I know that I have been a bit of a ghost on this page. It’s hard to know what to write, and what I want to share with the world at large. Recently I have been thinking a lot about what life looks like for our family now that Lyra is 9 years old. Now, I remember when I was 9 years old very clearly. A lot happened in that year of my life that makes it stand out very clearly. I find myself frequently comparing what I was doing, and who I was, to who Lyra is now. Needless to say, my parents experienced me being 9 very differently than I experience Lyra being 9.

What do I mean by that? Well, just before sitting down to write this, I went into Lyra’s room to start her overnight feed through her feeding tube. While in there, I noticed a very particular smell. She had pooped in her diaper while asleep, and I needed to change her. Yes, my 9 year old is still in diapers. No, there are no signs of being able to potty train her at this point.

Another example? By 9 years old, my mother never dressed me. Heck, she didn’t even pick out my cloths unless it was a special occasion. With Lyra, every morning I wake her up and transfer her to her changing table. I change her diaper and pick out her clothing for the day. She doesn’t care what I pick. She can’t pull a shirt over her head, or pull up her own pants. She doesn’t have a favorite pair of socks, or a hair band she just has to wear. It is 100% up to me (or my husband) to get her dressed, brush her teeth, and pull back her hair. And yes, Mark has definitely learned how to do a mean ponytail.

Traveling? By 9 years old I had flown to California by myself at least once. When I traveled with my family I was in charge of my own carry-on, and I was walking on my own two feet. Traveling with Lyra is a process (to say the least). Lyra needs more clothing than a typical child. She spits up, sometimes her diaper leaks, and mishaps with her feeding tube happen. In her carry-on we typically have 3 changes of clothing. We have a small suitcase that is her medical supply bag. This contains all of her medications, 3 days worth of liquid formula (you can’t buy it in stores), 3 days worth of equipment needed to use her feeding tube, and extra diapers/changing materials. The bag is always bursting at the seams. Then we have a backpack that is her diaper bag. Also stuffed. She also rides in an adaptive stroller, so that’s fun. While traveling, we have to monitor how often we change her diapers, how much fluid she has had, and when she needs her various medications. You think changing an infant’s diaper is hard on a plane? Try changing a 9 year old’s. There is also keeping her entertained and making sure we have foods that are safe for her eat. Of course, this is all just for Lyra. We also have our 5 year old, his stuff and all of our stuff. And don’t get me started on the checked bags. We look like we are traveling with a small village of people, not a family of 4.

But traveling rarely happens. We really only travel once or twice a year. That is about all we can handle. But what about the stuff that is more daily? Meals? By 9 years old I was helping my mom cook, especially when it came to things like cookies. I could cut my meat myself, and had no problem biting into an apple. We just remodeled our kitchen to keep Lyra out of the kitchen because it is not a safe for her to be. Foods like grapes, cherry tomatoes, etc still need to be cut in half. Not only can Lyra not cut her own meat up, she needs it to be placed on a fork for her. Otherwise, she just eats with her hands. In fact, she still struggles biting off bits of food, so everything needs to be cut to an appropriate size for her. And hard foods, like raw carrots, are a no-go for Lyra. We feed her foods like yogurt by hand, as if she were an infant. While we work on utensils consistently, it’s simply not a skill she has at 9 years old.

There are so many things I think about regularly about how my life with her is so different than my other friends with 9 year olds. Maybe I’ll share some more of those thoughts. Maybe I won’t. But I am coming to understand that no one will know how different my life is, unless I share something about it. So, I guess this is my little attempt to do so. I’m not looking for pity. I don’t think my life is “bad”. Lyra is absolutely my sidekick, and we laugh together basically every day. Our lives are just really different, and I am hoping that more people can understand that.