Monday

A liquid dinner seemed fitting for the beginning of the week.

I just burned my areola

It's not as risque as can be imagined. I'm not the only one imagining something risque, am I? Because in my younger years there were sexier ways I could have burned my areola.

There was no sexy in today.

It's quite boring the way it happened actually.

We have a free-standing towel warmer in the bathroom. When I got out of the shower I tried to take my fluffy, heated towel off the rack but found that a corner of it was hooked on the clothes hamper sitting next to it. I leaned over to release the corner and that's when my areola made contact with a hot edge of the warming rack. I guess my body's perception of how low my breasts hang when bending over does not match with their actual, er, elasticity.

See. It's not really even a story but I'm telling it anyway because it's all I've got. And, yes, it does make me sad that the most blog worthy event of my day - maybe of my entire week - is so unexciting. You can be sad for me, too. And for my poor areola.

Pretty Awesome

I came across this video of slam poet, Katie Makkai, and her poem "Pretty." I can't remember how I came across it otherwise I'd credit the source. Having two boys first and not being a girly-girl myself, I wasn't really prepared for the intensity of the girl-child's need to look pretty. But it's hitting me now and this video resonates for that reason.

CT Scan

Sam's scan went well yesterday. We've been through enough of these types of things to predict how things will go down. And yesterday was no different.

Some form of sedation must be administered since Sam cannot be expected to hold still for the duration of the scan. This means the procedure is slightly more involved and requires an anesthesiologist. Sam tolerates anesthesia very well. Too well. I mentioned this to the doctor along with the information about his apnea getting worse when he goes in or comes out of sleep. They nodded.

"Okay," I said, "You can just come get me when he's done if you need help waking him up."

"He'll be fine, I'm sure," was the response.

Thirty minutes went by and I thought they surely must have been finished. Finally, a nurse came to me and said, "He's really having a hard time waking up. And he's having a lot of apneas."

It's funny. David and I used to spend so much time talking with doctors ahead of time to warn them of all of Sam's idiosyncrasies. We wanted to make sure they completely understood what they were getting into and, more importantly, how to get out of it. But since our advice didn't fit with their own medical learning, most of it didn't reach their brains.

So now we don't spend much time preparing the doctors. Instead we just make sure that at least one of us is there when our warnings manifest.

I used my special mommy powers to wake him up. We should have the results by early next week.

Sam's Ear

Sam has a CT scheduled tomorrow to diagnose what might be a cholesteatoma. He's had several ear infections the past few years and finally his doctor, on last exam, saw what might be causing them. If the finding is positive then Sam will probably need surgery to remove it. A typical mother would be hoping for a negative finding so her child would not have to endure going under the knife. I'm not a typical mother. And Sam is not a typical child.

For years Sam has beaten on his head while yelling loudly. We've had MRIs performed to rule out any changes in his brain. Obviously we checked for ear infections - but the yelling and hitting continued even when his ears were clear. We've put him on medications for migraines and other heavy pain killers because we've assumed he's in pain. But nothing has helped.

So my hope for tomorrow's test is that they find a big ol' cholesteatoma that has been the source of his yelling and hitting. And, gosh, wouldn't it be nice if it was the cause of his balance issues, too? That's hoping for a lot. I'm pretty sure an ear growth has much less impact on balance than, say, the part missing from his cerebellum.

Then I hope for surgery. Not because I like it when my little boy goes under the knife but, rather, I'd like for Sam to be pain free. Also, he takes wonderfully long naps after the anesthesia wears off.

Whimsy

A friend of mine recently introduced me to a website called freeplaylife. The woman who runs the site has created a 52 week challenge (that's one challenge per week of the year. You're welcome). The idea is to bring more fun, whimsy, joy, and all that other good stuff back into your life. Part of the challenge is rediscovering this inside ourselves. In her own words:

...being ‘freeplaylife’ is so much a part of you that I don’t want you to change who you are at all, ever. What I want in these challenges is to help you remember who that is. What you want. How you feel. What makes you happy. How to get that for yourself. These challenges are geared towards helping you step out of the cycles of shame, grief, fear, and doubt that so often distort the lenses that you use to see yourself and the world around you. You are the key to unlocking the cages that are holding you back. Respect it!

This screams out so loud to me. This is what I've been missing in my life - ME!

