Research

Posted on June 7, 2016 by saussi77

Today is an important day. It’s my parents’ 52nd anniversary. It’s also the first day that Gracie’s 1:1 from school watched the kids—she is our nanny for the summer. And, it’s the day I got an email from the genetic research group saying they found mutations they believe are responsible for Gracie’s symptoms:

Dear Susan:

Since we sent Grace’s genetic test result in July, 2015 the genetic researchers here have continued to search for a genetic cause for Grace’s symptoms.

I am writing to you now to let you know that we have identified genetic mutations that we believe are likely to be the cause of Grace’s symptoms.

!!!

They found something?! They found something!! Mutations—plural??

I spent the rest of the day shell-shocked. Not happy, although not unhappy either. Confused, anxious, worried… unsure what this news will bring. Unfortunately, I don’t have the results yet; the research facility will only release them to a doctor. There are results for me and Chad, too, relating to the mutations they found for Gracie. The person at the research company offered to send them to our doctors or Gracie’s doctor or both. I went for both; really, Gracie’s doctor is the only one with a vested interest in the whole thing. Also she’s the one who is most likely to share the results with us, instead of filing them away and forgetting about it. I’m not even sure my doctor would call me to tell me they got the fax/email/whatever.

I feel trepidatious about the whole thing. It likely won’t change much about our day-to-day life, but it may change Grace’s prognosis. It may make our worst-case-scenario a reality. Or, maybe not. Hopefully not. How I hope that it will not.

Regardless of the results, this will probably foreclose any opportunities we may have had to have another baby. I desperately want one more child—one more chance to get baby snuggles, see all the firsts, watch the miracle of life unfold. Gracie wants me to have another baby, too, so she can mother it and dress it up and play with it. If we have a lethal genetic combination, though, how could we gamble with another child’s life? It’s a terrible decision.

After so many years of testing and so many unusual results, I had pretty much given up on ever finding an explanation for Gracie’s symptoms. I had started to believe the ophthalmologist’s  tongue-in-cheek diagnosis of “Grace Disease.” I had decided that Grace was pretty much the only one like her. Now, maybe that’s not the case. Maybe she’s not the only one after all. Maybe she has a mutation that has been found in others.

Getting a diagnosis is a hard experience. It seems like it would be great to know what’s going on, but really it is a chance to reopen wounds that have long-since healed, a chance to revisit all the worries and fears of the early years, a chance to have your worst fears confirmed. It is not a relief; it is a heavy feeling to finally know. Even when the diagnosis is not too bad, even when it is something treatable, it is hard to hear it at first. Those are heavy words.

Eventually, the shock will fade and we will get on with our lives. Even with the worst diagnosis possible, we will carry on. And hopefully, it won’t be that bad. After all, we’ve already been through so much and we’ve always made it through—we will make it through this too.

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Supplies

Posted on June 1, 2016 by saussi77

A few weeks ago, I spent hours on the phone with people at a medical supply company and Gracie’s insurance company trying to get one of her expensive wound care supplies covered. This particular product is pretty cool. It is a felt-like material infused with silver. When it’s dry, it is soft and easily pulled apart like felt. When it’s wet, though, it turns into gel. It is ideal for infected wounds, because it soaks up the goo that seeps from the wounds and simultaneously infuses the wounds with silver, which is anti-microbial.

At first, I tried to order it the way we order all of Grace’s other wound care supplies—by emailing her doctor and telling her what we needed. A few days later, her nurse called me. The medical supply company refused to fill the order, something about not being compatible with Grace’s insurance. The nurse asked if I would call the supply company. So, I did. The medical supply company folks said that they were not allowed to fill the order for this particular product when Anthem is the insurer. That person recommended that I call Anthem and try to get it approved. So, I did. The customer service rep who first answered the phone eventually transferred me to a supervisor. I explained the situation to the supervisor—that the supplier wouldn’t fill the order because of a block in their system with Anthem, and this particular product is unique, and it helps keep Grace out of the hospital when she has severe wounds. The supervisor was very sympathetic; I got the impression that she would have given me the product right there if she could have. She said that she was a mother, too, and even though her three kids were healthy she couldn’t imagine having to deal with all this. (She was one of the people who called me a good mom.) She, unfortunately, did not have the power to resolve the problem, so she transferred me to the appeals and grievances department.

A couple days later, the person from appeals and grievances called me back. She asked some questions about the product, and how often we go through it (our last box lasted three years, so not too often), and said she would approve the product. I told her that the real problem was that the medical supplier wouldn’t place the order, so she called that company.

