When Gracie was little, we couldn’t imagine how she would manage school without someone right by her side helping her get through the days. We ended up accepting a placement for her at the preschool in our district with the most support—a 4-1 adult to child ratio. The preschool is the only inclusive part of a non-inclusive school in the district, a K-12 school for children with disabilities requiring intensive support. The preschool offers class sizes of 20 children, 10 of whom are on IEPs and 10 of whom are “typical” kids.

Her preschool was fabulous, and the staff quickly recognized how special Gracie is. They loved her for being unique, spunky, adaptable, and brilliant. And they also set her up for success at our neighborhood school by working to give her all the supports she needed, including a list of accommodations a mile long and a one-on-one helper or ISP. When the head preschool teacher was advocating for Grace to get an ISP, she warned us that the district does not like to provide ISPs for children because they do not want to take away from the child’s independence by having a support person right there. The district does not want to teach the child helplessness. The preschool teacher assured us that in Grace’s case the ISP would be necessary for safety reasons, and quelled our fears about possibly sending our amazing child to a big unfamiliar school without the necessary supports to get her through the day.

Gracie’s first ISP was absolutely amazing. Miss K. was Gracie’s helper throughout kindergarten and first grade, and will be a lifelong family friend. However, she moved out of state, and last year we had to deal with a new helper. Gracie’s 2nd Grade helper had a strong personality and was not a good fit for our family. We worked with the school to find a new helper for this year, and now Grace has Miss T.

Grace is in 3rd Grade now, and she’s becoming much more independent. When she started kindergarten, she used her walker most of the time, she needed help on the playground, she frequently tripped over other kids, and we did not know how much help she would need with academic work. By 1st Grade, her ISP was not allowed to help her academically because Gracie was at grade level with everything except reading. That has been a part of her IEP every year since—Grace does not require academic support and her ISP is only allowed to help her with things that she can’t see clearly.

Grace’s home physical therapist has also been working with Grace at our local playground, and she no longer needs support or assistance to use any of the playground apparatus. She can even do the monkey bars, much to my dismay (I have visions of her falling and breaking bones). She does not need help at school at recess. And today, for the first time, I sent her to school without her walker. She doesn’t really need it for walking anymore; she only uses it at school because the school is huge and she tends to turn her ankles when she gets tired. But she’s older now, and stronger, and she doesn’t really need the walker. Grace and I agreed to only send it on gym days.

Grace doesn’t really need an ISP anymore. And now, the words of her preschool teacher ring true—Grace is learning helplessness because there is always someone there to help her, even when she doesn’t really need it. This weekend, she threw two epic tantrums because I wouldn’t help her. She wanted to go outside and I didn’t really want her to—it was cold and she has a lot of wounds on her fingers that I didn’t want to get dirty—so I refused to help her put her socks and shoes on. After several minutes of screaming and crying, she eventually tried to do it herself and immediately succeeded. She got to go outside anyway; I wasn’t going to take that from her after she worked so hard for it. Later, it was time to do homework. She had some multiplication puzzles to work out. I re-wrote the numbers that were hard to see in Sharpie and explained how the puzzles worked (which she probably already knew, since she had them on her homework last week too). She would not complete the puzzles. “But MOOOMMMM! I need help! I need you to tell me what to multiply and where the answer goes.” Again, I refused to help her—this time, only because I knew she could do it—and again, she was able to do it herself as soon as she stopped tantruming.

We also have been having trouble getting Grace to stop biting her fingers. I believe this is related to the learned helplessness. Because someone else is always there to be responsible for Grace’s fingers, she has stopped trying to care for her own body. She has no incentive to be responsible for herself. I believe that if we take away some of the help she’s getting in other areas, we may encourage Grace to become responsible for herself—after all, it feels good to accomplish things, and the more hard-earned they are, the more the sense of accomplishment. I do believe she is old enough and smart enough to stop biting her fingers, no matter how ingrained the habit is.

When Grace was a baby, we used to put her in elbow restraints called “no-nos” to keep her from biting her fingers. She could not get her fingers to her mouth, so she could not bite them. However, she also couldn’t get her pacifier to her mouth with the no-nos on. But that didn’t stop her. She would take her pacifier, put it directly in front of her on the floor, then move her arms straight out to the sides and bend at the waist, grabbing the pacifier with her mouth. She used to be the queen of adaptability.

We will get there again. In the words of Spiderman’s uncle, with great independence comes great adaptability. Or something like that.

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Trip or Treat

Last night was Halloween—I hope all of you had fun and enjoyed the festivities. I know that my kids sure did! It was Elliot’s first Halloween, and he was tuckered out by all of the being carried around and making people smile.

Gracie had a good Halloween. She got TONS of candy; she will probably still have some until this time next year. She doesn’t really care for sweets too much—she likes them, but doesn’t go crazy on them.

Jackson also had fun. This was his first year trick-or-treating without us; he met up with one of his school friends and was on his own. Gasp! My little boy is not so little anymore. He also got TONS of candy, which will likely be gone by the end of the week. He loves all junk food, especially candy.

On the day before Halloween, we visited the local high school for their annual Trick-or-Treat Street, where groups of high schoolers decorate and staff candy tables for the area children. We’ve been to this event for the past few years. They always do a good job. This year, it was packed—there were two or three times more kids than there have been in the past. We waited in line for about 30 minutes before we could even enter the trick-or-treat area. Grace played with a cute little girl in line ahead of us while we waited.

Finally, we reached the start of the trick-or-treat maze. We walked through a set of double doors into a dimly lit hallway. There was a hopscotch game set up inside the doors, and the kids were supposed to jump through it to get the candy. But for Grace, the dim lighting took away her remaining vision, and she could not see anything at all. I explained to the girls at the table that she couldn’t see it, and they gave her a handful of candy. Grace insisted that she was fine and could walk without assistance, but she kept falling, landing hard on her knees. Each time, she’d get up with her usual chirp of “I’m fine!,” but eventually she allowed me to lead her. I held her under her arm throughout the rest of the building, leading her through hallways and corridors as she collected treats. Except for a scary moment on some stairs, and a difficult walk across a balance beam, Grace did really well in the low lighting. She ended up with about half of a pumpkin bucket’s worth of candy—not a bad haul for the day before Halloween! It was a fun family experience, despite the reminder of Grace’s visual limitations.

