Baby Blues

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We are all very excited about our newest family member. Elliot’s due date is August 6, which means I’m now only a few days away from the third trimester. Mostly, this has been a joyous and exciting pregnancy. Mostly, the typical pregnancy symptoms have been manageable and not too problematic. Mostly, we are filled with excitement to meet this little guy.

It turns out, though, that we still have some residual trauma from Gracie’s pregnancy and birth.

With Gracie, we found out there were problems at the 22 week ultrasound. I very much remember being so excited that she was a girl – the lack of “outdoor plumbing” was obvious with her. I remember the tech going over all her other measurements, and I remember saying something like, “oh look, there are her kidneys – you can see them really clearly – how cool!” After the ultrasound, the tech asked us to wait in the lobby until we could see the midwife again. I still didn’t realize anything was wrong, even though I wondered why we needed the midwife. It wasn’t until we were in the room with her that we found out that you’re not supposed to be able to see a fetus’s kidneys that clearly. Gracie had echogenic kidneys, and we would have to follow up with a neonatologist to find out more about what that meant for her.

From that point on, nothing was easy. We saw the neonatologist every month after that. Gracie’s kidney issue resolved by the time I was 7 months pregnant, but then she turned and was breech. I remember the neonatologist lamenting, “What am I missing?! That is such a classic sign of developmental problems, and yet everything seems normal.” She was the first doctor stumped by Gracie, but certainly not the last. I like to say that Grace has been puzzling doctors since before she was born.

Grace was also very active in utero. She was transverse breech, which means sideways, and she would flip from one side to the other quite frequently. The day of her birth, we scheduled a version and a c-section. If the doctor could not succeed in turning her with the version, we would go ahead with the c-section. It turned out that the doctor did succeed in turning her, but the moment he moved his hands she turned right back. I distinctly remember him remarking that he’d never seen a full-term baby move so much. At one point, her knuckles were clearly outlined as she grazed her hand across my stomach.

After the c-section, Gracie was breathing very loudly. I knew that c-section babies were more likely to have lung problems, and pointed it out to the nurses. They quickly whisked her away to the NICU, where Chad followed, and I was left alone with the medical folks while they stitched me up and wheeled me to recovery. That was the longest couple of hours I’ve ever felt in my life – I remember trying to will my toes to wiggle so I could go see my beautiful baby girl.

The rest of the story continues in much the same way. Grace was diagnosed with tracheomalacia at birth, which is a weakness of the trachea. She was breathing loudly because her trachea wasn’t strong enough to support a full breath. (I often wonder if she would have survived a vaginal birth – it seems that maybe her trachea would have been completely crushed under the pressure of the birth canal). She eventually outgrew the tracheomalacia, but then she started getting pneumonia, which she had five times in a year. She also didn’t meet her gross or fine motor milestones until she started physical therapy at 7 months of age. Every time one thing resolved, another cropped up, and that pretty much still continues to the present day.

All of that trauma from Grace’s pregnancy and infancy seems so distant, and yet so fresh still in our minds. Even though everything has gone perfectly with Elliot’s pregnancy and all signs show that he’s totally healthy, I can’t help but worry. It was hard to be excited about the mid-pregnancy ultrasound until the tech assured me that everything was completely normal – even his kidneys. I find that the only thing that reassures me is hearing his heartbeat once a month at our regular midwife appointments. For those few moments, I can breathe easy – I know he’s okay. But the in-between is painful; I can’t shake the worry that maybe they missed something, maybe there is something wrong, maybe maybe maybe.

It turns out that Chad is worried, too. I made a comment about Elliot being active the other day, and Chad shot back, “like Grace?” I totally understood. It’s hard to enjoy the little things when they turned out to be big things last time around.

The kids have their worries, too. (Grace is less worried than the rest of us. Of course, she always is – that kid is the queen of adaptability.) Jackson is worried that the baby will take me away from him even more than Grace does. He is worried that everyone will completely forget about him once someone newer and cuter comes along. Grace’s concern is similar – she seems to be worried that I won’t have time for her once there’s a new baby in the picture. I have tried to assure both of them that they’ll still be my special buddies, but neither is convinced.

