Meds

The photograph above is part of our nighttime ritual. Turn on the dishwasher, turn down the heat, shut off the lights, draw Willa’s meds. These take us from 9:00pm to 6:30am, peppering the evening and deep night hours with their interruption. Those tableaux of weirdness I mentioned before? This would be one.

My husband will not even take Tylenol if he has a headache and I know looking at this layout every night on our countertop makes his brain collapse a little each time. He cannot believe it’s ok to give a baby so much medication, ok for a baby to have so many tests and procedures, ok for a baby to have radioactive materials pumped into her like water. And I say, “Look at her, we feed her through a tube, none of this is ok.”

And it’s not.

It’s not ok.

During the first real scare we were ambulanced (is this a verb?) to the local hospital. Frustratingly (if not dangerously), because of insurance and liability issues we have to be taken to the nearest medical facility. Never mind the fact that they do not even have pediatrics. Never mind the fact that Willa is way way more than they can handle. Never mind the fact that each time we are sent there we waste five to six hours waiting for the transport that will take us to CHOP (Children’s Hospital of Philadelphia and the most unfortunate acronym I have ever heard) when the baby is failing. It’s a nightmare and this past time we found ourselves in the ER I found myself doing something that shocked the hell out of me.

The ER doctor looked at Willa and began ordering tests, blood work, cultures and all manner of time-consuming, unnecessary and misdirected busywork leading us down lost avenues and forgotten streets. I knew that he was leading us there and so I said, “No. I don’t want you to do any of those things. I just want you make sure she is stable and arrange for the transport to CHOP.”

Now I never in my life would have thought I would do something like this. I’m no shrinking violet but I was brought up to allow figures of authority to do their bit and listen quietly while that bit was done. Not anymore. I’m learning what so many of you already know. When it comes to medicine, all bets are off. You have to trust yourself when you know things are not ok.

Part of finding my way as a mother has been finding my way as an untrained, unskilled and highly emotionally invested nurse. I can insert an NG tube into my baby’s nose, put it in her stomach and tape the outside section to her face in less than a minute. I can draw meds perfectly, I can administer them in the dark, shutting off a pump, disconnecting tubes, flushing lines and getting the feed rolling again before the alarm goes off. I can insert a g-tube into a hole in my kid. I can identify when Willa is tachycardic. I can talk my girl through an MRI, an X-ray, a DMSA, a VCUG.

It’s not ok.

I never wanted to be a doctor because I never wanted to have to do any of these things, make any of these decisions, live with consequences. What if I had been wrong in that ER? What if I make a mistake with her dosages? What if I have to decide to let her live or die?

We don’t even take Tylenol, but we have a girl who takes everything, needs everything, will have every test, will need every procedure.

So what is ok? Different things different days I think. It’s ok that my husband and I talk about everything. It’s ok that we demand what’s best for her; even if we are using what information we have at the time. It’s ok that I can learn new things. It’s ok that I know I’ll make mistakes. It’s ok that I am scared of very little at all anymore. It’s good even.

It’s a morass: medicine and its world. But we are in it, whether we like it or not. I’m not a doctor, or a nurse, but a mother with an interesting skill set. Now if I could only figure out how to work my crock-pot I’d be unstoppable.

Section

I need to tell this story because I need to write it down and look at it. It has itself rewritten my body, the mark of the surgeon forever a part of me now and so in order to stop late night images I have to do something else with it.

After three months of bed rest my water broke at 1:00 in the morning on Easter Sunday. While little bunnies were depositing candy and eggs in country corners I was loading myself into the car, deeply relieved, incredibly excited, mightily anxious and just thrilled that the nightmare of my pregnancy would soon be over and the baby would finally be here.

Things went strange pretty quickly. I progressed to 8 cm in an hour. And then Willa’s heart rate slowed, and slowed more. There wasn’t time to wait out the extra 2 cm and so I was hurled through the hallways of our small maternity department and into the OR for the c-section.

While the gurney was breaking through the doors I remember thinking, I can still feel these contractions. I told the anesthesiologist. When they made the first incision I looked at him and said, “I felt that.” He said, “Does it feel like pressure or like burning?” “Burning” I said. His face was partially obscured by the mask but I saw he blanched. I saw his eyes. I knew then that I was in trouble.

