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When Your Child’s Disability Becomes Visible

The indoor playground at the mall was crowded with the typical, just before naptime crowd.  Moms sat chatting on the benches while their kids played on the squishy, soft sculpted foam ladybugs and slides made to look like logs cut in half.

Josh was watching Haven play, while I trailed along after Eisley, making sure that she didn’t crawl too far away from her little backpack containing her feeding pump and bag with her toddler formula that she receives through her NG tube.

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While I helped Eisley stand against a bright blue beetle, a toddler waddled over to us, intrigued by the cool little backpack sitting on the floor.  She grabbed the syringe of water sticking out of the front pocket, and her mom swooped in from the side, and said, “Oh, that’s not yours!”

As she handed the syringe back to me, she asked about Eisley-what her name was, how old she was, you know, just the regular mom to mom chat.

“She’s 17 months,” I told her.

And then, just for the shortest moment, I saw the flash of confusion across her face.  After a beat, she told me that her little girl, (who was much bigger in size and proficiently walking around), would turn one in a few days.

“Oh! Happy birthday!” I told her.

We parted ways after agreeing that it was just about naptime for both of our girls, and I brought Eisley to a new section of the playground.  But I couldn’t help feeling just a little bit alone and just a little bit…visible.

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Eisley is getting to the point now that her disability is more obvious to those who don’t know her.  She wears braces on her feet, has an NG tube on her face, that is sometimes attached to a long tube and a little backpack, and she is much smaller than other kids her age.  The mom I was talking to was taken aback when I told her Eisley’s age, because she looks and moves more like a 7-8 month old.

I am usually not very sad that Eisley has a disability.  In fact, most of the time I either forget about it, or I treasure that aspect of her because it helps make her who she is.  But sometimes, especially now that she is to the age where her typical peers have far surpassed her in gross motor skills and in size, I get just a little sad, sinking feeling in the pit of my belly.

Seeing kids younger than her running around is a reminder of where she would be, of what she would be doing, if she did not have spina bifida.  And seeing others see that makes it even harder, because they don’t get the chance to see who I see-a girl who is strong, funny, smart, and loving.

As I was disconnecting Eisley’s feeding pump after her feed was done, an older gentleman came up to me.

“Ma’am, do you mind if I ask about the…”, he asked, pointing to his face, indicating Eisley’s NG tube.

“Oh, not at all,” I told him.  I explained that she was born with spina bifida, so she had a portion of her spine surgically closed up after she was born.  She has some challenges with mobility, and also some oral difficulites as a side effect, which causes her to need supplementation with a feeding tube.

“Oh, that’s a feeding tube?  I thought it was oxygen,” he told me.  He went on to ask if he could put her on his prayer list at church, and of course I agreed.

“She’s doing well, she just needs some help with some things like eating and getting around, so we could always use prayers.”

Those kinds of interactions usually don’t bother me.  I love to educate and advocate.  The more that people know about spina bifida, and see that disablilty is not shameful, the better the world will be for Eisley and others with disabilities as she grows up.

As she gets older, and is using her walker full time, it will become even more obvious that she has a disability.  Maybe I’ll get more used to the stares and feeling like we are under a microscope, but maybe you never get used to those things.  It’s all a learning process, that’s for sure.

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Sticks and Stones (Why People First Language Matters)

When we received Eisley’s diagnosis at my 23 week anatomy scan, I walked out of the ultrasound feeling like I was no longer pregnant with a baby, but with a diagnosis.  I was pregnant with spina bifida.  Or so it felt like.  We didn’t even know if it was a boy or a girl, but we knew that the baby had spina bifida.

Thankfully, we had our gender reveal party two days later, and we found out she was a girl.  The next day, I turned to Josh, and said, “We need to name her.  Tonight.”  I made a short list of names while he was at work, and that night, we decided on one.  Eisley Mae.

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Finally, I felt like I was pregnant with Eisley and not spina bifida.  She had a name, and an identity beyond her diagnosis.  And for the rest of my pregnancy, I could be excited about the person she would be, disability and all.

Now that she is here, it is much easier to see her humanity beyond her disability.  Sure, she is almost 15 months and has yet to pull up on her own, but she also loves Daniel Tiger and says, “Maow!” when she sees one of the cats.  I have to be aware of her behavior and watch for symptoms of shunt malfunction, but she loves bananas and cuddling, like many other 15 month olds do.