A few years ago I went to NYC all by myself to meet a friend and see a concert. I had an entire day to wander the city before my friend arrived. What's shocking is that I couldn't figure out what I wanted to do. Maybe it was the vastness of opportunities. Maybe it was the shock of not having to worry about little people. I was able to come up with a dozen or so things I could have done with my kids, but nothing just for me. It was like I didn't know any more what it was that I liked. My friend showed up the next day and I was so relieved to be released from the chore of seeking Mindy pleasing activities.

Since that day I've struggled with this feeling that I've lost myself in motherhood. Don't get me wrong. I wanted kids. I still do. And I don't blame them for sucking the life out of me. I just didn't expect it. Nor do I accept it. I want to climb back up out of the hole I've dug myself into. I've just never known how.

The first freeplaylife challenge is about asking for what you want. One suggested way to go about this is to create a "Things I Want" board on Pinterest. So I started. And it was hard. Much harder than I anticipated. I really had to separate what I want as a mother from what Mindy wants. I'm not sure I was completely successful but I'm trying. Take for instance the 2002 BMW I came across while browsing other Pinterest boards. That was my dream car in high school. I'm still attracted to old and funky cars. "BUT!" my mother self says, "those cars are unreliable and don't come with all the safety features of modern cars to protect the children." "Shut up!" I told my self and pinned that car to my board anyway, but with the disclaimer that it was my dream of yore.

I think as mothers we just have too many selves to take into consideration. My three kiddos are extensions of me. According to research fetal cells sneak across the placenta and remain in a mother's body for decades - and our cells make their way into our babies. It's no wonder then that when considering what I want, the needs of my children would affect my decision.

So I'm still working on this. And I'm still working on me. My woman's circle has decided to take on the challenge which means that I have people to be accountable to. Some of it I may post here and some of it, like assbooking, I may skip all together.

Quiet return deux

I've decided to start blogging again. The problem is I don't know what I should blog about. My motivation seems to have disappeared. So I thought I'd ask you, dear readers, what it is you would like to read about on my blog. There's a problem with this, though, too. I don't have any readers anymore. The half dozen or so that I used to have disappeared shortly after my motivation slipped away.

It's been over three years since I last wrote regularly on this blog and I've searched so very deep to find the cause of this cessation. There was the big move across country that took so much out of me both during the journey and after, while we punched our way into making a life here in North Carolina. This transition obviously meant leaving behind an amazing and supportive community of like-minded moms - friends - the likes of whom I cannot find here. Then there's that darling daughter of mine who started talking around the time of this blog's demise and has not stopped since. I'm serious. The girl loves the sound of her own voice. And she has questions for every question. She talks so much that her words fill my head and there's no room left for my own thoughts.

So what has changed that I think I can start blogging again? Well, we still live in this town that just doesn't fit me quite right but the stress of the move is far behind us. And all 3 kids are in school full time which means that there is some silence in the early part of the day. Mainly, though, I want to start blogging again.

I'm not going to announce my return to blogging... yet. I'd rather test the waters first and see if I can keep up with this. If you happen upon this post feel free to leave a comment with some words of encouragement.

Remember the good ol' days...

when I used to blog frequently? I've missed my blog. Really, really missed it. I thought if I stopped blogging then all that writer-ly energy I put into my blog could go instead into writing better stuff. You know, less bloggy stuff. And I have been writing. But what I've found is that I pull material from my old blog posts and then dress it up fancier and take it out on the town. I need those old blog posts to feed my current writing.

So I'm starting it back up on a trial basis. This may be the beginning of something beautiful or it may be the end.

Warning: political post - but very important

I didn't want to get all political on my blog especially after being MIA for some time, but this is just too important to stay quiet about. There's been so much talk lately about what Sarah Palin can bring to the White House as a woman, a mother and the mother of a child with special needs. I implore you to please look past the pretty packaging and the sentimentality to the actual issues. I'm not a one-issue voter but I'm choosing to focus here on the issue of people with disabilities because of Palin's comment during her speech at the RNC. Palin said, "To the families of special-needs children all across this country, I have a message for you: For years, you've sought to make America a more welcoming place for your sons and daughters. And I pledge to you that, if we're elected, you will have a friend and advocate in the White House." But she never explained how she will befriend and advocate. She really sought to win over the emotions of Americans with children with disabilities. But what does the McCain/Palin plan say about specific actions they're going to take? And what does the Obama/Biden plan say? You can see Obama's plan for yourself here:
Obama's Plan to Empower Americans with Disabilities
And you'll have to search McCain's website for his particular stance. Let me know if you find anything.
McCain's site
But if you don't have time for what may be a fruitless search here's an article that will help explain it all. Please, if you have a child with special needs, know someone with special needs or just give a damn then please take a few minutes to read this insightful, comprehensive article written by a professor of history and director of the Institute on Disability. And then go out and vote for Obama!

