Cha Cha Cha

I knew when I wrote that last post I was playing with fire — mentioning how Gracie had been hospitalized right around her birthday every year since the year she turned two. True, she doesn’t have a bone infection this year (that we know of), so that’s something, but the intractable diarrhea that has plagued Gracie for three weeks now has not gotten better.

Tonight, Gracie had blood in her diapers. Three diapers in a row were tinged with rusty red. I texted a gross picture to her doctor, who said to go to the ER if she had a fever or abdominal pain. Ha! Abdominal pain. That’s funny. I’m sure that if Gracie could feel pain her stomach would have been very sore this whole time. I had to call the doc out on it and she realized her mistake. She said to go to the ER with fever or if my mommy gut said something was wrong. That’s a problem, too, though, because my mommy gut knows something is wrong. I’m just not sure it’s wrong enough that we would get help at a hospital. (The doctor was really trying to warn me of the dangers of perforation in the intestinal tract. I don’t think Gracie is perforated; she would be deathly ill if she were and I’m sure she would be acting much sicker. Still, it’s worrisome and it’s possible since she’s had so much diarrhea.)

The kicker of it is that Gracie’s birthday party is tomorrow. Fifteen little kids, all their accompanying adults, and Princess Sofia will be at our house tomorrow afternoon. We have been preparing for it all week and Gracie is super excited. She just can’t go to the ER, at least not until after her party. It’s not right, it’s not fair, and it just can’t happen. It just can’t. This little girl deserves to have a great party with all her friends.

So, karma gods, I’m sorry for posting about all the times Gracie was in the hospital right around her birthday. I should know better than to tempt fate like that — it’s bad enough that I planned an event that can’t be cancelled. All I ask is that my little girl be able to enjoy her special day. And that she doesn’t perforate.

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Birthday Girl

Today is Gracie’s birthday — she is five years old. She had a great day. We brought cupcakes to school for her, she had steak for dinner (her favorite), and she got lots of cool presents. She was positively blissful. It was so sweet to see.

Gracie got gifts for her birthday, but her birthday itself was my gift. Each of her birthdays is a beautiful reminder that she made it another year — she is alive. Her beautiful light continues to shine. And she is perhaps as healthy this year as she has ever been on her birthday.

At this time last year, Gracie was brewing a huge infection in her left index finger that streaked halfway up her forearm, dissolved her bone, and required surgical debridement to cure. She was admitted on August 28 last year — three days after her fourth birthday. Two years ago, she had a bone infection in her right index finger and right thumb. She was in the hospital for a day or so in mid-August and was not well yet by her third birthday. Three years ago, she was in the hospital recovering from gangrene in her right index finger that caused her bone to literally fall out — that was her first major hospital stay and she was discharged on her second birthday. Four years ago, on her first birthday, she hadn’t yet learned to bite her fingers, and I think she may have been relatively healthy for that day. I have a vague memory of trying to convince her to eat cake while she kicked her heels as hard as she could into the back of her high chair — one of the first signs that she couldn’t feel pain. And by this time five years ago, on the day she was born, she had been through a version, a C-section, had received oxygen in the NICU, and was breathing very noisily with every inspiration due to tracheomalacia.

Gracie has faced many challenges in her short life. She has been through infections, antibiotics, surgeries, hospital stays, injuries, problems walking and doing other gross motor tasks, and vision loss. Even now she still is dealing with intractable diarrhea for no known cause. But none of it bothers her. She still has the sparkle in her eye, the twinkle in her smile, the charisma that never fails to amaze me. She is a beautiful gift, and I’m so grateful to have her. She’s amazing.

Happy Birthday, Amazing Gracie. <3

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Lemon Squeezy

Today was Gracie’s first day of kindergarten. My big girl walked into the school, easy peasy lemon squeezy, like she’d been going there for years. If she had jitters she didn’t show them. All her special teachers were there—the special ed teacher greeted us at the door, her amazing one-to-one was standing in the hallway waiting to walk us to class, and the OT and PT were in the classroom watching for Gracie. There were tons of other people there, too—students, siblings, parents, grandparents, etc.—but there was no way Gracie could have gotten lost in the crowd with all her helpers around. She will be well cared for at her new school.

Last Friday, the district nurse called me to finalize some details for Gracie’s health plan and mentioned that the teacher wanted me to give a little talk to the students about how Gracie is different but still the same. So, when the time came this morning, I got up in front of the class and had five minutes of fame in front of a bunch of 5-year-olds. It was easy peasy lemon squeezy.

