Crappy Birthday

f5f09b0cf6c50383f9ea8d4abbebb19c

Grumpy Cat said it best.

When I turned 21, I had a massive bladder infection and couldn’t drink. I thought that was the worst birthday ever. And really, at 21, it probably seemed like the end of the world to have my plans suddenly get shattered by a raging infection.

HA! I didn’t know having plans shattered by raging infections back then.

Tomorrow is my 40th birthday. But tonight, we are back in the ER — Grace has gangrene.

I kept her home from school today after our shenanigans last night. I was working from home anyway, and it seemed prudent to let her rest and keep an eye on her for a day before sending her back to school. She was lethargic and not very hungry today, but otherwise fairly cheerful. I kept her fingertip bandaged, and kept an eye on the red streak on her arm. Everything seemed to be the same—not worse than the night before, but not better either. We went through our day with only a minor change in plans; Grace stayed home with Chad while I took Jackson to dance, rather than going with for her own dance class.

The kids ate dinner after dance, and when they were done with dinner I started to get Grace ready for an early bedtime. I happened to notice that the redness had expanded beyond the outlines I drew on her arm last night, so I decided to take off the fingertip bandage. As soon as I did, I knew we were heading back to the ER. Her fingertip was a blackish, purplish, gangrenous mess.

In the shock of it all, Chad and I discussed that Grace’s fingertip would need to be amputated. “AMPUTATED?? What does that mean?” Grace cried. She was horrified to learn that she would likely lose another piece of her finger. When I said she’d be in a cast again, she wailed. “Nooooo!!! Not another cast! I’ll have to write with my other hand again!” It was the first time she has had a negative reaction to the prospect of a hospital stay. It broke our hearts.

Jackson was the most heartbroken of all. He sobbed and sobbed, worried about his sister and already missing me even before I was gone. He let Grace watch his iPad—a sure sign that he was feeling worried about her, since he usually won’t let her anywhere near it—and gave me hug after hug after hug. I tasked him with taking care of the dogs, and tried to encourage him to be strong. It’s a lot to ask of a not-yet-10-year-old. I went through his schedule for tomorrow, for his sake and Chad’s, but when I mentioned that it was my 40th birthday, he sobbed even more. He couldn’t stand the thought of me spending my birthday in the hospital. Sweet child…

I held it together for everyone else. I tried to encourage Grace to remember all the things she likes about the hospital so that she wouldn’t feel sad. I tried to get Chad to start planning his day for tomorrow so he would get wrapped up in his schedule and maybe forget this bone-crushing sadness for a while. I tried to give Jackson as much love as I could; my sweet sensitive boy just needed to cry it out.

I knew that if I couldn’t hold it together, everyone would be despondent. I am the glue, the rock, the stronghold. When I am weak, everyone falls apart. Now that Grace and I are here at the hospital, I’m trying to hold it together so the nurses and doctors don’t see me crying. Later, once we’re up in a room, and after the initial flood of nurses and doctors, I’ll lock myself in the bathroom and let the sadness wash over me.

Hows-my-birthday-going-ruff-Sad-Meme

I have been feeling a little depressed lately, anyway. It seems like nothing is going right these days… my job that I used to love has become a nightmare, I’ve had a cold for weeks, I never get enough sleep and can’t stop gaining weight, Chad has been driving me up the wall, and it seems like everyone cares about what I do for them but no one cares to do anything for me. (Not “no one” — I have very awesome friends and one amazing sister — but sometimes it feels like “no one” even though I know folks are out there.) I’ve got big real-world stresses about my career and my future that I can’t really say on the internet, and it makes me wonder where this path is taking me. It seems like every waking moment is spent working, taking care of the kids, or doing housework. There are no minutes left for me to take care of myself… I’m already only getting a few hours of sleep a night as it is, and that’s the only corner I can cut.

So it’s almost not surprising that I’ll spend my 40th birthday in this hellhole. When everything is going badly, it makes more sense for more things to go wrong than for things to go right.

But I do wish it weren’t at Gracie’s expense. My poor sweet girl. She didn’t ask for this. She doesn’t mean to ruin every vacation or holiday. She certainly doesn’t want to lose her finger. And I’m sure she wouldn’t have wanted to make me spend my birthday in the hospital, either.