An open letter to disability rights constituency

Pass it on!

A Day in the Life

Inspired by a friend who did this for a online board we're both members of, I took some photos throughout our day yesterday and put them together with some comments so you could get a peak into our life.

A Day in the Life of Mindy

Crap!

I totally forgot I had a blog.

Not really. But it sure seems like it lately, eh?

And I really used to like pesto

Last night after I had gone to sleep I woke to hear Clara whimpering. I reached over to soothe her and my hand landed in a warm, chunky pile of vomit. Ain't parenthood grand?

We had had spinach and cheese raviolis in pesto sauce for dinner so there was an abundance of green. And the smell was the same as dinner had smelled 6 hours earlier, except with a side of rancid.

This morning Clara asked for something to eat and I offered up benign foods free of color and strong odors such as bananas and shredded wheat. But she asked for an egg.

Her highchair still had remnants of the pesto from dinner last night and seeing that made my stomach seize. I was reminded of the time in junior high science class when I dissected an oyster and was disturbed to find the digested green algae in its stomach resembled pesto. I wouldn't eat pesto for years following.

Spring break on the NC coast

(Pssst... photos of the vacation in the Flickr badge to the left)


Taking a vacation with young children is not a vacation in the true sense; the word “vacation” conjures up feelings up rest and relaxation but if you put the word “family” before the word “vacation” you get a completely different feelings about the whole thing. Really, a family vacation for us is just moving our whole, crazy routine to a different location and calling it a success if we make it through without any casualties.

Recently we decided to uproot our family and temporarily relocate to a tiny, oceanfront condo about 3 hours away. The fact that we had to bring along so much stuff for Sam, including his beanbag, wheelchair and jog stroller, and were forced to climb over furniture and various children to move about the condo did not diminish our enthusiasm. Nor did we allow the strong winds, which picked up the sand and hurled millions of grainy bits at our exposed skin, to prevent us from enjoying the beach. And when Clara attempted to stick her head through the widely spaced bars of the balcony railing to peer down at the beach 3 stories below we simply put an end to family time on the balcony because, though the her head was just big enough to not fit through, she found the table and chairs perfect for climbing on to peer over the balcony rail.

Still, we were not discouraged and we took several little trips to surrounding towns to visit the various attractions. One of these trips included a visit to Wilmington where we toured the USS North Carolina Battleship. I’d never been on a battleship so I wasn’t sure what to expect. The boat was moored on the Cape Fear River and we crossed a bridge to board the top deck of the ship. I had Clara running free hoping she would tire soon and fall asleep in the backpack child carrier I had brought with us on board. But, see, being from California where everyone is afraid of lawsuits, we were used to the California standards of safety; if this battleship had been located in the Golden State we wouldn’t have been able to get within five feet of the boat’s edge. And, surely, there would have been a metal gate in front of a plexiglass barrier protecting us from falling down to the mesh netting that any good California company would have constructed below. But we’re in North Carolina now. And safety either just hasn’t caught on yet or there’s a lot more faith out here in people’s ability to take care of themselves. Because the only thing separating us from the murky waters far below was some low mesh fencing that began about a foot above the deck. And being much closer to the ground than an adult, a small child is surely going to see that whole foot as an incredible opportunity. There were also raised platforms on the ship that extended to the edge and if you stood up on the platform and walked to the edge like any self-respecting child would, then you only got protection from the top 2 feet of the mesh fence. So I started wondering how many little ones had gone over. There were lots of signs on deck about the battles and the number of men who had died on the ship back during the war. But I couldn’t find anything about tourist fatalities. I had already chased Clara away from edge several times and been over it in my mind how the whole tragic fall might go down and how I would have to jump in after her. Of course, I had no idea how deep the water was. If it was too shallow then we could get seriously injured in the fall. But if the water was too deep then there’d be no way I’d be able to find her in the muddy water.