Throughout what followed I remember trying not to scream. I did not want to frighten Willa in her first moments in the world. They strapped down my arms and my legs flailed. I yelled because I could not control it. The pain was beyond all reckoning. I felt every moment of my daughter being taken out of me.

Through the viscera, the rank fear and the straining for a hand to hold (my husband had not been allowed in the room, he was outside closed doors listening to what was happening) I still waited for the cry. I needed to know she was ok and that cry was going to tell me all I needed to know. She cried, she howled. I passed out.

So now I carry this mark. It pulls the skin slightly in this funny way, not very noticeable but to me it’s a sentence with a strange new punctuation, something invented to suit a new purpose, a mark that rewrites all meaning. I look at it everyday and remember how it got there. It makes things clear for me. All that came before its presence no longer exists. Life began at that mark. In fact life was taken from underneath it, and lived, and sits on my lap and howls still but with new vigor, new purpose. We all have new purpose.

It reminds me too that we can survive anything, we can take it, we can walk through fires and though we may bear the scars ever afterwards, they only add to our story. They write wonderful new chapters. These are titles to poems of daily life. Willa is my poem and the mark that marks her entrance to this world and the terrible experience it was only reminds me of the strength I have to continue. We all of us. All of us. This is the strength of motherhood, of parenting interesting babies and singular lives. We are simultaneously both: alone in our unique circumstances and just like everyone else in what we have the capacity to endure.

Since Willa arrived I have met wonderful mothers. Women who walk through fires everyday that so many of us could not imagine and what you will continually hear from them is this, “I’m just like you.” And so we must support each other, for our sameness, our differences and the ways in which little marks mean big things. We all have a story to tell.

Another Country Heard From

We thought we had a lot going on. The adjustments, the difficulties, the laughing, the crying, the silent struggles, the hot new joys. We thought we were the sole helmeted travelers exploring the centers of this swirling new universe, just born from the particles of infinite space and time. And then I caught my cat straddling the baby in her bassinet, ever so nimbly eating the tubing from the feed bag, while the feed was going through the pump, while Willa slept soundly, while we were talking in the next room, in broad daylight, plastic and all. I looked at her, she looked at me and I knew, ok so I guess I’m not the only one making hay…

Ever the opportunist, our cat, The Panda, has been making some personal discoveries on her own these days. The most wondrous being the ins, outs, and contents of the feeding apparatus Willa came with. The baby may have stolen the laps, may have shut the doors of the bedroom, she may have turned the doting eyes of the two parents in her general and forever direction but there is a bag filled with the wonders of free food and it sits there as if from a limb high in the bassinet, just ripe for the picking. It sends a chill down my spine.

I’m sure you can imagine: a quick game of word association if you need help: cat, baby, bassinet, smother, accident, death etc etc… And so life gets a little more complicated for The Panda. At 9, 12, 3 and 6 she is shooed into the basement to wait out the hour-long feed. She is watched, monitored and disciplined. None ideal as far as she is concerned and she looks at us with saucer eyes, “Why?” I tell her, “Panda, the last thing I need from you is a guilt trip. We all have to make adjustments.”

Well, she’s made hers. I caught her again Wednesday. This time she had managed to disconnect the bag tubing from Willa’s extension on her g-tube (this is not made to be disconnected so easily, it’s a plastic nozzle that snaps into the extension, the extension goes right into Willa’s stomach via button. Is this the same apparatus that was so recently a near death experience you may ask? Yeah, that one…), she had pulled it onto the floor where she was busily eating as much of it as she possibly could before getting caught.

I honestly couldn’t even get mad. I was just plain impressed. Again, Willa never even woke up. Now, if I sneeze two rooms over it will wake her. If I put the dishes away in the kitchen it will wake her, if I walk too heavily, if I touch tin foil, if I need to make a phone call, if I think about doing laundry, all will wake her. But a cat pulling off her feed from a hole in her body? Apparently, no biggie.

And the universe expands…

Retarded

I read the letter detailing Willa’s many current and future (potential) symptoms due to her syndrome and came upon this sentence: “Willa will be mentally retarded.” Now I grew up in Massachusetts and can spot a Scarlet Letter when I see one and at that moment I saw it, the large R emblazoned across her onesie, the final diagnosis of her mental capacity and perhaps even of her as a person.

