Boo Boo

It happened.

A moment I’d been dreading and did not know I’d been dreading.

I think I must have secretly felt it coming.

The other morning, as Elle was sitting in the bathroom with me while I got ready for work, she pointed to the remnants of the hemangioma on her forehead and said ‘boo boo’ and ‘ouch’.

Which was cute and funny, in her little girl voice.

But it hurt me.

And I said ‘Nope – that’s not a boo boo. That’s just the way you were born. You’ve had that forever.’

She did it again a few days later.

I did not like it.

It was as though she’d seen herself through a different lens. And it hurt a little bit.

I KNOW how piddly this is in the grand scheme of things. But, I didn’t like how it made me feel, that she was contemplating her reflection in the mirror and found something to be out of place.

I knew it was coming.

So, now it’s come.

Ah, parenting a toddler…

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Hemangioma

I have avoided writing about the hemangioma here, because it was a sensitive topic (not for the reasons you’re thinking) for awhile, so I just left it alone.

However, I want to write about my experience now, in the event some other Mom or Dad is interested in how to go about/what to expect if their child were to have a hemangioma – especially in a noticeable place like your child’s forehead.

Here’s the synopsis:

Elle was born with this mark on her head. It looked like it would be a ‘stork bite’ or ‘strawberry mark’ or ‘angel kiss’. Whatever, a mark she had from birth.

It continued to grow over the first three months of her life. Shortly after she was three months old, even though our pediatrician said ‘oh, it’s fine, she’s perfect’ (which, by the by, is why we no longer visit that pediatrician’s office) it continued to grow and was pushing on her eye and making her look – quite bluntly – on her way to becoming a cyclops with only one eye open.

Whatever.

But, then I began second guessing myself. My friend Kathleen’s daughter also had hemangioma and Kathleen had been gently nudging me to see the specialist that she and her husband had FINALLY managed to get to after a similar ‘don’t worry, she’s fine’ approach from multiple pediatrician’s.

Ultimately, the straw that broke the camel’s back for me was when I asked my Uncle, Craig, for his opinion. He’s an interventional radiologist in Salt Lake and I wasn’t entirely sure if he’d have any advice. But, as I knew he would, he asked a friend of his who’s the head of pediatric dermatology at the University of Utah.

“Get on propranalol, if it’s anywhere near the eye, no reason not to,”

“What about side effects?” I inquired, as our pediatrician (the one we don’t go to anymore) had referenced.

“There really aren’t any,” I’m told. “Cardiologists prescribe this like it’s water – there are very few side effects.” (I have minced words here, so don’t take this as medical advice).

So, I make an appointment with Dr. Shwayder at Henry Ford in Detroit. It’s an hours drive, but he’s the guy when it comes to this. The best. You look at his resume — undergrad at Harvard, residency in pediatrics at University of Michigan. Yup – I’m good with his education.

Anyway, we go for our first appointment and this specialist – who is the best, I wish all doctors were like this – reviewed Elle’s hemangioma, pulled up the New England Journal of Medicine on the computer in the evaluation room and showed us the research on using propranalol, and the effects on the child in the study who they had photos of – it was amazing.

He then ripped off a piece of paper and said “Here’s the plan.” which I loved.

#1: Don’t Panic.

#2: Send Elle to a pediatric eye specialist to ensure the hemangioma is not growing into her orbit/onto her eye ball.

IF so, then schedule an MRI to evaluate.

#3: Begin propranalol at half dosage = 0.5 mL per dose, three doses per day.

This photo was taken just five days prior to our initial visit with Dr. Shwayder:

It’s crazy to me to look back just three months ago at how much the look of her face was being affected by the hemangioma.It had also begun necrosing – breaking down – in the middle, which is what that purple spot in the center is.

We went to the pediatric eye doctor – good news, it was not growing into her orbit or affecting the growth of her eye in any way. They dilated her eyes and everything, and it was all good. Relief!

We begin the propranalol, and here’s what it looked like one month later:

Her eye was opening back up and the hemangioma itself was not nearly so angry-looking with all its blue veins running into itself, all the blood flowing directly to that area.

