Extra Chromosome, Extra Extra
Read all about it!
Added bonus: the audio version! If you like this new feature, be sure to let me know in the comments.
Welcome to the Upside Downs! I’ve been writing here for a little over a year, and I have gotten quite a few new subscribers lately, so I thought I’d do an introductory piece for you guys. There’s a lot in my archives you could go and read to get caught up, but geez, that’ll take awhile! I mean, still go and do it if you want, that’d be awesome, but I’ll make it easier on you.
My name is Kristen Malcolm, and I’m a singer, writer, wife, and mom, among many other titles. My main purpose here on Substack (at least on this particular column) is writing about Betsy, my youngest daughter, who has Down Syndrome. My husband Ian and I are committed to raising Betsy as naturally, organically, and non-medically as possible, which is tricky because DS kids are prone to a lot of health problems.
Anyway, a little about me: I am 42 years old, I love music (mostly rock, but a little of almost everything), nerd culture, and good literature. I’m an INFP, Aries, and a cat person. I grew up as a Preacher’s Kid, which explains a lot about me; all PKs are at least one of three things: really good, really bad, or really weird. I have been all three at one point or another, and I’ve pretty much settled on really weird. As a PK, I’ve lived in 6 different states, eventually parking it here in Georgia, where my parents are, as well (they live about a mile away). I am married to
who writes , where I also write fairly frequently. Ian and I were brought together by a mutual love of music (in this case karaoke) and pizza (the karaoke was going on in a pizza place). Yup, we met because of karaoke at a pizza place, and we are now the Karaoke DJs that host the weekly show in that restaurant where we met. Ian and I got married in April 2022, on the day I turned forty. We each have a teenager from our previous marriages, his son Eric (17) and my daughter Miranda (15). And of course, the whole reason I’m writing, we have a daughter together, Betsy, who is getting way too close to turning two. My purposes in this life (at least that I’m aware of so far) include my daughters, music, and healing work (I practice Reiki). I also love writing, whether it be songs or my little contributions here on Substack, and who knows, maybe I’ll write a book some day. Ian has produced six songs for me, with several more in the pipeline (and LOTS more of his own), including a few about Betsy. Filament is a song he wrote about her when she was two months old, and Crybaby is one we wrote a few months ago when she was sick for the first time ever (and I was super overwhelmed by it). You can read the story behind Filament here, and the story behind Crybaby here. Just for kicks, here’s the lyric video for Crybaby:That video is from my YouTube channel, which includes a little bit of my music and a lotta bit of Betsy. I post videos there almost daily, so subscribing there is one of the best ways to keep up with our little gal.
Shameless self-promotion accomplished, now on to Betsy! She was born in October of 2022. We knew from OB visits that she was most likely going to have Down Syndrome, and what kept coming up on ultrasounds was a heart defect and a bowel connection issue, both common to DS kids. She was born via Caesarean, simply because she was facing the wrong direction and the doctor couldn’t get her turned properly (personally, I don’t think that was a good enough reason). Her face was badly bruised from the ordeal, and it was pitiful. I was going to include a picture, but I just couldn’t do it. Looking at those photos now just hurts. At the time, it simply was what it was, and we just dealt with it, but now, just wow. Anyway, she had surgery at two days old to correct her duodenal atresia, which is that bowel defect, and they also installed a g-tube to help with feeding and medications.
This photo was eleven days after her surgery. Recovering like a boss, her face had mostly healed up, and I think by then they were already letting me try breastfeeding. She ended up spending roughly three weeks in NICU before we got to bring her home.
Betsy’s heart defect was to be addressed next, at almost seven months old. In fact, I first started writing here on Substack a few days before her scheduled surgery, and you can read that here. Her procedure went really well, and she recovered beautifully, getting sent home after six days. We did have some complications, leading to us having to give her only skimmed breastmilk (that’s a looong story), but we rolled with it. Since then, Betsy is even more active than she already was—this girl has always loved to move. She was soon taken off all medications, and she got to have her g-tube removed from her stomach since we were no longer needing it (geez, I hated that thing) just before her first birthday. As of now, she’s no longer having to see her gastroenterologist at all (unless the need arises), and she is currently going nine months between cardiology appointments. At the next visit, if she’s doing as well as she should be, we will move on to just annual checkups.
As for Betsy herself, she is magical. There is something beyond just special about this girl. She is instantly loved by most everyone who meets her. She is a spunky little fighter with a side-eye that is no joke. Her giggles and smiles are absolutely heart-melting. She gives the best hugs and snuggles. She loves music and it always makes her groove. She even has favorite songs! Betsy may not sit up all on her own or crawl yet, but she’s working on it. Despite low muscle tone, she is flexible and strong. She keeps growing and learning and she makes me so proud. I really had no idea what to expect in raising a kid with Down Syndrome. In some ways it is harder than a typical kid, but in others it is actually a bit easier. For instance, it’s not always easy to tell what’s wrong when something is bothering her since she doesn’t say actual words, but on the other hand, she’s not crawling or walking, so I’m not having to chase her down constantly (yet). That day will come, for sure. But seriously, that extra chromosome of hers does add a lot of extra to our lives.
And we are all so much better for it.
If you find joy in reading about our little girl, how bout hitting that little heart icon to show some love, and maybe subscribe to my little ‘Stack? And if you want to upgrade that subscription to paid, you’ll have my sincerest gratitude!
Just for fun, here’s a little video of Betsy bouncing like crazy with her dad. Thank you for reading!
Oh, Betsy is the cutest!!! I love the bouncing video. Thank you for the introduction to you and your beautiful family; what a lot you have been through and how beautifully you all are thriving. ❤️