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I want the world to see her as I do-a person first.  She is different than a typical person, but she has so much more to her than her disability.  For this reason, I am very careful about the language I use when speaking or writing about her.  Rather than saying “she’s a spina bifida baby,” I say, “she has spina bifida,” or, “she’s a baby with spina bifida”.  It’s a very subtle difference, but an important one.  Person First language seeks to define the person as just that-a person.  Their disability is a descriptor, and should be used after their humanity.  Just like I would prefer not to be described as “a short girl” but rather, “a girl who is short”.  In my case, my short stature is not a disability, but it is true.  I am 5’0″, well below average height, but that is not the most important characteristic about me.

The same applies for people with adaptive equipment, as well as other disabilities.  Rather than describing someone as “confined to a wheelchair” (which is another blog entirely-they are not “confined”-their wheelchair actually gives them freedom and abilities they would otherwise not have without it!), it is more respectful to describe them as a “person who uses a wheelchair”, or a “wheelchair user”.

Although I am not a part of other disability parenting communities, I have heard that many other disability communities champion Person First language as well.  So instead of saying “He’s a Downs kid,” a more respectful phrasing would be, “He has Downs Syndrome.”

If disability is not your every day, it may not seem like a big deal, so why bother? It does take a little bit of thought and effort to change the way we think and speak about others, but from my experience, you can’t ever go wrong with being respectful.  If you’re not sure, a good rule of thumb is to listen to how a person with a disability describes him or herself.  They would not refer to themselves in a way they feel is offensive, so it is usually a respectful way to describe them.  And many people with disabilities are open to educating others about their disability, so you can also just ask them what they prefer.

Words matter, and they do sometimes hurt.  Being thoughtful with your words can make a world of difference to someone who already has to work so hard to be known and respected by the world.

Maybe people get tired of me gushing about Eisley, but I don’t think I’ll ever stop. #sorrynotsorry.  I just want everyone to know what an amazing person she is.

A person with spina bifida.

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I can’t change disability-but would I?

When I go back and read my Instagram post from June 24th, 2016, I can feel the sadness and pain in my words as if I had just typed them yesterday.  It was the day we learned about Eisley’s diagnosis of spina bifida, and we decided to share the news with our family and friends.  I couldn’t stop crying that day, and I felt like my entire world had changed.

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And really, it had.

But I wish I could go back and tell myself that it was changing for the better (not that I would have believed my future self, but still).

A question that I sometimes ask myself is, would I change Eisley’s spina bifida, if I could?

The answer is no.  And yes.  It’s a complicated, conflicted answer.

I would take away the physical pain of surgery recoveries, countless procedures, and chronic pain of everyday life.  I would take away the heartbreak that I am sure that she will experience in the future when a blunt child calls her a baby for wearing diapers, or when an adult gives her a pitying look in the grocery store when they see her braces or adaptive equipment.  I would take away the feeling when she realizes that the world sees her as less than, and when she will have to fight to receive equal access to the world.

I would take all of these things away if I could.  But, I also know that if I took away her disability, I would take away a huge part of who she is.

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She is strong.  I get so many comments on how happy she is, and I just smile and nod.  Because I know it’s more than happiness.  It is a strength that runs deep.  After her surgery the day she was born, she was on morphine for a couple of days, and after that, she only needed Tylenol.  She was recovering from two surgeries in one-her spinal closure, and the placement of her shunt that goes from her brain down into her abdomen.  She physically works so hard to do the things that typical babies do with ease.  Each time I see her crawling across the floor to get a toy, or when she is grabbing my arm while I sit on the floor and she pulls up to her knees, I know the physical effort she is exerting to do these things.  She works so hard, and does it all with a smile and a gentle spirit.

She is dedicated.  Maybe that sounds silly to say about a 13 month old, but I wish you could see the look in her eyes when she wants to accomplish something.  She sets her mind to it, and she knows she will do it, no matter how hard she has to work.  Her physical therapist has commented on it before, saying, “We just have to show her how to do something once, and then she just does it like it’s nothing!”

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She is gentle.  And funny.  She loves to snuggle and loves the cats.  I could go on and on about how wonderful and remarkable she is, but I also want to be careful about turning her into my hero.  Because I want her to feel special, but I also want her to feel like a human being.  She is the heroine of her own story, but she’s not just an inspiration for everyone else’s.

So would I change her spina bifida, and make her just like everyone else?  Ultimately, no.  Because then she wouldn’t be the Eisley Mae that we love and cherish-strong, beautiful, and fearfully and wonderfully made.

