Today we had a down day. Productive me always wants more checks off of the to do list... practical me knew we have been running at more then full speed for weeks and this week will be no different. We needed to refill today and get a few things done. We took down the Christmas tree and I worked on cleaning some things up, Brent washed all of the medical supplies. We made Mickey waffles in our new waffle maker from Christmas and a friend dropped off some very yummy homemade chili for dinner (thank you!).
Jillian has always loved board games, to the point her 3rd birthday was a board game party. Last week at RMH we spent a lot of time playing games with friends. We are trying to lay low in public right now to avoid germs so it was a way to have fun and try to avoid germs. Lydia has never been very interested in games, she has joined a couple of times but it is pretty rare. Last night I got out Sofia Surprise Slides and Jilli, Lydia and I played together and Lydia loved it! We played as a whole family today and Lydia lost causing the need for a lesson about being a good sport and not throwing the game board pieces. She is a fiery one! We also played a Daniel Tiger board game together. Brent, Jilli and I played a new game to us called Trellis (we found it on clearance at Target half off) and we really enjoyed it and are looking forward to playing it with our RMH friends. Lydia discovered our Bear in the Big Blue House DVDs yesterday and has wanted to watch them all. She loved when Bear "smells" her although she needs a bath tonight so if Bear smelled her in real life right now he might have something else to say. Jillian has been busy building her Playmobil and Lego sets from Christmas. She is a builder! My grandparents got her the Playmobil pharmacy yesterday that she loved playing with since we frequent our pharmacy. Its been a great calm day away from the stress of medical choices.
Although we also have seen a few people on our medical team really pull together for us and try hard to help us through the last few weeks... there were tears in my eyes last night a message came through that said we were in this together and ended with #teamupton.
Thursday we got some results from some OT testing in hand strength that were like a punch in the gut but also reminded us that we are not crazy. The one score should be 27... her score is a 5... and that is after months of OT. That says there really is something muscular going on. Its not like she doesn't use her hands, she uses them all day and we do our best to help build her hand strength (Brent sat with her for an hour this morning working on Legos) but this is the reality even with all the interventions. This is a reminder when our team gets so laser focused on a few symptoms (or medical interventions) that there is something global going on here and we cant just look at one or two symptoms and that despite a lot of hard work from a lot of people things are the way they are... that is reality. NIH's "fix" of just get her orally eating like a "normal" person isn't going to fix this... so we need to look at this for what it is... a piece of the puzzle... and while we don't know all of the piece or what the name of the puzzle is, we need to look at each piece because they each tell us something and they all work together.
Speaking on NIH, the other day Brent and I were talking about something having to do with them and Jilli piped in and made a rude comment about the people at NIH. She is free to say that experience we hard, hurtful, exhausting or any other word she wants to describe how the experience made her feel or how the people made her feel... what she can not do is say hurtful things about the people because we always need to treat people with dignity because they are a person. That does not mean that we pretend that they did not hurt us, because that would be a lie, but there is a difference between saying someone's actions were hurtful or misinformed versed saying that the person themselves is stupid... we can disagree with a person's actions and behavior and how it made us feel without disgracing the person... because when we try to demean them as a person then we just add to the throwing of rocks. This situation hurt us a lot and my kids are free to express that and free to never go back there... they are not free to think of the people who work there as less then themselves. Thats a lesson that is really important to me that the girls learn.
Today did have one really hard moment. I was helping Jillian clean up her 18in doll stuff. She was very kindly just given some doll things from a family friend that she is keeping at grandma and Bumpa's house to play with when she goes there. She also has a few dolls at home. She mainly plays with her two American Girl dolls, one Grandma bought for her in Chicago a few years ago and one she was given from Child Life at the hospital in April and the doll goes everywhere with her. I was talking to her about her dolls and we were talking about if she plays with them all and if keeping all of the dolls she currently has is something she wants to do (she has a couple Our Generation and My Life dolls that she has been gifted) and she said yes that all of the dolls were her friends. We have conversations like this about different toys from time to time because I want to make sure she is using what she has and if not we should share with others. She was talking about how she wants the new Joss doll (the American Girl of the Year who has a disability... big deal to Jillian) and I told her that daddy and I had not talked about that doll yet but that American Girl dolls are expensive and mom and dad need to talk about expensive things together to make the best choices for our whole family. This is a conversation we have often when she is wanting a toy at a store or eyeing something up. I want the girls to understand that money is a finite thing and we need to think about how we spend it. I want to have money conversations with them now about toys so that they are better adults.