About this time David and Jackson decided they wanted to explore the inner belly of the ship. Since Sam’s wheelchair could not go down I had decided to stay above deck with him and Clara. But Clara had other plans. The metal stairs leading down into the ship were narrow and almost completely vertical; in other words, they were treacherous. And to an adventurous toddler such objects of peril were irresistible. Unfortunately, she refused to go down without me. So down Jackson, Clara and I went into the ship, leaving David and Sam above, completely unaware of the extensive labyrinth we were entering. Clara was following her bliss up and down the metal stairs that were unbelievably abundant throughout while I held tightly to her hand and followed along. There were arrows with the word “tour” placed throughout the boat but at some spots there was more than one choice and not once did we see an exit sign. After about ½ of an hour it was becoming clear to me that this tour had no end and Clara was starting to get loopy as her naptime had long passed. Unfortunately, I had left the baby carrier above and was left with the options of either chasing her through the ship or carrying a squirming toddler up and down the dangerous stairs as we tried to fight our way through the other tourists back up to the surface. There were many dangerous areas where the floor was made of a metal grate with gapes and holes large enough to swallow up a wayward toddler. More horrifying was the possibility that one of Clara’s shoes might find its way down one of these holes and become lost forever because THAT was unimaginable to my little shoeophile.

Eventually we caught a glimpse of daylight and emerged from the steel maze to find David and Sam waiting for us above. Now in between freaking out about Clara’s safety and freaking out about being lost inside the ship I did take in enough of the tour to realize what a fascinating vessel it was and how interesting the lives of the men were who had served on it. So I urged David to leave the kids with me and go down to have a look. While we were talking I was trying to prevent Sam’s wheelchair from rolling away on the uneven deck and chase down Clara who was making a break for the side of the boat. I decided to put her in the carrier for safety and so she could catch a nap while David explored below.

By then I was feeling pretty good that we had averted all tragedy and I was heading up to the front of the ship. An older man sitting several feet away waved us over to have a look at something he apparently thought we should see. As I approached he pointed down over the boat where the water met some marsh land. I saw a blue heron there wading in the water but then the man said, “No, look there on land.” A few feet away I saw a very large, life-sized replica of an alligator. Except, see here again, I had forgotten we weren’t in California any more and that alligator was no statue. It was real and it had a name: Charlie. According to the sign on the ship that I had somehow missed while averting various perils, Charlie wasn’t the only alligator that lived in those waters. So then I had to recreate all those various rescue scenarios I had already worked out when I envisioned Clara going over the edge to include the possibility of a giant, hungry alligator. And from what I’ve learned watching nature shows once an alligator bites down on you he’s not letting go. After showing Jackson the alligator he informed me that, “Actually, Mom, if you shove your thumbs into the alligator’s eyes then it’ll let go.” So maybe there was still hope for little Clara.

As I relaxed a little with Clara safely in the carrier on my back, we explored the upper deck a bit more and Clara drifted off to sleep. Deciding to take in some more of the boat side scenery I walked over to the edge and stood looking out past Charlie. At this time one of Clara’s arms dropped loose by her side and the tiny baby doll that she had been carrying fell down from her arm. I watched as it tumbled under the mesh fence and stopped just inches short of falling into the murky waters below.

Mindy's lawn care guide to better living

So we had the new aide come this afternoon for Sam (more about that later) and I spent the first few hours going over stuff and that's when I realized how much stuff there really is to do for Sam. I mean, like seriously, I started wondering how anybody could possibly remember all this stuff. So I finally just shut up and figured it was going to be sink or swim for this new aide. So then she took him out for a walk and I was like, shit, now what do I do? I decided to take the other two outside and do some raking so we could mow before we leave on our trip since the grass has been growing so fast lately. But I'm out there with the wind blowing, leaves flying around feeling a little futile and realizing that raking takes a long time. What doesn't take as long is one of those smelly, obnoxiously loud leaf blowers that all our neighbors seem to use. Then I started thinking, if I had a leaf blower out here I wouldn't want the kids out with me 'cause it's too loud for their ears and I wouldn't be able to keep very good track of them. Also, I wouldn't be getting nearly as much exercise. And there was kind of a zen to the whole raking. Plus, the kids have their own smaller rakes to help.

