Isolation

As schools across the country wind down for the summer, parents everywhere are lamenting their children’s loss of normalcy. Children and teachers alike are distraught that they were unable to say goodbye face-to-face, unable to hug their friends as they bid farewell for the summer, unable even to clean out their own desks or classrooms.

We get it, really we do.

Grace’s disease affects her ability to fight off infections. In particular, her B-lymphocyte cells are extremely low, meaning that she lacks the kind of cells that are specifically designed to fight bacterial infections. It’s obvious to anyone around her that she’s prone to infections; brief moments of contact with dirt or the outside world can turn into hospitalizations practically overnight.

Her T-lymphocyte cells, the ones that fight viruses, are not compromised; in fact, she seems to get fewer viruses than many kids. But when she gets them, it takes her longer to recover. That’s in line with her slow healing ability in general. Broken bones heal slowly, cuts heal slowly, and she heals from viruses slowly. Most people don’t know that she is not immunocompromised in regards to viruses; they see how quickly she gets infections and understandably assume that she is prone to any illness.

Because of Grace’s apparent immunodeficiency, people are taking extra precautions around us during this COVID-insanity. Chad and I definitely appreciate the concern of our friends, but Grace is less appreciative of the consideration. She is an extremely social person, and the lack of in-person interactions is driving her crazy. She needs people. She needs to talk and talk and talk, to play and have fun and interact. This isolation is so tough for her.

Last weekend, Jackson was able to spend some time with his BFF. It was absolutely rejuvenating for him—he was visibly more relaxed after interacting with a friend. Grace, however, has not had that opportunity. We don’t even know how to contact her BFF; it was difficult to connect even before the pandemic, and now it’s basically impossible. Grace has no one. She’s so lonely.

We go through many periods of time where we are isolated, where we stay away from schools and other people in order to keep Grace from getting sicker. Those are easier for her to stomach, partly because she’s usually quite sick and lacks the energy to do much playing. But this unprecedented time of quarantine and isolation is too much for her. She’s a kid with little impulse control, little regard for consequences. All she knows is she wants to play with a friend RIGHT NOW. And she has no one.

People all over the country—all over the world, really—are going through this at the same time as us. People all over the country are feeling the pinch of isolation. People all over the country are sad and lonely. People all over the country are suffering.

But in our house, there’s one person in particular who is feeling worse than the rest of us. She’s so lonely. To her, this prolonged isolation is just one more symptom of her differences. One more way in which she’s far from normal. One more way that she can’t be like others.

Eventually, the isolation will end. No one knows if it will be weeks, months, or years. No one knows what the world will look like once we all reintegrate into society. No one knows how many people will be lost; today, our country reached the grim milestone of 100,000 dead. But most people will recover. Most people will rejoin society, reunite with their friends, reestablish the connections that are so dearly missed.

I hope that someday, Grace will be able to, too. I hope that someday, her piercing loneliness will end.

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A Vision of the Future

When Gracie was younger, she would bristle at being called “blind.” She would adamantly reject the term, saying instead that she could see just fine. Although she was born with only about 10% of normal vision, it was all she’d ever known, so to her it was normal.

Now, though, she knows her vision is terrible. It has worsened significantly over the past couple of years, and even she can no longer deny that she’s mostly blind. It’s a source of angst for us all.

Lately, Grace has had a wandering eye. It’s disconcerting; we will be talking to her and her eyes will be pointing in different directions. She, of course, does not realize this is happening, but to us, it’s an unmistakable reminder of how bad her vision truly is. A few days ago, I suddenly realized that it’s always the same eye that wanders—her right eye. She was in the bath at the time, and I was talking to her and watching her eye drift over my shoulder. I covered her “good” eye and asked what she could see.

She has almost no vision in the “bad” eye.

I was close enough to be covering her “good” eye with my hand, but she said she couldn’t see my face properly—it was just a blur. She could tell where my hair was because it was dark, but that too was blurry.

We’ve always known that Grace’s eye disease is progressive and would likely cause her to become completely blind. But thinking about an uncertain future is completely different than witnessing it firsthand. It’s heart-wrenching. How can we stop this? What can we do? How can we make her okay?

We can’t. There’s nothing we can do. It’s the worst feeling.