First, I asked the kids how many of them had been to that school before. Only four raised their hands. That question was for Gracie—I wanted her to know that she wasn’t the only new kid there. Then, I asked the kids how many of them liked horses. Several hands went up, including the teacher’s. I asked how many of them liked Legos. Again, several hands shot up. I asked them how many of them liked the movie “Frozen.” Most of the kids raised their hands. I asked them how many had seen the movie “Frozen,” and all of them raised their hands. I began my somewhat prepared speech.

“So, you know how in the movie ‘Frozen’ Queen Elsa is a little different than everyone else? You know how she has special powers but it makes it so she’s a little different—she has to wear special gloves, she has to be careful what she touches, but she’s totally just like all the other people in Arendelle? Well, my girl Gracie is kind of like Queen Elsa. She has to use a special walker and sometimes she wears special gloves but she’s totally just like all of you.” Little hands shot up, and little mouths rushed to tell me about their favorite parts of the movie. I entertained a few of the comments and then reiterated my main point— “Gracie is just like the rest of you. She may look a little different sometimes but she’s just like you.” The kids didn’t even bat an eye—they did not appreciate the depth of the conversation I’d just had with them, but then again they also weren’t staring at Gracie or pointing or being mean.

Hopefully by growing up with her, these kids they will accept Gracie for who she is without much fuss. If mean kids come along, which they surely will at some point, all the other kids who’ve known Gracie all along will hopefully shut down the teasing fairly quickly. Hopefully it won’t be a big deal if she has a walker or gloves, or even if she poops her pants a lot.

Apparently that happened four times today. Gracie still has diarrhea for no apparent reason—it’s been about 10 days now with no sign of stopping—and her para changed four bad diapers today. I warned her ahead of time but I’m guessing she wasn’t prepared for what she dealt with today. I am worried about Gracie; she is at high risk for C. diff., a resistant bacterial infection of the intestine, and these symptoms are suspicious. We are trying to wait to take her in until Thursday on her doctor’s advice but it’s hard to watch her go through this. Plus we don’t want to scare away her new para or anyone else at her new school—we want to give her the best possible chance.

All in all, everything went great today (except the diarrhea). They are going to take great care of Gracie at her new school. Gracie is going to be her typical sweet self and make everyone fall in love with her. She made one new friend today and will surely make more as the days go on. She’ll make this look easy peasy lemon squeezy.

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We all remember those Calgon commercials, right? About the soothing power of a bubble bath? Calgon doesn’t exist anymore—it’s officially Cal-gone. Anyway.

Gracie has had diarrhea since Friday. She’s dirtying dozens of diapers a day and barely faring better overnight. There’s no sign of what’s causing her gastric distress and no sign that it will let up any time soon, although hopefully the good probiotics will help her recover more quickly. I forgot to tell her daycare lady about it this morning and waited all day for her to call me to pick up my poopy girl, but she didn’t. I had hoped this meant Grace was starting to dry up, but no such luck.

On my way home from work I called Chad, wondering if I should pick up dog food while I was out. He told me to go ahead because Gracie was asleep—never a good sign but ever since she was hospitalized in early July she’s fallen asleep on the way home nearly every time she’s gone to daycare. Then I remembered that Gracie’s doctor called in a prescription for her diaper rash (a hazard of pooping dozens of times a day—Gracie’s poor little butt is raw) and decided to pick that up too.

Gracie was still asleep when I got home, but she woke up when she heard my voice. Chad was asleep too but instead of waking up he stretched out on the big couch for a better nap. Jackson was watching “Ninjago” and playing with Legos. Almost immediately after she woke up, Gracie started fussing about being hungry. That is a good sign—she’s barely wanted to eat anything all weekend. So, I got the kids some dinner, but before it was ready Gracie pooped and I had to change her. Then she pooped again, and she told me “It’s going to spill on the bed when you change me.” Unfortunately she was right. Ugh. But okay, no big deal, I pulled the sheets off when the kids were eating dinner and threw them in the washer, putting clean sheets on her bed. Chad slept through it.

