 I love most holidays, but Valentine's Day has never been one of them. When I was single, it always seemed a sad reminder of my inadequacy at finding a partner. When I had a partner, they were never romantic enough to satisfy the commercial cravings for diamonds, chocolates, flowers and fancy dinners that the media has been drumming up ever since the big Christmas holiday sales ended. For many years though, V-days have felt different for me. I haven't worried so much about what happens on this day, because it is the culmination of all of the days of the year that leave me feeling loved. Today, for instance, my husband did some laundry and paid bills, and that feels plenty romantic to me. He claims to have big plans for later, but honestly, I am satisfied with the love and sacrifices he makes every day. My son tells me that he is glad that he's a child and isn't expected to get anyone anything for Valentine's Day. I tell him that he is never obligated to get anyone anything on Valentine's Day. He replies that if he had a wife she would be furious if he didn't. I wonder where he gets this idea. When I was his age I once spent an afternoon in a park with a handful of friends. Someone had a boom box, and we played "The Greatest Love of All" by Whitney Houston over and over again while we lip-synced and danced around. It took me many years and many failed relationships to truly understand the meaning of that song. It wasn't until I reached the same conclusion as Whitney, that "learning to love yourself is the greatest love of all", that Valentine's Day changed for me. I was no longer willing to stay in a relationship for fear of being alone, and being alone no longer seemed like such a terrible thing. I stopped waiting to be rescued, and instead I rescued myself. Learning to love myself wasn't easy. Growing up I was mercilessly teased for being a skinny white girl on an Indian reservation. I internalized so much of this as a reflection on my self-worth. I desperately wanted someone to love me despite myself, and was continually disappointed that all of my relationships came up short. It wasn't until I found myself in a terribly abusive relationship in my mid-twenties that I was forced to realize that what I was doing wasn't working. I became determined that I would find my way out of this unhealthy cycle. There is one line in that old eighties song that isn't quite right. Learning to love yourself is not "easy to achieve". After many years of therapy, self-help books, mediation and self-reflection my journey led me to a place where I finally had learned to love myself. And that is when I met the man who I would be in my first truly healthy relationship with.  We were married by a lake in California three years ago in June. My friends often tell me that I am so lucky to have found Max. I agree with them, but I also know that it was not just luck, it was hard work. Our relationship works because I love myself enough to know that I could walk away at any time. I stay because I don't have to. And that's a good feeling. Wherever you are this Valentines Day, whether you are single, in a co-dependent, unhealthy relationship, or even if you are happily involved with the love of your life, I invite you to listen to this cheesy old eighties song and remember, learning to love yourself, it is the greatest love of all...
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 "I hate having this on my face!" Having a baby who needs oxygen really sucks for many reasons. First of all, the baby hates it because it's so uncomfortable with a hard thing in their nose and tape all over their face and a tube tugging all the time. But much worse is the fact that your adorable baby now has something covering their cute little face...something that makes them look like they're sick. So instead of people saying "What a cute baby" they ask "What's wrong with your baby?" and that just sucks. When Benny first got prescribed oxygen I really freaked out. At first I just despaired that there was no way we could do this. Then I pulled myself out of it and tried every different method of keeping the cannula on his face that I could find - paper tape, tender grips, cannulas that claimed they were softer on a babies face...none of them worked very well. Benny hated it, I hated it, our whole family hated it.  This is what oxygen tubes look like without cable concealers, a tangled mess that goes everywhere! Finally I reached out to everyone I knew who had ever had a baby on oxygen. Since we live more than a mile above sea level, that’s actually a lot more people than you might think. I got a lot of advice. One mom shared that to keep from tripping over the long oxygen tubes running from the concentrator in an upstairs bedroom to her living room she used cable concealers and multiple tubes. We were very excited about this idea, and my husband immediately ran out to a home improvement store and bought a kit. Another method someone showed me for dealing with the great oxygen tube tangle problem is to use a pacifier clip to hold the oxygen tube at a loop at your belt buckle like this:   Soon after these great discoveries, a very experienced Oxygen Mom came over and showed me all of her tricks. She showed me how to cut up pieces of Tegaderm Film and apply it at the temples and behind the ears to keep the nasal cannula in place. This was much easier on his skin than the "Tender Grips" bandages, which ripped his skin off when removed, making him scream in pain and leaving bright red painful circles on his sensitive newborn skin. She also showed me how to snake the tubing down his outfit so that it wouldn’t get caught and accidentally strangle him.  Benny with Tegaderm Film holding his oxygen in place. It's clear and doesn't pull the skin, so is easier to remove. Photo by Kayleen Walsh.  She told me that I could request small tanks and a backpack from the oxygen supply company, which allowed us to be much more mobile. (Surprisingly the oxygen supply company hadn’t bothered to tell us or supply us with one until we requested it. They had only given us giant tanks to lug around) With the little tanks we felt liberated. We were even able to use slings and front carriers and go for walks.  