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Hello, Sweet Baby (Eisley’s Birth Story)

**Note: Open talk about surgery ahead.  If that’s not your jam, you might want to skip this post.**

 

The night before I went into preterm labor with Haven, I had no idea I would be giving birth the next day.  I was several weeks away from my due date.  So, I assume I got a pretty good night’s sleep, or as good as one can get at 35 weeks pregnant, anyway.

The night before Eisley was born, however, I knew exactly what was going down the next day.  She had been diagnosed with spina bifida halfway through my pregnancy-a birth defect in which her spinal column failed to close properly, leaving a portion open and exposed on her back.  We had decided with our specialists that a cesarean was the safest route for delivery, and I had spent the rest of my pregnancy slightly terrified of the impending surgery.

So, even though I knew I needed rest the night before, I just couldn’t go to bed.  I put Haven to bed on her last night as an only child.  I triple checked that my bags were packed.  Took a shower.  Laid in bed and tossed and turned-I was a giant bundle of nerves.  I’d say I was about 50% excited and 50% scared.  Not only was I having surgery, but my newborn baby would have surgery as well to close the defect on her back.

I somehow managed to squeeze in about 2 hours of sleep before it was time to go.  In the wee hours of the morning, we packed our hospital bags in the car and got ready to go.  I crept in to Haven’s room to whisper goodbye, and a tear slid down my face.  I knew she’d be fine staying with both of her Grandmas the next few days, I just didn’t know if I would be fine without her.

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Right before we left for the hospital.  This was my last belly pic at 39 weeks and 3 days.

When we arrived at the hospital, I got checked in, changed into my gown, and two nurses came in to start my IV.  The nurse who was placing it seemed like more of a newbie, and it took her a couple of tries.  She told me, “Wow!  Your vein just blew up like a balloon!” Not a good thing to say to someone who hates thinking about or looking at veins.  Ugh.  Even just typing it makes me want to puke.

As they wheeled me out of the room, I said bye to my Mom, who would wait in my recovery room during the surgery, and Josh was instructed to change into his scrubs.  The ride to the OR was shorter than I expected-through one set of double doors and we were there.

I slid down off the hospital bed, and shuffled into the OR, holding my gown closed so as not to moon any of the staff.  The room was COLD.  Like, frigid.  So, this is what an operating room looks like, I thought.  This was surgery numero uno for me, so I don’t know what I expected, but it was still surprising to me.

It took the anesthesiologist three tries to get my spinal block in, which wasn’t awesome, but it also wasn’t as bad as I expected.  It was such a strange sensation to suddenly have the entire lower half of your body numbed, and as they laid me back, strapped me down, and raised the curtain, I marveled at how I could sort of feel, but sort of not.  If you’ve had a c-section before, you know what I’m talking about.

Josh was finally allowed to come in, and I was relieved.  He was a little nervous for me, and we tried to make light conversation as they began the surgery.  It was weird to make small talk with my husband of 7.5 years, as if we had nothing better to talk about than the weather, but I needed to keep my mind off of the fact that I was being sliced open as we spoke.

I had pre-warned the OR staff that I did NOT want a play-by-play of what was happening, and they assured me that they would try to be as vague as possible.  But, then I heard, “We have a bleeder!”

Shoot.  That’s not good.  I may be no medical professional, but I’ve seen enough Grey’s Anatomy surgeries to know that bleeders are never a good thing.

The atmosphere in the OR became a bit more tense as they tried to stop the bleeding.

A few months before, as I tried to wrap my mind around the fact that I was definitely going to have a c-section, a friend with three cesareans under her belt told me that it feels like someone has a hold of your legs, and is tugging you back and forth.  As I laid on the operating table, I realized that’s exactly how it felt.

“Rupture!” A nurse called out, indicating when the amniotic sac broke open.  As they lifted her out, I suddenly felt lighter, like my body lifted from the table, ever so slightly.

And then, a cry.

When Haven was born a year and a half earlier, she weakly cried out once, and then nothing.  She did not have the strength to inflate her lungs on her own, as she was a month premature, and she was quickly given oxygen to help her breathe.

I hadn’t given much thought to how I hadn’t really heard much of a cry after Haven’s birth, but as I heard Eisley’s cry, it brought a wave of emotions that I hadn’t really expected.

Relief at hearing that my baby was ok. Wonder at the fact that I was hearing this person for the first time that I would love so much and know so deeply, and yet knowing nothing else about her in that moment other than her cry.  Tears welled up in my eyes.  And somehow, under all these emotions for my second born, a twinge of grief for my firstborn and how we had missed this moment with her.  If you’ve had an unexpected or traumatic birth, you know what I am talking about.  I think I will always carry little pieces of grief for both of my birth stories and how I wish I could change some things about the circumstances.

