Brown and Pink Polka Dots : You can feel both

I'm going to let you in on a little wisdom that I am just starting to learn after almost 30 years on this earth...

You can feel multiple ways at the same time...

You can have opposite emotions at the same time... about the same thing... or about the same interaction with a person...

Life looks a lot less like those emotions baby books and more complex.

Maybe it took people less then 30 years to learn this but looking at society I think we still have a ways to go

Many people have asked if we regret going to NIH... it was really stressful, Jilli is dealing with a lot of hard emotions that we had to seek help with last week, and we felt like there was several frustrating points of communication...

But here is the thing...

We don't regret going...

There would have always been a what if. This was brought to us by our home team and we were following their plan. If we had not gone we would have been second guessing ourselves for a long time.

There are some good insights that are coming out for the results we have so far. Lydia's neurospych testing is diffenetly interesting... she scored at 66mo in one area and she is not even 3 yet. The girls imunology testing is coming back really interesting... like things theoretically Jillian should not be considered immune to she is (like some of her vaccines she one had one of the multiple of that vaccine that she should have yet her antibody level is high)... Lydia also shows immunity to diphtheria yet has never been vaccinated. This is all very useful information for us. Knowing that Jillian has a hearing loss is helpful. Also knowing to look at the girls D levels is helpful.

There was some positive people we did meet. Our coordinator was great. The chaplain was wonderful. The people at the inn that taught Jilli how to knit and paint were amazing.

But there are also the really hard part about the trip. Parts that have marked us... parts that have marked our kids. We have a plan at out home hospital about how we are going to bring Child Life in more for the next little bit to help the girls out. We love the expressive therapies at our hospital but we have not really worked with Child Life much but this is a time to step in and help our girls and I am thankful our hospital has that opportunity.

And I am allowed to have complex feelings about the entire situation... and that is ok...

And it really goes beyond just this...

In our society we stink at holding things in the tensions of life... we want life to be neat and clean but it is not. We try to trick ourselves into thinking it is... we build walls to make life seam clean... but what that does in the end is rob us of the skills we need to hold life in the tensions and see the beauty.

I can hold in the tensions that it is amazing and wonderful the life that feeding tubes and oxygen give to my children because without them they would not be able to be kids, they would be sick all of the time, but with them they can play. I can also see how my back does not always love carrying oxygen tanks and sometimes feeding pumps can be a pain when they keep erroring.

I can hold in the tension that Jillian's urine output has been low since we got home (like we are changing her diaper at 8am and the not again until late afternoon). This isn't a great sign for her... bt I also see her smile, how hard she has worked in school this week, and that she got to go to Home Depot to do a project with daddy yesterday. Both things cane be true. I use to be so protective of her when her body showed any signs and would obsess about them all driving myself crazy (last May!) but I am learning to live in the tension here and see all she can do and find the good. Her body is going to do what it is going to do... me stressing about that isn't going to change anything... and this is from someone who leaves in less then double digit days to go to another state and realizing that its not out of the question that she might need to see her team before or after that... but me freaking out isn't going to help anyone so we keep living life because then my kid gets to enjoy life more. I can't put them in bubbles... and I realized a long time ago that I don't want to.

I can hold the tension that I want a perfectly clean house with everything organized just so... I would love my house to look like Pottery Barn... I also know that I have medical needs myself and that many times that steps in the way. Tonight I wanted to be packing but I went to the mall today and my body has given out on me at this point in the day and I can't do much more then blog right now. That is just life.

I can hold the tension that Jillian uses a wheelchair and walks... that is not something society teaches about and honestly I worry about that when she gets older... will people think she is faking it because she can walk but also needs a chair? I even caught myself thinking this the other day when the girls were playng with Barbie and Lydia took the one Barbie out of the wheelchair and my first thought was "that is the wheelchair Barbie... she can't just get up" and then I had a reality check with my own ablisum and realized that Lydia was just doing what is normal in her life... her sister uses a wheelchair and can walk... that is normal to her.

I can hold the tension that I would love to be helping others 24 hours a day and traveling all over the world loving people... but my life season right now is loving the people that are around me right now the best that I can... and sometimes that means taking mental health time for me too... which I stuck at... I want to be there for everyone at every hour but I am starting to learn that sometimes when I am hurting or struggling that I need to take a second to let myself breathe before tackling the world... and sometimes it is most loving to take a pause for a second... and sometimes that is rooted in love... and sometimes the best thing to do in the midst of struggle is to love other people and realign your priories... both can be true.

I can hold in the tension that rare disease day this year was really hard for me... I made the fake happy Facebook post in the morning with us in our jeans but mid day I became very very sad and felt like we did not fit in anywhere in the medical world. I felt like there are all these great celebrations and days for people who fit in the boxes but we fit in no where and after just coming off of two weeks of an emotional medical roller coaster it all felt very raw. I kinda spilled my feelings on a friend's post about rare diseases... and this friend loved me in that moment and sent a super kind message. I can bring awareness to gene research even if so far it has not helped us at all. I can hold the tension of being ok with being undiagnosed and admit the hard things that come with that.

What would life look like if we could hold things in the tension better... man I can only imagine how politics in this country might change if people could hold tensions better! Who else could be love better? What things wouldn't we write off? What areas could we experience the true joys in life? What areas would we stop exchanging safety for depth... man we really love fake security. How would it improve our communication with others? What expectations of other people and ourselves would it free us from? How would it let us better be who God created us to be?

Life has been about the tensions since the beginning... and we as people have always stunk at it... the Bible is full of times of people living in the tensions... but what if we worked at it? I know I am just starting...

Both kids earned stickers at NIH for each hard thing they got through and grandma and grandpa took them shopping to cash their stickers in and Lydia picked out this sink which she loves!

Jilli's Tiny Superhero cape with her cool new patch

Lydia giving tubie puppy a check up

Jilli cuddling with BaaBaa... she spent a lot of time this week like this... she is also become very attached to BaaBaa since we got home and BaaBaa goes everywhere in the house Jilli does