Grace’s visual impairments are easy to forget during our regular day-to-day lives; she does so well with them that you almost can’t tell she’s legally blind. But when the lights go down, so does her vision. All she can see in dim lighting is the lights themselves—and these appear very bright to her, so they don’t help illuminate the rest of the scenery.

Last night, I took the kids trick-or-treating while Chad stayed home and handed out candy. Gracie was in her stroller; between the vision impairments and her balance problems, it seemed like the best way to get her around. We would leave the stroller at the sidewalk while we went up to houses for candy.

Again, Gracie’s low vision was apparent. There were many times that she could not find her stroller at all, even when it was directly in front of her. I took to shining the flashlight on her stroller, but even then she couldn’t see it unless she was already looking at it. She is truly blind in the dark.

There was one time last night where I was trying to steer Grace away from some rose bushes. She cheerfully remarked that they were very pretty with the pumpkins on them—but the pumpkins she’d seen were not on the roses at all. They were solar powered pumpkin lights in little flower pots along the path. I shined the flashlight on the roses, but she still did not see them. It doesn’t seem to bother her—after all, she’s lived like this her entire life—but it is heartbreaking to me and Chad. It’s like a smack in the face to really be confronted with her limitations like this.

All in all, though, it was a very good night. She filled her pumpkin bucket (we had already removed the candy from the night before), and we came home when it became too heavy for her to continue to carry (even in the stroller). She had a blast both nights, and never was bothered by her own limitations.

One of the things that makes Grace so amazing is her attitude. She never lets anything get her down. She is the queen of adaptability—if something is in her way, she cheerfully changes course and moves on. While it was sad for me and Chad to again be confronted by the reality of her poor vision, she was not sad at all. To Grace, it was just a fun experience with family and costumes and candy.

And once again, I am reminded not of Gracie’s limitations, but of her amazingness. The world would be a better place if we were all so cheerful and unflappable as little miss Amazing Gracie.

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When Grace was little, we used to wonder what she could and could not feel. Doctors would ask me about her sensation and I would give my best guess, but sometimes I simply could not answer. We would discuss how she’d be able to tell us when she was older.

Grace is older now—she’s 8 years old. And lately, she and I have had some fascinating talks about what she can and cannot feel.

It all started one night when I was putting her to bed. I was patting her gently on the arm in a motherly fashion. She moved, and I asked her if she could feel me patting her. She said no, but she could feel the warm spot where my hand was. That made sense—we have known for a while that she can feel hot and cold. But she verified that she cannot feel light touch, which is really too bad, because so much of parenting is showing affection through gentle touches.

A few days or weeks later, again at bedtime, we were talking about what pain Grace can and cannot feel. She encouraged me to ask her anything—she wanted to talk about it. “Is there anything you want to know, Mom?” she sweetly asked. And of course, there were many things I wanted to know.

When Gracie broke her wrist a couple years ago, she said that it hurt. During our conversation, I asked her, “What did it feel like when you broke your wrist?” She replied that it felt like needles, while pointing to the exact spots on her arm where the fractures were. “But you can’t feel needles—you never react when the IVs go in,” I remarked. She said that no, she can’t feel the pokes, but she can feel the IVs when they are in her arm. “And they HURT, Mom!” she averred. This is fascinating, because she never acts like they hurt. She typically accidentally removes several IVs per hospital stay just by getting them caught on things and pulling away. I know that when I had an IV during Elliot’s birth, I was extremely conscious of how I was moving so as to not accidentally bend or pull the IV. Even during the most intense contractions, I would try not to bend my wrist because the IV would hurt. It’s hard to imagine that IVs hurt her in the way they hurt me, simply because of how she reacts to them.

She also said that she feels random needles in her feet (her feet have traditionally had the least sensation of any part of her body). I told her that this was fascinating, because it sounded like a typical peripheral neuropathy—her nerves were misfiring, as is common with people with peripheral neuropathies. Now it was her turn to be fascinated—she was shocked that it was normal for her to feel these random pains. I explained that many times, people who have no trouble feeling things throughout their lives develop peripheral neuropathies as they get older. These people report feeling pins and needles in their extremities, particularly their legs and feet, so what Grace was feeling was actually normal for someone with a peripheral neuropathy. She was fascinated and intrigued. I think she is as curious about what “normal” people feel as I am about what she feels.

For the past several months, Grace has been biting her fingers mercilessly. She averages 7-8 bandaged fingers per day, and I only bandage the ones with open wounds now because she has to be able to use some of her fingers for touch screens and iPads at school. During our conversation, I asked her what she feels when she bites her fingers. Grace said that she can’t feel it at all. In fact, she often does not know she’s doing it. She said that’s why she sometimes says that she didn’t bite her fingers, even when it’s obvious that she did (like when she has blood on her mouth and face)—she did not know she was doing it, so she feels like she’s being honest by saying she didn’t do it. Although this is fascinating, it is also frustrating. How do we get this kid to stop doing something she doesn’t know she’s doing? How do you break a habit so ingrained it is no longer noticeable? How can she protect a body part that doesn’t even exist to her brain? How can we, as parents, help her through this? (If anyone reading this has suggestions, please share! We are desperate to help her.)

We have had a few other conversations about sensation since those nights. Grace is eager to describe her experience, and asks me often if I want to talk about pain. During one of our conversations, I told her that when most people get diarrhea, it’s very painful. It makes our stomachs cramp and can be excruciating. She said that she gets a stomachache when she has diarrhea also, but from what she described, I don’t think she feels it as much as is typical. I know from watching her through the years that she does not seem to feel the painful cramping, which is frankly a blessing because she is plagued by chronic gastrointestinal distress.