What I wouldn’t give to have her see the world with full vision! What I wouldn’t do to let her see the vibrance of colors, the beautiful details of faces and flowers, the wonder of watching words on a page transform into whole new worlds.

But I can’t. There’s nothing I can do. I can’t help her; I can’t give her vision, no matter how much I want to.

Just like any parent, I want to be able to kiss the boo-boos and make the ouchies go away. But I can’t make this go away. Nothing I can do will prevent her vision from deteriorating and eventually disappearing entirely. It makes me so sad to think of all the things she won’t ever see—Elliot’s face when he’s grown up, for example, or her own babies’ sweet faces when she becomes a mom.

Parenting any child comes with a thousand heartaches. Parenting Gracie is no different. But the thousand heartaches are a lot different.

Just like any parent, I want my children to grow up to be responsible, caring, happy adults. I want them to dream big and work hard to make those dreams come true. I want them to have every opportunity, to do anything they want, to become good people in their own rights. Technically, I suppose all of that is still possible for Grace, regardless of her vision or lack thereof. It just might look a little different for her.

Eventually, this heartache will fade and we will adjust to the newest version of the new normal. But for now, it stings. Our poor sweet girl goes through so much.

I just wish I could make it better for her.

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Attrition

The fall of 2019 was a difficult time. In late August, Grace came home from school one day with a red and swollen thumb. Due to the redness and heat, we started her on antibiotics, but the thumb didn’t improve. After three days of antibiotics, she was able to get in with her regular ortho doctor. Turns out it was a displaced fracture, not an infection—antibiotics don’t do much for fractures. However, the x-ray showed something much more alarming.

Almost all of Grace’s distal phalanx bones had dissolved. Infection had won the war of attrition against her bones.

In a normal hand x-ray, each distal phalanx is a few millimeters long. It’s a skinny bone with an angled tip and a slightly wider base. In Grace’s hand x-rays, there was just a base with a nub. Nothing else. The entire top part of the bone had dissolved in almost all of her fingers. It was far more horrifying than the displaced fracture in the thumb.

Grace’s infectious disease doctor decided to treat the chronic osteomyelitis that had dissolved the bones with long-term antibiotics, and so Grace continued taking Keflex even after the thumb was determined to be a fracture.

Sometime in September or October, Grace developed a wound on her left ring finger that didn’t look right to me. It was too red—very infected-looking—and she would get blisters occasionally for no apparent reason. Every time we followed up with infectious disease and ortho, I would show them the finger, but because she was already on antibiotics, nothing further was done.

By early November, she developed a mystery fever and the finger looked redder and felt hotter, so we went to the ER. The finger was only red and hot at the tip when we got there, but a streak had developed on her hand by the time we left. She was not admitted that first day at the ER, but when we bounced back the following day, they sent her upstairs. She spent about 5 days inpatient that time. When she was discharged, she had a few days of mild improvement, or at least not worsening, but she was so pale. So, so pale.

About a week later, she developed a streak in a toe that we’d been battling since July, and her opposite knee became red and hot. Those streaks developed on a Saturday night that happened to be my birthday. Or maybe there was no coincidence; we had friends over that night, and perhaps it was too much excitement. She was still ghost-white, an outward sign of her internal battle. Anyway, it was late when we saw the streaking, and we decided to wait until our already scheduled Monday appointment instead of going back to the hospital.

Grace didn’t really improve throughout the month of November, and I kept her home from school all month. She looked so sick; she was deathly pale and had no energy. She cried and moaned about being kept home, but I was worried that if I sent her to school, she would worsen. Finally, on the first school day in December, I allowed her to go back to school—it seemed like she may never improve, and she had already missed all but one day in November. The next day, she had a streak in the opposite toe—her fourth major infection at the same time. That was the last straw. We went back to the ER.

That time, she stayed in the hospital for an entire week. She came home with a new accessory, a long-term IV called a PICC line so that she could get IV antibiotics at home for the next several weeks. She got her PICC line out on Christmas Eve, just in time to see Santa parading down our street, which was great because we’d missed our scheduled Pictures with Santa event while she was in the hospital.

Grace still looks a little pale to me from time to time, but not the deathly white she was throughout November. She had a hard time recovering from the virus she had the entire month of March (it might have been COVID-19), and her bones have dissolved a little more since last fall. She is not entirely out of the woods and she may never be the same. There will be lasting consequences of that illness; not just physical but also psychological. (More on that later! That’s a post unto itself.)