We all know that adding a child to the family will change everything. Our whole dynamic will change. I am trying to maintain perspective that it will only increase the amount of love we all share. After all, everything that we’ve been through with Grace has strengthened our love for each other. Yes, it’s been traumatic. Yes, it’s been hard. But our lives are all richer because of her.

I’m sure that will happen with Elliot, too. I can’t wait to meet this cute little guy. I know we’re all going to fall head over heals in love with him once we meet him in three months or so. And until then, we will continue to work through our trauma so that we’re ready to give this little person all our love.

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Gracie’s Bill

It seems that the time between my posts gets longer and longer. There is a good reason for that. In addition to being a pregnant mom and working two jobs, I have a few side projects going on. One of them is a piece of legislation affectionately known as Gracie’s Bill.

A few years ago, we lost Gracie’s best doctor when she left our hospital and went to another hospital in the area. I received a form letter from our hospital the day she left to inform us that she was no longer with the hospital. A few weeks later, that doctor, Dr. D., called me on my cell phone to let me know that she was bound by a non-compete agreement and was unable to see any pediatric patients—including Gracie—for two years. She wasn’t even supposed to call me, but she cared about us as much as we cared for her, and she felt like we deserved to know what happened.

Because I work in the legal profession, my first thought was, “But wait! Non-competes are disfavored in Colorado—how can she be bound by one?” I looked up the relevant statute (Colo. Rev. Stat. § 8-2-113, for any other legal nerds out there) and found out that actually, physicians are specifically allowed to be bound by non-competes in Colorado—there is an explicit exception for physicians. I was shocked and dismayed.

Shock eventually turned to action, and I started questioning how to change the law. I reached out to the Colorado Medical Society and spoke to their lobbyist. She informed me that although CMS was unable to work on this legislation due to other, bigger issues, they get many calls complaining about physician non-compete agreements, and I should keep working on the issue.

I did.

I researched my local senator and representative. Although neither was someone I would have voted for, I was their constituent, and I decided eventually to reach out to the woman, my senator, thinking she may be more sympathetic as a mother. We met in the summer (after the May end of the legislative session), and she agreed to advance the legislation the following year—IF she was reelected.

That senator had a contested election race versus someone I personally know from a different point in my life who is aligned with me politically. Despite the promise of a personal favor, I had to vote for and support the candidate opposing her—the person I knew from years and years ago. Thankfully, the candidate of my choice won the election! She is a good person who is smart and compassionate, and I am very glad for her that she was elected.

After the election, I waited a while to contact her about the physician non-compete statute. She was very busy, but she remembered me from way back when and agreed to meet. Both of us are busy moms, and it took a while for us to get together. But when we finally met up, she immediately agreed to try to help us, and started of thinking of possible solutions that would be acceptable to all of the stakeholders. She knew it was too late in the 2017 legislative session to advance a bill, but promised to write one for 2018.

Senator Z. is true to her word. She introduced SB 18-082 in the beginning of the 2018 legislative session. Instead of eliminating the clause that allows physicians to be bound by non-compete agreements, she decided to carve out an exception for physicians who treat patients with rare diseases. That way, she would not be opposed by the major stakeholders—the hospitals and hospital associations.

She received support from several medical organizations, including the Colorado Medical Society, the major medical liability insurer, the Colorado rare disease community, and more. In fact, no one opposed her proposed legislation. She scheduled the Senate committee meeting and asked me to attend to testify on Gracie’s behalf.

Words are my forte. I am a writer, and although I’m not usually a speaker, I knew I could write something compelling. So, I wrote the following proposed testimony:

Thank you, Senators, for allowing me to be here today.

My name is Susan. This is my daughter, Grace. Grace is 7 years old. She loves Taylor Swift, mermaids, and puppies, and she has a rare disease called Posterior Column Ataxia with Retinitis Pigmentosa. This means that she has ataxia, or poor balance, she is legally blind, and she does not feel pain.