Crappy birthday to me.

Posted in Uncategorized | Tagged , , , | Leave a comment

Me, In The Middle Of Tuesday

its-been-a-long-week-me-in-the-middle-of-4270557

It’s been a long day.

Today started out like any other Tuesday. I got up, got the kids ready for school, got them on the bus, got myself ready, and went to work. It was a fairly productive work day, although I got several texts from Gracie’s helper at school.

The first text came in around 11:30. The helper found two new cuts on Gracie’s hand – she sent me pics so I could give advice on how to dress them. We texted back and forth a bit as we worked out the finer details of how to bandage the finger. I advised her to put a bulky bandage on the finger to give it an extra layer of protection. She didn’t really know what I meant; she has never seen how I externally protect wounds in order to help them heal. She said she put an extra bandage over the top, and I let it go.

The helper texted me again later, saying Grace was complaining of aches.

Red flag!

Even though she does not feel pain correctly, Grace gets body aches when she’s feverish. She will complain that her neck hurts, her legs hurt, her arm hurts, even her hair hurts. I asked the helper if Grace was moaning or if she felt warm – other signs of fever. She said Grace felt a little warm, but her temperature was roughly normal at 98 degrees. By that time, it was time for me to leave work to pick up the kids from school.

I got to the school just as the bell rang, but neither kid was waiting for me. I waited outside for a bit, as is our custom, and eventually slipped inside when another kid left the building. Finally, I saw Jackson coming down the hallway. He ran upstairs again to retrieve his lost lunch box, and I poked my head into Gracie’s classroom. Her jacket, walker, and backpack were right there on her desk, but she was nowhere to be found. I chatted with the classroom teacher while gathering her things, and soon Jackson came back with the lunch box. Not long after, Gracie and her helper came into the room – they had been in the restroom.

The moment I saw Grace, I saw a red streak down her hand. Sure enough, that finger was infected. Our plans of swimming lessons and homework flew out the window – we would have to go to the ER instead.

We got home from school and I hastily packed a bag. Until September, Grace had always been admitted for streaking infections. She wasn’t admitted in September, though; I had some hope that they would follow the same protocol and we would be allowed to come home tonight. But I couldn’t take the chance – it is better to pack a bag and not need it than to go unprepared.

The ER was unusually busy tonight. Normally, we do not wait long at all in the lobby; tonight, it was about 15 minutes before a nurse came out. Often, the doctor is waiting at the door for us when we get there; tonight, we were there close to an hour before we saw her. They usually start an IV immediately as a matter of course with Grace, but tonight it took about two hours before the nurse was able to get it in. We do not mind waiting; hospital time is different than regular time, and waiting is part of the gig. As we waited, though, I watched the red streak on her hand get darker, wider, and longer – the infection was progressing before my eyes.

As with the September ER visit, the doctor declined to admit Grace. She did blood work and x-rays, and gave one dose of IV antibiotics before sending us home. I guess it’s a sign that they trust me? They know I will not stay away if Grace worsens. And supposedly the antibiotic they gave her has equal absorption per IV and per oral, so there is no advantage to using the IV. (Anecdotally, it certainly seems like IV meds do a much better job, but formal studies conclude otherwise.)

The ER nurse was wonderful. We have seen him before. In fact, he was the nurse when we had our September ER visit, too. He remembered us and chatted with me about his teenage children and my little ones. When the doctor discharged us, he made sure to ask whether I felt okay about it. (Honestly, I don’t know if I do… the infection is growing rapidly, but I don’t want to stay at the hospital. It’s hard to know what’s right, so I’ll just trust the doctors this time.)

We left the ER after 7. It was dark; Grace remarked that “it turned to night!” She was hungry, so I treated her to her favorite – cheesy fiesta potatoes from Taco Bell. We stopped at our local Walgreens on the way to drop off her prescription; the tech said it would not be ready until 9:15 or so.