I also asked her about a time when she was 3 and she pulled out her teeth. She said it hurt, but her memory of this event is clearly fuzzy because she got several of the details wrong. She did remember thinking that she wanted Tooth Fairy money, and feeling disappointed when the Tooth Fairy refused to pay for teeth that were prematurely extracted. (Hey, the Tooth Fairy’s gotta protect her somehow! If that’s what it takes to keep her teeth intact, it’s worth it.)

As she gets older, I anticipate having several more conversations with Grace about her sensation and pain perception. It is intriguing to me, and cathartic to her, to have these discussions. Hopefully, by talking more about what she can feel, we can help increase her awareness of her own body. And maybe, just maybe, someday she will quit biting her fingers. One can only hope.


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The Great Discriminator

A few days ago, I read a post on Love That Max about how people with disabilities are largely excluded from worship services. Many people in the comments section of Love That Max’s Facebook post linking to the article shared their experiences of being excluded from churches and synagogues.

I don’t think I’ve ever discussed our experiences with taking Gracie to church on this blog. If I have, please forgive me—I’m going to discuss it again.

When Grace was little, we used to try to take her to church once in a while at the Catholic church we attended. We were “Christmas Catholics,” for sure—we attended the beautiful holiday services but were not religious about attending regular weekly mass. (See what I did there?) But church is interwoven with our story. In fact, it was at church on Easter in 2012 when we realized that Grace’s myriad finger wounds were self-inflicted. And Gracie’s first major hospital stay happened on Jackson’s first day of Pre-K at the Catholic school he used to attend.

Grace has never in her life been able to sit still and be quiet for an hour. When we would try to attend church when she was younger, we would do our best to get her to be quiet, but it was largely unsuccessful. She would play and chatter happily, oblivious to the dirty looks shot our way from various folks around the church. Sure, some people would look at us kindly, but for the most part, the people who noticed Grace (and the rest of us) did so with disdain. Most of the people shooting us dirty looks were elderly, perhaps from a generation where children were whipped into submission or raised to be seen and not heard.

I spent most of the masses we attended walking with Grace through the church lobby. Because I am not particularly enamored with the church anyway (something about the treatment of women as inferiors, and also the sweeping-under-the-rug of sexual abuse), I always volunteered to take Grace out of the mass so that Chad and Jackson could enjoy their religious experience. Chad was especially chagrined by the old peoples’ dirty looks; after mass, he frequently would recount that his family’s priest friend would not have stood for behavior such as Grace’s and in fact would have stopped mass to point out the unruly child. (Sounds charming, no?)

When Jackson attended St. B.’s, the Catholic school, we received a tuition discount for being Catholic. In order to continue to receive the discount, we had to attend mass regularly. The discrimination against Grace and other people with disabilities was apparent. She could not have gone to the church’s children’s program because of her disabilities—the volunteer teachers could not provide the level of supervision and assistance she needed. She could not attend mass because of her disabilities—she is literally physically incapable of sitting still and being quiet while she is awake. Because of her disabilities, she had no option to participate in or attend church. So, she and I spent most of every mass pacing the lobby. It did not take too many of these masses for me to volunteer to stay home with Grace while Chad and Jackson attended the services. If she was not going to be able to attend anyway, why would we bother getting dressed early and spending our Sunday morning away from home?

By the time Grace was old enough to attend school, it was obvious that she would never be able to attend St. B.’s with her brother. She uses a walker, and St. B.s has many stairs that the students ascend and descend several times a day. She is incontinent, and there would be no one at St. B.’s to help her with the bathroom. She is legally blind, and there is no way they would be able to modify the curriculum for her or even provide more than the most basic of accommodations. However, we still wanted the kids to be in the same school, like most siblings are. I spoke with the school principal, who advised me to talk to the assistant superintendent of schools for the Archdiocese of Denver, Sister E. Sr. E. was in charge of deciding whether to allow children with disabilities to attend Catholic school.

I emailed Sr. E. about including Grace in school at St. B.’s or another Catholic school. I wrote an introductory email with a simple explanation of her disabilities (I said “she can’t feel pain and is legally blind” in the email). Sr. E. emailed me back dismissively—her exact words were “kids like her belong in public schools.” I bristled at “kids like her”—she had no idea who Grace was or how special she is! How dare she compare Grace to all the other children she does not know? How dare she make a sweeping generalization about children with disabilities in the first place? Sr. E. had no intention of allowing Grace to attend any Catholic school in our large metropolitan area and made it clear in her email. She did not even ask what it would take to accommodate Grace—she never tried to make any effort to include Grace. Chad’s uncle, who was the superintendent of Catholic schools in another state, urged us to keep trying, even though we were hurt and upset. I emailed Sr. E. back, a kind email detailing the advantages to all children of inclusion, and reminding her that there must be many other families in our city who would love to send their special needs children to Catholic school. I noted that if even one of the many Catholic schools in the city would accommodate special needs kids, we would be willing to send our children there. I urged her not to miss the opportunity to do the right thing.

She never responded.

Chad and I were both very upset about the closed door we faced at the Catholic school. It hurt our hearts that the school was unwilling to even think of accommodating our smart, funny, amazing daughter. We were willing to try to find someone who would attend school with Grace to help her, even at our own expense. We were willing to drive all the way across the city if need be. But they wouldn’t even look at her, wouldn’t even assess whether it was possible to include her.

It turns out that Grace is thriving at public school, and the dismissive nun was ultimately right—Grace belongs at public school because she is welcomed and accepted, and also accommodated. And after another discriminatory experience with Jackson (he needed help with reading but the school adopted the attitude that “someone’s going to be at the bottom of the class” and punished him for his shortcomings instead of helping him), we realized that ALL children belong at public school.

When parents (like us, admittedly) refuse to send our kids to public school, the kids who remain at the public school are the ones unable to attend a private school due to cost or disability or transportation. That means that the student population at the public schools is not a cross-section of society; it is heavily weighted with children with disabilities and children experiencing poverty. Ironically, though, the teachers are much better than the teachers at the private schools—they are truly invested in helping the children succeed. They express love for their students much more than we ever experienced at private school. They are better at identifying the students who need help and providing one-on-one assistance. They are better at teaching a broad spectrum of subjects, continuing to learn as they teach, providing new perspectives, and they do so much more that their counterparts at the Catholic schools fail to do. Our kids are thriving at public school, moreso than they ever did or would at Catholic school.

