I wrote a few weeks ago about feeling like I could see the spring and as I sat in church this morning it started to feel like maybe spring has come... here in the midwest it feels rather literal as it was in the 60s today here in the beginning of June. I sat with a friend the other night talking about life, one of those amazing friends who has been with us through so many seasons, and was talking about how I feel we are headed into a different season then the last few months have been and while I don't really know what this season will look like, I am excited for it. I am looking forward to a little more rest then this season has been... we currently have three weeks at home between big appointments... we have a few small appointments like Lydia's 3yr well child , pt/speech and stuff along those lines but nothing big... July we jump back in the cardiology, tube changes, genetics and headache clinic... but until then we have some time of rest... which honestly feels a little strange.
I am a champ at filling a calendar! Every summer I print out a paper calendar and sit down and make a plan for how we are going to fill the summer... or I find we get to the end of the summer and still have a ton of wishes on our list of things we wanted to do but that we never got to the things that were most important to us... but if I am not careful I can cram our calendar full of good things but run ourselves ragged in the process. As the kids get older I am trying to work out this balance... Tomorrow is starting with a pajama day!
I am currently reading the book "Everything Happens for a Reason and Other Lies I Loved" by Kate Bowler and I am loving it. One of the things that is very true when you have a kid with visible medical needs is that people like to gift you with random cultural quotes that they often try to pass off as spiritual but really are not. Our church did a sermon series on some of these a while back (you can listen to those click here, go back to fall of 2016) and a friend and I were talking about some of those sayings the other night. I have had to wrestle through some of those sayings over the last few years because a lot of those things feel like good things to say to someone else but often when you receive them they feel less helpful and make you question things. I honestly think the reason most of these phrases is exist is because as a society we suck at sitting with people in the hard so we make flowery statements to make it sound like we care to cover up the fact that we are uncomfortable and do not have the social skills to be in these conversations because we are a "fine" society. This also is not just a millennial problem... someone didn't teach us these skills and that is because older generations from us have the same struggles... they might be displayed in different ways, but man the crazy things I have been told by my grandparent's generation are some of the craziest which tells me that us not just us young kids who don't have a grasp on this.
But one of those phrases I have had to wrestle with is that everything happens for a reason... I bet if you search this blog I have used that phrase before but I have done a lot of work around that phrase the past few years.
Over the last year I have done a lot of work around the words cure and healing... guess what... I am still learning and changing and I don't have that all sorted out yet and I might never, that might be one of those things that I sit in the tension of for a long time... and that is ok...
Here is what I see though... last May we spent the whole month waiting for Jilli to have a crash. Her body had all of the symptoms that a crash was eminent but it wasn't happening. I lost so much sleep waiting and watching her body do weird things. It felt like we lived the whole month in tension. She did have a crash last year but it wasn't until June... and between when the symptoms started and her body feel apart we lived in the tension.
Last May though God taught me SO many things. I felt like every day I was learning so many new things about God. What I also hold as true is that God was teaching me things in the mists however He was not sitting there causing pain to my child so I could learn... He was teaching me in the midst but that is very different theology.
Last June and July I felt God saying that He had big plans coming for us which felt scary and I spent a lot of time stressing over what that might be... what actually happened was in August I wrote a book... a book only a few eyes have seen. I remember last fall listening to a podcast where the person was talking about how they wrote a book and threw the whole thing out and started over... God wasn't asking that of me and I still got so angry at God for asking that person to do that, that I remember yelling at God in the car (probably not one of my classiest moments) but what God did ask me to do was pause the book... I am not sure why... I don't think most authors write an entire book in a month and then edit it part way and then do nothing with it... thats not the normal book writing process however I am really ok with it. My biggest thing when I felt God asking me to set the book down for now was that others would see me as a failure... it wasn't that I wasn't trusting God personally with it, I was ok, but I thought that if I set the book aside then people who knew about the book would see me as not finishing what I started and in our culture we have a big focus on finishing what you start. I really still think there is a reason why I wrote that book... and honestly I am ok if it was just because those words needed to come out of me... that it was a tool I used to wrestle with a lot of things... but it might also be birthed into something bigger then that at somepoint but what I want it to be open handed about it... to not be so worried about what other people think that I push it in a timing that is not correct.
But the other thing I see as I look back at the last year is the different situations that I have learned things in. I have wrestled with views around disabilities over the last year. It is easy to have views on disabilities when it does not directly effect your life... it is different when it is a part of your every day life and when your views on it dictate how you live your life. For years I thought it was bad to question or wrestle with things... but God has been breaking down those walls over the last few years to teach me that He is big enough to handle every emotion and question that I have and that He wants me to learn and grow and that He is the most patient teacher in the world (which sometimes is hard for me to get my heard around because I know being a patient teacher is something that I always want to be better at!)