It was after 8 when we got home. Jackson was already showered and in pajamas, watching his iPad on my bed. Grace ate some of her food, but did not want her usual amount. She laid down in her bed and started shivering and moaning – fever symptoms. I gave her some Tylenol, remembering the ER doctor’s flippant attitude toward fevers (she said she didn’t mind fevers, since we already know Grace has an infection). The kids and I settled in for our bedtime routine of prayers and songs, and I lay with them for a bit, snuggling and trying to calm my thoughts.

Finally, I got up, remembering the pharmacy errand. When I got to the drive through window at 10:13, the blinds were closed – that has never happened before. A sign in the window advertised pharmacy hours of 8 am to 10 pm. I went in the store, hoping the pharmacy would be open on the inside. It wasn’t. The person at the register said the pharmacy stopped being a 24-hour pharmacy just a few months ago.

The stress of the day overwhelmed me on the way home. How would I get Grace her overnight dose of medicine if the pharmacy was closed? Would I have to take her back to the ER? Could I substitute a different, lesser antibiotic for the overnight? How could they do this? Why didn’t the pharmacy tech tell me they were closing at 10? I would have gotten there sooner if I’d known they would close. It was all too much; sometimes it seems like we can never catch a break.

The story has a somewhat happy ending. I called a different Walgreens across town that has a 24-hour pharmacy, and they can fill the prescription. I won’t get home until after midnight, but I can give Grace her medicine any time after 12:15, so by the time I get home she’ll be ready for her next dose. It will be a late night, but it’s not as bad as having to go to the ER again just for a medicine refill.

Some days just suck. Today was one of those days. Here’s hoping tomorrow will be better.

 

Posted in Uncategorized | Tagged , , , | Leave a comment

The Year of the Boy

Jackson has had difficulties with reading, writing, and language since he first started pre-K at age 4. His pre-K teacher told us that it would take him much longer to complete the writing pages; her response was to give him more pages, which is mind-boggling when you think about it. By the time Jackson was in 2nd Grade at St. B., the school had all but given up on him. He was receiving only the bare minimum of extra help, and he was punished for receiving that help by having to make up any of the work done in class at home later that night. He would have 6-7 pages of homework each night.

One of the reasons we moved Jackson into public school was so that he could get help with reading. We knew he was showing signs of a learning disability, and we learned the hard way that the private school had no desire to help people with disabilities. (So much for organized religion helping the less fortunate!) We worried, though, that Jackson was too sensitive to survive the tough environment of public school, especially a rough school like our neighborhood school.

Last year, Jackson thrived. He had some trouble with bullies on the playground, but for the most part he had fun with his classmates. He made leaps and bounds with his academic achievement; turns out, a little one-on-one attention was all he really needed. He was reading at grade level by year end, and the teachers did not think he would need further intervention.

This year has certainly been different.

During my health scare last month, Jackson definitely picked up on the raised stress level in the household. Consequently, he began having more and more difficulties at school. Each day, he came home with a new story of how the kids at school were bullying him. I began to dread seeing the school’s phone number as an incoming call; each time, it was the Assistant Principal calling to tell me about an incident between Jackson and some of the other kids.

At this same time, the school held parent-teacher conferences, and I found out that Jackson was having significant trouble with reading, and also was still flipping letters and numbers regularly. His teacher was not aware that we had explored the possibility of dyslexia for Jackson, and also did not realize that Jackson had received reading help the previous year. The teacher and I also talked about the recent bullying incidents; he had not been aware of some of them (Jackson didn’t want to tattle) and had already addressed others.

In the past week or so, I have had three meetings at the kids’ school. All were about Jackson. He and I met with his classroom teacher and the art and gym teachers to discuss the recent bullying incidents and develop a plan to address them moving forward. Today, we repeated that meeting with the Assistant Principal and a school counselor, since they were unable to be present the last time. (It’s a good thing we repeated the meetings; the AP and counselor were better at helping Jackson articulate a plan for the future.) But the hardest meeting happened last Friday.

When we had Jackson tested for dyslexia, it seemed like the person doing the testing (who we had privately retained) had given a diagnosis of “mild” dyslexia to appease us. Jackson had done really well on the testing and did not struggle with some of the tasks that seemed like they would be especially difficult for a child with dyslexia. I was suspicious of her diagnosis for those reasons. I wondered if it could be something else, and started to put together the pieces of the puzzle. We know Jackson has reading difficulties, and we know he has trouble with some of the kids at school. He tends to slur some of his words; he does not pronounce middle consonants. We also know that Jackson is incredibly sensitive and emotional, much moreso than many kids his age. And, hardest of all to accept, he has “stimming” or repetitive behaviors that he exhibits at home. All of these things combined lead me to suspect that he could have Asperger’s Syndrome — he could be somewhere on the Autism spectrum.