But still, the discrimination stings. The church purports to bless the meek and poor of spirit, but it shunned us. Grace was not only unwelcome there, she was actively discriminated against. And judging from the comments on Love That Max’s post, this is a nearly universal experience for parents of disabled children.

The Catholic Church has failed many people—women, the gay community, children who were molested, and people with disabilities, among them. The church is the Great Discriminator; the only people welcome there are men at the top of the bell curve. If the church truly wants to increase its membership, it will take an honest look at its shortcomings and make amends to the large groups of society that it has discriminated against.

Until then, Grace and I will not be attending church. We don’t want any part of the Great Discriminator.

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We are all settling into our new life with a family of five. So far, it’s been pretty good. Elliot is a very sweet baby who rarely cries and sleeps relatively well at night. We all enjoy having him around; his cute little face brightens our days.

Grace has especially enjoyed having a baby brother. She loves him soooo much. She is always wanting to kiss him, hold him, read him stories, and sing him songs. She is a very sweet older sister.

Unfortunately, she is also a very contagious older sister.

Since Elliot has been born, she has had three viruses, came thisclose to a hospital stay in his third week of life, and just today had to come home from school because of the latest atrocity—lice. (*Shudder*) The first two viruses were short-lived mystery fevers. She would complain of a headache and body aches then spike a high fever. Both times, this resolved in about 24 hours. Our pediatrician assured me that this particular virus attacks older children, and not usually babies.

The next virus was a severe cold; it took her weeks to shake the lingering cough, and she still will let out a rattly cough now and then. She was never sick enough to stay home from school with the cold, but she was sick enough to feel bad and to cough all over the house. We were constantly reminding her to cover her cough, to little avail.

It has been so hard for her to stay away from her brother through all of this. She loves him so much that she just wants to be with him all the time, snuggling and kissing and loving on him. She does not understand just how serious it could be for a little guy like Elliot to get sick, and can only think of how much she wants to be near him. Exasperated, I finally told her that if she really loved the baby she would try not to get him sick. She’s had a few reminders of that, but generally has been able to stay away so as to not get her baby brother sick.

She was finally on the upswing from the cold when she got the finger infection. This kid just can’t stop biting her fingers—every day she has a new wound (or two, or three…). She refuses to use any of the non-finger chewing alternatives available, and scorns every new chewy I bring to her. It’s frustrating and heartbreaking to see her do so much damage to her own body. I have cried, begged, pleaded, scolded, ignored, redirected, and everything else, and she still won’t stop biting. It’s a bad habit that she has grown to enjoy, and one day it could cost her fingers, a hand, even her life. It’s absolutely heartbreaking.

A couple weeks ago on a Tuesday night, I was giving her a bath and noticed that a deep new wound on her thumb was red and hot. To my horror, I saw a red streak tracing down from the base of her thumb all the way up to her elbow. My heart sank, knowing that the speed and intensity with which this infection developed almost guaranteed a hospital stay. At that time, Elliot was three weeks old. I was scared to expose him to the big, bad hospital germs. He had weathered Grace’s viruses, but could he fight the germs in a hospital emergency room? After much soul-searching and weighing the pros and cons, I decided to give her a dose of the Keflex we keep on hand and see how the night went. If she developed a fever overnight, she would have to go to the ER. If she made it without a fever, I would take her to her pediatrician as soon as possible the next day.

Amazingly, she made it through the night without a fever. I think her pediatrician was shocked that she was afebrile with that bad of an infection, but she understood my fears about taking the baby to the ER. She prescribed a stronger antibiotic and sent us home with instructions to go to the hospital if a fever developed.

Grace never did get a true fever, even though she did have a slightly elevated temp that night. But she probably should have been admitted for the infection, anyway—it’s been three weeks now on the stronger antibiotic and her finger is still red and swollen. The infection is slowly, slowly resolving, but it is taking a very long time. It seems obvious to me that the infection is in her bone, and it will take a while to get the medicine where it needs to go. If she had been admitted, she would not have been discharged until the infection had resolved more than it is now. Hindsight is 20/20, as they say.

Today’s installment in our game of “What will Grace bring home next?” is the grossest, although the most benign. She has had lice before—she brought it home at the end of the school year last year—so we know how to treat it. (She calls lice “her little creeps”—a suitable moniker, for sure.) Last time she had it, I was pregnant and was cautious about what treatments I applied to her in order to protect the baby. This time, I bought the stronger pesticides in hopes that it will resolve faster. But if Elliot gets lice, the only option will be to pick the nits individually. Luckily, his hair is wispy and soft, and any lice would be easy to see. Still, I hope he can avoid them. They’re disgusting little creeps.

If we’re lucky, this will be the last time Grace brings home a germ or parasite for a very long time. Hopefully and with a little luck, she will be able to be the big sister she wants to be once all the germs and bugs are gone. And hey, at least she’s helping Elliot to develop his own strong immune system. With any luck, it will be MUCH stronger than his sister’s.

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Two Days of Torture

One of the lessons of parenting that has come up frequently for me is to roll with the punches—don’t get your heart set on things working out a certain way. And yet, apparently I still haven’t learned the lesson, because I really was hoping Elliot’s birth story would have turned out differently.

I never did go into labor spontaneously. So, at my midwife appointment on Friday, August 17, we were out of options. The midwife informed me that they wanted to get the baby out by 42 weeks—by Monday, August 20. She was concerned that I wanted to do a VBAC but they would have to induce; apparently this is not a very safe or successful combination. She had to speak to the doctors who were on call all weekend to make sure they were okay with trying induction. She warned me that they may not be, but she would call to let me know when to be at the hospital and what we were going to do, noting that induction would be via pitocin drip and balloon dilation.