I learned some lessons from the sickness of last fall. Probably the most important one, to me, is that we must live life while we can. We are not guaranteed anything but this moment. Grace could have died last fall—she had a few very scary days where I wondered if she would make it through. No matter how tough it is to parent her, it is a blessing to do so. She’s amazing and sweet and beautiful and loving and kind. I am so grateful to have the chance to be with her, every single day.

Love you, Amazing Gracie. ❤

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Find us on Facebook!

After six years of blogging, I finally created an Amazing Gracie Facebook page. Better late than never, I suppose!

Please like and follow the Amazing Gracie page. Thanks!

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Pandemonium and Paradox

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As I write this, the world is reeling from the COVID-19 pandemic. We’re all in the throes of it, experiencing every emotion—often in the same day.

In Colorado, we have been on lockdown since mid-March. Since I am now a remote employee, day-to-day life did not change drastically for me (or Elliot, for that matter). For the big kids and Chad, though, their entire world has been turned upside down.

Chad has been immersing himself in planning the ultimate garden. The shortages in the grocery stores were eye-opening and he wants to be as self-sufficient as possible in the middle of a city. And his hard work is already apparent. The back of the back yard is a mulchy oasis of tiny greenery.

Jackson and Grace have been doing online school since March 17th or so. This means that their entire curricula is available online and they are expected to complete their work daily. In the beginning, Jackson was really good at online school. He quickly learned that he could get the whole day’s worth of work done in a very short time, leaving him with plenty of time for watching “The Simpsons” on Disney+ and playing Xbox.

Grace rebelled against online school from the start. She hated the idea that she was not able to physically go to school and therefore refused to do any work at home. It’s ironic, because almost every single day this year she’s come home from school moody, complaining about how she hates being around her classmates because they’re always so disruptive and the whole class gets in trouble for their shenanigans even though she’s generally a perfect angel at school. (Surprisingly, this is true. I have always heard from her teachers that she is very well-behaved at school. She must save up all her consternation for me.)

We’re only three weeks from the end of the school year now, and MY GOD, it will be a long claw to the finish line.

Grace’s teachers set up Zooms with her every day, so she at least does 30 minutes of school each day—face to face with a teacher. Jackson is supposed to check in throughout the day for his various classes, but he has not been doing this. Hopefully his grades will survive.

Having the whole family together is like a dream come true, and also a little bit of a sitcom (Think “Malcolm in the Middle,” not “The Brady Bunch”). I love having my kids around, but they are constantly hungry and the big two fight practically nonstop. The little guy sometimes gets lost in the noise and sometimes makes more noise than the older two combined. There’s nowhere for any of us to go to escape; most of the stores are closed and children are not supposed to go to any of the ones that are open. It’s the 24/7 Family Challenge!

The really interesting thing is that most other families are in exactly the same position as us. People all over the world are doing this crazy pandemic tango. In most or all families, people are taking turns having nervous breakdowns and sometimes complete throw-downs while others try to lift them up from the depths of their own black hole. How strange that a virus brought the entire world together in ways the internet and airplanes never could. And yet, we are all apart, separated by six feet of social distance space and wearing masks of varied origins.

No one knows how long this will last. Though we cannot stay shut up indoors indefinitely, some people are utterly terrified to rejoin society. Others are outraged at their loss of independence; we all grieve in different ways.

But while we’re all stuck together at home, I will try my best to cherish the togetherness. All the outbursts, the shouting, the kicking and hitting and biting, all the asking for snacks, all the tech support for Zooms and Google Meets, all of it. My family is my everything. For now, we are all together and safe. Isn’t that the most important thing?

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Vocation

It has been exactly two weeks since my last day of employment. Since then, I have done a lot of cleaning, spent time with all the kids, helped out at Chad’s office, and had some job interviews. I haven’t heard back whether I got the job I interviewed for yet, and I’m starting to think they selected a different applicant. Unfortunately, this was the only job possibility I had to continue in the same career that I’ve loved for so many years.