I met with the school special education teacher last Friday to discuss these concerns. Many of the scarier behaviors he exhibits do not happen at school — he does not blow up at the other kids the way he does at Grace or me, and he never stims at school. He is able to make friends, although he does have problems with some of the kids, and he excels at math and science. The SPED teacher suggested that we could test him. She acted like she didn’t think the diagnosis would fit, but she also acknowledged some of my concerns. I was ambivalent about agreeing to testing. Even if he is on the spectrum, he is receiving the help he needs at school (they resumed reading help after the parent-teacher conference), so all it would do is put a diagnosis on paper.

I eventually agreed to allow the school to test Jackson for an autism spectrum disorder. It could not hurt him to have a diagnosis, and it might help us better understand how to help him. It might even help him to understand why he’s different.

So, this year is turning out to be Jackson’s year. For so many years, we had to deal with life-threatening crises with Grace, and the issues we were noticing with Jackson didn’t seem extreme. They are subtle. Even though Jackson skips consonants in many words (think saying “ruh-ing” instead of “running”), it’s easy to ignore, or to ascribe to being just his way of talking. Even though he gets mad at his sister to a degree that seems extreme, it’s easy to understand why he’d be resentful of her. Even though he stims, hey, don’t we all have little behaviors we do, like tapping our feet or clicking pens? It was easy to write off these symptoms before, but now is the time to address them. He deserves just as much attention and consideration as his sister, even if his issues are not life-threatening.

It’s Jackson’s turn. Finally.

Posted in Uncategorized | Tagged , , , | 3 Comments

Fear

I’ve never been one for horror movies. Although the premise of IT intrigues me, there is absolutely no way I’ll ever watch it. I don’t need to watch scary movies—my mind comes up with plenty of scary scenarios on its own.

This month, I learned with no uncertainty what my deepest, darkest fear is.

In August or early September, I read an article on Medium that resonated with me in all the wrong ways. It was about a 35-year-old man who went to the doctor for some bleeding in his stool and found out it was Stage IV colon cancer. Not to get too graphic here, but I recognized myself in his symptoms.

The article nagged at me for weeks, finding a home in the back of my mind, and I finally realized I would not find peace without at least talking to my doctor. My appointment was on October 4, a Wednesday. She thanked me profusely for coming in, and concern was apparent on her face. After her exam, she referred me for a colonoscopy, mentioning that she would try to expedite it by bypassing the initial consultation. She told me that there could be other causes for bleeding, but if it was cancer it would likely be advanced.

I came home that day and collapsed in Chad’s arms. My worst nightmare was coming true. Dangerous, dark thoughts of sickness and death filled my mind. Terrible thoughts. Heartbreaking thoughts. I cried often, any time I was reminded of my own mortality.

When the referral went through, I scheduled the colonoscopy. I could not take the first available appointment (on the 24th) due to work obligations, so I scheduled it for Monday, October 30. It was, at that time, three and a half weeks away.

The wait was agonizing.

The kids and I have been reading an excellent book at bedtime called The Wild Robot. I highly recommend the story; it is fun and enlightening, but it also addresses very deep topics such as global warming and mortality. Although it was an excellent story, it was painful to read during my time of uncertainty. There were pages I could barely read through the tears. The kids thought I was crazy.

The kids also picked up on my stress. Jackson, especially, was very worried. Although we did not tell the kids what was going on (we thought it would be better to wait until we had answers), he heard snippets of conversations and became concerned. He is getting older—old enough to understand more abstract concepts like life and death.

Finally, last Friday, I decided to call the gastroenterologist’s office to see if they still had that opening on the 24th. The scheduling coordinator said their first available appointment was at 7:30 a.m. on October 17. She was skeptical why anyone would want that appointment—”you’ll have to be there at 6:30 a.m.” “you will have to drink the second bottle of prep at 2:30 in the morning”—but I didn’t care. At that point, anything to get some answers was fine with me.