I also spent a lot of this last year learning that God is not the accuser. I have wrestled with the word shame and social expectations. I have had to work on parsing out what God was saying about disabilities... what was society views... and what was not of God. Sometimes that feels very hard. There where times where I just wanted to stop working through it because the weight felt so heavy and it felt like God was unloving... but in that God reminded me that He is love.
But one of the things I am seeing as it feels like I am coming out of this season of hard wrestling with this (not that I am finished wrestling with it but that God loves His children enough to give rest), is that I can see that areas where I am thankful that God helped me to strengthen some of my beliefs before we walked through some things so I had more solid of a footing to stand on in the midst of some hard situations... it made it so I still questioned myself (because I question myself on everything!) but that I had a foundation to go back to... I had somewhere to land.
Even if in the moment some of the wrestling felt really hard... and even if the devil used it as a time to try to spread lies and attack... in the end I am so thankful for God's graciousness for being an amazing teacher... for teaching me more before I needed it so I was prepared. He provides.
There have been good an amazing moments in the mist of this last season... but overall it has felt hard... spiritually, emotionally, relationally, and physically. There are parts of this past season I wish I could change... ways I got in the way... ways I stunk at being the person I wish to be... ways I was too self focused... I am hoping that maybe in this season of calm I can balance a few of those things a little better but I know that I am called to be loving at all times, not just when life feels calm... how that love is displayed might look different in different seasons but it is one of those things that is always true.
One of the things I have learned over the last 6 years is that your circumstances do not need to look like the worldly view of good to still be good. There is good in the every day... there is God in the ever day... this season was the first time ever I asked God why he was letting something happen... but what I see now is that I still might not fully understand that situation and in several ways I am still longing for an immediate good but I know that even if I do not see that good that God has worked through even a hard situation to teach us more about Him... its not that I believe he caused the pain or that I think He ever delights in our pain but that He is always there with us (it is not out in podcast form yet but it should be out in the next few days, but the sermon at our church today talked a lot about this). God is a God of redemption and restoration.
I am ready for spring and summer... I did the kids swap of winter clothes for summer clothes on Friday and our AC was fix so we are physically ready for summer... but I think I am ready for a season of rest and recharge.
As an aside... one of the things I love about blogging is that I can go back and read posts from over the past 6 years and see my growth. I can see the things that I am wrestling with and hoe God has worked in so many situations. I can see the seasons in life.
Thank you to those of you who join me in the wrestle. Who are ok with the questions, the feelings, the emotions, the ups and downs... those who don't ask for this to just be rosy and sunshine and are ok with this being bigger then just health updates but for this to be a place where I can be a well rounded person... that never means that I share everything on here because that is never the case, but it does mean that I am a multi denominational person because all of this together makes me and I don't want to sell myself short enough to just be a special needs mom.
"Maybe God's way of providing doesn't look like the world's way"
"Maybe every problem doesn't need the world's view of a solution"
"Maybe God is going to work in the midst of this to do BIG things to change views and ideas that more align them with His kingdom"
"Maybe God is asking me to share what He is teaching me about disabilities to the people He has asked me to speak into"
I am also really gracious for God's kindness as we wrapped up our multi month adventure of more intense health stuff... our last appointment last week was with a doctor that has been very very involved in our case since Jillian was a baby. She has been with us through many ups and downs and is very practical in it all. She is also very good at having conversations about medical needs. She is good at asking questions and at making it feel like we all have equal weight in the conversation. She is good at asking my kids what they want and need. Jilli made a list of her current goals and she shared it with the doctor and she listened and we worked together to come up with a plan to help with the goals that this doctor worked with. This doctor answered my questions and we came up with plans for things. There was one test I came in wanting done now, after our conversation we all came to the agreement that waiting a couple of months was probably ok... but there is the big thing there... after conversation we agreed as a group... eventhough I didn't get what I was asking for when we started, I was not at all upset about the plan at the end because I felt like we had a plan and that my worries were heard and I trusted this doctor. I try to be a pretty reasonable person but a few situations in this season really had me questioning that, but I was so thankful for this steady voice to come in and remind me of what she has seen over the years and work with me as a team. I am thankful that God gave us that gift of an appointment before our rest... it makes it easier to rest and is so very kind. It reminded me about why we have some of these members on our team... history matters... conversation matters... being heard matters
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| I feel like this season has been a suitcase season... we have spent several months this year living out of suitcases and most of the time have unpacked to repack... and while there will still be suitcases and challenges in the season we are walking into, I am thankful for a few weeks of rest and I am thankful that God is a kind father who sees the need of rest |
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