The anesthesiologist lowered the curtain a bit, and the doctor held Eisley up for us to see her.  I tried to lift my head, but either I couldn’t lift it far, or the angle I was at didn’t allow for me to see her.

They took her to the adjoining stabilization room to sanitize and cover her open defect on her back, and Josh went with her.

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Right after delivery.

Suddenly, I felt alone.

I could hear the OR team talking through closing me up, and I knew the anesthesiologist was somewhere behind my head, but it felt like it was just me and the ceiling tiles I was staring at.

I tried to busy my thoughts so I wouldn’t think too hard about what was happening with my body.  Then, the nausea hit.

“Umm,” I told the anesthesiologist, “I feel like I have to throw up.  What do I do?!” I felt a little panicked.  It’s not like I could run for a trash can to puke in.  “Just turn your head to the side,” he told me.

I turned to the side and dry heaved.  I was relieved I hadn’t actually puked on the OR floor.  That would have been embarrassing.

I don’t know if it was the 2 hours of sleep catching up to me, the blood loss, or the anti-nausea meds I was just given through the IV, but suddenly, I NEEDED to close my eyes.  I felt like a cartoon character from the 40’s or 50’s with anvils attached to my eyelids.  “I’m reeeeeeally tired,” I told the anesthesiologist. “You can sleep if you want to,” he said.

So I went to sleep, right there on the operating table as they put me back together.  It was the best sleep ever, I tell you.  When I woke up, which I have absolutely no idea how much time had passed, I felt like a million bucks.  Well, as much like a million bucks as you can while being operated on.

One of Eisley’s doctors came to update me.  “She is doing great,” he said. “She is 7lbs 5 oz, and 19 3/4 inches long.  We have covered her back to keep it sterile, and we are working on placing her IV.  Then, she’ll head down to the NICU to get settled in.”

Finally, they were done with me, and I felt like a weird, numb board as they tilted me back and forth to place a sheet under me to move me back to the bed.  As they wheeled me out, the same blunt nurse who had placed my IV earlier said, “It looks like a bloodbath on the floor.”  Ahem.  Again, NOT a good thing to say in front of your patient.

I was wheeled back to my room, where my Mom waited for me.  I spent the next hour or so trying as hard as I could to wiggle my toes.  The sooner I could move around, the sooner I would be able to get to the NICU to see Eisley.  My nurse told me that the c-section moms who deliver at this children’s hospital (who typically have babies who need medical intervention), are up and around much faster than other c-section moms in the community, because they are extra motivated by the incentive of getting to see their babies in the NICU.

Josh came back, and told us they were still trying to get her IV in.  Apparently, she was a very hard stick, and it was taking their very best people to get it right.  A few minutes later, a team of nurses wheeled Eisley in to see us. “Can I hold her?” I asked.

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I knew, going into Eisley’s birth, that I may not be able to hold her.  It was a hard reality to come to terms with, especially given the fact that I had not been able to hold Haven until several hours after she was born, and even then it was with wires everywhere and a bulky CPAP strapped to her head to help her breathe.  They assured me throughout my pregnancy that they would do their best to try to make it happen, but it really just depended on Eisley and how stable she was.

But, miracle of miracles, I got to hold her.

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It was only for maybe about 5 minutes, but it was 5 minutes that I didn’t know I would have, so it felt like heaven.  It was also healing, in a way.  While I still grieve that I didn’t get anything like this with Haven, I was so thankful that I got a few moments with Eisley, even if it was two hours later.

They took her to the NICU, where she was evaluated by neurosurgery.  They decided that she would have her closure surgery that day rather than waiting until the next day, and that she would, in fact, need a shunt to drain the extra fluid from her brain-a common side effect of spina bifida.

So, at seven hours old, she went in for surgery.  Oddly enough, I didn’t feel scared or anxious during this time.  I trusted the hands and the wisdom of the surgeons as they placed her tiny nerves back inside her spinal column.

Later that night, I was loaded up into a wheelchair, and my nurse pushed me down to the NICU while Josh followed behind, wheeling my IV pole.  We made our way to the back corner of the NICU, and I was able to sit next to Eisley’s bedside.

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She was still intubated from surgery, and she laid peacefully sleeping on her belly.  The monitors beeped as I leaned in, trying to ignore the pain in my abdomen, and I placed my hand gently on her upper back.  Her skin was soft and warm.

A whiteboard above her bed read, Today’s plan: Rest and Recover.

You and me both, Sweet Girl, I told her.