I had the colonoscopy this past Tuesday, October 17. The prep was as bad as everyone warned me about, and I didn’t get much sleep Monday night. In fact, when they woke me up from the anesthesia, my first words were something like “Did I sleep through my alarm?!” (Silly, I know.)

The doctor came in to discuss the results with me shortly after I woke up. The bleeding was being caused by internal hemorrhoids, and she removed one single 3mm polyp. She would send the polyp for biopsy and call with results in a few days (she called yesterday; the polyp was the pre-cancerous type so she will do a repeat colonoscopy in five years). But, the most important news was that there was NO CANCER!!!

This experience illuminated my greatest fear—leaving my children. During our bedtime routine, when snuggling with a kid under each arm, the darkest thoughts would come to me. I want to be there for my kids. I want to snuggle with them as long as they’ll let me, and I want to be there when they won’t let me anymore. I want to help them through crises. I want to watch them mature. I want to be the best mom I can be as long as I can—and at least long enough for them to grow up and have an adult’s perspective on things outside our control.

The hardest lesson I learned from this is that we can’t control our own mortality. We cannot bargain our way out of death, and when it comes we will have no choice but to follow. Life is beautiful and amazing and full of wonder, but we cannot choose when it ends. It hurts to think that I could leave my children without any warning, that they could be forced to grow up without their mother.

Thankfully, for now, we do not have to face that dark truth. For now, we can live our happy life together and appreciate each other’s company. We can snuggle, and cry, and read stories, and do all the other great things families do.

We can breathe a sigh of relief.

Posted in Uncategorized | Tagged , , , , | 1 Comment

Consequences

For every action, there is an equal and opposite reaction. -Sir Isaac Newton, Newton’s Third Law of Physics

Today, class, we’re going to talk about physics. Okay, no, not really – we’re going to talk about microbiology as it pertains to one unique person’s physiology. Specifically, Gracie.

In a perfect world, no members of Gracie’s carefully selected care team would ever require replacement. Once selected, these people would devote the rest of their lives to helping Grace thrive.

This is not a perfect world.

We have lost doctors, therapists, and helpers through the years. Some of those losses are more painful than others – sometimes, it is a relief to stop seeing a provider who can’t believe it’s possible for Grace not to feel pain or won’t offer us any further help. Other times, it’s very sad to lose people we have come to rely on.

One of those people was Grace’s beloved school helper, Miss K. Miss K. was Gracie’s 1:1 at school for two years in a row, and she also nannied for us during the summer between those two years. Miss K. is a part of our family – I think of her as the little sister I’ve never had, and Grace absolutely adores her. We all adore her. Miss K. was working as Gracie’s 1:1 while she completed a master’s degree in special education with focus on becoming a teacher of the visually impaired. After two years of working full-time as Grace’s helper while studying, Miss K. needed to obtain a job in her field, and none were available in the Denver area. We were all devastated when she moved to the west coast, but it was the best move for her, and we are happy to support her in everything she does. We are happy for her – but sad for us. Saying good-bye to Miss K. was like losing a family member. She will always be a part of our family, though, and we will always love her as such.

It became painfully clear at the beginning of this school year just how much we relied on Miss K. We are now training a new helper, and while I think the new helper is a good person who has Grace’s best interest in mind, she is not Miss K. She doesn’t know Grace like Miss K. does, and she doesn’t understand how seemingly insignificant things can explode into full-blown, hospital-stay-requiring infections practically overnight.

Part of it is my fault. I was complacent with Miss K., and hadn’t needed to train her to do anything for quite some time. Now that she’s gone, I barely know where to begin to explain things to the new helper. I’m not sure she gets the gravity of the situation. I’m not sure if she knows that I’m not just being picky about wound care – little things can become life-or-death situations for Grace. And it shows – Grace has already had one ER visit this school year, and there is something not right with her right now. I’m waiting for it to blossom into something we can treat, but for now I know she is not well.

