Kiss

My littlest little

I'm sorry about how little I've been blogging lately. I've been very ill. I've been spending a lot of time laying down, in and out of doctor's offices and the ER, I had a CAT scan and a super awesome allergic reaction to the IV contrast. I've kind of been a wreck. And everywhere I go I try to be cheerful, share stories with people. A woman in the ER a few weeks ago was there with her best friend of thirty years. They became alcoholics together and then got clean together, and her friend had attempted suicide. I met an amazing nurse who took my blood, she had started in end of life care. She built a bond so strong with one woman that her daughter asked her to quit her job and work full time for them, taking care of her mom until she passed on, and she did. This nurse worked for that woman for two years, and when the woman finally died, she had to quit elder care completely. She cried while she told me the story.

But this isn't a blog post about what's been going on with me. This is a blog post about my youngest and HER health issues.

I have, since my first months of motherhood, been blessed with easy children. DD and SI were a breeze, all things considered. There might have been two of them, but they slept through the night, ate well, grew quickly, and then became incredibly well behaved toddlers. And now, children.

RH was also an easy baby. She slept through the night early. Putting her down for a nap is a breeze. You put her in her crib, hand her frog to her, and leave her there. Done.

But she has this developmental delay. She doesn't walk.

I know, I know, a fifteen month old who doesn't walk, what's the big deal?

The big deal is something known as soft indicators. RH had half a dozen soft indicators that there was something wrong, perhaps very wrong, but that by themselves probably meant nothing at all.

At three months old, she stopped putting weight on her legs. In fact, she would scream and cry if you tried to force her to use her legs pretty much at all.
She got constipated frequently.
She started showing a distinct preference for one hand over the other.
She wouldn't crawl.
She developed fine motor and verbal skills extremely early.
And her father is a survivor of a pediatric neurological cancer.

So, six indicators. Each one all by itself meant nothing. All together, they could mean... something.

But RH is an incredibly delightful child. She's social, she's outgoing, adventurous even. She loves people, she has no fear of strangers. A little suspicion, perhaps, but despite her age she's still happy to play "pass the baby" any time or place.

Chilling with the bride at That Redhead's wedding

It's hard to imagine there might be something wrong when she's so obviously thriving in nearly every way, but her doctor eventually referred her to neurologist.

The weekend before her appointment she finally started crawling. I was relieved beyond description. I was ecstatic.

And then I met her neurologist, who instantly calmed all my fears regarding M's brain cancer and heredity, but suggested another probably cause. A tethered spinal cord.

You may not have heard of this, but I actually had. I've been following the blog of a woman with a daughter DD and SI's age since... almost since they were born. And her daughter has a tethered cord. I've read along through her surgery to correct it, through her battles with catheterization and potty training and simply trying to lead a normal life. And it's rough.

So of course I freaked out. Just a little bit. And the neurologist scheduled my then ten month old baby for an MRI. While she was unconscious, they also did an elaborate study of her blood, and her urine. The silver lining there was that she was asleep for the blood draw.

It was awful. Poor little RH woke up from her sedation more upset than I had ever seen a child of mine. Not when DD sliced her hands open, not when she nearly knocked her eye out on a coffee table. And as she had weaned herself three days earlier, there was pretty much nothing I could do. Her face was red and irritated from where they'd taped her oxygen mask. Her tiny arms were covered in bruises from her IV and blood draws. Her legs were raw from the adhesive that attached the bag to collect her urine. She was naked and in pain and confused, and I held her and rocked her and wept, wishing that she had waited only three more days to wean, so that at the very least I could soothe her with food. Eventually, she accepted a bottle of formula, and calmed down enough for me to dress her and take her home.

When the neurologist called back she told me they hadn't found anything on the MRI. That was good, on the one hand. But on the other hand, she said, some things just weren't clear enough to see anyway. The bad news was that her bloodwork and urine didn't come back exactly normal, which also might not mean anything. The neurologist decided that RH needed physical therapy twice a week, and to go back in three months. And if she still wasn't walking, we'd have to repeat the MRI.

I did not want to repeat the MRI.

It took two months to get RH into twice weekly physical therapy. But she responded well, and
immediately. Her therapist adores her.

The third month came, and I postponed our return visit to the neurologist for as long as I could. Because she still wasn't walking, and I was terrified of what would happen if I had to get her another MRI.

