.

That much I can handle.


  1. Oh boy did this post bring memories flooding back to me! My daughter (now 3) went through the same stuff - MRI along with a host of other tests right around her 9 months mark....turns out she has major hypotonia (low muscle tone) - phew! She didn't walk until she was nearly 23 months old, and up until that point she was going through tons of PT - through our school district as well as the hospital. Hang in there - MRI's are scary no matter what you're looking/not looking for! Your being calm for the sake of the family (even though you're probably freaking out on the inside) will help everyone.

  2. I just found your blog via a post from Huffington Post. First of all, huge praises of thankfulness that your husband is doing so well!!!! Regarding your daughter - my daughter, who is now almost 22 months old, did not crawl until she was 14-months. Didn't even want to put any weight on her legs...screamed and cried if you tried to "force" her to kneel. At around 9-months the pedi wanted her to get x-rays, and early-intervention therapy...I decided to ignore their advice because she was developing just perfectly in my eyes. She only just started walking a couple of months ago (at around 20 months). She is now running everywhere and happily climbing on everything!

    I am not saying by any stretch that you should ignore the doctor's orders! Just wanted to let you know that there are other kiddos out there who are just going to be stubborn and do things on their own darn schedule, and no one else's!! :) I will keep you all in my T&Ps!!! Your little girl looks beautiful and healthy to me :)

  3. Oh my. I reading this with my heart pounding. I'm so glad she is going to be okay.

    I often keep things to myself until I know what's going on b/c I feel like I can keep it together as long as no one else is going to freak out.

  4. I haven't met you - but your voice comes through really clearly - so I feel like we've met. So, having felt like we've met, I am totally comfortable giving you some unsolicited advice (okay slightly uncomfortable): please, please do some self-care.

    You are taking such good care of your girls, and your husband. Please don't feel like it's too much of a luxury to take a nap, or ask someone to cook a meal for you, or drop off the kids and go for a date night, or, if you have a spare $20, get your toes done. It helps.

    It sounds like a really stressful situation, and it sounds like you are stressed out! Please take good care of yourself - be gentle with yourself. You've already been through so much... You will need your strength for this journey.

    Blessings upon you and your family.

  5. MRI can be scary for adults too. So glad to hear she's going to be ok. She's so cute and precious!

  6. man I loved reading your post, i am saddened by the turmoil one family has had to endure! BUT I am amazed at your strength .. YOU are amazing!!! My son just had dental surgery my first sedation in all my 15 years of parenting.. let me say that was the saddest part of it all and coming out :( I will continue to follow you! I am amazed at your mothers day poem and I truly know i was meant to find this :) thanks for your wonderful ways with words

  7. I hope everything goes well with the MRI and that no surgery is needed. How stressful! :(

  8. The waiting game is the worst. Waiting for tests to be taken and the results to be analyzed and someone to explain them to you in plain English feels like a twisted waiting room hell. I haven't been in your exact situation, but we had a lot of twin birth trauma drama with one of our boys and waiting for the MRI to happen/get results I think was the longest week of my life.

    What helped me through? Refusing to allow myself to think anything bad until someone specifically told me something was bad; and even then refusing to believe it would be bad news for our future unless they were 100% sure (which they never are with brains... they rarely are in fact...) I don't think that makes me naive. I think it makes me doing what I have to to keep my family from falling apart. As a brand new mom of newborn twins with one in the NICU after a very traumatic birth... me falling apart would help no one. What O needed from me (and A and my husband) was love and support and faith.

    That being said, it's easy for me to say all this because it worked out. O surpassed every expectation the doctors had for him, so... would I feel differently if things had ended up different? Is it too far out there to believe things ended up the way they did because of our mentality? Who knows...

    My rambly point was... you are an amazing mama. Half the internet knows that after your recent letter went viral. You can provide what your beautiful babe needs, and you will. You are the exact right parent for her.

    I'll be sending healthy thoughts your way and hoping for a very boring neuro report!




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