The Universe Provides

When Jackson and Gracie were born, I had no trouble finding child care. For Jackson, we interviewed a few in-home daycares and picked the one we felt best about. We ended up switching to a different one after a few months, but it was easy to find an in-home daycare for him. With Grace, we already had a daycare because of Jackson.

When Elliot was born, I spent the first four months of his life with him – every minute of every day. I started to work remotely almost immediately after he was born and gradually increased my hours; by December, I was working almost full-time but completely remotely. But then, in December, I was asked to return to the office.

I spent many distraught days trying to wrap my head around the idea of leaving my perfect baby. The thought of having someone else care for him so I could go to the office broke my heart. Many nights, I awoke overnight and sobbed at the thought of not being able to spend every minute of every day with my adorable, happy, sweet little guy. It felt as wrong as anything has ever felt before.

Logically, I knew that daycare wasn’t the worst thing that could happen to a child, and so I started searching for childcares for my baby. It turns out that there is a huge daycare shortage in Colorado – very few childcare centers have openings at all, and many are on months- or years-long waiting lists. Elliot would have aged out of the infant room by the time many of these facilities had openings.

We did eventually find one in-home daycare with an opening. It wasn’t a great fit; it was close to the house and the provider seemed nice, but it was expensive and she did not allow discounts for part-time care. Still, on the set day, I took my baby to her house and went to work, missing him the entire time.

He missed me, too. He cried the whole time he was in her care, and wouldn’t take a bottle. He was Persephone in the depths of Hades, refusing to eat until reunited with his Demeter. Still, we tried again later that week. And again, he hated it. My happy little guy cried and cried.

The next day was a Saturday, and he woke up with a fever. Grace had awakened overnight with the fever shakes, but his came on slowly. By the following Tuesday, he was struggling to breathe, and the doctor confirmed he had RSV and bronchiolitis. She informed me that the only reason he was allowed to go home on oxygen instead of being hospitalized was that he was so happy. Ironic, isn’t it?

During the week that he was so sick, the new daycare called to tell me that she’d filled Elliot’s spot with someone else. She just couldn’t take care of a baby that cried all day and wouldn’t eat.

At that point, we were out of options for childcare. I didn’t even know who to call, because it was a lucky fluke that we’d even found the one place. For the first time in weeks, I felt a glimmer of hope that I’d get to be with my baby for a little longer, that my desperate pleas to the universe had been answered. It was a morbid hope; my income had been our only steady income for months, and without it, we might have nothing on which to live.

I knew I needed to find childcare so I could return to the office, even though my job is capable of being done entirely remotely. (And even though I had been DOING my job remotely for months.) It was a rock and a hard place – I needed to find childcare, which wasn’t available, but I also needed to be with my baby with the deepest yearning of my soul.

Sometimes the universe provides in unexpected ways.

It wasn’t too long before my employer grew tired of accommodating my childcare situation. In March, I was required to come in on the day of a blizzard so that I could have a meeting with the executive director, the assistant executive director, and my direct supervisor (who had only been there for a few days at that point). At that meeting, I was told I had eight weeks to find childcare or I would not have a job – I would be considered to have resigned, since I could not fulfill their requirement that I be in the office at least three 8-hour days per week. I asked for an accommodation – I asked to be a full-time remote employee, which I’d been doing already for months – but was denied. That just wouldn’t work, they said, blaming it on the new person (who looked mortified to be thrown under the bus in her second week there – privately, she told me that she is very accommodating, but this was not her decision).

I spent many, many days distraught after this meeting, and many, many nights not sleeping. I really like what I do, and I’m good at it. I didn’t want to give up my career, but I also could not, could NOT, bear the thought of being separated from my sweet baby. I felt resentful at being forced to choose between my job and my child, and hated the fact that anyone would try to poison my relationship with my baby by forcing me to choose something else over him. But every time I looked at his sweet face, I knew there was no choice. All I can do is smile when I see him. He brings so much warmth and joy to our entire family.

And, there was still the issue that I had no options for childcare. I had been able to scramble together care for the one day a week I had been going into the office, but it wasn’t a regular thing and I would not be able to rely on it forever. I certainly wouldn’t be able to extend it into three full days per week. And even if somehow, miraculously, I could have found care for Elliot, school is almost out for the summer and I have no one to care for Grace and Jackson. (It’s extraordinarily hard to find care for Grace, since she is a cognitively-intact kid who needs help in the bathroom.)

The rock and hard place got even rockier and harder. The sleepless nights and stressed out days continued, and many, many tears were shed.

But again, sometimes the universe provides in unexpected ways. Sometimes things that seem so terrible turn out to be not that bad, after all.

Through all these years at my job, I’ve made many, many connections. Through some of these connections, I learned of remote job opportunities I didn’t know existed. I also learned that some of these connections would hire me the moment they had the chance to. Some of them were eager for me to be on the job market so that they could scoop me up. Others were willing to write letters of recommendation for me, many of which brought tears to my eyes. I had no idea I’d had such an impact on the people I worked with. It seemed that everyone I asked was eager to help me, and the praises they uttered were humbling and beautiful. They all recognized my worth, even when I struggled to see it.