Not feeling pain has been the hardest part of her condition to manage. We figured out she couldn’t feel pain when she was about a year and a half old. She would get round wounds on the tips of her fingers, or deep cuts in the creases, and we could not figure out where they were coming from. Eventually, one Easter Sunday, she got a deep cut on the crease of her right index finger, and we knew she hadn’t been around anything sharp—except her own teeth. Her physical therapist questioned whether she could feel pain, and we thought back on all the times she banged her head without crying or kicked her heels into her high chair, and we realized she could not. That realization led to a long and arduous medical journey with many, many doctors in specialties I’d never heard of before, like Infectious Disease.

Gracie has had many, many infections in her short life. She has been hospitalized about 15 times, always for some type of infection. Some of these infections were very serious, even requiring amputations of some of her fingertips. We have relied on infectious disease doctors to manage her infections and find medications to prescribe that she is not resistant to. We have had mixed luck with infectious disease, but in 2013 we found Dr. [D] at Rocky Mountain Hospital for Children. Dr. [D] was a Godsend. She understood the complexity of Gracie’s care. She listened to my concerns and answered my questions honestly, never getting offended if I questioned a particular treatment. But in January 2015, she left Rocky Mountain and went to a different hospital. Unfortunately, the terms of her non-compete agreement prevented her from talking to us or having any influence on Gracie’s care.

We still have not found an infectious disease specialist who understands Gracie like Dr. [D] did. Grace has had some infections in the past few years that became very serious because she was not prescribed the right medication in time by her new infectious disease specialists. Her new infectious disease doctors try to treat her like a 7-year-old with a normal immune system, not comprehending the seriousness of her condition. If Dr. [D] could have continued to help with her care, I believe the doctors would have treated Gracie more quickly and she would not have spent as much time in the hospital.

Senators, please, I urge you to support this bill. It is very hard to find doctors who understand and who are good at treating patients with rare diseases. To lose them to a non-compete agreement is absolutely devastating. Please consider my daughter and all other children and adults with rare disease when voting on this bill.

Thank you.

I brought a picture of Gracie to woo the senators—because who can look at her adorable face and say no?

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Senator Z. warned me before the committee hearing that this was a “kill” committee—that likely the bill would not make it out of the committee. I tried not to get my hopes up, but I knew I had a secret weapon—Gracie. She is the most charismatic person I’ve ever  met, and maybe, just maybe, seeing her picture and hearing her story would be enough to convey to this Senate committee that she was worth voting for.

Miraculously, beautifully, unbelievably, it worked. Gracie’s Bill passed out of the kill committee with a 4-1 vote. It would likely pass through the Senate with no further opposition, since it made it through this committee.

Around this same time, our local CBS station contacted me to do a story on the bill. The reporter came to our house one snowy February day and interviewed me and Gracie. She did an amazing job with the video editing, and produced a feel-good story I was proud to share: http://denver.cbslocal.com/2018/02/19/gracies-bill-girl-cant-feel-pain/

(For some reason, I can’t embed the video. Click on the link above to watch it on the CBS page.)

The bill passed through the Senate with only one “no” vote—from the same senator who voted “no” in the kill committee. I met with the representative who would carry the bill in the House, and he agreed to hold the committee meeting on the morning of March 13. Again, I would testify in support of the bill. I amended my prepared testimony to be pertinent to the House committee members, and nervously readied myself for the hearing.

The House committee hearing was much more stressful than the Senate committee hearing. Perhaps it was because I had been told to expect the bill to die in the Senate committee, and I was hoping it would advance through the House. Perhaps it was because the logical part of my brain knew the delay between the Senate and the House had given the opposing political party members time to find excuses for opposition. Nevertheless, I was very nervous going into the hearing.

My testimony went well, and the committee members asked me very good questions about Gracie’s care and the impact this bill could have on her. I was even able to say at one point that although this bill would never get Dr. D. back for us, it would be important for so many others, and I am doing it for them, not me. (It’s true. I don’t think we’ll ever get Dr. D. back, but we may be able to prevent this situation from happening for other people.)

The bill passed out of the House committee on a straight party line vote. Many of the politicians who voted against it said they would support it if a proposed amendment was adopted. I was not sure if this was truth or just lip service, but graciously accepted their platitudes. The bill was up for 2nd Reading in the House last Friday, and, true to their word, those politicians who had opposed it in committee spoke in favor of the bill (as amended) on the House floor. Third Reading in the House happened quickly and uneventfully this Monday morning. And today, the bill was returned to the Senate for approval of the House’s amendment.