One cool kid.

But the visit back to the neurologist was important. It's better to know than not know, I told myself. And again, RH threw me a bone. Three days before her return visit, she started cruising.

And cruising, as it turns out, was enough to rule out a spinal cord tether.

...but not everything. Her neurologist wanted her to repeat her blood and urine labs.

And so, I took my baby to the hospital to have her labs repeated.

I woke up the kids for school. I made them all breakfast, and all three ate happily. Then RH and I dropped off her big sisters for their third whole day of preschool, and I took her to get her blood drawn.

First there was the wait, nearly an hour. Waiting in the hospital always makes me miserable, so I talked to my mother. My mother told me they would probably take the baby away from me and do the blood test without me in the room, so that was good, because I was going to be the more traumatized party.

What I didn't tell her was how whole heartedly I disagree.

You see, my earliest memory is of a blood draw. Until I shared this memory with my mother as an adult, I had believed it was an eye exam. It is my very earliest memory, and in it I am RH's age. About fifteen months old. I am strapped to a blue, baby shaped board, and screaming as the door closes.

I can see my mother's face before the door closes. It's young, thin. Her glasses are huge, and seem dark. Her hair is pulled back in a ponytail. She's smiling at me.

And I'm screaming.

It's my earliest memory. I know precisely how traumatizing it can be to be taken away from your mother for something terrifying, like a blood draw.

But lucky me, the phlebotomist wanted me to come in and hold onto her. He looked about twenty two, and had obviously never drawn blood from a child before, let alone one less than two years old.

I held onto her, and as he puts on the tourniquet she began to scream.

She screamed and cried and I held her tight, singing softly into her ear as he prepared to insert the needle.

And he poked it through the skin on her tiny, unnaturally strong arm, and she wailed and sobbed. And I kept cooing to her, and the nurse muttered under his breath and he tried to gently poke the needle into her vein. But he couldn't find it. So he kept poking, and poking, and I kept cooing. "It's okay, sweetheart, it's okay. It's okay. It's okay..." For two solid minutes.

And then the door opened and two new faces appeared- two older nurses. And he gratefully withdrew the needle and left the room. I reached up and found my whole face covered in tears. I didn't even know I'd been crying.

The second of those new faces was the woman who took my blood a week ago, the former hospice nurse. She smiled at me and apologized for not getting there sooner. She'd seen me in the waiting room and had tried to step in to help with the baby, but the young guy was a newbie- a go-getter. She didn't want to discourage him, and she felt awful about it.

RH says "Cheese!" for the camera

I held RH and wept into her hair, again telling her it would all be okay, while another nurse held RH's arm steady, and my friend the former hospice nurse inserted the needle. She got a vein on the first go, but still it takes a while to fill three vials of blood from somebody so tiny. I held her on my lap as tightly as I could, but sitting behind her she couldn't see me. She whipped her head around, screaming, "Mama! Mama! Mama!"

When she finished I clung to RH and rocked her, pacing around the tiny room. The first nurse came in, looking mortified. He wasn't sure he'd gotten the order right, and they might have missed a vial. I waited, pacing with RH as she cried. My friend the former hospice nurse brought RH some apple juice, and she chugged it down, calming at each gulp. She learned a new word at that moment, and began repeating it over and over again. "Kiss," she'd say, and lean towards my face. I kissed her each time, and she dropped her weary head on my shoulder, her breath heaving. Then she'd look up at me and say it again, "Kiss."

Another twenty minutes later they finally confirmed the order, and we were allowed to go without another blood draw. I was already running late to collect the girls from preschool again.

Watching your children in pain is a nightmare.

Believe, me, I know how relatively minor all of this was. I know that there is a real difference between a terrible phlebotomist and a broken limb, or surgery recovery, or gunshot wounds. I know that RH wasn't really hurt, that she will carry no physical scars. That she probably won't even remember it. Probably.

But there's nothing that can make the hurt better as a parent. Nothing that can ease the agony of seeing your child hurting, seeing them terrified, and being helpless to rescue them from it. Or knowing that you are complicit in it.

I think about parents who have children with severe health concerns. Children with cancer, children who suffer through car accidents, children in war zones.

I am grateful that RH's pain was so small a burden to bear.

I can't help but know that, someday, a greater pain will inevitably come.