A few days after that, the nurse from Grace’s doctor’s office called me back. She had just gotten a message that the medical supply company deleted the order since it had been inactive for so long. Again, she asked me to call the medical supplier to try to get it worked out. So, I did.

I was frustrated when I made that call. I asked for a supervisor immediately, but the initial customer service rep wouldn’t transfer me without knowing what the issue was. When I started describing it, she knew exactly which patient I was calling about. She was defensive, as was her supervisor. The supervisor said that because there is a block in their system for all things Anthem, they could not order the product. She said it’s probably because Anthem won’t pay them much for the product, so it’s a contractual issue. I told her that the victim of her company’s rigidity was a five-year-old child. The person who is being harmed by the company’s refusal to fill the order is a sweet girl, a little child who can’t help that she was born with a disability. She didn’t really care… there was nothing she could do to change the system. At that point, I asked to speak to the company director of consumer relations. She transferred me to the corporate office.

The CSR at corporate was nice, at least. She listened to my story and told me she would transfer me to a certain person who was the company’s equivalent of a director of consumer relations. I left a voicemail for that person, short and succinct but again remarking that the person suffering because of the company’s policy was a five-year-old child. She called me back later that day.

The person in the corporate office was kind and understanding. She offered to send me a box of the wound care supplies for free, but I told her that it still didn’t solve the problem—their company’s policy was still in place. She said she had spoken to the appeals and grievances person at Anthem, and that person informed her that if I paid for the supplies out of pocket Anthem would reimburse me. She said that because of the way their warehouses were set up, they couldn’t ship certain supplies to certain locations. They were not legally allowed to send this particular supply to patients in Colorado because of industry regulations. That made no sense to me, since she was willing to send me a box for free. But whatever.

I go back and forth on whether I should have allowed her to send me the free box of supplies. On the one hand, the company probably has a budget for that sort of thing. On the other, it is the insurer’s responsibility to fulfill my daughter’s medical needs. Ultimately, I set up an online account and purchased the supplies, paying out-of-pocket with only a momentary worry about whether we had enough room on our credit card.

I still haven’t sent in the invoice for reimbursement. That involves yet another phone call to Anthem, and waiting for a response, and hoping it’s an appropriate response. I already feel defeated by the whole experience. I’m glad this is a once-every-three-years purchase; I’m not sure I could handle dealing with this more often.

So what’s the punchline, you ask? Well, the product finally came. I opened the box, took out one of the sheets of dressing, and opened it. It’s the wrong thing—I needed the sheets without thread, and these are the sheets with thread. ARGH!!! I probably can’t send the box back since I opened it. I definitely can’t afford another box of expensive wound dressings. And I’m so, so sick of dealing with these people.

I may call the nice person in the corporate office. I will almost certainly send in the invoice to Anthem. And I will be VERY glad that we only have to deal with this every few years.

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The Haps

Posted on May 24, 2016 by saussi77

I wanted to write a post about my little ballerina, who is such an amazing dancer and did so well at her recital Sunday. She knew all the moves; the other girls were looking to her for what to do next. She wasn’t scared this time. She’s a pro. I posted a video of her rehearsal on my Facebook page, and each time I watch it my heart swells with pride. A good friend took a video at the actual recital (I couldn’t—I was the class mom and was waiting backstage while they performed). That one makes me tear up. There is a point where the whole audience starts cheering, presumably because the adorable little ballerina with the helper just made it all the way around her circle without any help at all. So sweet.

I wanted to write about the end of the school year, too. Gracie’s last day of school is Wednesday. She will have a little kindergarten graduation ceremony and I am so hoping they have caps and gowns for the kids. They are doing some song-and-dance numbers, so that promises to be adorable. There is nothing cuter than little kids singing and dancing.