I was complacent at my old job. I enjoyed what I did and loved the people with whom I worked. It was interesting and rewarding, and I was well-liked. I received frequent praise for my work quality, creativity, flexibility, efficiency, etc. It was nice to be appreciated. Even the people who forced me to “resign” could not help but praise my work; they made a point of saying they weren’t forcing me out because of my work, but rather because they did not want me to work remotely. It’s been hard to lay that part of me to rest, to know that my career may essentially be over now.

But reality is cold, and I must face the hard fact that a new career path is on the horizon.

I could always work for Chad. I have resisted this for so long; it was never my choice to work for him. I have enjoyed helping him these past couple weeks, but don’t have a lot that I can do for him. I’m a writer and an editor, and he doesn’t really do any writing. It’s not a great fit.

And deep down, I really want to do something meaningful. I want to help people. I want to know that I’m not just working for the money—I’m working for the greater good. Naturally, as Gracie’s mom, I’m drawn to causes that support the disability community.

So I’ve been thinking lately of returning to school—for good. I am considering trying to become a special education teacher.

The very thought makes me nervous. I have no idea how to teach. But muddling through as a Girl Scout leader this year has enabled me to dip my toes in the education pool, so to speak, and it’s maybe less hard than I had anticipated. I’m still not sure I could handle a room of 30 children, but maybe I could take on a group of 10 kids with special needs, like Gracie.

Part of what’s keeping me from continuing in my previous career of being a legal editor is that there simply aren’t many jobs for legal editors, especially non-attorney legal editors. It would be nice to have skills that would transfer easily, so that if I ever lost a job again I would be able to find another one in the same field. And it would be really nice to be able to help people at the same time.

Maybe this is what the universe was trying to tell me. Maybe I had to leave my job so that I would be forced into a new career. Maybe this is exactly where I’m meant to be.

I’ve also considered a career in medicine, perhaps as a PA or maybe a nurse practitioner, but the hours turn me off. Plus, I’ve always thought it would be extremely difficult to see other chronically ill children and their families. I know too well what they’re going through, and would have a lot of trouble maintaining professional distance.

But education is exciting. Children learn and grow, if you’re good at teaching them. And you learn and grow simply by teaching. I could do good and have a job too. It doesn’t sound so bad.

Losing my job has been very, very hard. It’s been extremely stressful, and the uncertainty of the future is nerve-wracking. But maybe, just maybe, this door closed for a reason. Maybe I’m meant to go in a totally different path. And maybe that path is to become an educator.

The future is uncertain, but not unbearable.

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The Universe Provides

When Jackson and Gracie were born, I had no trouble finding child care. For Jackson, we interviewed a few in-home daycares and picked the one we felt best about. We ended up switching to a different one after a few months, but it was easy to find an in-home daycare for him. With Grace, we already had a daycare because of Jackson.

When Elliot was born, I spent the first four months of his life with him – every minute of every day. I started to work remotely almost immediately after he was born and gradually increased my hours; by December, I was working almost full-time but completely remotely. But then, in December, I was asked to return to the office.

I spent many distraught days trying to wrap my head around the idea of leaving my perfect baby. The thought of having someone else care for him so I could go to the office broke my heart. Many nights, I awoke overnight and sobbed at the thought of not being able to spend every minute of every day with my adorable, happy, sweet little guy. It felt as wrong as anything has ever felt before.

Logically, I knew that daycare wasn’t the worst thing that could happen to a child, and so I started searching for childcares for my baby. It turns out that there is a huge daycare shortage in Colorado – very few childcare centers have openings at all, and many are on months- or years-long waiting lists. Elliot would have aged out of the infant room by the time many of these facilities had openings.

We did eventually find one in-home daycare with an opening. It wasn’t a great fit; it was close to the house and the provider seemed nice, but it was expensive and she did not allow discounts for part-time care. Still, on the set day, I took my baby to her house and went to work, missing him the entire time.

He missed me, too. He cried the whole time he was in her care, and wouldn’t take a bottle. He was Persephone in the depths of Hades, refusing to eat until reunited with his Demeter. Still, we tried again later that week. And again, he hated it. My happy little guy cried and cried.

The next day was a Saturday, and he woke up with a fever. Grace had awakened overnight with the fever shakes, but his came on slowly. By the following Tuesday, he was struggling to breathe, and the doctor confirmed he had RSV and bronchiolitis. She informed me that the only reason he was allowed to go home on oxygen instead of being hospitalized was that he was so happy. Ironic, isn’t it?