By five months (just one month ago) here’s another look:

Still quite red and with slight swelling (you can still see to the left of it, how it’s raised a little), her eye was even less affected and the swelling was nearly gone.

By six months, here’s a look:

No longer red and angry, this photo was taken after our third appointment with Dr. Shwayder. He increased the dosage from 0.5 mL to 1.0 mL three times per day and said that the progress (regression?) of the hemangioma was ahead of schedule.

All excellent news.

In short, we’re well on our way to the thing being very nearly gone. Increasing the dosage to 3/4 of a full dose over the 1/2  of a full dose has made an incredible difference.

If you happen to have stumbled on this post because your baby has a hemangioma somewhere — insist on a PEDIATRIC dermatologist (not the botox doctor) and get on the medicine if it makes sense for your child. For us, it means that Elle – who older toddlers already point to her eye and say “Boo Boo” – won’t have to contest the way she looks at school. We won’t have to wait for the birthmark on her face to go away on its own terms — by the time she’s one, there will probably be very little left of the mark itself.

I’ve struggled a bit, certainly, with giving in to some type of peer pressure/societal pressure to have a ‘pretty’ child or so that my child isn’t ‘different’. I want her to embrace all the ways that she is the same as AND different than people…but I wasn’t willing to let her eyesight be affected, let the way that people treated her as an infant be different. Already, I wonder if she’ll be proud of the fact that she had this as a baby — like a badge of honor — or if she’ll wish I hadn’t taken so many pictures of her with it (and then posted them incessantly on facebook).

I don’t know – those are my struggles to bear and I do that because the alternative is doing nothing — and if she had any other sort of condition, I’d be seeing a specialist about that, so I’m ok with our approach on this one.

People will make comments – just last weekend a guy said “wow, your baby really fell and hit her head, huh?” and I just said ‘no, it’s a birthmark’. You learn how truly insensitive some folks are — or how comfortable within their own skin they are to be able to state the obvious rather than just stare.

I’m most glad that we are allowing Elle’s personality to be the center of her existence — and it’s a delightful one at that — instead of constantly battling the ‘what’s that thing on her head?’ line of questioning.

Anyway — there’s our little hemangioma story. Heman. Gioma. Came to stay with Elle for awhile and now he’s on his way out. I encourage anyone struggling with seeking treatment to do it — totally, totally worth finding a great specialist and the best treatment.

 

 

Because I’m a Mother

I am among the most fortunate people in the world, I get to be a Mom to a girl I adore.

I say that, because I just finished a major crying bout.

Now, don’t say ‘ohhhh, why, Lindsay?’ or any of that sad stuff. Nothing to feel bad about or to be down about. Other than being a Mom, I suppose, and the perennial feelings of guilt that go with that.

As you may know, Elle has this hemangioma dwelling above her left eye. She was born with it. I’ve blogged about it. We’ve gone to the pediatrician and the dermatologist who have both said ‘do nothing – it WILL go away, sooner rather than later’. The dermatologist assured us (ok, me) that it’s probably breaking up already and that it’s really nothing to worry about. And that the medicine to treat it causes heart issues and the lasers to make it go away cause scarring.

Better to do nothing.

Thank you, experts. We will trust you (at least for now).

Tonight we went to a birthday dinner with Jon’s family. I love family – mine, his, ours (keep that in mind as you read) – and was glad that we were going. I like that we have a life that allows this type of celebration, sharing of time and space and experience. It’s important to me, to the life we are creating for Elle and ourselves.

Jon and I, among the many things we have in common, have the same number of aunts from our Mom’s. Yes, each of our mothers has four sisters.

Tonight, each of his aunt’s managed to ask before anything else ‘what does the doctor say about that thing above her eye’.

Not ‘How’s she sleeping?’ or ‘God, Lindsay, you look great 12 weeks post-delivery’ or ‘Jon seems like a good Dad, is he?’ or even ‘Is she sleeping through the night?’

Nope, none of that.

Instead,  I practiced my smile and my ‘rest assured I couldn’t possibly have heard what you just asked me’ look. I took it in stride. I knew, as Elle’s Mom, that I had sought out not just a pediatrician’s opinion, but also that of a specialist who came well-referred. I don’t see the damned thing above her eye when it’s just us, but when other people are involved, and I see them looking at the thing – well, then it’s in my mind.