As I have enumerated before, Willa has a lot going on, she’s our baby with extras but this one, the “mental retardation” piece has been an interesting one for me as her mother. When we read “The List” I felt a cold chill go through me when I saw that she would be “retarded.” (I keep putting the word in quotes because it is so profoundly not my word. I will stop but please place them there at your convenience.) Why? Why was this the thing that so devastated me? Willa has a 17% chance of getting cancer for God’s sake and yet this nasty ugly word was the thing that made the tears run hot and steady.

I saw the faces of future kids in her future school, mocking or ignoring her. The people on the street looking away from the family that had such a cross to bear. I hear the second person addresses changing to third person addresses, from “How are you baby?” to “How is she?” I saw my future embarrassment and shame, the shocking and constant assault to my vanity and in that the memories of our own childhood treatment of these kids, our adult inability to see what is in front of you.

When I was a young Girl Scout our meetings were held in the special education room of the local small public school. When we, ablaze with badges and hopped up on cookies entered this room we did not make eye contact with the other kids in the hall because they would call us retards for just going in there. We were tainted. And the children with special needs who inhabited the room during regular school hours? I was terrified of them. They were the ultimate other and it appeared that people did not like them. And so, I kept my distance for fear of their stain and the unpopularity it signaled.

As an adult you want people to ooh and ahh over the very devastating cuteness that is your offspring. I was picturing Baby Gap adorable and wanted the world to feel likewise. VANITY! My God, I am ashamed to even admit it but I have to, it’s true. You want people to sneak photos of your kid on the street, steal glances at their perfect form and claim that they have never ever seen a more adorable child, how can I even bare being the mother of such a perfect example of the human form?

Instead I have doctors who do not look at her, do not engage with her because what is the point? At hospitals I see parents of children with Downs who look away and are amazed when I make eye contact and smile. Their faces betray their habitual treatment, people do not do this, strangers do not make contact. The parents smile back at me with deep surprise and my heart breaks. For all of us.

Now let’s flip this coin over. There is the other side too.

We just watched Tropic Thunder. After the controversy I needed to see what the hubbub was all about. So we watched. We also watched the Public Service Announcement that appeared in the DVD extras at the very end of all browsing, the equivalent placement being in a shoe box, placed in a larger box, buried under furniture in the basement of an abandoned house. A cute little montage of children and adults with mental disabilities with an uplifting message about acceptance and respect. (My God, you could see the meeting where this was discussed and approved. It made my stomach turn.) And I was struck by the feast or famine nature of this whole thing. Either you are maligned, dismissed or ridiculed or you are canonized as a living saint teaching all us mentally proficient people a transformative lesson about love, and the way to a fulfilled life. It’s insulting.

Willa is no saint. She’s no retard either. The word is such a black mark because it functions as an indictment, of her future and of her potential. It attempts to say who she will be and what will happen to her. Rules accepted only by the uninitiated. And this is the important secret that no one tells you. It’s all a lie. It means, and I am understanding this more and more, it means absolutely nothing at all: ash in the wind, a fallacy.

What does this mean for my intelligence? The fact that I have a nine month old running my house, getting me to wash her, carry her everywhere, entertain her at will, live for her favor… This kid knows what time it is.

Thanks Willa, for teaching me about this word. It’s important. But you are a little devil and all the more wonderful for it. I promise you will always be my beautiful and completely untainted, unblemished, unbowed perfect daughter in my eyes, nothing less, nothing more.

The First Real Scare

And there we were, going along; waxing rhapsodic about diaper changes and then the house of cards comes down. I had only slightly understood what a house of cards is. I am now intimately familiar with this architecture. It’s funny, there’s no foundation.

I’ve been quiet on this page since the earliest December because we have been in the hospital. Our Willa, ever the adrenaline fiend, thought she would give us a good ole fashioned scare and teach us a Christmas lesson of love and gratitude. Didn’t particularly need the lesson but thanks anyway baby.

The morning of December 5th I awoke to the voice of my husband saying, “Oh my God.” This has not boded well in the past. For good reason. And now we had this sight to rocket us up and down to Philadelphia to Children’s Hospital at 6 am: she kicked out her g-tube overnight and the stoma had healed over. She smiled.

Long story short, g-tube was replaced in office by surgeon, sadly not in her stomach and the two feeds we emptied into her abdominal cavity combined with her meds produced a very unfortunate reaction. The baby went blue, her pupils would not react to light, she would not respond to me and she went very quiet.