Gracie finished eating and went to her room. Pretty soon I heard “Mom! MOM!! Come change me! MOOMMMMM!!! I peed all over the floor.” She was standing in a puddle, holding herself up on her bed and trying not to step directly in the wetness. It was then that I made the mistake of believing that she had only peed. When I pulled off her diaper liquid poop splashed everywhere—on the floor, on the blanket on the floor, on some of Gracie’s toys, and on me. On me! EEW!!! I was still wearing the pretty dress I had worn to work and the bottom was soaked with poop, as were my legs and feet. Ew ew EEW!!!

I left Gracie propped against the bed so I could start the shower—some jobs are too big for wipes. I got the shower going and rinsed off my feet and legs before going back for Gracie. I took off her clothes, gingerly carried her into the tub, and started rinsing her, leaving the poopy mess in her room for later. When she was rinsed I left her for a minute so I could change my poopy dress. I got into some clean comfy jammies and went back to the bathroom to finish washing Gracie (might as well wash her whole body—she needed a bath anyway). To my dismay, she had bumped into the shower sprayer and a stream of water was pouring over the bathroom, which was flooded. (I swear I was only gone about 30 seconds! It’s amazing how much water sprayed in that short amount of time.) While rushing to change the spray’s direction my clean jammies got soaked. So much for those clothes! I threw some towels on the floor and switched the shower to a bath.

At that moment, I was completely frazzled, frustrated, and fatigued. I belonged in a commercial from the ’80s, holding a bottle of Calgon and pleading for it to take me away. Frustrated and overwhelmed, I did the only thing I could think of—I woke up Chad. (By that time he had been sleeping on the couch for almost two hours anyway.) Luckily, he got up and came to the rescue. He bathed Gracie while I attended to the mess in her room. He gave Jackson a shower while I washed more loads of laundry. He herded the kids into the bedroom while I cleaned the kitchen. He became my Calgon.

These aren’t the shiny happy family moments that go on Facebook. These are the raw, smelly, messy, crazy moments of our day-to-day lives. But you know, I wouldn’t trade it for anything. Maybe that’s why Calgon went out of business.

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Bhairav-Attributes-KaliLast Friday, the kids and I went to a spiritual celebration — Guru Purnima. Jackson played in the toy room for most of the ceremony, but Gracie wanted to be near me and sat by me almost the whole time. It was a beautiful ceremony and I felt blessed to be there. Throughout the whole ceremony, though, I kept imagining the dire consequences that could have happened from Grace’s most recent infection in her knee. Gracie could have lost her leg with that infection. And, truth be told, she is not out of the woods yet. I left her leg brace off yesterday while she was at home with me and by the end of the day her knee was red and hot. It’s better this morning but there is obviously still infection in there.

During the celebration, when I was worrying about the possible loss of her knee, I couldn’t help but remember that no matter how difficult the trial, we always get through it. We have weathered many storms already and will continue to face every one that comes our way. There is no other option — we must grit our teeth and keep walking.

A few days later, I came across the following blog post: “F*ck It. (& 4 Other Mantras for When Things Get Tough.” One part resonated with me — the author’s discussion of her inner reservoir of strength, reprinted here:

There are moments when I feel like things are just too damn hard. That I am stuck. That I have too little energy to pull myself up and out of the rut I’ve been holed up in. And then I remember: I am here. I am alive because deep inside of me, I have this reserved pool of strength that will always be available for me to drink from, no matter how parched and tired I get.

Here is my advice to those who suffer from depression and don’t know this already: inside of us is an ocean of health, trust me. The moment before things become too much to bear, our little toe, or the smallest part of ourselves, will find the waters of this shoreline.

Knowing that there is this innate strength inside myself has been immensely helpful for me during my darkest hours.

I can feel this inner reservoir of strength inside me. I have tapped into it many times — no matter how dark things get, all I need to do is put one foot in front of the other and keep going. Eventually the light will shine again. Eventually the sun will rise. The pendulum always swings.

Right now, we are not at a point where Gracie is facing the loss of her leg. Whatever traces of infection are left in her knee are not to the point that they require medication, and that’s good because she’s running out of antibiotics that she can use. She will continue to wear the leg brace for as long as it’s needed — not sure how long that will be but it’s looking like it will be a while. And hopefully, she’ll never get to the point where amputation is our only option. But if it ever is, we will get through it. We will walk through the fire and come out the other side stronger than ever. Like the phoenix, we will rise from the ashes and fly again.

