10 years in

 I enjoy painting, its not something I am great at but something I find cathartic. Some paintings I had made with time and detail… while others were made in pain, they don’t tend to have much detail and can be messy, but they have a lot of meaning to them. In our house is a painting I made in 2020 of a lyric from the band Switchfoot. It says “hallelujah nevertheless you’re my joy invincible.”

Yesterday Lydia noticed the painting and asked what it meant, so I played her the song it comes from. It had been a little bit since I listened to that song. The CD it is on came out in January 2019 and that song was played a lot during that year so it brings me back to that timeframe.

My Facebook memories this time of year are like a gut punch. Over the years during this timeframe my grandpa got really sick, Brent’s grandpa died, Jillian had port surgery, we went to NIH, a person made a shit choice to hurt us, and Jilli’s first hospital stay and multiple others. This time for me brings a lot of reflection for me.

I see the people who came out of those situations. And while I would like to say we always came out stronger, to be honest some of them we came out of scarred, and the reality is that is life. Sometimes learning is incredibly painful and there are times that while the destination might be good, its ok to say that the journey sucked at times!

Today is the 10-year anniversary of Jillian’s first hospital discharge. There have been many since. I see the person I was at that point. I see the determination. I see the mindset I had then. It helped us to survive, it got my kid what she needed, and it made it so we could keep going.

Hindsight also has a way of showing you your own shortfalls. I sure would love to pretend I don’t have any, but being me I can see my own up-close. I was so determined then that were going to get to the root of the problem. While we were so happy to be discharged and so hopeful for resolutions ahead, we also left that first hospital stay with not much of a plan, and would end up right back on that same floor just a few weeks later.

That second stay brought Jillian’s feeding tube, the floor dr said it was for 2 weeks, the GI doctor who had been practicing for a lot longer laughed at the statement. I was hopeful it was the stopgap to get weight on her, figure out the issue and fix it. I was SURE it would be gone by her first birthday… I was going to work hard enough to make that happen!

The next several months didn’t go according to my plan. To get calories in her I was pumping plus we were adding formula, but I kept a stash of breast milk in case she started eating orally again since that is what she had preferred orally. It was a wrestle for me when it was coming up on the time when it would no longer be good and we had to choose to use it in her tube or throw it out.

One of our motos here for a long time has been we will do what we need to do for the girls. That moto has played out in so many ways over the years, from sleepless nights to learning how to do medical things at home that I never thought I would be doing (I mean everyone mixes TPA in the child’s bedroom right). There are so many practical ways I have lived that moto out.

But hindsight has me wrestling with my ablism of thoughts in this journey. Its not that our moto is wrong, its still what we keep doing, and I still stand by that. I don’t regret my determination; we have dam needed it at times. What I’m wrestling with is my determination that if I just worked hard enough, did all the right things, read enough, saw the right doctors… that I could solve everything.

When things go sideways sometimes in life you have to wrestle with what is of most importance; what has to be taken care of right now. Priorities change and shift over time. Something for us that has shifted over time is asking the question whats best for the girls based off of the information we have right now and historically, not based on some imaginary idea of what things should look like.

In practical sense 2020 shook a lot of that up for us. Our kids did weekly therapies for years, our therapists are great and have helped our kids a ton, but what we also learned in 2020 is that breaks a good too. But for so long I thought that if we took breaks then I wasn’t doing everything I could to help the girls. Its not that I want to help our girls less or that we have given up… but sometimes the mindset of not having to push at a perceived 100% really changes things. I viewed things that if we didn’t do all of the things then we were not living in hope… what I learned was my eyes on what hope is wasn’t always right.

Reality is that while I might have determination, 10 years later, we still don’t have a definitive name for all of this, despite how positive I was that I would push hard enough and make that happen 10 years ago. We might be closer, last year we identified some genes of interest that might be the pieces but the reality also is that we have been told it will be years before we have any solid answers on if they are our not.