I wanted to write about all the other stuff we’ve been doing, too. I had my last leadership training session last Thursday—it was a class for parents of disabled children, and it was so awesome. I presented my community project to the class Thursday. I put together small gift bags for parents of children who have recently been diagnosed with a serious illness/disability/life-changing condition. The bags are a little less, er, robust than I originally imagined, but still sweet. They contain a little package of chocolates (Hershey Hugs and Kisses—symbolism is big with me), a small package of kleenex, and a pamphlet with some encouraging words and some resources, like info about specific conditions, IEPs, advocates, etc. The last page of the brochure has some inspirational quotes I found on the internet, like this one:

A bird sitting on a branch is never afraid of the branch breaking, because its trust is not on the branch but on its own wings. Always believe in yourself.
-Author unknown

And this one, one of my favorites:

You never know how strong you are until being strong is your only choice.
-Bob Marley

And this one too:

Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength.
-Mahatma Ghandi

I also wanted to write about the end of an era for Jackson. He will be switching schools after this year—he is going to go to the public school Gracie attends. He seems fairly nonchalant about the whole thing, but I’m nervous. I don’t know how the kids at Gracie’s school will treat him. Will they accept him? Will he do okay there? Will he want to go back to St. B’s? And, as the school year winds down, I am feeling nostalgic about all the things we’ll miss next year—the annual silent auction, the school musicals, his friends…

Speaking of musicals, Jackson just had his spring musical last week too, on the same night as my last class. He had a solo in the musical, and he did great! I’m so proud of him for auditioning for the solo, and for getting it, and for getting up on stage and performing in front of all those parents. He was super nervous, at least during the daytime performance when I saw him, but he got through it and sang loud and clear. He’s got a great voice and perfect pitch. I am hopeful that his musical talents will be encouraged at the new school. I’m hoping his artistic abilities will be recognized, too. He is very talented and always has been.

Finally, I wanted to write about my anniversary. Chad and I will celebrate eight years of marriage on Wednesday. Eight looooonnnnnng years. It’s amazing that he’s put up with me this long. But we’re in it for the long haul, and each year we grow a little closer. All those monthly disagreements fade in the love we share. I can’t imagine a world without him. Well, okay, I can imagine it—our house would be cleaner, sure, but there would be less laughter, less togetherness, and it just wouldn’t be the same.

These days have been so full of happenings—full to bursting—but so rich. I am grateful. ❤

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Hot Hot HOT!

Posted on May 18, 2016 by saussi77

We have three different types of nerves in our bodies: motor, sensory, and autonomic. Motor nerves control movement. Sensory nerves control sensation. Autonomic nerves control the things we don’t think about—digestion, circulation, and body temperature, for example. Most of the people with congenital (from birth) sensory nerve issues also have autonomic nerve issues. Gracie is no exception.

We had a scare a few nights ago. We went out to eat as a family at a restaurant we haven’t visited for a while. It was very busy, and also very hot. Gracie doesn’t do well in hot environments; her internal thermometer cannot recalibrate quickly, so when the external temperature is warm, her internal temperature keeps rising and she cannot cool herself down. The rest of us use our autonomic nerves to trigger our built-in cooling mechanisms, so when we are in warm environments, our bodies start to cool ourselves down with our own internal processes. Since Gracie’s nerves are dysfunctional, this doesn’t work for her. It takes her much longer to adjust to a room’s temperature than it does the rest of us.

While we were at the very hot restaurant, Gracie started melting down immediately. She held it together pretty well, considering, but the longer we were there, the worse she got. Unfortunately, because the restaurant was busy, it took a long time for our server to get our order, bring our drinks, and get the food. By the time he delivered the food, it was over for Gracie. She was complaining that her tummy hurt, she didn’t feel well, and she didn’t want her food. You know something’s wrong when Gracie won’t eat french fries dunked in ranch! Eventually, she lay down under the table while the rest of us continued eating.

Finally, our server came back, and we got the check. We hustled Gracie out of there, taking her outside with no coat so she would cool down faster (it was pretty chilly outside, in the 40s or so). As soon as we got her into her car seat, Gracie fell asleep. Or should I say, she passed out.

At home, Chad carried Gracie into her bed, and I tried to cool her down. I put ice packs on her neck and undressed her. She didn’t wake up. I changed her into pajamas. She still didn’t wake up. I tapped on her shoulder and face, calling her name. She still didn’t wake. By this point, I was getting worried. Should I take her to the ER? Is there anything the hospital could do for her? Would she wake up as soon as we got there? Her vital signs were normal; I didn’t think the hospital would be able to help us. I decided to wait it out.

Since there was school the next day, I had to do our wound care ritual. I removed the bandages from all her fingers, not at all trying not to wake her. Nothing. I washed her hands thoroughly with a wet cloth, and rubbed her face with it too. No response. I re-bandaged all those little fingers, carefully and methodically. She slept through it. Throughout it all, I would periodically tap her shoulders and call her name. I tried pretending she had to get up for school, or that dinner was ready, or her dolls needed her. She did not wake up. She would occasionally turn her head away from me but did not wake up. Nothing I could do would wake her.