I started realizing how *really* leaf blowers are actually more a waste of time because while I raked: 1) I enjoyed family time with my kids 2) I got exercise 3) it was peaceful and therapeutic. Basically I got more bang for my buck with the raking. Had I had a leaf blower out there I would have had to carve out separate time for the other 3 things and possibly spend money on such things as therapy for the stress inducing noise of the leaf blower. Or, if I paid someone to come do my yard, then David would have to work an extra job to afford it.

This can be applied to the mowing of the lawn too because while everyone else is paying to have their lawn mowed or sitting atop an expensive, loud ride-on mower, we're out there taking turns with our non-motorized push mower.

So either our lawn care routine is the cure to all of society's ills or I'm just trying to justify all the hard work.

And don't you even go there about how it would be better for all if we had no lawn at all because I know that, okay?!

Photos for peace - well, except for those first three

This is how we have fun on Friday nights around here.

Place the baby's pacifier inside the ball.


Watch as she struggles to get it out.


Laugh and say "how cute" when she fails at the impossible task and resigns to sucking on the pacifier through the ball.


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How to find an hour of peace: take 2 cranky kids, a bunch of toys, some bath bubbles and insert them into the bath tub. Now turn on the jets. Ahhh.... gives a whole new meaning to "Calgon, take me away."


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More tips on how to achieve peace: give your kids a shopping cart and access to the pantry.


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And this... this is what I get to crawl in to bed with at night. Those parents who maintain that a child's rightful nighttime place is in the crib are just missing the point completely.

Guess what's in Mindy's fridge?

So I made up some of that thickener for Sam's liquids and it works great. The thing is it's kind of a gross looking substance. The product sold in stores is a smooth, clear gel. But the stuff I made is neither smooth nor clear. It's gelatinous, all right, but it's kind of milky in color and resembles something that you most definitely would not want to put into your drink, if you know what I mean. And if you don't know what I mean then good for you... or maybe how sad. I'm not sure. Anyway, having that substance in our refrigerator is a nice companion to the frozen placenta from Clara's birth that we still keep in the freezer.

At this point some of you may be thinking, "But Clara was born in California and you're in North Carolina now... so how...?" And I'll tell you how. We packed up that placenta, put it on dry ice and shipped it across the country to a woman I barely knew here in NC. We labeled the contents as "meat." Very expensive meat. The woman to whom I shipped it was someone I had met on my visit to NC and we had spoken via the internet on a parenting type board. She had kind of offered when hearing about my placental dilemma, telling me she had a freezer in the garage with ample room for placentas and various body parts. So I took her up on the offer. When we arrived in NC I contacted her to try to pick it up but had a hard time getting a hold of her. Turns out her mom was in town so she had been busy but she later confessed that she had gotten a secret thrill by grossing her mom out with the information that she had another woman's placenta stored in her freezer.

Now you might be wondering why I've held on to the placenta for so long. And I'll tell you what I told the nice young gal at the UPS Store. "Let me lead off with this information: some people save the placenta to eat it. But not me. No, I just want to save it so I can bury it in my yard under a tree that we've planted. See? Not that weird in comparison."

But I have no explanation for that bottle of semen thickener in my fridge.

Victory!

Just got a call from Sam's case manager. We got Medicaid! What this means is that we have 4 hours a day of assistance during the week by a nurse and 32 hours per month of respite care. It also means that Sam's medications, Pediasure and diapers are paid for. It will also serve as supplemental insurance for any equipment Sam may need.

Maybe the universe isn't conspiring against our move to North Carolina after all.

Dysphagia is just a fancy way of saying "Oh crap!"

After all the stress was over with the Medicaid trial and the California tenant mess subsided everyone except David came down with a nasty cold that is still lingering on. Because we wouldn't want to actually enjoy the relative peace and calm. And I say relative because we're still under the influence of 3 mostly unreasonable little people, one of whom continually keeps us on our toes. Usually just when things seem to settle down with Sam he finds new ways to remind us that we can never let our guard down.

