Brown and Pink Polka Dots : My job as a medically complex mom

We are at the point in our medical journey that there are some crossroads that we need to navigate though. I have not been shy about the fact that it has been a hard year in the medical aspect however, like anything shared online there are always more layers of situations that are not right for a public platform, so while you might not know every detail, I know that this year has felt very different. This year has felt a level of hard that the past few years had not.

We are over 6 years into this journey, and that means we have learned a few things along the way. That also means that there are some things that we do differently at this point then we did in the start. For the first several years we said yes to every medical test out there. We wanted a name so badly for whatever was going on that we dedicated our lives to a diagnosis. Over the last few months we have informed our team that we are changing course now. Now they need to prove to us that doing a medical test is worth our children's time. Some of our providers are in full agreement with this new path... others are not.

And we have hit the point that if a doctor is not on the same path as we are we are asking them to get on or step away. That might sound harsh, but I don't have time to fight with doctors all of the time. We can have some different thoughts and ideas from a doctor, I am not saying that everyone needs to bow to exactly what we want, but if someone can not be a team player then they need to not be on the team. Life is too short for people to not listen to us.

Also, my kids have a voice in things. Yes they are 6 and 3 so the majority of things are still on our shoulders however we include them in what we can. They know why they take the meds they take. They know why they have the medical interventions that they have. But they are old enough to tell us what is important to them. Often the outside world does not think the same way about important things like they do... so it is my job to advocate for what is important to my children. My kids are both highly motivated people. Jillian made a list recently of her goals... and few of them were medical, many of them were kid things... but if she is always in the hospital she has no time to do kid things. She can't work on things like riding a bike, learning to color inside the lines and tying shoes if she is always being medically tested. Those things can be worked on when her body is in a good place, if its fighting to breathe, her body has to focus on that. There are side effects to medical testing that we have just lived with for years, but they have taken a toll. We see this with morning meds, we have needed to push the time of morning meds back a little because we need to get school done before meds because otherwise Jilli's body is working too hard at digesting meds to focus on school and learn. We can not have all of our good days spent testing. Sometimes this boat just needs calm water.

I feel like I'm not the only one saying this right now though. I feel like SO many people in my life are in the midst of transitions right now. That the world seems to be shifting. The Biblical story of old and new wine skins keeps coming up in conversations. There are tons of us that don't know exactly what the shifts are going to look like, but we can feel in our bones that God is doing some different things, He is shaking things up a bit, stripping some things away, unvailing some things, and making changes. I keep having conversations with people where it is about how they can feel God is moving them in a different direction and it feels scary but good... so if you are feeling that in life right now, know you are not alone.

But in all of this I have been learning about what it looks like to be a mom to my kids in this season. Jilli has started back up with homeschooling which is going pretty well. We are doing a few different things with that this year that are going well. Lydia has grown so much developmentally lately. It is fun to watch her play. The other day I was working on folding laundry and I came into the living room to find both kids sitting and looking at books, which made my heart so happy!

The things about parenting is that you need to have a right now mindset mixed with a future mindset while not knowing what all of the steps look like or what life twists and turns are going to come. And you need to be continually reevaluating what is the best choices for right now because that changes from time to time... sometimes the goals stay the same and the best way to get to that goal changes and other times the goals change. Our goal use to be all about finding a diagnosis, our current goal is to enjoy life as much as possible so that means that sometimes life is about making medical things as best and possible and sometimes right now that looks like figuring out what kid things we can do and make the best of.

Sometimes changing of course needs to happen, sometimes that is to get rid of not good things you were doing before, but often it just means that at this point in the path there is a turn, which does not mean that the path you have been on is bad, that path got you to here, but that this is the next step on this path.

One of the complexities of medically complex parenting is that there is the medical aspects of things mixed into the other kid stuff. One of the things Brent and I have said since the start is that we wanted to focus on doing the things that mattered the most to our children and our family. Part of that means us not boxing our children in, that we let their bodies show us what they do and do not need. That also means that we look at treatment options by looking at what is most important to our kids. We know that it might mean that at some point our two kids have different goals, and if that is the case then we cross that bridge when we get there, but just because they have the same medical mystery doesn't mean they will choose all of the same things. This means that we involve them in some choice making... now because of their age we get finial say but we include them in many conversations because my goal is to teach them the skills they need to have to know how to advocate for themselves medically and that doesn't just happen on their 18th birthday, that is something we need to start working on now so that when they turn 18 it is a smoother transition. Just like I need to teach them how to make their bed and do laundry, I also need to teach them how to make medical choices. I don't want them to look at their medical journey as things we are doing to their bodies but instead I would love for them to have the view that we are partnering with them and their bodies to work together to make them as a whole person do the best they can in the best manner for them.

The thing I also know is true is that I will mess up at that sometimes. And sometimes life is going to throw curve balls that make that tough. And in those times it is my job to have grace with all of us in the process.

Other life updates... a week ago Friday Lydia broke out in a strange rash. I took her to the walk in and they said maybe it was viral. To be safe we kept her in the house for a week. Today her GI system is not pushing her poop out which has been causing pain since around 3am :(
Jilli has still been working on coming back to baseline since her crash. She goes for an OT eval on Thursday. Her body this time has been getting stiff which is not her normal, normally she lives in floppy.

Here are a bunch of pictures from life lately. Last week was kinda calm because we stayed in the house most of the week with Lydia but before that we had been at rmh for a month and did tons of stuff!

Jilli lost a front tooth!

We made the volunteers cookies

And washed dishes

working on fine motor

doing VR

She played hard in dance therapy

Dance time!

Movie night

Lydia got the MMR

And the girls did crafts while in infusion

coloring in the garden

doing school in the garden

They released butterflies

making bread with Bumpa

Helping Mrs. Ann with a project

Coloring the run/walk shirts

At the complex Care picnic with friends

The museum came to do a rock program but Jilli was the only kid who came so she got to do a super cool class!

Music Therapy

Jilli lost her second front tooth

We decorated our room door

Jilli and art Holly celebrated Jilli's 3 year art therapy anniversary

Lydia ended up hospitalized for a night

Coloring together in the hospital

The hospital run/walk

She FaceTimed with uncle Seth over the finish line

Brunch after with our team

Coloring with Laura

Bumpa telling a bed time story

Playdough time!

She likes to make collages for the RMH staff

There was a prairie school group that came in

Playing Dinos with Caroline

Shopping with Emerson

Headed home

What Lydia's rash looked like when it first started

The next morning

Day 3

It looked like cuts on the on one on her back however it was not, some parts were just really dark lines

Day 4

Day 6

Doing Frozen yoga

A very cool new book!

A cool package came

Jilli's Halloween costume

Peppa Lydia

Even with the rash she still felt fine most of the time

Lydia with her babies

This might just look like a toy but it is how she works through a lot of her medical stuff

We have been gone so much this year that there are still a few Christmas gifts from last year that still have not been taken out of the box... so Friday night we let the kids open up a robot!