And that brings us to the second care provider we are training – the infectious disease specialist. After the incident with Dr. PC this June, we have switched care to his associate, Dr. S. She is nice, but she does not understand the complexity of caring for Grace. And unfortunately, the only way she’s really going to get it is for Grace to suffer some serious consequences. It is already starting; the finger infection that sent us to the ER on the day of Grace’s mermaid swimming party is flaring up again, and the hard lump of infection under Grace’s knee never went away after the hospital stay this past summer. Either one of these infections could explode overnight and cause her to have another extended hospital stay.

There is definitely something going on with Grace. She says she doesn’t feel well, she says her tummy hurts, she’s not sleeping well, and she’s had diarrhea. The finger that sent us to the ER is turning red again, and Grace even jumped when I palpated it a few nights ago – she said it “tickled,” which is a word people who don’t feel pain use to describe something that would hurt the rest of us.  I emailed Dr. S. with a picture to let her know about the redness and “tickling,” but I haven’t heard back. I can’t help but imagine that she does not think this is as serious as I think it is. After all, she is used to typical kids – not amazingly unique ones like Grace.

There will be consequences to Dr. S.’s lack of concern, and unfortunately they will be suffered by Grace. There will be consequences to having a new 1:1 at school – these, too, will be felt by Grace. She is the one who will face the consequences. I can only hope she will get through it relatively unscathed, and the new providers will learn a serious lesson about who this little child really is.

Posted in Uncategorized | Tagged , , | Leave a comment

Unfair

Humans have an internal compass for justice—at least, most of us do. We learn as young children to abhor injustice. As we mature, we learn the unpleasant truth that things sometimes are deeply unjust and beyond our control.

Gracie rarely minds her disabilities. Although she’s well aware that she doesn’t feel pain, she doesn’t really care that she’s different. She’s indifferent to her differences. Today, though, the harsh injustice of it all broke her heart. (For a little while, anyway. She’s okay now.)

This summer, we spent a lot of time in swimming pools. Jackson learned a rough doggie paddle, and Grace learned to blow bubbles—that is HUGE; we have never been successful in teaching her how to blow her nose or otherwise exhale. (Turns out it’s related to not feeling pain, because several other of the painless kids have learned very late how to blow their noses, too.) The kids’ progress in the pool this summer highlighted for me that they really have very few basic water survival skills. I decided to sign them both up for swimming lessons. Today was to be the first lesson.

We really have not allowed Gracie into pools very much. She basically always has wounds in various stages of healing all over her body, and because of her weak immune system, I worry (A LOT) about the germs in swimming pools. Even Jackson has gotten infections from swimming in public pools; I shudder to think about Grace in there. So, of course, Gracie LOVES the water. Murphy’s Law, or something. Recently, she has become obsessed with mermaids. She is dying for a Fin Fun Mermaid Tail—it’s the one thing she still hopes for in her heart, even knowing she’ll never get it.

Gracie just turned 7, and for her birthday she wanted a mermaid swimming party. She wanted one last year, too, but was not allowed to have one because of the cast on her arm. This year, I had no excuse. I reserved a room at our local indoor swimming facility and invited all her friends. The party was last Sunday at 10 a.m. We were picking up a friend, and planned to leave our house at 9 in order to get there early and hold some tables. At 8:30, we were getting ready, and I noticed redness and streaking in her right hand from an infected wound. Fuck. Streaking = hospital stay.

For a few minutes, I stood in our kitchen, debating whether to cancel the party and take her to the ER or do the party first, then the ER. Eventually, reason kicked in, and I took Gracie’s temperature. It was normal – we’d do the party first.

The injustice of it all really struck me on that Sunday morning. Why can’t she just have a freaking birthday party, for crying out loud? Why can we never make plans? Why does her disease have to ruin everything? It’s not fair, it’s SO not fair.

Gracie was worried for a moment that I wouldn’t let her go to her party, but once I said she could go she was elated again. She was so excited to see all her friends and have fun in the pool. I wrapped up her wounds and taped a plastic glove on her hand to hold the bandage in place and try to keep the pool water off the wound.