We don't have medical money conversations with them directly at this age though because they are children and that does not need to fall on their shoulders. There has been a lot of medical bill conversations the past few weeks as there is questions about a couple of big things possibly not being fully covered by insurance and we had a couple of meds filled this week that ended up not being covered fulling so Brent and I had a few conversations around those. None of them directly with her but she reminded me today with how much she hears. She still really doesn't have a great concept for how much X amount of money is in relation to other things, she is learning about coins in school but paper money and its value for things is not something that has clicked yet, something we need to work on and I have some ideas into how we are going to do that better then we currently are, but any dollar amount larger then 10 to her is huge... and it should be at 7 when the tooth fairy at our house brings two quarters. She understood this some at Christmas time when the week before Christmas she asked Santa for the American Girl Mars habitat which is $350 and we had to explain to her that Santa has to get things for all the kids in the world and he has a budget. She understood that $350 was a very large number... which is why she asked Santa for it because she told him that it was too big of a number for mom and dad to spend. Plus even if Santa wanted to buy it... its been sold out and discontinued for months.
But back to today... I told Jillian that Joss is close to $100 and her eyes got huge. She said she didn't know it was that much and then she got tears in her eyes... and asked if we could get her a picture of Joss to hang up. I told her it was ok that mommy and daddy still had not talked about Joss yet so she was not a yes or a no so it was not worth crying about today, that she needed to give us time to have a conversation and then we could have feelings about it... she responded that she no longer wanted us to buy Joss for her and was really ok with just a picture... because she wanted us to use the expensive money to keep her alive. Tears started flowing down my face. We have never told her how much taking care of her costs and we try never to rest the money part of it all on her shoulders... that is too much for her to carry at 7... I just wanted her to think about the value of toys when I started this conversation and about using money wisely and talking about your money use... I never thought it would go into a healthcare spending conversation. My heart was gutted. I gave her a huge hug and told her that her job is to be a little girl and mommy and daddy's job is to worry about the money and that we will always do whatever we need to do to keep her alive. She said ok and went to playing and I left the room and sobbed.... DAM YOU US HEALTHCARE SYSTEM!
We are the "lucky" ones in this system. Our kids have private insurance from Brent's work which is decent coverage and they have Katie Beckett in one of the best Katie Beckett states, they are well insured. Are there pieces that still fall on us, yes. Are there pieces of things that are needed for their care that don't fall under insurance, yes. But overall we are SO fortunate because of the state that we live in. And we are SO fortunate to have our community. The times people have stepped in for us. The times people have loved us. The times God has literally put the check we needed in our laps at the moment we needed it most. The cards of encouragement. The times God has had to shut my suborn self dependent self down and told me He has this. The days when we got a medical bill one day and the next got a check in from an extra job Brent picked up that covered it... has every bill or thing been that way... no, there have been times when it has been "don't spend anything until the paycheck clears" but there has also been moments of awe and wonder.
But our system is broken if my 7 year old knows it is broken. The reality is that this will fall on her back someday as an adult. What that all will look like is so up in the air. I am thankful for the families who have gone before us and worked to help pave paths for us, but what 10 years looks like from now I am very unsure... but it kills me to think that she will have to hold the weight of the cost of staying alive in our system because our system is broken... it works for the few and the corporations. Everyone has the right to life... and yes for my kids that might cost more then for yours... but if we truly believe that everyone has value that we take those costs as part of being a society. I'm not even advocating for or against any specific political plan here... I am advocating for a social ideology that says all people has value, and what does life look like when we truly believe that... because I think the world would change if we really did... currently its only lip service.
Don't worry about Jillian getting the doll... I had forgotten she had gotten some birthday money in the craziness of December and I had put it in a safe place during the crazy and had forgotten about it so she likely has part of the money she need to buy the doll and throughout the year I am sure she will earn more money. Brent and I still have not talked about her and the doll (other then this sad story) because talking about buying a doll was not at the top of our list today of things we need to make choices about. Don't feel bad for Jillian for not having the doll, she is fine, but what I learned about her brain and what it thinks about money today is much larger then if she does or does not have a doll. She is ok, she went on with the rest of the day like this conversation never happened and had a great time. This did give us clues as her parents though of some thoughtfulness we need to have around money conversations with her. You can't see into your kid's brain until they tell you... today she told us... now we move forward with that information.
Now its time to cuddle up with my freshly bathed kids (with a glitter bomb they got for Christmas, it was a big night here!) and watch Full House!
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| Watching Bear in the Big Blue House |
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| Building the Playmobil Pharmacy |
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| Doing the hair of her doll... man Brent's grandma would have loved this... Brent's grandpa go her this salon chair a few years ago and I love watching her do doll hair just her her Great Grandma Jill doing so many people's hair |
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| building with daddy |
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