I reached out to the other parents of painless kids, and found out that several of the children are unresponsive when they overheat. Indeed, many of them have to sleep for several hours before they can awaken. Although it’s reassuring that this reaction was not unusual, it is scary and nerve-wracking to have a kid who won’t respond.

Gracie woke up the next morning at 6 a.m., eager to do a little playing before school. Other than being more clumsy than usual, she seemed totally fine. (Clumsiness is related to overheating—her muscles get weak so her ataxia is worse than usual when she overheats.) She had a great day at school that day, and was generally completely back to normal.

You would never know she had had a medical emergency the night before. But then, that’s pretty typical of Gracie. She is amazing, both personally and medically.

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Leader of the PACK

Posted on May 13, 2016 by saussi77

A few days ago, we got a postcard from Gracie’s school, inviting us to an award ceremony. It said, “Your student will be receiving an award.” The next day, Gracie’s kindergarten teacher emailed to let me know she nominated Gracie for a PACK Award, essentially a citizenship award for the school.

Tonight was the night of the award ceremony. It was also the night of a pep rally for the run I’m participating in on Sunday. It was also Jackson’s first day back at school after being ravaged by the stomach flu. Chad and I worked out the logistics last night—he would pick up Jackson and bring him home to do some of the massive makeup homework, and I would get Gracie and take her to the pep rally halfway across town.

The pep rally was fun, and I didn’t want to leave. The charity partner for which I’m running is a group that provides legal services to people with disabilities and the elderly, and they are good people. It was great to chat with them. I’m proud to be running for them, even if I’m more overweight and out of shape than I’ve ever been for this run. Sooner than I wished, we tore ourselves away and made the slow trek across town to Gracie’s school.

Traffic was miserable; each street seemed busier than the last. Although my phone said the drive would take 28 minutes, it took us around 60 minutes to get home. The awards ceremony started at 5:30, but we didn’t even get home until after that. Chad quickly changed Gracie while I got ready and we headed out the door, just as I got a text from Gracie’s helper. We rushed to the school and into the lobby. Gracie’s helper met us and told us they were just doing the kindergarten awards. She ushered us to a side door so that Gracie would not have to climb stairs to the stage, but it was locked. We hurried back to the main doors just as Gracie’s teacher was on stage. We literally walked in as Gracie’s name was called, and went straight to the stage to claim her award.

Gracie didn’t realize what was going on until after we got back to our seats, which turned out to be a good thing. Once she discovered that she had gotten an award, she was sullen and withdrawn. She refused to smile and obviously was upset. Once again, she had been singled out. It didn’t matter if it was a good thing—Gracie doesn’t like the special attention.

The other kids who received awards were glowing, especially the older kids. Several of the middle schoolers who help in Gracie’s class received PACK Awards, and they all seemed very proud of themselves. Maybe when Gracie’s in 7th or 8th Grade she’ll appreciate this sort of thing more. Maybe by then she’ll realize that she didn’t get the special award for her differences—or at least, not for the “bad” ones. She got this award because she’s an awesome kid.

Even if she doesn’t understand, we do. We’re so proud of our Amazing Gracie.

Gracie-PACK_Award

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Mothers

Posted on May 6, 2016 by saussi77

Several times over the past few days, people have told me what a good mother I am. At the hospital, the ER doc told me I was a good mom just moments after she entered the room. (She actually said it was so refreshing to talk to someone who was able to give such a complete and detailed history.) Then, up on the floor, the nurse who did Gracie’s admission also told me I’m a good mom. She had been talking to me for just a few minutes when it happened. Then, last night at the urgent care, the EMT who was helping me told me I was a good mom—Gracie wasn’t even there and he still said it. And today, after spending 45 minutes on the phone with Anthem, trying to get Gracie’s wound care supplies approved, the supervisor with whom I was speaking told me I was an awesome mother. (I have a feeling she was a mother, too, and was wishing she could have just given us the wound care supplies right there over the phone.)

How do these people know what kind of mom I am? They don’t even know me, and some of them don’t know Grace either. What is it that makes them think I’m a good mother?

I certainly don’t feel like I’m any different than any of the other moms I regularly encounter. I love my kids ferociously. I would do anything for them, and will be there for them for the rest of my life. True, some of the things we go through with Gracie are different than what many people encounter. But being willing to go through those times doesn’t make me any different than any other mother—any mother would be there for her child and do whatever is needed to help her child thrive. Any good mother, at least, and most mothers are good mothers. Most of the mothers I encounter would do anything for any of their kids.