Gracie had a blast at the pool. She pretended to be a mermaid in the kiddie pool, which is actually a huge water playground with a beach entrance and a concrete bottom. She slid across the bottom, pretending she was wearing her beloved Fin Fun tail and having a great time. Unfortunately, sliding across concrete isn’t a great idea even for people who feel pain, and it’s a recipe for disaster for kids who don’t feel pain. She tore huge lesions into her feet, ankles, knees, and knuckles.

After her party, Grace and I dutifully trudged to the hospital. Her finger was swollen, red, and streaking. However, she did not have a fever. After consulting with the infectious disease specialist, the ER doctor decided not to admit Grace and sent us home with a prescription for oral antibiotics. Whew! That was a bit of grace, so to speak.

The antibiotics kicked the finger infection fairly quickly. It’s a good thing she had them for her feet, though; the wounds were so deep and so large that they would have been certain to become infected if she were not already on antibiotics. It’s been almost the full ten days already, and her left foot is still raw. So raw, in fact, that I’m starting to panic about her stopping the antibiotics. I’ve been calling and emailing doctors to see if they’ll extend the prescription. We are going to see infectious disease tomorrow, and I can only hope she’ll re-prescribe the meds. Most doctors won’t do that; we’ll see how it goes.

Anyway, back to swimming lessons. Tonight was to be Grace’s first-ever swimming lesson, but the wounds on her feet are too severe—I can’t allow her in the pool, at least not until I talk to the doctor about it. It’s terrible. WHY does her disease have to ruin everything?! Even worse, though, was that Jackson was able to do the lesson. She had to sit there at the side of the pool while he got to swim. It was awful, heart-wrenching, TERRIBLE. She basically threw a 45-minute tantrum in front of all the other moms and kids; I couldn’t blame her, but it was terrible.

Normally, her disease doesn’t bother her much, but tonight, it was awful. She was crying, “WHY does it matter if I can’t feel pain – I can still go in the pool!” I told her that not feeling pain wasn’t really the issue, it was the possibility of infection. But for a determined little girl, those words were empty. All she wanted was to hear me say it was okay, she could go in the water. I couldn’t. I couldn’t let her, couldn’t risk her health just for one day of fun.

The next swimming lesson is on Thursday, and she’ll have to sit that one out, too, unless her wounds miraculously heal over in the next two days. (Unlikely!) Chad is on deck for this one; he will have to deal with the repercussions. He will have to soothe her, even when she behaves terribly, will have to help her work through the injustice of it all.

It is unjust. It’s not at all fair. And there’s no way to make it right.

Posted in Uncategorized | Tagged , , , | 1 Comment

To Care or Not To Care

Hot Chocolate Banner

Gracie and Jackson and I did a couple of 5Ks last spring. Although Gracie wanted to participate, she is not physically capable of walking that far, so we would take her stroller and she would ride in the stroller when she got tired (or when I decided she was too wobbly to walk on her own). We all had fun.

There is another race coming up in October that I’ve been hearing about for a few years, the Hot Chocolate 5K/15K. It sounds like a fun race, and all the participants get cocoa at the end. I went to their website today to register the family, but saw many notices that strollers are not allowed. Since we cannot do the race if Gracie isn’t in her stroller, I emailed the race organizers about whether there is an exception for people with disabilities. This was their response:

Typically we schedule an early start for our wheel chair athletes or participants in a stroller that are being pushed the entire time. I will have to check with our operations team.

Two things struck me: athletes with disabilities are not integrated into the general crowd, and they must stay in their wheelchairs the entire time. This bothered me; not everyone in a wheelchair is incapable of walking, and why aren’t they just integrated with the rest of the runners? I emailed back to express my concerns.

Not too long after that, I received a second email:

I’m sorry… I think there was a misunderstanding. We welcome and are joyed to have athletes of all abilities in our races. We have lots of organizations and athletes with disabilities and visual impairments that participate in our races nationwide. I was just trying to figure out if an early start would be the best fit for your family or if you would prefer to start in back.

Please register and join us for a memorable experience! We will figure out the logistics.

Sounds good, right? I probably should have let it go at this, but I was concerned that if I registered and showed up on race day with a stroller they would turn us away. This was my response:

I am concerned about the race policy of no strollers. I don’t want to register, get to the starting gate with my daughter in her stroller, and be told that we can’t participate because she is in a stroller. I am also concerned about this – “Typically we schedule an early start for our wheel chair athletes or participants in a stroller that are being pushed the entire time.” That language makes it sound like disabled athletes are discriminated against because they have to have a different start time and have to be in their wheelchairs the entire time. Not all disabilities are the same, and not all people in wheelchairs are there because they can’t walk at all.

