Magical McDonalds

I haven’t written anything in forever, not because I’ve forgotten about this, but because there really isn’t much to report. Our lives are the epitome of mundane, and for the most part that describes Eli’s current healthcare routine as well. With Eli’s particular diagnosis the first two years are probably the most dangerous, and we’ve finally passed that milestone. The things we worry about the most now are his calcium levels and getting sick in general. It doesn’t occur to most people, but even though Eli isn’t immunosuppressed, his immune system is not on par with his peers. He’s so much smaller...closer to the size of a one year old, and that means his lungs, nasal passages, etc. are smaller too, so he is more susceptible to illness than other kids his age. His calcium relates to his hypoparathyroidism. I don’t know the exact statistics, but hypoparathyroidism is quite rare on it’s own. It’s especially rare to be born with it, rather than to develop it as a transient illness later ...

 For some reason I’ve recently seen several different articles (not even shared by dwarfism community friends) about different sporting leagues, usually children’s leagues, being lobbied to r emove the word “midget” as a classification. Inevitably, the comments of these news articles turn into a total (excuse my language) shitshow, and I see many MANY people complaining about the world today being too politically correct, calling people who are offended “snowflakes,” saying it isn’t meant in a mean way so people shouldn’t care, etc. I know I have expressed multiple times that midget is NOT an acceptable word, but I wanted to go more into why that is, so people understand where those in the dwarfism community are coming from. To most of the dwarfism community, the word “midget” is comparable to using the r-word to describe someone who is intellectually disabled. It’s beyond not cool. It’s hurtful and offensive and it makes me cringe every time I hear it. As a preface, I do not hold ...

This topic is something I have struggled with since Eli was a few months old, but I haven’t done it justice in writing because I’ve had a difficult time finding the right words to express myself to my satisfaction. So once again please excuse my terrible stream-of-consciousness writing. I wish I could edit myself, but I am who I am! I actually think there are two facets to this topic that are somewhat intertwined. First, why has it been such a struggle for me to accept and rejoice in Eli’s diagnosis? And second, what does his diagnosis even MEAN in terms of ability and severity. I’ve seen the book “Far From the Tree” by Andrew Solomon recommended by a few people over the past couple years, but I kept putting off buying an entire book when only one chapter (the chapter on dwarfism) would be relevant to me. I was able to borrow a free e-book from Open Library, and now I regret that I didn’t buy the book sooner, and I’ll probably purchase my own copy soon, just to have. I want to sta...

I typically don't do "thankful" posts in November because I feel like they are generally super hokey, but I was struck the other day with how content I have been feeling lately and started thinking about why that is...which got me thinking about all the people and things in life I truly am thankful for. There are plenty of things that are more about me personally (my work, my future plans for work, personal fulfillment, etc.) but since I started this blog about Eli, I'm going to keep it to things that pertain to him. Also this is very stream of consciousness and it's very late and I should be packing and cooking and doing 100 other things instead of writing this. So forgive my lazy writing style, please. Here goes, I'm going to be super lame and talk about a bunch of things I'm thankful for. Eli: Ok so this is kind of obvious but it's true! I am so thankful Eli is the kid we ended up with. He definitely has moments when he's a little jerk (...

Right now, the political climate in our country is…tricky, to say the least. But I like to think most people agree political differences shouldn’t come between close friend and family relationships. I tend to believe that. I make it a point to never remove someone from my social media due to differing political opinions, because I never want to live in an echo chamber where everyone agrees with me. With one exception. Healthcare. Be warned, if you don’t want to read a rant right now, turn back.  For most lucky people, healthcare is a political talking point. Doctor visits are routine and (comparatively) affordable, and essentially an afterthought to daily life. That isn’t the case for us. Healthcare and insurance are all consuming facts of life. The fact that Eli was born after mandatory preexisting condition coverage came into play is no small miracle to me. Worrying about healthcare is an everyday experience for me. (I plan on talking more about the costs we face each month, bu...