Last week Sam had an appointment for an upper GI and a modified barium swallow study. What these tests look for is not as important as what they found. First of all, Sam did awesome! That kid continues to amaze me. One of the things he had to do was drink some nasty, chalky liquid on command from a straw while lying on his back. Even I would have a hard time doing that but Sam did great. Anyway, they immediately saw that Sam refluxes (food and stomach acid come back up into his esophagus). We knew this but have never actually seen it on xray. The unfortunate thing is that Sam is already on the highest dose of reflux meds. The other finding is that Sam aspirates liquids (some liquid goes down his airway). This puts him at risk of pneumonia. Sam has had this test before as an infant and no aspiration was found so this was new to us. Fortunately, Sam has never had pneumonia.

We go back to the doctor soon for a follow-up and will hopefully get some better ideas for these issues. Right now we've altered his reflux med schedule a bit so he gets two smaller doses instead of one big one and we're thickening all of his liquids so they go down the right hole. The most convenient and least nasty thickening agent out there is very pricey and would cost us over $100 per month. A friend of mine suggested I try making my own thickening formula (other than using baby rice cereal which makes the liquid chunky and frothy - yuck! and can contribute to Sam's constipation issues). At first I thought, "yeah right like I have time to figure that out." But I was compelled to google and immediately found a recipe for that pricey gold standard of thickening agents. The main ingredient is xanthan gum which, turns out, is sold at Whole Foods for a fraction of the cost of the thickener itself.

So today's project is thickening agent production. Yay.

An update

The appeal hearing went well today. The hearing officer was a very nice, down to earth and intelligent woman who let us know at the end of the hearing that she would overturn the decision based on the reasons given. But this doesn't mean that Sam gets the services. All this means is that the basis of their denial was found to be false but they could still potentially find other reasons to deny the services.

This particular CAP program is intended to serve children with a medical diagnosis as opposed to a behavioral or developmental diagnosis. The basis of their argument was that Sam had a primary diagnosis of "mental retardation." Yeah, I know, some people haven't evolved in their nomenclature like the rest of us. But nowhere in any of the records that I sent them did it indicate anything but a primary diagnosis of Joubert Syndrome which is a brain malformation, thus a medical diagnosis. So we had to go in there and show that, despite the fact that Sam may be cognitively impaired (though he's never been tested because you try administering an IQ test to a child who is functionally blind, ataxic, hypotonic and cannot communicate due to his, oh, I don't know... SEVERELY MALFORMED BRAIN!), his primary diagnosis is still a medical one.

Now go back up and re-read my description about the hearing officer because as much as I would like to write the same about the nurse who was responsible for the original denial... well, I just can't. I had had the ill-fortune of conversing with her over the phone when we first received the denial back in November. And she was at the hearing today. She began the meeting first by asking the hearing officer if the children's presence would cause problems. We had brought Sam thinking that they might actually want to meet the child about which they're making the decision. We also brought Clara just 'cause she's so cute. Bonus points, you know? Fortunately, the hearing officer seemed to really like kids, had no problem with their presence and told the nurse as much.

So now we wait. And if we are denied again then Disability Rights North Carolina, a non-profit organization in Raleigh, has already told us they will send an attorney with us to court to fight it. But I really don't want to have to do that.

A plea for positive thoughts

Tomorrow at 11:30am (EST) we have an appeal hearing scheduled with North Carolina's Division of Social Services to request that they overturn their decision to deny Sam Medicaid benefits through their Community Alternatives Program. A Community Alternatives Program (CAP) is one which waves the parents' income and bases eligibility instead on the needs of the child; the goal is to offer support to the family so that the child's needs can be safely met in the home and the community, as opposed to in a hospital or institution. It's a win/win situation in that the parents do not have to shoulder the entire costly and physically and emotionally taxing load of caring for a child with a severe disability, and the state does not have to pay for the total care of a child who has been put into an institution because his parents couldn't handle the job, had become hopeless drug addicts just to cope, or were out whoring their bodies on the street just to cover the medical costs. See. Win/win.

But Sam was denied these services. Services that he received from a very similar program in California. Now anyone who has met Sam knows that his daily care is total and exhausting, that his inability to take care of even his most basic needs is due to a medical condition which affects several parts of his brain. According to the NC CAP program, Sam is exactly the type of child for which this program was intended. But, you see, the people who made the decision to deny him services have never actually met Sam. So, tomorrow, armed with 5 years worth of medical records, a nurse, a legal aide, letters from doctors, and our own statement we will go into the appeal hearing and formally introduce them to Samuel.

Wish us luck.