Later that day, I got a call letting me know that they would induce at 6 am the following morning. “Oh good,” I thought, “I can get some sleep tonight!” Little did I know… I was so stressed out about the impending procedure that I only slept from 11:30 pm to 2:30 am. (Gracie was also stressed, apparently—she woke up at 4 am and could not go back to sleep. She wailed and sobbed. She wouldn’t tell me what she was worried about; I think she was afraid that I would have to have a c-section. She is afraid of surgery. Perhaps this is because she has lost parts of her fingers in every surgery she’s undergone.)

When the time came, my sister and husband and I drove to the hospital for the induction. Although we got there roughly on time, it took quite a while to get started. Even though I’ve always been told that I have great veins, the nurse could not get an IV going, and had to call the vascular team to start the drip. I was also told that I would have to be on the monitors the entire time I was there, and that I could not take a bath or utilize some of the other features of the birthing room. Bad news on top of bad news.


I hated everything about this picture at the time I took it.

Eventually, the midwife came in to discuss the plan. They would start the pitocin drip to ripen my cervix, and if it worked, they would then insert the balloon catheter to continue cervical ripening. I asked why they couldn’t use any other methods to ripen the cervix. Apparently, everything else can cause contractions to come too fast and often, which increases the risk of uterine rupture. These two torture devices were my only options.

When the pitocin drip started, it took quite a while for the contractions to come. But after a few hours, they were starting to get more intense and more frequent. It seemed that there was a glimmer of hope at last—it seemed like labor was finally starting. That hope was short-lived, though; the contractions suddenly stopped and progress stalled. At that point, exhaustion overtook me—the three hours of sleep from the night before were not enough for me to continue trying to labor, and I could not do anything but lay in bed. The night midwife decided to stop pitocin and insert the balloon. She made some comment about my reluctance to use the balloon; I don’t even remember what I said or did that made her think I was unwilling, but to me it was more that I was so exhausted I couldn’t think or make any decisions on my own. She went ahead with her plan, and soon there was a large balloon catheter in my cervix.

The catheter caused tremendous cramping, as expected, and throughout the night I woke up with painful cramptractions. But it worked. The next day, it was ready to come out, and my cervix was dilated to 5 cm. At that point, labor legitimately started. The contractions were frequent and intense, and by about noon I was dilated to 7.5 cm. I was hopeful that the baby would be born by that afternoon.

The contractions continued to intensify and were coming closer and closer together and lasting longer and longer. Although I had wanted to try a drug-free birth, it soon became clear that the pain was too intense to manage without any relief. The nurse offered me nitrous oxide to “take the edge off” during the contractions, which I accepted at that point. The nitrous was frustrating to me; the face mask made it hard to properly breathe through the contractions, and during the rest period I could barely keep my eyes open. It did not seem to do much for the pain, but it definitely impaired my faculties. I would not recommend it to other mothers.

I don’t know how much time passed, but eventually the contractions were so strong and so close together that I felt like maybe I should try to push. THAT was excruciatingly painful. It felt like the baby was stuck—like he could not get through my cervix. When the midwife came in, she said I was at 9.5 cm, and she could try to massage the last little bit of cervix out of the way with the next contraction. I was hysterical and cried for her not to do it—I knew how much it would hurt. At that point, I asked for an epidural. The pain was just too intense to manage. I can remember various visual images of pain that passed across my eyes during those severely intense contractions. It was getting more and more painful, but the baby wasn’t making his way out yet. It was awful.

The nurse took away the nitrous when I asked for the epidural. I remember crying in desperation, but also thinking that it hadn’t really helped anyway. I breathed through the next several contractions, holding on to Chad and silently praying for relief. After several more intensely painful contractions, the anesthesiologist appeared. He was my savior at that point.

The moment the epidural kicked in, the baby became distressed. His heart rate dropped dangerously low, and all of a sudden there were nurses and doctors everywhere. It occurred to me after a bit that they were prepping me for surgery. They gave me several medications to stop the contractions and to help the baby, they washed my stomach with their special soap, and they inserted a bladder catheter. They rolled me on one side, then the other, trying to stabilize the baby. Finally, his heart rate recovered, and everyone left the room except the night nurse (it was evening by this time; time had passed without my conscious awareness while I labored). They told me they would be back in an hour or so to check on whether the contractions were coming back.

I stared at the baby’s heart rate monitor, terrified that he was not okay. After all that, the worst possible outcome would be to lose the baby, which is what I was afraid of all along. With every dip in his heart rate, I asked the nurse whether he was okay. The nurse assured me that he was fine, but I couldn’t believe it—I couldn’t take comfort in it after all we had been through. And when my contractions started coming back, his heart rate would drop with each one. The nurse was unconcerned, but I was worried.

Finally, after what seemed like hours, my midwife came back in. She pulled up a chair and looked me in the eyes. She said, “Suz, I think we need to get this baby out.” I quickly agreed; it was too scary to watch him suffer each time I contracted. I was so worried about him, and only wanted to see a healthy baby. She started gathering the team for a c-section.

It was at this point that I felt most hopeless, felt the most despair. I had just gone through two days of intense contractions and painful medical interventions, and for nothing—we were going to end up in a surgical suite anyway. Why had I bothered trying? Why had I spent so much time and energy working to bring the baby into the world, when he would just have to be cut out anyway? It was awful; this is probably the part of the birth story that I will always have the hardest time with. At one point, my midwife came in and saw me crying. She tried to reassure me that I had done what I thought was best for my baby, and that I would have always wondered if I had not done it this way, but that was small consolation.

I felt utter despair as they wheeled me into the operating room. I had asked for two “consolation prizes” for the c-section—I wanted them to tie my tubes as long as they were in there, and I asked for a clear drape. Neither would happen; the (Catholic) hospital would not allow tube-tying for birth control reasons, and when I mentioned that I have an aunt who died of ovarian cancer (this is one of the reasons they’ll do the tube-tying), the doctor said he was worried that I’d already lost a lot of blood and he didn’t feel comfortable doing the surgery. He also said that they do not have clear drapes, so I would have to have the big blue sheet covering my view of Elliot’s birth. At that point, it seemed that nothing had gone right anyway, so I didn’t argue. I did not have the strength or presence of mind to advocate for myself, anyway.