It’s been a while, but there haven't been many blog-worthy happenings in our world. I could update with every milestone Eli meets or misses, every therapy he has, etc. but it’s really not that interesting, and this has become more about me and how I’m dealing with his diagnosis versus nonstop updates on his condition. Eli is actually doing great. He is behind on milestones, which we knew/expected, and he has different therapies (speech, physical, occupational) on a weekly basis, but when he’s out and about no one would ever know he was anything but a normal kid (unless they asked how old he is…I am still dreading the next time that happens). I think this makes some things easier and some harder. Of course, I feel lucky that he can ride in a normal car seat, be around other kids and their germs, wear clothes only a size or so smaller than average; and I’m so glad we don’t have to worry too much about spinal compression issues or sleep apnea and trying to make him sleep with a ...

I think, finally, more than 14 months after life changed drastically, we are settling into a routine. Our routine is different than other families, but it’s routine just the same. Instead of knowing every other mom at Eli’s daycare (I know, I’m the worst), we know all the phlebotomists at the children’s hospital. And instead of calling our pediatrician once in a blue moon to schedule a routine well-check, I have our pediatrician’s personal cell phone number and a host of other doctor’s offices on speed dial (endocrinology, ENT, genetics, neurology, orthopedics, and plastic surgery, just to name a few). As life with a child with different needs becomes routine, I am more able to step back and examine my own constantly changing feelings on our life. One thing I have stressed over and over is that I don’t CARE if Eli has dwarfism. He’s my child and I love him no matter what. He is funny, sweet, (sometimes) cuddly, and the strongest little boy I know. And I realize that accepting his dif...

I've realized if someone only knew me through what I wrote on this blog, I would appear to be a person in dire straights. I'm not, I promise. But I don't need an outlet to write about my exceedingly boring day-to-day life. For the most part, we live our lives just like everyone else. Will and I go to work, come home, take turns cooking and entertaining Eli, put him to bed, collapse on the couch and watch The Great British Baking Show while we talk about how we wish Mary Berry was our grandmother, go to bed, repeat. We send each other pictures of Eli when he's being especially cute, and talk about how we have the cutest baby in the world. We're THOSE people now. We're happy, most days. I get home from work and I lay on the floor beside him, making him laugh by pretending to tickle him. I delight in his delight. This is off topic, but I just felt the need to put it out there. Now, on topic. We have a diagnosis. This is what we've been waiting on for 13 month...

1. “God doesn’t give you anything you can’t handle.” Thanks, but no thanks. I’ve read quite a bit about this phrase in my quest to articulate why it’s not helpful, and I finally found something explaining my sentiments. This guy said it better than I could, so I'll just quote him. “Many sufferers feel their suffering is beyond what they can bear. For these individuals, hearing the message “God won’t give you more than you can handle,” can communicate that they are not good enough or that something is wrong with their faith. This message that “God won’t give you more than you can handle” can also breed a self-focused and self-reliant way of thinking. The sufferers may feel they aren’t trying hard enough, or aren’t reading their Bibles thoroughly enough or aren’t praying fervently enough. They can experience guilt, shame, and doubt based on a misunderstanding of God’s Word. This unintended consequence of “God won’t give you more than you can handle” is antithetical to the gospel...

If you’ve read this blog with any regularity or seen my Facebook statuses at all, I’ve been vague about Eli’s primary problem. It’s not because I like to vaguebook, it’s mostly because we don’t have a confirmed diagnosis (and might never have one). If things end up better than we expect, I don’t want to spend years speaking with certainty about his issues and then have him turn out average when I commandeered a serious diagnosis for years, and have people think I was just being over-dramatic or making it up the whole time. But another reason for this is I am still struggling with denial, with hoping he WILL turn out “average” against all odds, with wondering how and why this happened to us. I see other parents who seem so well adjusted, and it makes me feel simultaneously jealous and guilty, like there is yet another thing wrong with me that makes me unable to look on the bright side 100% of the time. Or even 50% of the time. Anyway. Dwarfism. That’s what they think it is. I haven...