Some of the times we have with Gracie are enormously stressful. Sometimes, she goes from basically fine to needing hospitalization within minutes. Sometimes, it’s all we can do to get through the moment. Sometimes, she is experiencing such horrible illnesses we worry she won’t get through them. Those are scary times.

Some of the times we have with Jackson can be stressful, too. It’s a different kind of stressful; with him, most of my worries are for his future. I worry that he is so sensitive that his sweet soul will break before he reaches adulthood. I worry that his anger will overtake the goodness in him. These are not immediate, life-threatening worries, but they too can be stressful.

Some of the times for every parent, it can be stressful. Kids know how to push buttons, and know to push them at the worst possible times. Kids push us to our breaking points, then do something cute and totally melt our hearts. It’s a tough gig, this parenting thing.

Getting through the tough times must be what makes us good parents. And I suppose people recognize that we go through many tough times—we go through things that many parents do not. I know the hospital folks got a glimpse of exactly how much time we spend on wound care each day (spoiler alert: it’s A LOT). Maybe that makes me a good mom. Maybe having gone through all these very stressful times makes me a good mom. Or maybe, maybe just loving the heck out of my kid makes me a good mom.

Celebrating all the moms who love the heck out of their kids, today and every day. Happy Mother’s Day.

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Red Tape

Posted on May 2, 2016 by saussi77

Hello from the hospital. Yep, we’re still here, despite getting the doctor’s okay to go home two days ago. We are still here because insurance company employees don’t work on the weekend.

Gracie has had many, many courses of antibiotics in her short life. She has had more types of antibiotics than I can probably name here, although I’m going to try anyway: Augmentin, Amoxicillin, Bactrim, Cefalexin/Keflex, Cefdinir, Cefepime, Ceftriaxone, Clindamycin, Daptomycin, Levofloxacin/Levaquin, Linezolid/Zyvox, and Vancomycin. I may have forgotten some; the point is, she has had a LOT of antibiotics. Most have been for Staphylococcus aureus (staph) infections of the fingers. In the summer before she turned 2, she probably had ten courses of antibiotics for cellulitis infections in her fingertips, culminating in her first long hospital stay for gangrene and osteomyelitis and a subsequent 5-month course of Clindamycin and Levaquin.

Antibiotics are similar to other drugs, in that the more you take, the less effective they are. She has had so many courses of Keflex and Clindamycin, for example, that neither helps her much anymore, at least not for staph infections. She is allergic to Bactrim, a more heavy-duty drug that treats staph infections, so that’s off the list of possible treatment options (she got a skin rash from that drug, erythema multiforme, and it can be very serious, even leading to blindness in some cases, so we’re not willing to try that again). She’s also allergic to Vancomycin, one of the big-gun drugs to treat staph—she gets a reaction called Red Man Syndrome, which makes her really itchy and makes her head turn red. Even trying to ward off the reaction with Benadryl doesn’t help; she is miserable with Vanco. The weird thing is that Vanco doesn’t really seem to help her, anyway—when we’ve given it to her in the past, it hasn’t changed the course of her infections. So, she is left with one option for treating staph infections: Zyvox, or linezolid.

Linezolid (lihn-AY-zoh-lid) is very expensive. One time, we couldn’t get insurance approval for whatever reason, and the pharmacist told me the prescription would be $3,499 out of pocket for a two or three week supply. Um, no—not able to front that cost! We had to jump through several hoops that time, but we eventually got the insurance to pay for the medicine.

So, speaking of hoops, back to why we’re still here. On Saturday, the hospital’s new infectious disease doctor said that he would be fine with discharging her on oral linezolid. He asked if the insurance would pay for the med, and I said they always have in the past, but they require pre-authorization and the pharmacy needs 24 hours to fill the prescription because they don’t keep it in stock. He spoke with the hospital’s case management team, and they contacted Anthem, Gracie’s primary insurer, to start the authorization process.

I found out later that day that they could not get pre-authorization for linezolid because Anthem was closed. We would have to wait until Monday, when the business office opened again. Today is Monday, and presumably everyone’s back to work, but we still haven’t gotten the authorization for Gracie’s expensive medicine.

It is incredibly frustrating that the insurance company is keeping us here. Apparently the good folks at Anthem would prefer to pay $15,000 for a hospital stay instead of simply approving the medicine that they’re going to have to approve anyway. Even though there are several legal proscriptions against insurance companies practicing medicine, that is effectively what’s happening here. The insurance company is dictating Gracie’s treatment because they are preventing her from receiving the medicine she needs.