She had emergency surgery to fix the tube and clean out her abdomen but by then she was a mess. She required a blood transfusion, she spiked a temp of 104 degrees, she wasn’t breathing and her heart rate was through the roof. She was also in terrible terrible pain.

It was the first time we were scared for her life and it was a singular experience to put it mildly. Colin and I stood like scarecrows at the foot of her bed while the doctors worked on her, tubes and wires leeched to her tiny frail body. She looked like a doll thrown into a thicket of brambles and just as unreachable. A piece of my heart broke off.

We then spent two weeks rebuilding, slowly slowly recalibrating everything. Her meds, her feeds, her calorie counts. Rather than bouncing back there were bouncelets. But she’s home, smiling again and she picked up a few new tricks in the hospital.

She’s yelling. Baby’s first vocalizations of any great volume. Willa yells, then looks at us with the greatest wonder. “Yes, you did that” we say and again, always, with her whole face, eyes and body, she smiles.

Our Christmas lessons of love and gratitude? Love your children and be thankful for them. They can be taken away. It’s that simple. The piece of my heart that broke off took its own journey this month. It came back to me carrying a suitcase plastered with foreign stickers of exotic locales. But it came back. We all did. And I am so very very happy.

The Center Falls Apart, The Diaper Cannot Hold

I have managed to avoid the scatological in my musings here but this mum can stay mum no longer. I spend the predawn hours, covered, her ass to my elbow in poop. I knew parenting required its pound of flesh, and pee, and vomit with the inner workings of various mucus membranes being common parlance of my day. But we’re talking about bowel movements here that are beyond the realm of all that is holy. She’s 14 pounds. That’s it. Our cats are larger and in no way capable of this level of production.

A lot of my time is spent teasing out what’s Costello, what’s Willa and what’s random. There are all the medical considerations and then the developmental. We see so much through a doctor’s lens, or a therapist’s. Days are spent addressing issues that have nothing to do with parenting per se. We are bunkered in what I imagine mission controls the world over must look like: charts, important telephone calls coming in, a vague but persistent sense of threat.

But in those morning moments, wherein all is disgusting and bleary and bad smelling I feel most a mom. I suppose this is just to say, parenting is gross. Really really gross. It’s something we all share whether our kids have a syndrome or not. It’s the universal. If you had told me when I was on my three month’s bed rest that these were to be the moments I would cherish…well… let’s just say you might not have been invited back.

But they are. I do cherish them. She fusses, she relaxes, she wants me to kiss her feet and then she may actually, if I’m lucky, fall to sleep for a while: warm, comforted, freshly diapered and sweet smelling once again. I love her. I mean I love her with a passion that I have never felt. Even if at the same time I am desperate to wash my hands.

It’s the feeling of inclusion that most strikes me. When you have a baby that there are no books on you find a real challenge in recognizing yourself in anything. The books just do not cover this. I asked every doctor I met in the hospital in the beginning the same question over and over again. “Should I be reading parenting books? Or do they just not apply?” They never gave me an answer. None of them, and I asked many many doctors.

But how could they answer that? They didn’t know what I was really asking. My true question was, “Am I a mother? Is she a child? Are we just those simple things too?” I didn’t realize it at the time but that’s what I wanted to know. I had paged through my What to Expect and I just wasn’t finding anything applicable. I trolled Amazon for books with the keywords “disability, special needs, Costello Syndrome” to no avail.

I was an outsider amongst outsiders. My daughter did not have Down’s, did not have Cerebral Palsy, no Autism, no Noonan’s. If you had told me when Willa was in the NICU that these were to be the syndromes I would envy…well…let’s just say you might not have made it out of the room alive.

But sometimes I do. And again, it’s for the inclusion they offer. For a knowing nod of the head once in a while in a waiting room, for a doctor’s experience and for the absence of the following common exchange, “She has Costello Syndrome.” “Huh. I’ve never heard of that…”

And then there was poop. We all know poop. It’s something to laugh about with other moms. They have nothing to feel weird about nor intimidated by, not wanting to say the wrong thing, not knowing where to put their eyes, or how much to ask, not wishing to offend. We all of us belong in the “parenting is gross” moments and I thank God for them.

Diaper changes.

Yet again, who knew?