It is the end of the eight-week ultimatum period, and soon I will no longer be employed. The future is uncertain and scary. But through this time, I’ve learned what is truly important to me. There is nothing in my life that means more to me than my children. There is no job that is worth sacrificing my children, no matter how great the paycheck or health insurance. I don’t know what we’ll do long-term. I don’t know how we’ll pay our bills, whether we’ll have health insurance, what’s going to happen. But I do know that I belong here, with my children. I will never look back and regret choosing them over a job. They are more precious than anything else.

Sometimes, the universe provides in unexpected ways. I am trying to be hopeful that everything will work out, and the universe will provide a way for me to be with my children while still having a job. Because sometimes, things that seem the darkest are really just a prelude to the brightest light.

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Elliot is 8 months old today! He is the best baby ever. I truly have never met a baby as calm and easy-going as he. His smile is always at the ready, and he is friendly to pretty much everyone he meets. He rarely fusses or cries – mostly only at the end of the day when he’s ready to go to bed, which, hey, we all get fussy when we’re ready for bed. In fact, he got his first tooth yesterday, and the only sign of teething he showed was a reluctance to eat.

Elliot has brought so much joy to our family. The kids adore him, and he adores them, too. Jackson is Elliot’s special big brother – they are more than friends; their connection is undeniable. Elliot loves Gracie, too – he lights up when he sees her, then reaches for her long blonde hair. He kicks and squeals when he sees Daddy, which does Chad’s heart good. And of course he loves me. The Milk Lady is pretty important to him. The feeling is obviously mutual.

For years, I wanted another baby. I didn’t want to just be done after Grace; I had always wanted four kids and it was hard for me to settle for two. But raising Grace is hard. The toddler years were darned near impossible with her, what with all the hospital stays and new diagnoses. Everything worked out perfectly, though – Elliot came along at exactly the right time (right after I started to accept that two is a good number of kids, haha).

I never anticipated that my career would end if I had another child. I did not foresee a legal education company engaging in such blatantly discriminatory behavior. But so be it. If I am being forced to choose between my job and my child, there is no choice at all. No one ever said on their deathbed, “Gee, I wish I had worked more!” And I know with all my heart that being with the children is the one thing that will make me happiest. Even though the future is uncertain and money will undoubtedly be tight, I cannot bargain my children away for anything. They are my life, my lights, my soul, my raison d’etre.

Seventeen months ago, I had no idea about the incredible changes our family was about to undergo. But here we are, and it’s the best thing ever to have Elliot in our lives. I love my little man so much. He has enriched our lives beyond belief. Thank goodness for him.

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Portrait of a Working Mother


Just when it feels like things couldn’t possibly get worse, Grace gets gangrene.

I found it last night – the tell-tale purple finger. She has been “off” for a few days, but I couldn’t figure out what was wrong. A knee was hot but it didn’t really look like her typical knee infection. She’s been complaining when I take her temp in her ear, so maybe it could have been an ear infection, but without a fever there’s not much to do for it. But last night, when we got home from dance, she had a bloody bandage.

It happened fairly quickly, as her infections are wont to do. I saw the finger the previous night and it was relatively fine – no cause for concern, at any rate. But last night, it turned a corner, decidedly for the worse. After packing a quick bag or three and saying our goodbyes, Grace and Elliot and I left for a days-long hospital stay.

When we got here, all the pediatric rooms were full – there was not a bed for Gracie upstairs – so we were told we would have to spend the night in the ER. This isn’t much of a problem, except that there is nowhere for me and Elliot to sleep in an ER room. The nurses found a bigger room, though, and wheeled in a recliner so that I could have somewhere to rest.

But rest is elusive when your daughter is in the hospital, and you’re worried about exposing your infant son to ER germs, and – oh yeah – you’re about to lose your job and health insurance because you dared to have a baby.

So here I sit, in the ER recliner with Elliot on my breast, drinking weak hospital coffee and working. Or blogging at the minute, but I will be back to work soon enough.

If only the people who are so eager to push me out of my job knew what I do for them.

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When the World Ends

Oh, you know when the world ends
I’m going to take you aside and say
Let’s watch it fade away, fade away
And the world’s done
Ours just begun
It’s done
Ours just begun

I never thought that I would have to trade away everything I had for one more baby. I failed to foresee that having another child would cost me so much. I did not realize the price of my dreams.

But oh, how wonderful he is.

If I had known going in that having a baby would mean I would lose my job, we would become so buried in debt that we struggle to pay our bills, Chad’s business would implode, and incidental expenses would become impossible, I might not have had him.

And oh, how wonderful he is.

With each appliance that breaks down, each flat tire, each leaky faucet, each school bus fee we can’t pay, each time we have to say no to Taco Bell because we can’t afford it, we get nearer and nearer to the point of no return. The world as we know it is coming to an end. It is terrifying and so, so stressful.

And then I look into those big beautiful blue eyes, and feel his fuzzy blonde hair against my cheek, and listen to his adorable coos and shrieks and giggles, and feel the warmth from his amazing toothless smile, and I know I would never choose anything but him.

Oh, how wonderful he is.

The world is over, but it’s just begun.


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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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