There are two sides to every coin, and I am trying hard to understand the insurance company’s reasoning in requiring pre-authorization for this medicine. It is VERY expensive; to contrast, a run-of-the-mill antibiotic like Augmentin costs approximately $18 without insurance. Clindamycin, which is also one of the higher-end antibiotics, costs about $90 per bottle without insurance. Linezolid costs about $1,200 per bottle. I can understand that the insurance company would want to discourage doctors from prescribing this very expensive medicine.

However, most doctors are reluctant to prescribe antibiotics at all unless necessary. Most prefer the course of least intervention, and follow the axiom that it’s best to do the least-interventive measure first, because if that doesn’t work there is something else to try. Most doctors would not prescribe linezolid to anyone who didn’t need it.

Gracie absolutely needs it. She has had so many infections and so many courses of antibiotics that she (0r rather, her staph bugs) are resistant to everything except the big-guns. We try very hard to keep her off antibiotics; I treat everything I can at home without medicine, but there are times that the infection turns a corner, like it did this time, or gets drastically worse, like has happened so many times in the past, and antibiotics are our only option. We try our best to stay out of the hospital, but it doesn’t always work (as evidenced by the fact that this is her 11th hospital stay, all for types of infections). Hospital stays are our last resort, our final intervention.

This hospital stay has been unnecessarily long, all because of insurance red tape. It is incredibly irritating and frustrating to know that we are only here because no one at Anthem was working this weekend. We are only here because Anthem would rather pay for extra days of hospital costs for Gracie—and who knows how many other people—than pay for one employee to be on call or at work on the weekends. We are only here because Anthem is dictating Gracie’s medical treatment by denying her physicians the opportunity to make intelligent and reasoned decisions about which antibiotic she needs.

We are only here because of red tape. But GAWD, that red tape is hard to get through!

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This Hospital Life

Posted on April 30, 2016 by saussi77

The times between Gracie’s hospital stays are getting longer and longer. Gone are the days when she spent more time on antibiotics than off. She is getting stronger. Before tonight, the last time she was hospitalized was last September—over seven months ago.

That’s not to say she has fewer wounds, though. Lately she has become an expert at removing her own fingernails; say the word and she’ll rip one right off. Sorry to those of you who don’t live with a person who doesn’t feel pain. I imagine hearing what Gracie does to herself is a bit like watching Black Swan—that scene where Natalie Portman’s character rips her hangnail sends shivers down my spine.

We started today’s healthcare journey last night. While doing our nightly wound care ritual, I noticed one of Gracie’s wounds was looking worse. The purplish area at the tip had spread, the bone was prominent, and there was swelling on the finger. It wasn’t so much worse that she had to be rushed to the ER, but enough to make an appointment with her pediatrician as soon as practical.

Today, I picked her up from school for her doctor’s appointment. Gracie was acting strange. She was complaining that her legs and arms ached, she didn’t want to walk, she was warm to the touch. With a sinking feeling in my stomach, I took her to the pediatrician, and sure enough her temp was 100.2. We were going to the hospital.

The ER was very busy when we got there. Usually the waiting room is a ghost town; tonight there were two other children waiting to be seen. We were placed in the “last resort room,” the room with no TV and no entertainment and where everything can be locked down if someone is having a psychiatric emergency. We have been to this ER enough to know that if we are in the lockdown room, that means every other room is full.

You never want to be the person seen first in a busy ER. That dubious honor is reserved for people having life-threatening emergencies. Having to wait in a busy ER means you’re not dying. It wasn’t even a long wait for us, but longer than normal. They were jamming. I could hear the oxygen monitors binging in the nurses’ station. It’s a dreadful sound, one I’ve awakened to far too many times, the sound of a faint beep that gets louder and higher pitched as the pulse oxygen level sinks or if it stays below a preset level for too long. Even hearing the sound on TV evokes a visceral reaction in me.

We waited and waited while tests were ordered and specialists were called. Dinnertime came and went; luckily I had the foresight to bring snacks, which Gracie devoured. Eventually the doctor came back and told us that she had spoken to all the specialists and reviewed all the test results, and they were just waiting on a room upstairs. She hustled back out the door, leaving us to wait again.

Gracie was remarkably patient for a 5-year-old. She played with her dolls, she watched her iPad, she snuggled me, and she mostly was fine. She asked a few times when we would get to go upstairs, but never threw a temper tantrum or otherwise misbehaved. Her natural zen-ness is truly amazing.