If I’d had enough presence of mind, I probably would have objected to some of the medications they gave me before the surgery. I tend to throw up every time I get anesthetic or pain medicine, and they gave me several different types of each. But that wouldn’t occur to me until the next day. But I digress.

I could feel the surgeon make the incision—it didn’t hurt, but I could feel the pressure. I could feel them maneuvering Elliot around so that he would come out head-first; apparently, he was not quite in the right position. And I could definitely feel them pull him out. I realized I could see his reflection in the overhead lights, and watched as they rubbed and rubbed on his chest, trying to evoke a cry. I desperately intoned, “Is he okay? Is he okay?” to which everyone assured me he was, but I could not feel peace until he cried. It seemed like an eternity.

Soon, though, came the sweetest sound—his little sweet newborn cry. They whisked him to the warming bed to clean him off and do all the things they do. I watched him struggle and cry on the bed as the nurses gathered around. Pretty soon, one of them shouted out his weight—”Nine pounds, two ounces”—Chad’s exact guess! No wonder he couldn’t get through my cervix. He was just too big. He really WAS getting stuck!

Chad told me later that when he had come out, the cord was wrapped around his neck and all across his body. Elliot’s cord was huge, which Chad heard one nurse say is a sign that the mother “really took care of the baby”—score one for me, I guess. But that huge cord was getting compressed every time I contracted, which explained why his heart rate was dropping. Chances are, he wouldn’t have been able to be born naturally anyway; the stress of moving through the birth canal would have maybe stopped his heart for too long. At least, that’s what I’m telling myself… I need to hang onto something to understand why it didn’t work out the way I wanted, why we ended up in a surgical suite after two days of torture.

Elliot was born at 10:19 p.m. on August 19, only a little over an hour before the end of the 42nd week. He was and is absolutely perfect. He is the sweetest baby—he really only cries when he’s hungry, and it’s a cute little whuffling cry, not a full-on scream. We are all in love.

Ultimately, all’s well that ends well. Even though we went through two horrible days to get him here, Elliot is a beautiful healthy baby. That two days of torture was probably worth it, despite nothing going according to plan. (But it all went how I imagined it would when I was told about the induction method, ironically… no wonder I didn’t want to do it that way.)

Elliot completes our family, so we will never have to go through that sort of ordeal again. He is perfect, even if his birth story is not.

Welcome to the world, Little Mr. Man.


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The Waiting Game

In my last post, I discussed how my midwives were pushing me to induce the baby right at 40 weeks, and my ambivalence about that. At my next midwife appointment that Friday, my favorite midwife casually informed me that they would not be able to use the same induction methods they used with Jackson; the medicine they used increases the risk of uterine rupture in people who have had previous c-sections, so it is off the table. In order to induce this time, the midwife mentioned she would plan to use a balloon catheter to manually dilate the cervix and a Pitocin drip overnight to induce contractions.

Both the balloon and the Pitocin sound absolutely barbaric to me. I had visions of a very painful and unsuccessful induction that would ultimately end up in a c-section anyway. After several tearful days of soul-searching and reading medical journal articles for the medical reasoning behind induction, I decided to cancel it. The medical journals all said that induction is recommended for mothers of advanced age no later than week 39; we had already passed that milestone, so there was no good medical reason not to continue to wait. They also said that the risk of stillbirth increases after week 39 – but it increases from 1 in 1000 births to 2 in 1000 births, which is not really a huge percentage increase. And for babies and mothers who are healthy, like me and Elliot, there is very little risk of stillbirth.

On the morning of my due date, August 6, I called the midwives and told them I would be canceling the induction. They agreed, but wanted me to come in for a non-stress test and to talk to a midwife in person. I was happy to do so, and ready to stand my ground on the refusal. I considered it the first parenting decision I was making for my unborn child. Having Gracie has taught me a lot about advocating for my children’s rights, and I was determined to use those advocacy skills to fight for this child, too.

Thankfully, my favorite midwife was the one we saw, and she was very supportive of my decision to cancel the induction. She said at one point that she may think I made the right decision; she was also worried about the potential for a failed induction. She advised me to make an appointment for August 13, one week after the due date, during which I would have an ultrasound to check fluid levels and the placenta and another non-stress test.

Last week, we waited anxiously, every day wondering whether it would be THE day. I went through cycles of elation and despondency – some days, I would be sure I was about to start laboring, then nothing would happen, and then the next day I would be despondent, knowing that another day had passed and I was inching closer to having to advocate for my unborn child with a midwife I’d never met. As Monday approached, I grew more and more stressed out, worrying about whether the new midwife would be supportive.

Thankfully, she was. The ultrasound and non-stress test were fine; the baby and I are still perfectly healthy. She asked that I return in three or four days to re-check the baby, but was ultimately completely kind and supportive. In fact, she was so peaceful and kind that I have a new second-favorite midwife.

On Monday, I again felt very close to labor. I was having tons of Braxton-Hicks contractions and a great deal of cramping. When I woke up Tuesday morning, I thought for sure it was starting, as I had a few painful contractions right in a row. But then, everything stopped… it wasn’t labor.

Yesterday was a bad day. Again, I was despondent, wondering if the baby would EVER be born. It doesn’t help that everyone is asking me when he’s going to be born, and making comments about how long the wait has been. Believe me, it’s been longer for me than anyone else. It’s a little dagger in my heart each time someone makes a comment about continuing to wait for the baby. Yesterday was full of tears and heartache.

Today is a better day again. Although I don’t feel any sign of imminent labor, I’ve always thought that he would be born today, since the kids start school tomorrow and it’s the worst possible time for me to have a baby. I’m trying not to get my hopes up that he will actually be born, but it’s impossible to forget that today could be the day.

At this point, it feels like I won’t go into labor naturally at all. If we make it to next Monday, there will be no other option but to induce and hope it works, since very few midwives and OB-GYNs will allow anyone to go past 42 weeks. And I accept that, in theory. I will know that I tried to give him the best possible chance at a healthy existence. I still don’t want an induction or a c-section, but the hard truth is that it is completely beyond my control.

Elliot has four more days to be born on his own terms. Hopefully, he will decide it’s time within the next four days. But ultimately, we’ll meet this little guy by early next week no matter what.


