Today’s the day for a few new experiences (both normal and abnormal)

A few new things have occured with our family this past week. Things we had never experienced before. One is something that sounds so routine when you have kids. And the other is something that was routine for us for so long that when it happened this week, the way it did, it felt so foreign.

The first is the routine experience that has never been routine to us before. Baby Bear ate baby food. From a spoon. Directly into his mouth.

That’s it! It was so beyond exciting that we are practically shouting from the roof tops. That is the latest milestone that literally had Bear saying “Shit’s getting real!” and we could not be more giddy about it. So mundane, right. Yes, it’s always exciting when a milestone is hit, especially something like eating food that makes your baby seem that much older and not so “baby” anymore. It could draw a tear from nearly every parent. But to be on kid #2 and have this be a completely new experience for us, really is mind boggling in our abnormal world.

When Quinlan was born he used a bottle, as expected that a baby would do. He didn’t gain weight as hoped, but, he was eating. By the time he was 4 months old and diagnosed with having seizures, he was prescribed multiple seizure meds which in turn made him drowsy, which then lead to a feeding tube. From there it was failing numerous swallow studies and ultimately having a g-tube placed directly into his belly. This allowed for all food and meds to be given without anything going directly into his mouth. At the time, we weren’t sure if this was a permanent thing or if it would only be used until his meds became consistant and his seizures got under control. Little did we know the g-tube was going to be mandatory and the number of seizure meds would continue to grow throughout the rest of his all too short life. Never did a drop of food enter his mouth. A baby spoon was never needed. We had been gifted the obligatory set of baby utensils, kid bowl, plate, and even the handheld mesh fruit holder that babies can learn to taste the fruit without the risk of choking. All those products were kept in their packaging, in the back of the kitchen cabinet with many hopes that one day they’d be opened and used as they should.

So, while Quinlan was never able to use them, we were finally able to use a spoon to spoon feed Baby Bear the, oh so lovely, mush, and it was amazing. Sweet potato face, and all! Check it off the list of “woah, this is happening” moments.

The second new happening this week is a bit more obscure. The abbreviated version is that I brought my child to Boston Children’s Hospital, and it wasn’t through the ER or for a doctors appointment. It was purely for a friendly visit.

Baby Bear got to venture in to Boston to meet some of the extraordinary people that were such a huge part of Quinlan’s life (and all of our lives). As bittersweet as it was, it was ultimately a gift to have him be held by people who have also held Quinlan in their arms and see the same caring heart shown to both of our boys. To hear them say “he looks wonderful” was amazing.

It goes without saying that Quinlan was also a wonderful soul, but there was no hiding the fact that he had his diagnosis. And when doctors would see him in the hospital, it usually wasn’t when he was looking his best – although his handsome looks were ALWAYS very visible.

I actually had a moment when driving to the hospital this week that was somewhat bizarre to me. I was at the intersection of Brookline and Longwood, an intersection I have driven through hundreds of times, and I looked in my rear view mirror and saw Baby Bear sitting in his car seat looking around at the colors and movements outside, as he always does. My thought at that moment was “this has never happened before. I have never driven to this hospital with my healthy child in the back seat”. Every other time driving through that intersection was either driving by myself with the giddy feeling of being so close to getting to the hospital and up to the floor to see Quinlan, driving with Quinlan and another adult in the back seat (because he always needed an adult sitting with him, especially in the car), or following the ambulance with him inside it. I was driving to Children’s and not because my son was sick. Again, check it off the list!

I know we’re going to experience many new and different things with Baby Bear that, unfortunately, we weren’t able to experience with Quinlan. It couldn’t be a more happy and exciting, yet sad and disheartening set of feelings. One thing I know for certain is not a single experience will be taken for granted, not a spoon full of mush or an afternoon drive to visit some friends (who just happen to be some extraordinary humans).

💚Mama Bear

Today’s the day I’m wracking my brain

You know what sucks? I can’t remember all of Quinlans meds. It sounds so unimportant, something so not needed to be filling up space in my brain right now, because we all know that is limited these days, but it’s actually making me kind of upset.

His meds were a HUGE part of our every day lives for 2 years. Our days revolved around his meds. We had a full blown schedule of the names, times, and doses of each one hanging in our kitchen, above our make shift medication station. We got to a point, pretty quickly, of not having to look at the schedule during the multiple times during the days when he needed a medication, it came so natural to us. I would look at the clock and automatically know when it was time to get his meds ready. 8pm was a big one. Knowing he needed 4 (or 5…why can’t I remember!) medications to be prepped in syringes with the water flushes, along with two nebulizers. I could watch Jeopardy and know that as soon as the last contestant answered the final Jeopardy question, I could go prep the meds and be back in time to only miss a few minutes of whatever 8 o’clock show was on that night (and if it took a bit longer, which many times it did, thank goodness for dvr). We had it down to a science. The next meds weren’t given until 10pm but that was typically only 1 or 2 that needed to be prepped. That was nothing in our minds. If it was a night when we had an overnight nurse come “early” (10pm) we wouldn’t have to worry about giving those meds and could go to bed “early” to rest up to do it again the next day. This was just a small part of our daily night time routine every single night, and now I can’t even remember the names of the damn meds.

We had multiple trips to the ER during his time home. Each time we’d inevitably be seen by a different ER doctor than the last time. After asking why were there (most of the time they knew just by looking at us why we were there…f’n seizures) the next question was always “What meds is he on?” Without pause, I rattled off each med, how often it was given, and the dose. No paper necessary. No need to look at each bottle to check the dosage. We had those things memorized. This included 5 daily seizure meds (and an additional couple for emergencies), 2 daily nebulizers (plus a couple additional for when he was junky and needed an extra boost), a reflux med, a vitamin, probiotic, and a partridge in a pear tree (not to mention his feeds that were giving at certain time as well, all somehow stored in this big head of mine). How any other bits of knowledge had space in my brain, I’ll never know.

I know I don’t NEED to continue to remember those seemingly small parts of our life 2 years ago, but those small parts were huge to us.

In a couple months, we will officially have had Quinlan gone from our lives for just as long as he was in our lives. And that scares me. He will always be a part of us no matter what amount of time goes by, but knowing each day is getting further and further away from the last time he was with us, sucks. Those 2 years, 5 months, and 1 day we had with the amazing superhero that he was, were by far some of the hardest, yet sweetest times of our lives. I want to remember every. single. second.

And for those reasons, something as silly as not being able to remember all the meds he took every day is making me sad. Another lovely stop on the mother grieving train.

💚Mama Bear