Finally, the transport person came to take us upstairs. On our way down the lonely hospital hallways, glistening rocks outside a window caught my eye. A sudden and overwhelming longing to smell the outdoor air, feel the coolness, watch the snow, flooded through my soul with the heart-wrenchingly agonizing realization that we wouldn’t be out there for days. Shoving the thought aside, I strode alongside my beautiful girl’s bed, seeing her golden hair curl around her sweet face as we walked through the empty halls.

The finger wound that brought us here did not look that bad tonight. Although there is a dark purple ring of gangrene around the missing nail, the finger itself is not too red, not too hot, not too swollen. If she had not had a fever we would be home tonight—those words bring back the pang of sadness, the agonizing longing to forget this hospital life.

Sometimes I marvel at this whole world I never knew before. This hospital room, so intimately familiar, would have been completely foreign to me without Grace. We have stayed in this same room three times now. We know the nurses, the doctors, the aides. I know where the linens are, which snack station has the coffee and which one has the crackers, which hallway leads to the NICU and which one leads to the oncology ward, where the playrooms are. It is familiar, and yet so far from home.

Gracie loves the hospital. She loves the bed that moves, ordering her favorite foods, taking a bath in the tub with the wide ledge for sitting, playing in the cupboards and drawers, talking on the phone after I unplug it from the wall, and more. What she loves most of all is getting mom time. All mom, all the time. We snuggle, we play, we talk; it’s joyous. It’s Gracie’s favorite part, and probably mine too, but I can’t enjoy it without remembering the agonizing separation from my son, my husband, and even my dog and cat. Thankfully, this time, Jackson is spending the weekend at a friend’s grandparents’ cabin in the mountains. He will have two days of blissful ignorance. With any luck, we will be out by the time he gets home, and he’ll never know the stress he missed.

The hospital life is hard on Jackson. He misses me and Grace, he’s worried about his sister, and it’s stressful for him to have to change his routines. Truthfully, it’s hard on all of us. Even Gracie, although she certainly enjoys it more than the rest of us. It’s stressful, worrisome, draining to live this hospital life. Even when it’s familiar and even when we know it won’t be a long stay, it sucks.

It sucks.

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IEP

Posted on April 27, 2016 by saussi77

As you’ve probably noticed, it’s been a while since I wrote anything here. I learned a long time ago, when I used to paint, that creating art works a lot better when you have a vision. When you have an end result in mind, the art flows off the fingers and onto the canvas—or page. But, without that clear vision, the art comes out jumbled, messy, uninteresting.

That’s my excuse, anyway. The muse has been absent so I’ve chosen not to write about our boring day-to-day happenings. Until today, that is.

Grace’s annual IEP meeting is tomorrow. The special education teacher at her school tells me that this meeting should be a piece of cake—everyone knows Grace, they have a pretty good idea of what she needs, and this is basically just a review. Today, the SPED teacher sent me the draft IEP report to review for tomorrow. The first couple paragraphs caught my eye:

Grace is a 5 year old girl in a general education kindergarten classroom. According to her teacher, Grace is a very hard worker. She is a great listener and follows classroom routines well. She has lots of friends and participates every day in class. Academically, Grace is on grade-level in all areas. In math, she is able to add and subtract. In reading, she is able to sound out and blend words. Grace is also able to self-advocate, and willingly uses all her accommodations. She is a pleasure to have in the classroom.

Grace was interviewed by the special education teacher. When asked to name things that she likes about school, Grace stated, “what the teacher does for me, like learning” and “friends, like R___ and B____ and K___ and R____ and K______ and S_______ and R____”. When asked to name things that she doesn’t like about school, Grace said, “homework, because it’s too boring” and when the “teacher doesn’t always do fun stuff”. When she’s not at school, Grace likes to play if she doesn’t have homework, and ride horses. When she grows up, she wants to be a doctor and a mom.

Haha! Typical Grace. She’s feisty and outgoing and fun, but bring out the homework and face a charge of being BORING. That’s my girl!

The IEP report continued with recitals of her test scores. She is above expected levels in all areas. She is independent with math, doing addition and subtraction by herself. She no longer needs help from the school’s occupational therapist, as she is able to write letters and numbers appropriately. She excels at academics.

