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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