Big tanks, little tanks, tubes, oxygen concentrator + pediatric flow meter. Not what you thought your nursery would look like. An emergency hospital stay led to some further insights on how to make Benny's oxygen use more comfortable. While we were there a nurse told us about a nasal gel we could put on his nose to keep it from getting too dried out. We also discovered that having a humidifier on his oxygen line really helped with his comfort. We asked if we could take home the bottle they had used in the hospital to add to his line at home. Unfortunately, Benny was nearly drowned when my husband accidentally tipped the water over into his oxygen line. After that we decided to take it off until we could get a proper system. During the drowning incident we also decided to come up with a better system for keeping his nasal cannula on. My sister Josephine was visiting, and helped me to modify some of his knit hats so that we could tie the tubes up over his ears and then cinch it under his chin. This had the effect of keeping the nasal cannula in place and the hat on at the same time. It was also easy to remove, so that if there were ever another incident where we needed to remove the cannula quickly we could.  You can see the marks left from the "Tendergrips" and why it was so hard to get the cannula off quickly when it filled with water.  Cannula hat version 1.0. The first hat that I modified I simply cut a couple of holes on either side of the hat and used pipe cleaners to hold the tubes in place. It worked really well and also looked really cute, but I was afraid that the pipe cleaners might accidentally poke his head if I used them at night. I happen to live by a yarn shop, and Josephine stopped by to see if she could find a good material to use. The shop owner helped her select a yarn that was not too stretchy, so that it would stay in place well, and a yarn needle. Sewing the yarn onto the hats is really simple and only takes about a minute to do once you have a yarn needle and yarn. We shot a little video to show how, but the files corrupted somehow, so I’ll have to reshoot it and post it later. In the meantime, here are some pictures with directions on how to create your own cannula holding hat:  First you need a yarn needle and some thin thread that is not too stretchy.  You thread the yarn through the yarn needle just like you would a needle and thread.  Then you sew a short length of yarn on either side of the hat, near where your babies ears will be.  You cut the thread so that it is just long enough to tie up in a bow, pull it so it's even on both sides, and secure it onto the hat with a knot.  Finally you tie knots at the end of each piece and this is what you get - hats ready to hold an oxygen tube in place.  To secure the cannula in place, tie each side of the cannula up to the hat, place cannula in nose and slide hat on, then cinch the tube up under the chin.  Here 's my sister Josephine showing off the adorable new cannula holding system she made for Benny.  Benny looking happy, stylish and comfortable in his oxygen holding hat. Soon after we created the modified hat system, Benny had to take another emergency trip to the hospital. Everyone commented on how cute and functional his hat was! We also made another discovery. He happened to be wearing a pair of snap down footy pajamas the day he needed to go the hospital. We discovered that in the snappy pjs, he was able to remain clothed despite having tons of wires and tubes running all over him for monitoring. This discovery came in handy later when he had heart surgery. We stocked up on snap and button down pajamas beforehand, as well as leg warmers. It's silly little things like this that can make a hospital stay so much more comfortable.   Knit hats get loose after a day or two of wear, so if you try the hat system I recommend either making many knit hats and washing them often, or using a sun hat. If you are not the DIY type, there is a company that sells hats, o2kidslids.com. We bought a hat from there as well, and it worked great other than that I hadn’t ordered the right size, so it was a bit big on Benny. With all of these tricks, I quickly became a pro at keeping Benny oxygenated in style and comfort. Still, it was a big relief when he finally started keeping his levels up on his own. How easy life seemed without all of the tubes and tanks and machines that came with the oxygen. Recently we got a call that Benny’s sleep study had shown his oxygen saturations levels dropping below 90 over half of the time. Our doctor recommended putting him back on oxygen full time for a month. I was devastated. We had all enjoyed the freedom without oxygen and the idea of having to do it all again seemed like torture. Today is the first day I’m going to leave my house with Benny since having to put him back on oxygen. I am bracing myself for it as I had really been enjoying just having a baby. A cute, healthy-looking baby. A baby whose health condition I didn’t have to explain if I didn’t feel like it. A baby who came just with a diaper bag and a car seat, not all of the normal baby stuff plus a backpack, tanks, tubes and all the various oxygen tank accessories. This was one of the hardest blog posts I’ve written because I really wanted to be cheerful and upbeat about having a baby on oxygen, but I don’t feel that way. Having any kind of baby is hard. Having a sick baby just sucks. It doesn’t mean I love Benny any less because he has health problems, it just means that sometimes I have days where I just don’t want to go outside. I don’t want to explain to the kind, curious strangers that no, my baby wasn’t a preemie, that he has Down syndrome and is recovering from a heart defect and that’s why he’s on oxygen. But he does and they will, and maybe my going outside with my baby and his oxygen tank will help somebody else feel like it’s okay too. Maybe my writing this post will help other parents who are going through this to know that they’re not alone, and that it is doable even if it does suck. I hope so. Please let me know if you have any suggestions for parents who have a baby on oxygen that I didn't include here, and if you know parents who could use this information do share this with them. Thank you!  |
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March 2025
AuthorSince becoming a mom to a little boy with Trisomy 21 I have written a lot about Down syndrome and disabilities. I am a storyteller, wife and mom to a teen and a toddler. Life is busy! Categories
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