During the week that he was so sick, the new daycare called to tell me that she’d filled Elliot’s spot with someone else. She just couldn’t take care of a baby that cried all day and wouldn’t eat.

At that point, we were out of options for childcare. I didn’t even know who to call, because it was a lucky fluke that we’d even found the one place. For the first time in weeks, I felt a glimmer of hope that I’d get to be with my baby for a little longer, that my desperate pleas to the universe had been answered. It was a morbid hope; my income had been our only steady income for months, and without it, we might have nothing on which to live.

I knew I needed to find childcare so I could return to the office, even though my job is capable of being done entirely remotely. (And even though I had been DOING my job remotely for months.) It was a rock and a hard place – I needed to find childcare, which wasn’t available, but I also needed to be with my baby with the deepest yearning of my soul.

Sometimes the universe provides in unexpected ways.

It wasn’t too long before my employer grew tired of accommodating my childcare situation. In March, I was required to come in on the day of a blizzard so that I could have a meeting with the executive director, the assistant executive director, and my direct supervisor (who had only been there for a few days at that point). At that meeting, I was told I had eight weeks to find childcare or I would not have a job – I would be considered to have resigned, since I could not fulfill their requirement that I be in the office at least three 8-hour days per week. I asked for an accommodation – I asked to be a full-time remote employee, which I’d been doing already for months – but was denied. That just wouldn’t work, they said, blaming it on the new person (who looked mortified to be thrown under the bus in her second week there – privately, she told me that she is very accommodating, but this was not her decision).

I spent many, many days distraught after this meeting, and many, many nights not sleeping. I really like what I do, and I’m good at it. I didn’t want to give up my career, but I also could not, could NOT, bear the thought of being separated from my sweet baby. I felt resentful at being forced to choose between my job and my child, and hated the fact that anyone would try to poison my relationship with my baby by forcing me to choose something else over him. But every time I looked at his sweet face, I knew there was no choice. All I can do is smile when I see him. He brings so much warmth and joy to our entire family.

And, there was still the issue that I had no options for childcare. I had been able to scramble together care for the one day a week I had been going into the office, but it wasn’t a regular thing and I would not be able to rely on it forever. I certainly wouldn’t be able to extend it into three full days per week. And even if somehow, miraculously, I could have found care for Elliot, school is almost out for the summer and I have no one to care for Grace and Jackson. (It’s extraordinarily hard to find care for Grace, since she is a cognitively-intact kid who needs help in the bathroom.)

The rock and hard place got even rockier and harder. The sleepless nights and stressed out days continued, and many, many tears were shed.

But again, sometimes the universe provides in unexpected ways. Sometimes things that seem so terrible turn out to be not that bad, after all.

Through all these years at my job, I’ve made many, many connections. Through some of these connections, I learned of remote job opportunities I didn’t know existed. I also learned that some of these connections would hire me the moment they had the chance to. Some of them were eager for me to be on the job market so that they could scoop me up. Others were willing to write letters of recommendation for me, many of which brought tears to my eyes. I had no idea I’d had such an impact on the people I worked with. It seemed that everyone I asked was eager to help me, and the praises they uttered were humbling and beautiful. They all recognized my worth, even when I struggled to see it.

It is the end of the eight-week ultimatum period, and soon I will no longer be employed. The future is uncertain and scary. But through this time, I’ve learned what is truly important to me. There is nothing in my life that means more to me than my children. There is no job that is worth sacrificing my children, no matter how great the paycheck or health insurance. I don’t know what we’ll do long-term. I don’t know how we’ll pay our bills, whether we’ll have health insurance, what’s going to happen. But I do know that I belong here, with my children. I will never look back and regret choosing them over a job. They are more precious than anything else.

Sometimes, the universe provides in unexpected ways. I am trying to be hopeful that everything will work out, and the universe will provide a way for me to be with my children while still having a job. Because sometimes, things that seem the darkest are really just a prelude to the brightest light.