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40 at 40

Apparently, age 40 is practically geriatric in the baby delivery world. Even though I feel healthy and spry and finally have a bit of a grasp of this whole parenting thing, I’m apparently much too old to have a baby, and far too old to carry the baby past term.

But let me back up.

When I first had Jackson, I was 30. It was exhausting; I will never forget the sleepless nights. In fact, I was so tired that I slept like the dead during the 2 hour stretch where he wasn’t nursing or wanting to nurse each night at several intervals.

There was a house fire on our block one night when Jackson was about 3 months old. The flames shot up so much that we could see them from our bedroom window, even though the house on fire was a few houses down the street. Fire trucks wailed down our street, and the smoke was thick. I slept through all that, only awakening when Jackson cried. In my groggy, sleep-deprived haze, I had no idea why our room had an orange glow or was filled with smoke until my husband also woke up and told me what was going on.

I remember thinking at that time that I knew why people had babies in their 20s. When I was in my 20s, I had less trouble staying up all night (partying and drinking, of course, but who’s counting?). By the ripe old age of 30, those days were long gone and I felt far too old to keep up with the rigors of a newborn.

The sleep deprivation is the part of parenting a newborn that scares me the most this time around, at the practically ancient age of 40. Will Elliot be a good sleeper like Grace? Or will he wake up every 2 to 3 hours all night long like Jackson? Or will he present some different, as-yet unknown scenario? We will find out in a few days; Elliot is scheduled to be induced next Tuesday night, if he is not already born by then.

Other than a healthy baby, one of the things I wanted most from this pregnancy was to go into labor naturally, since I never have before. But from the very beginning, my midwife has told me about a new-ish development in OB-GYN care called “40 at 40.” It means that when the mother is 40 years old, she should not be allowed to go past 40 weeks’ gestation. We have talked a lot about it, and she assured me that we could go a little past, but because I also want a healthy baby I’m nervous about pushing it too far. After a great deal of consideration, I decided that if our favorite midwife was working, I could schedule the induction for her shift so that she would be the one to deliver the baby. (She also delivered Jackson and Grace, so it would be really nice to have her there.) It turns out that she’s working overnight on Tuesday, August 7, and all day on Wednesday, August 8. So, it made sense to schedule the induction for late at night on August 7—we will go into the hospital at 11 pm to be induced, and if everything goes as well as it did with Jackson, we should have a baby by Wednesday afternoon.

You would think that after all we’ve been through with Grace I would be used to having things not go my way. And, for the most part, I am. But this time seemed so different—it seemed like all my dreams were coming true. It’s hard to give up any part of what I had hoped would be the perfect labor and delivery. And truthfully, there is still a chance that it could work out perfectly—a very slim chance, but a chance nonetheless. I don’t have a lot of hope for that, though. I am feeling despondent about having to be at the hospital an extra day while the baby is induced.

It’s for a good cause; we definitely want to give Elliot the best chance at being a healthy, happy baby that we can. And he will for sure have time to get all the IV antibiotics if we are induced, so that’s good too.

But still… I’m keeping my fingers crossed that he’ll make an early appearance. C’mon, little man! Do it for Mom. 😉


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Two Week Warning

Today marks the beginning of my 38th week of pregnancy – only two more weeks to go until d-day, give or take.

For those of you who were wondering, the 36-week appointment went really well. Baby was head-down, face-back, and all his measurements were perfect. He weighed approximately 6 pounds, 8 ounces at that appointment, meaning he’s on track to be an 8 pounder when he’s born.

We did have a bit of bad news at the next appointment. My group B strep (GBS) test was positive, which means there is an increased risk of the baby having serious problems like meningitis or pneumonia. Yikes!!

I hadn’t even considered the possibility that the GBS test would be positive. It was negative with both Jackson and Gracie, and I didn’t really think anything of it this time. It turns out that many women experience positive tests for one pregnancy but not others – sometimes, it’s the first time around that it’s positive, while other times they will have negative GBS tests for the first pregnancies and then test positive in the 3rd or 4th pregnancy – but then be negative again for subsequent pregnancies. Because GBS is benign for most women, it can come and go without anyone knowing about it.

There is a very easy way to greatly reduce any risks to the baby from GBS – I can just get IV antibiotics during labor in order to reduce the population of the strep bacteria during delivery. But that means that I will definitely have to do two things during birth that I was hoping to avoid – have an IV (I know, I’m a wimp) and be at the hospital fairly early so that they can start delivering the antibiotics at least four hours before birth. It’s no guarantee that nothing will happen to the little guy, but it reduces the risk of GBS transmission from 1 in 200 to 1 in 4000.

I don’t like those odds.

Because we have extensive experience with reducing bacteria colonies, I had a number of questions for the midwife who delivered the crappy news. First and foremost, why would they wait until labor to treat the infection? The midwife’s answer was that “it wouldn’t work,” but that’s not entirely correct, according to the internet. The actual answer is that you can do oral antibiotics and eliminate the infection, but because the bacteria live in the intestinal tract, they can re-colonize at any time – so there is no guarantee that the infection would be gone at the time of delivery. She also told me that the only antibiotics they can use to treat this particular infection are penicillin, amoxicillin, or Ancef. Again, I know this isn’t true – even though GBS is slightly different than the group A strep that causes some of Gracie’s infections, it responds to most of the same antibiotics. So, yes, the “cillins” will work, as will Ancef, but there are other options that also target strep – Keflex, for example, which is a cephalosporin like Ancef, and Bactrim, and Cipro, and even the “big guns” – vancomycin and daptomycin and linelozid.

The new midwife didn’t know who she was talking to.

It’s not her fault that she usually delivers this message to people who have no medical knowledge and hadn’t adjusted the delivery for someone who can speak the language, but I do wish she had exhibited a bit more respect once she found out that I could communicate intelligently. It’s the same old thing as with many other doctors – they make the mistake of underestimating special needs parents. It’s a familiar battle but no less obnoxious.