The reports of the physical therapist and vision teacher were not quite as rosy as that of the classroom teacher, but still not bad. The PT noted that Grace is getting better at standing still and kicking a ball, while the vision teacher found that Grace is having no trouble reading kindergarten classroom materials. She still needs to work on scanning her environment BEFORE she starts to go full-speed across a room, as she frequently trips over objects/people on the floor and nosedives over them. She needs to work on using her walker religiously to give her stability. She needs to continue receiving help from her ISP (one-on-one helper) for safety and because she cannot do any activities of daily living on her own.

After reading the IEP report, it’s clear that the school understands Gracie. Each member of the IEP team commented on how delightful she is, how fun she is to work with, how pleasant it is to have her there. They also each accurately portrayed her strengths, and some accurately noted her weaknesses, too. They know her and are taking good care of her.

My job tomorrow should be pretty easy. We will probably sit around the conference table trading stories about cute things Gracie did. I have a few questions but no major concerns. I realize this may not always be the case—there are so many IEP horror stories out there—but tomorrow’s meeting should be a piece of cake. It’s amazing.

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Differences

Posted on March 30, 2016 by saussi77

Back around Martin Luther King Day, I had a talk with the kids about discrimination. My kids are lucky in that they have not experienced much discrimination in their lives—even Gracie hasn’t really seen much of the worst of people. Because of that, they really didn’t understand why the Reverend Dr. Martin Luther King, Jr., was such an important man.

We talked about how some people they go to school with have different colored skin, and how there was a time when that wasn’t allowed. The kids puzzled over that one for a while; it is hard for them to comprehend why anyone would not be allowed to go to school just because their skin is a different color. We talked about how it’s not fair to treat people like that, how it’s not fair to be mean to others because of things they can’t help. We talked about how people are people, and although some people may look different, they are still people and deserve to be treated well.

The kids were anxious to hear that Martin Luther King succeeded, that racism was no longer in existence. I wish I could have told them that, but running through my mind were Trayvon Martin and Ferguson and Freddie Gray and Sandra Bland and the thousands of people of color shut away in prisons across the country for the crimes of driving while black, or walking while black, or living in the wrong part of town. I read those cases where a black man in rural Oklahoma doing absolutely nothing wrong gets pulled over for a BS traffic offense and ends up in federal prison, or where a black man dealing crack cocaine gets busted and goes away for a long, long time. I see the cases where wealthy white businessmen committing acts of fraud get off without so much as a fine, or where a white man trading child pornography gets a quarter of the sentence of the black guy dealing drugs to make a living. I am haunted by the inequity. Haunted, horrified, heartbroken.

The topic inevitably turned to other types of discrimination. We talked about how sometimes, people are mean to other people because of who they fall in love with, or because of their religion, or because of disabilities. Gracie didn’t like to hear about the disability discrimination. She didn’t want to talk about her own differences. Like every kid with differences, she wants to be just like everyone else. She hates being singled out over and over again for her differences. The great irony is that the rest of us spend our lives trying to be unique—she will spend her life trying to fit in.

While we were discussing differences, Gracie became very sad and upset. She does not want to be different; she doesn’t want to be amazing. So we talked. We talked about how differences are important—how it’s really important that some people have brown skin, and some people have blonde hair, and some people have disabilities, and some people are good at sports, and others are good at music, and some people are good at making friends, and so on. We talked about how everyone has things they are good at and things they are not so good at—for example, we talked about how Mom is great at writing and editing but not so good at sports. Well, okay, terrible at sports. And we talked about how Jackson is awesome at math but not so good at reading. And how Gracie is great at talking to people and being a friend but has a hard time standing up and walking.

Gracie still wasn’t satisfied; she knows her differences are so very… different. So, we talked about one more thing. We talked about how boring things would be if we were all the same. We imagined walking down the street and saying “Hi, Gracie!” “Oh, there’s Gracie.” “Gracie’s driving that car.” “There’s Gracie, walking the dog.” and so on. The kids had fun imagining a world filled with only Gracie, and they got the point immediately.

Differences are important. They make us beautiful. They make us realize that there are many realities, many ways of living, and all are beautiful in their own way. It can be painful to be different, and some people are treated unfairly for their differences, but we are who we are because of who we are. How boring would it be if we all looked the same? If we all believed the same thing? If we all had the same abilities? True, there are terrible inequities, and I wish there weren’t. I wish we could just embrace each other’s differences as the things that make us most beautiful. Because the world would truly be boring if we were all the same. But together, we make a beautiful tapestry of unique qualities and abilities.

Our differences make us all amazing.

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