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Happiness

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Elliot is 8 months old today! He is the best baby ever. I truly have never met a baby as calm and easy-going as he. His smile is always at the ready, and he is friendly to pretty much everyone he meets. He rarely fusses or cries – mostly only at the end of the day when he’s ready to go to bed, which, hey, we all get fussy when we’re ready for bed. In fact, he got his first tooth yesterday, and the only sign of teething he showed was a reluctance to eat.

Elliot has brought so much joy to our family. The kids adore him, and he adores them, too. Jackson is Elliot’s special big brother – they are more than friends; their connection is undeniable. Elliot loves Gracie, too – he lights up when he sees her, then reaches for her long blonde hair. He kicks and squeals when he sees Daddy, which does Chad’s heart good. And of course he loves me. The Milk Lady is pretty important to him. The feeling is obviously mutual.

For years, I wanted another baby. I didn’t want to just be done after Grace; I had always wanted four kids and it was hard for me to settle for two. But raising Grace is hard. The toddler years were darned near impossible with her, what with all the hospital stays and new diagnoses. Everything worked out perfectly, though – Elliot came along at exactly the right time (right after I started to accept that two is a good number of kids, haha).

I never anticipated that my career would end if I had another child. I did not foresee a legal education company engaging in such blatantly discriminatory behavior. But so be it. If I am being forced to choose between my job and my child, there is no choice at all. No one ever said on their deathbed, “Gee, I wish I had worked more!” And I know with all my heart that being with the children is the one thing that will make me happiest. Even though the future is uncertain and money will undoubtedly be tight, I cannot bargain my children away for anything. They are my life, my lights, my soul, my raison d’etre.

Seventeen months ago, I had no idea about the incredible changes our family was about to undergo. But here we are, and it’s the best thing ever to have Elliot in our lives. I love my little man so much. He has enriched our lives beyond belief. Thank goodness for him.

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Portrait of a Working Mother

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Just when it feels like things couldn’t possibly get worse, Grace gets gangrene.

I found it last night – the tell-tale purple finger. She has been “off” for a few days, but I couldn’t figure out what was wrong. A knee was hot but it didn’t really look like her typical knee infection. She’s been complaining when I take her temp in her ear, so maybe it could have been an ear infection, but without a fever there’s not much to do for it. But last night, when we got home from dance, she had a bloody bandage.

It happened fairly quickly, as her infections are wont to do. I saw the finger the previous night and it was relatively fine – no cause for concern, at any rate. But last night, it turned a corner, decidedly for the worse. After packing a quick bag or three and saying our goodbyes, Grace and Elliot and I left for a days-long hospital stay.

When we got here, all the pediatric rooms were full – there was not a bed for Gracie upstairs – so we were told we would have to spend the night in the ER. This isn’t much of a problem, except that there is nowhere for me and Elliot to sleep in an ER room. The nurses found a bigger room, though, and wheeled in a recliner so that I could have somewhere to rest.

But rest is elusive when your daughter is in the hospital, and you’re worried about exposing your infant son to ER germs, and – oh yeah – you’re about to lose your job and health insurance because you dared to have a baby.

So here I sit, in the ER recliner with Elliot on my breast, drinking weak hospital coffee and working. Or blogging at the minute, but I will be back to work soon enough.

If only the people who are so eager to push me out of my job knew what I do for them.

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When the World Ends

Oh, you know when the world ends
I’m going to take you aside and say
Let’s watch it fade away, fade away
And the world’s done
Ours just begun
It’s done
Ours just begun

I never thought that I would have to trade away everything I had for one more baby. I failed to foresee that having another child would cost me so much. I did not realize the price of my dreams.

But oh, how wonderful he is.

If I had known going in that having a baby would mean I would lose my job, we would become so buried in debt that we struggle to pay our bills, Chad’s business would implode, and incidental expenses would become impossible, I might not have had him.

And oh, how wonderful he is.

With each appliance that breaks down, each flat tire, each leaky faucet, each school bus fee we can’t pay, each time we have to say no to Taco Bell because we can’t afford it, we get nearer and nearer to the point of no return. The world as we know it is coming to an end. It is terrifying and so, so stressful.

And then I look into those big beautiful blue eyes, and feel his fuzzy blonde hair against my cheek, and listen to his adorable coos and shrieks and giggles, and feel the warmth from his amazing toothless smile, and I know I would never choose anything but him.

Oh, how wonderful he is.

The world is over, but it’s just begun.

 

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