And the funny part is, that while 2023 me would like that answer, it doesn’t take up my brain like it use to. I use to think that if it didn’t take up my brain that it then didn’t matter to me and what I’ve learned is that isn’t the truth. I still do all the things the girls need me to do, just last week I learned how to give a new medication via their ports that has a whole different protocol then anything we have ever done before. And getting the med in hand took many, many phone calls because it ended up at the wrong pharmacy and not written in the way that the infusion pharmacy needed… and I managed taking care of all of the details to make sure the girls got what their medical team said what was needed. Its not that I have given up on my girls, have no hope for the future or don’t still have determination… its that how I think about it all has changed. And a piece of that is continuing to wrestle with ablism I bring in my views of the world and how that impacts me raising disabled kids. 

When Jillian was a baby I read a lot of blogs trying to figure out what I could, but the question I kept having then was “where are all the parents of older kids who have been doing this a while?” Because those spaces were filled with moms of preschool aged kids who had medical needs for a few years or by parents of kids who had suddenly become ill later… but the parents of the kids who were 10 years in didn’t seem to be around. I worked as a special ed teacher… I knew these parents existed somewhere.

And the truth is that 10 year in me, doesn’t blog often, can be found sometimes in the medical online groups but not nearly as much as I use to be… and its not that I don’t care about other families and helping them (I still do behind the scenes work with multiple organizations, just because we are still following viral precautions doesn’t mean we stopped helping others, we literally just finished a big virtual fundraiser for Ronald McDonald House on Friday) its more that 10 year in me is a bit more steady. There still have changes and adjustments that are made medical wise (2022 was a mess with formula recalls) … but it feels less flailing most of the time then it did in those early days. How I view things and see things have changed and I have been humbled SO many times. I still get pissed about things (there is a doctor I am very frustrated with at the moment… and so is most of the rest of the members of our team, they are playing games and just doing nothing likely won’t work here!)  

But to come back to the song lyrics, yesterday as I was holding Lydia listening to that song my eyes got misty at the line “Everything heals, We are the children of the promise.” There have been so many February that “everything heals” made me laugh, because it felt so far fetch and unrealistic… but what has changed in me is what the idea of healing looks like. The reality is that healing often doesn’t look like what we imagined. It doesn’t always look like what society expects… and we have to learn to be ok with that or we can get in the way of our own healing while trying to making it look like we think society expects. I have healed in many ways from past Februarys, but not in ways that I always thought healing would look like.

This morning a different Switchfoot song came on as I was getting ready, and the chorus ends with “let that be enough.” I for so many years have felt like I needed to prove to the world and myself that I was trying hard enough, doing enough… and that if I figured this all out it would prove that… at this point, if you don’t think I’m trying hard enough 10 years in (and I will admit I’m not perfect!) then I think that’s not a me problem anymore, and if you want to try to make that a me problem, 10 year in me has words for you that 1 year in me wouldn’t have used. And I am going to have more grace with this version of me, its my job to do the best I can for my kids, and that looks like a lot of different things, but for now, I think the mindset of not thinking that if I only try hard enough, I can do everything, is a much healthier way to look at things.  I read a quote once (I tried to find it) about how sometimes we build our life up so busy to not deal with the hard stuff and that made me stop to think if I was doing that with the “good things” but at a busy rate that made me unable to wrestle with some of these things? The past few years have brought time to reflect on that, to reflect on the past 10 years, to think about what have been helpful and not helpful mindsets, even in good motivation and action.

This me doesn’t have it all figured out just like 10 years ago me didn’t either… this me is just trying to be better with being ok with that.

 

 

My painting... not straight words, not blended colors, but I see the person who painted this in a time where the earth felt like it was shattering and I see the person who is still going

Ps: the other part of the Switchfoot line “we are the children of the promise” caught me a little differently this time, because my mom and I are currently co-leading a virtual Bible study through a book Beth Moore and her daughter Amanda wrote on the book of Galatians and children of the promise is a theme in the study, funny how the more you learn, little things hit your ears differently.