I am happy and relieved to say that the bill has now passed through all stages of consideration in the Senate and House. Its next stop is at the desk of our governor, who has no reason to veto and will certainly sign the bill. I do not know yet if I will be able to attend the bill signing with the governor, but it would be very cool if I could attend. I might even bring Gracie. After all, she is the amazing one who has been the impetus for this whole thing.

Now, time for another side project… maybe I’ll start trying to find childcare for the summer. That’s a whole different battle!

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Babies

Wow, it has been a while since I’ve posted! Sorry about that. For those of you who were left wondering after the last post, we actually had a remarkable thing happen at the hospital. Grace was very, very sick on my birthday – she had streaking all the way up past her elbow from the gangrene in her fingertip. However, she managed to avoid amputation of her gangrenous finger, because her regular orthopedist (who is also the hospital’s pediatric hand surgeon) was able to perform minor surgery at the bedside. Grace was laying on her bed, watching iPad, and Dr. B. cut off the “blister” of gangrene at the tip of her finger (no anesthetic or anything like that, of course) and then worked around the finger until she got all the dead tissue off. Grace did not realize it was happening until it was over – she never felt it at all. Dr. B. was also able to extract some of the serum for culturing prior to performing surgery, so they were able to get targeted antibiotics on board. It was a bumpy road but we made it through.

Something else remarkable happened when Grace was in the hospital, but it wasn’t apparent at first. Actually, it happened a couple days before Grace went to the hospital, but who’s counting.

After Grace was discharged, we visited my sister in New Mexico to celebrate Thanksgiving. I started feeling funny in New Mexico – I couldn’t finish my coffee, and noticed that alcohol was affecting me way more than usual. I had a sneaking suspicion why. The day after we got back, I took a test, and two blue lines appeared immediately – PREGNANT!

You may have guessed that I’ve wanted another baby for quite some time. The topic comes up on this blog from time to time. But I’ve been torn – although we love Gracie and wouldn’t change her for the world, having another kid with her genetic disorder would be really, REALLY hard. But it would be so nice to have another kid. I’ve always wanted a big family like the one I grew up in.

Chad was adamantly opposed to the thought of another kid for years. And who can blame him, really? This road has been a hard one, no doubt. But about two years ago, we had a mistake and thought I was pregnant. Even though it turned out to be nothing, it was enough to make Chad start thinking about the possibility of having another baby. We decided then to stop preventing pregnancy. We wouldn’t exactly “try” – we weren’t going to do a fertility calendar or anything like that, but if it happened we would accept it.

After several months of not preventing, it began to feel like we would never have another kid. I began to accept it. After all, I was getting older, and Grace and Jackson are perfect, and it might be okay to let that dream go. I began to let go of some of the baby stuff that had accumulated through the years. I began to let go of the dream.

But then, right before my 40th birthday, the miracle happened. A little life, a little light, began to grow and glow.

It’s truly miraculous, really, this little life growing inside me. I can still hardly believe it’s real. I wake up each night overnight nauseated with tremendously sore breasts and a full bladder, and I’m amazed anew at the new life in me.

We didn’t tell the kids right away. We decided early on to surprise the grandparents at Christmas, and got a picture frame with three openings to put pictures of Jackson, Grace, and the baby. We knew that if we told Grace, she would tell EVERYONE, so we had to keep it a secret from the kids, too. It was the hardest secret I’ve ever had to keep, but it was worth it to see the joy on Chad’s and my moms’ faces.

Grace and Jackson are very, very excited. The baby is due in August, and will likely be born right before Grace’s birthday. Grace keeps kissing my tummy. Jackson keeps reminding me that wherever I go, there are actually two people. They are both excited and happy. It’s the sweetest.

This little baby is such a blessing already. Our hearts are full of hope and wonder. We are all looking forward to meeting our new little person. We love her/him already. ❤

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Crappy Birthday

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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.

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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.

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Me, In The Middle Of Tuesday

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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.

 

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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.

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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.

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