The next question was a practical one, but related to the first. What happens if we don’t have four hours from the time we get to the hospital until delivery? She did not answer this question to my satisfaction, either. She said that we would have to stay inpatient for a full 48 hours after birth if we did not have four hours to deliver the antibiotics. While that may be true, again, the internet delivered a more comprehensive answer. Essentially, they want to deliver two IV doses four hours apart, so if there is not a four-hour window between arrival and delivery, they will only be able to do one dose, which is better than nothing but not ideal.

I did mention that if there were ever a family the pediatrician would discharge early, it’s us, since they know us so well and know we’d be on the watch for any unusual symptoms. The midwife chuckled but she didn’t seem to agree or understand what I was really saying. She has no idea about the extent of the medical experiences we’ve had with Grace. Again, it’s familiar but obnoxious.

Ultimately, this new wrinkle is upsetting and unfortunate, but as with everything else in life, we will get through it. I really wanted to have my ideal birth experience with this kid, since he will be our last, but that’s not going to happen. And that’s okay – after all, it’s MUCH more important that Elliot is safe than that I have my ideal birth experience.

I am still worried about his chances of contracting a serious infection, although it sounds like the chances will be greatly reduced if I can get to the hospital early. Chad commented last night that it’s “Grace trauma” rearing its ugly head, and that’s probably true. We went through so much with her (we still are going through so much with her) that the thought of doing it all again with another kid is exhausting.

I do have a plan that I’d like to propose to our regular midwife when we see her next Friday. If we can do a 14-day course of oral antibiotics, that should reduce or eliminate the GBS colony enough that it’s no risk to the baby at birth. Fourteen days would be more than enough, since they don’t want me to go past 40 weeks and I know I’ll be induced at 41 weeks at the latest. It doesn’t make sense to me to wait – because the only risk to the baby is if my vagina is colonized with this bacteria (which it still may not be; the colony may be solely in my intestines), why not eliminate the threat ahead of time and create a greater chance of him being healthy at birth?

I know our regular midwife will at least have an intelligent conversation with me. She understands that I’m not the average pregnant woman, and she definitely understands that Grace is not the average child – she was also traumatized by Grace’s birth, apparently, because she has mentioned many times particulars of the birth that continue to stand out to her nearly eight years later.

None of us is ever guaranteed a healthy child or a perfect birth. I am trying to remember that. But in the meantime, I’m saying lots of prayers that Elliot is as healthy as possible, knowing that the outcome is beyond my control. Hang in there, little guy! We’re going to do the best for you that we can.


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Every day brings us a little closer to welcoming our newest baby, Elliot. Today, I’m exactly one month out from my due date — it’s getting real!

When I was pregnant with Gracie, everything went wrong, including the birth. Grace was transverse breech, which meant that she was laying sideways in my stomach. She would flip back and forth daily, but her head would always be on the side — never down in the birth canal where it belonged. Really, she was just expressing her uniqueness! She has never been one to follow convention.

Grace would never have been born without the modern miracle of the c-section. So many aspects of modern medicine have impacted her life and kept her alive through the years, and her birth was just the beginning of that. Thanks to a relatively safe surgery, she was born alive and I was kept healthy, other than having to recover from the surgery.

Jackson was born “the traditional way,” as I like to tell the kids. Other than being induced and having an episiotomy, it was all natural and really a beautiful experience. I healed very quickly from Jackson’s birth — within a week or so I was mostly back to normal, and as soon as the cut healed I was fine. That was not my experience with Grace’s c-section, though.

I vividly remember how long the recovery took with Grace. It was weeks before I could make transitions (sit to stand, lay down to anything, etc.) with any semblance of comfort. It was months before I really started to feel like myself again. It was years before my scar didn’t hurt with each menstrual cycle. C-sections are major surgery — the doctor makes a 10 cm (3+ inch) incision through multiple layers of tissue, including abdominal muscle, then stretches it wide enough to pull the baby through head-first. For Grace, because she was transverse, they had to turn her before they could pull her out, which was also very challenging.

Grace also reacted badly to the pain medication I was taking (Percocet). It was nearly impossible to wake her for the first week or so of her life. Finally, my mom suggested that I try to wean off the pain meds to see if that would help her wake up. It did — she was a much more alert baby when I stopped the meds — but it also left me hurting much more than I had been. Ibuprofen alone is not enough to dull the pain of such a major surgery.

I do not want to go through that again. Even though in my head I know that the only important thing is to get the baby out alive and as healthy as possible, I can’t help but remember the long and painful recovery. My biggest hope for this pregnancy is that I can go into labor on my own, stay home for the first stages of labor, then go to the hospital right when the pain gets unmanageable and deliver the baby there. My biggest fear, other than something unmentionable and catastrophic, is having to have another c-section.

On Wednesday, I will find out if I am allowed to consent to a VBAC (vaginal birth after cesarean). I have to meet with the doctor who performed the last c-section (rather than the midwife I’ve been seeing this whole time). I will have another ultrasound to make sure the baby is head down and there aren’t any other problems, and then, if all goes well, I can consent to the VBAC. I am trying to be patient and not worry too much about what will happen Wednesday, but the fear is always there in the back of my mind.

I find myself measuring where Elliot’s hiccups are. Hiccups are generally a function of the upper body (head, chest, and stomach), so if I feel them at the bottom of my uterus, it makes me think he’s in the right position. However, sometimes they are not at the bottom. Sometimes they are on the side or at the top. This makes me panic a little every single time. What if he’s breech? What if Gracie stretched out my uterus so much that he has plenty of swimming room? What if I have to have another surgery? These kinds of thoughts are completely useless, and yet they are exactly the sort of worries that are hardest to assuage.

But time will tell, I suppose. We will find out Wednesday if he’s in the right spot and if everything looks good. And truly, the most important thing is getting him out safely. After all, without a c-section, Grace wouldn’t have been born — she could never have come out on her own. And look at her now. She is a sweet, wonderful, kind, amazing young lady. She was worth every bit of painful recovery. I wouldn’t change any part of her, including her birth story. She is worth all of it, and I know Elliot will be, too, no matter what happens. But still, I’m keeping my fingers crossed for a natural birth!

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