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Pitter Patter

I read a post on Love That Max recently where the mom wrote she will never get tired of hearing her son talk, because it was something they didn’t know if he would ever do. Those hard-won milestones are never to be taken for granted. For Max, the hard-won milestone was talking. For Gracie, it’s walking.

Gracie didn’t make any of her gross motor milestones on time but she was really delayed with walking. We were not sure she would ever learn to walk, and certainly not unassisted. But she did. She first learned to walk unassisted during the year she was 3, thanks in large part to the help she received at her old school. The hallways were wide and clear, the surfaces were smooth and hard, and there were always helpers at arm’s length. These things, combined with regular use of her walker, helped her learn to walk. She had to learn by doing because she could not learn by feeling.

Gracie does not have that inherent balance the rest of us have. When she’s standing still, she wobbles. She can’t feel her feet at all, so it makes sense that it would be hard for her to trust that they’re on the ground. (Indeed, oftentimes they are not—she is the queen of rolling her ankles.) Plus, since she doesn’t have peripheral vision, she doesn’t have that visual cue when her feet are planted. Little babies just learning to stand have better balance than Gracie. The medical term for Gracie’s lack of balance is ataxia, which in the vernacular is loosely defined as walking as if you’re drunk. Due to her lack of balance, it’s actually easier for Gracie to walk than to stand still, and it’s not that easy for her to walk.

When I see little babies walking around, my heart aches a little. Gracie will never have that. Gracie will never be that stable and coordinated. She will never have the balance that the rest of us have inherently. But what Gracie has is so, so special. Gracie has hard-won skills that required determination and much, much more effort than they require from the rest of us. She will never pitter patter, but I will never get tired of hearing her feet stomp down the hallway. That STOMP STOMP STOMP is a beautiful sound.

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You are my sunshine
My only sunshine
You make me happy
When skies are grey
You’ll never know, Dear,
How much I love you.
Please don’t take my sunshine away.

When I was pregnant with Gracie, I used to sing that song to Jackson every night. It was a stressful pregnancy, filled with worry about the baby’s mysterious health conditions. My bright little blonde-haired boy was my sunshine, my reason for not collapsing with worry. He pushed the clouds aside for me during that dark time.

It is very, very stressful for Jackson when Gracie is in the hospital. His life is turned upside-down when I’m not here to cultivate peace. He worries about his sister, wonders what could happen to her, and he misses me so much. We were gone six days for the latest hospital stay, and he suffered. Even though the out-of-town family was here, which helped distract him, he did not forget the aching longing for his family to be complete. Now, after we’ve been home more than a week, he is still recovering from Gracie’s illness.

The first time Gracie had a long hospital stay, she was admitted on Jackson’s first-ever day of school. She should have been admitted that Saturday when I took her to the ER because her finger was dissolving, but they sent us home that day. Her finger continued to dissolve more over the weekend, and at her previously-scheduled appointment Monday, her regular wound care specialist admitted her. That Monday should have been Jackson’s special day. He went to school that morning for the first time in his entire life and deserved to have his mom there for him when he got home, waiting for him with a hug and a smile. He never got that—instead, his mom was in the hospital with his very sick little sister, where we stayed for several days. Because of that first long hospital stay, there is a place inside him that is permanently worried I won’t be there when he gets home.

Jackson has been doing a summer day camp this week, one that he was at several weeks last summer and one week already this summer. For the first time, he is not enjoying himself. He has been crying almost every day when we’ve gotten there to bring him up. He complains that the other kids won’t play with him, that no one wants to be his friend, that the counselors aren’t picking him for games, that he is lonely. Reading between the lines, though, I think he’s still reeling from Gracie’s week in the hospital. He is worried that we won’t be there when he gets home. He is afraid that something terrible might happen to his family. He thinks we might forget him in all the worry about Gracie.

I had a talk with him tonight to try to assure him that I would never, ever, EVER forget him. I told him that even if the worst possible thing happened, we would get through it. He told me that the worst thing he could think of happening to Gracie is she would have surgery. (Thank goodness his thoughts are not as dark as mine.) I told him that if she had surgery, she would get better, and reminded him that she has already had surgery and she got better. We talked about how in all these times he’s been at camp, no one has ever forgotten to pick him up. Then we talked about lighter subjects, silly things to help put a smile on his face. By the time he went to bed, he felt a little better.

He may never know how much I love him. He is my sweet, sensitive, caring, good boy. I just wish I could bring the sunshine back to him.

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