How can we fix this? How can we ensure that she will be welcomed, even if she doesn’t “look” disabled? How can we make it work so that I am sure we will not be turned away at the gate?

She didn’t like my email.

It was a while before she responded again, and the next response was defensive.

We simply cannot and do not allow strollers for any of our Hot Chocolate races which we have in 18 cities. This really has not been an issue for us.* The general public knows and is understanding that this is our standard policy .This is purely because of the safety of all of our participants which is a contract worked out between our race director and city officials. There are areas on the course that can become a safety hazard if we were to allow strollers.** The terrain and elevations of the course are also a factor. If we were to allow strollers, come race day we would not able to control that number and that would put the safety of our participants in  jeopardy as this can create congestion on the course. We produce other races locally in which strollers are welcomed, sadly it just not feasible for our Hot Chocolate Race Series.

“Typically we schedule an early start for our wheel chair athletes or participants in a stroller that are being pushed the entire time.” That language makes it sound like disabled athletes are discriminated against because they have to have a different start time and have to be in their wheelchairs the entire time. Not all disabilities are the same, and not all people in wheelchairs are there because they can’t walk at all.

We absolutely do not discriminate against disabled athletes. This is standard protocol for athletes in wheel chairs or strollers. I have had nothing but positive feedback from all of the organization that I work with directly to arrange their logistics and early start times in various cities. All race directors and major race production companies operate this manner, I assure you. These organizations and athletes  actually welcome the early start and always have a fantastic time! I worked with a super awesome group called Ainsley’s  Angels in Tampa that had a blast and were set up to participate in this manner (see attachment).

The solution:
Register and I can arrange for you all to be in the early start. This is the only way for you to be allowed on the course with a stroller.*** If she wants to run portions of the race, she can absolutely do that, you all will just need to move to the side when the rest of the race starts. These are standard instructions for our groups that start early.

Let me know what you decide and I would be happy to work with all and communicate all logistics to our team.

Day-um.

Obviously, she didn’t like that I pointed out how this seemed discriminatory. She did not want to hear how her response sounded to me. Instead of being accommodating, she immediately closed off and decided that we either are going to follow her rules or not run at all.

This scenario isn’t actually new. Every parent of a child with disabilities encounters some similar scenario at some point; most of us experience it with alarming frequency. I don’t know why I chose to fight this particular battle. Maybe it’s because Gracie has been sick with mystery fevers for several days and I’m very tired and worried. Maybe it’s because Chad chose today of all days to debate politics with me. Maybe it’s because I want the best for my child and I don’t want her to be discriminated against. Maybe it’s all of those things.

But now, I have a dilemma. Gracie would actually LOVE the Hot Chocolate race and even has heard some of her teachers talking about it before. She wants to do it. It’s not that much of a hardship to have an early start, even if it does separate the regular athletes from the disabled ones. But it’s the principle of the thing. How can I support the race when they responded with such coldness?

In general, it’s easier to avoid situations where people with disabilities aren’t welcome. Companies have a way of making sure you know they don’t want you. We learned that lesson for the first time at Anchor Center. When a company doesn’t want to accommodate, they will make it nearly impossible for you to stay.

But for the bigger cause, for the disability community at large, it might be worth sucking up my pride and trying to make it work. Maybe it’s better to try this with another gentle reminder that this is not inclusive, and show how easy it really is to accommodate.

What would you do, friends? Suck it up for the good of the cause, or avoid the race on principle? Please comment—guidance is appreciated. Thanks, all of you.

 

*Just because no one has ever complained before doesn’t mean it’s not an issue.

**I checked out the race course. It’s through the city streets of Downtown Denver. There are no hills, and the only obstacle would be construction (if there is any). There is no reason why people can’t have strollers, at least not in this city.

***This is the one that really got me. “My way or the highway, beeyatch!”

Posted in Uncategorized | Tagged , , | 3 Comments