And so is my self-doubt

And my racing mind was not put at ease by the remarks of:

“Ooooh, you went to that doctor? I’d for sure get a second opinion.”

I gave myself some time alone in the midst of the party. I was glad to have it. I tried to quiet my mind. I tried to forget about what these women were saying. I know that I’m an intelligent individual, that I have access to better health care than many – most. I am strong, independent and in control.

It’s who I am.

It’s what I do.

So why was I reduced to tears as I tried to get myself together after these comments?

My baby is PERFECT.

She’s wonderful, and happy. Among other things, she is well-loved and smiley and sleeps halfway decent and is growing like a weed and…I could go on and on.

So why am I hung up on what some women who I have known just three years have to say?

Because I’m a mother.

I drank too much wine at dinner because I couldn’t deal with it (yes, escapist, but whatever). The wine – and tomorrow’s hangover – will not have been that good or very worth it. But, I had to do something and causing a scene wasn’t in the cards (though I did try).

My baby was born and it turns out she has this strawberry mark – that she was born with, a la, a birthmark – above her left eye.

She’s happy and healthy and good-mannered and SO LOVABLE.

And yet.

And yet.

I cried driving home.

I cried, holding Elle and rocking her once we got home.For a long time, it felt like.

Not because I was sad that they had pointed out something ‘different’ about my baby – but because I was helpless to it.

It’s a fact that Elle has this mark above her eye.

It’s a fact that it will go away in its own time and that we DON’T KNOW that it will.

It’s a fact that the first thing people see about my baby – my wonderfully happy, healthy, smart, little girl – is the red mark above her eye.

No, AT&T repair man, I did NOT drop my baby.

No, teacher, it did NOT rupture and you do not have to treat her differently or care for her differently because of the red mark above her eye.

No, Aunt soandso, we don’t need it biopsied. It is not cancer. But thanks for your positive energy.

No, stranger at the grocery store, I did not do a thing wrong while pregnant to cause my baby to be born with a mark above her eye. Stop staring.

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Jon says ‘There’s a big red mark above her eye, people are going to look.” He’s so practical. But, our family aren’t ‘people’. I can handle ‘people’. But, our family aren’t just ‘people’ in my mind (though they’re quickly on that track to becoming just people). Family are the folks who hold you up when ‘people’ drag you down. But tonight, that’s not what it felt like. Not what it felt like at all.

 

And, this is just one mark above her eye. What about the mommies and daddies who have children who have something actually, seriously, wrong? I mean, I’m upset about a birth mark and the comments made?! It takes a strong person to be a parent, it turns out. And I’m so, so lucky. And trying to be stronger.

 

And here’s why I cried…

Because I can’t stop them staring. I can’t stop the comments, I can’t stop the questions. I can hope, only, that it goes away before she’s old enough to get the questions herself. Because the staring and the wondering isn’t something I can always protect her from. Because there are things beyond my control – especially other people – and I want SO BAD to protect my girl from that. Any of it. Ever. Whether it’s a mark above her eye or something else.

 

It’s that thing that men don’t understand.

“Why are you crying, there’s nothing you can do.”

“I’m crying because there ISN’T anything I can do.”

 

Tonight’s blog was supposed to be about the joy I got laying on the floor staring up at the ceiling fan with Elle.

About how laying on the floor and watching her tiny little hands stretch out in front of her, clasped, toward the ceiling makes me fill up. About how while she was watching the ceiling fan, I was watching her. About how the precious moments in which I get to stare at the ceiling, doing nothing but being present and soaking in the gift of my girl, center my world.

It was supposed to be about ceiling fans.

Instead, it’s about being a mother.

Elle’s mother.

I would not trade it for anything, ever, in my whole life, my whole world. But rest assured, for those of you who make the comments that compel me to tears, I’m done crying.

I’m in protect mode now.

Best of luck to you.

You have made me feel helpless and hapless – and I will not permit that feeling to be forced upon my daughter. I am strong – stronger than you – and I am standing up.

For me.
For my daughter.
I. Stand. Up.