I feel like I have been on a multi year journey at looking at American culture and examining the things that are biblical and culture. I feel like in this country those often get confused. That is one of the problems of living in a "Christian society." I have looked at a lot of normal phrases... sayings I have heard all my life that suddenly stick out. One I realized I had let live in my heart and mind that I shouldn't have was "never pray for patience because God always teaches it to you the hard way." I don't believe God delights in us learning things the hard way... I most definitely do not agree with the Jonathan Edwards view of God dangling us like spiders... infact I would agree with the Brian Zahn view that it is one of the more dangerous sermons considering its historical significance. However I had let that view into my heart and it was massively effecting my prayer life because it shifted to not just praying for patience but that if I prayed for anything God was going to teach me the hard way. As a mom I never delight in my kids learning the hard way... that doesn't mean that they don't learn the hard way sometimes and it doesn't mean that I always prevent them from learning something the hard way after the easier way has been offered to them repeatedly... but I don't celebrate when my kid falls off the side of the chair when I have told them repeatedly not to climb on it like that... I still scoop them up in my arms as they cry. But this view of God teaching things the hard way filled my brain. It came as a road block when I went to pray. It was a stumbling block to my heart.
Over the past few months I have taken up reading. I have never been a huge reader. Its not really ever been my thing. Reading to me in school didn't come easy and unless it is a picture book I still have scars about reading in public. My past held a view over reading... but it all started with picking up Never Say No... which led to Wholly Jesus... which led to Sinners in the Hands of a Loving God... which led to A Farewell to Mars... which led to A Faith of Our Own... which led to Everyone, Always.... if you told me in January that I would have read this many books at this point in the year I would have laughed at you. But I see how these books have chipped at my heart. Then a couple of nights ago I was reading a blog post I wrote a few weeks back... "I am thankful that God blessed me to be their mom and I don't take that lightly. I am thankful that God granted me the longing of my heart." and it hit... I went to go highlight it like I do when I am in iBooks and then I realized I wrote those words lol! I then went searching the Bible and found Psalm 37:4 and it was like chains were freed. It hit me that God puts desires on our hearts for a reason and He doesn't delight in torturing us with them... He doesn't put them there to be mean, just like He doesn't give us things to pray for just so that He can teach it to us the hard way.
That night I went out and got canvas. I love to paint... I am not very good at it but it is very relaxing to me. We have several things I have painted around the house and each one of them have a meaning. There are some that the things going on in my life were very painful and the paintings are tucked away more (I painted on right after one of my students died, I can't look at that daily, its up in the spare room) and others are in times that were harder but have become beautiful... the most prominent painting in our house is of a tree. There is no leaves and there are lots of imperfections but I painted it as I prayed for my future children as we struggled getting pregnant. The tree hangs right behind our couch and it reminds me of the longing fulfilled. The other night I painted Psalm 37:4 (amplified translation) onto canvas as a reminder of what God has taught me over the last few months and the freeing of those chains. It doesn't mean that I no longer struggle with those thoughts creeping in... but I have the knowledge of the Word to stand on as a reminder that God delights in loving me.
As I was thinking about this today I was thinking about how that flows out into actions. Lydia has hit the age where she wants to be on the iPad all the time... in her perfect world the TV and the iPAd are both going to what she wants at the same time... however that is not good for her nor is it wise. I have been busy lately with LOTS of medical paperwork and sometimes it feels easier to just not fight her on things... she is a strong willed child who doesn't let things go easily. She was mad at me tonight about how I wouldn't let her have technology because she played iPad at church this morning and Jilli was mad at me because I was making her clean her play area... for a few seconds there I just wanted to give in to them both, sit down and zone out on facebook but then I paused and thought about it... I want to raise girls who have an impact on the world and there are life skills they need to know to do that... getting everything they want isn't going to get them there, doing everything for them isn't going to get them there, letting them cost though life just because they feel tired isn't going to get them there... so I stopped, I explained to Lydia that I was not getting her technology, and I handed her a baby doll... I then walked into Jilli's play area where she sat feeling overwhelmed by the mess and helped her come up with a plan of how we could work together to get the mess taken care of (she worked on cleaning the Barbies that were on the floor while sitting next to the bucket instead of walking around the play area). The easy thing in the here and now would to have let them both do what they wished... but in the long term that wouldn't have helped them. I see how often short term things feel so much better in the hear and now but in the long term they are not good. Jilli and I were talking about that today with her being tired and not wanting to clean. She said she had enough energy to sit on the couch but not enough to sit on the floor and clean 😏but we talked about how her muscles start out every day atrophied (thats what her muscle biopsy showed) and that it makes her want to rest more, but the worst thing for an atrophied muscle is to rest it all the time... running a marathon with an atrophied muscle is stupid but laying on the couch most of the time with one is equally not wise. We talked about how proud I was of her at the fashion show where her body was tired so she rested some until her turn but then she rocked it during her turn... that she did a good job of balance. She also did a good job of balance today when she asked to ride in the stroller at church instead of her wheelchair because her body was tired from all we did yesterday but she also worked hard at zoo class and the park yesterday. Yesterday she showed to me again how good she is getting at using her wheelchair while going down the ramps. When we got her wheelchair there was a bit of debate of if we should go with an electric or a manual with smart drive and her neuromuscular doctor said it was kind of a toss up but he would rather see her go with the manual for now to not give up on building every bit of strength we can but to have the smart drive as an option too. For things like the park we don't use the smart drive, there are too many kids running around. I will admit after she got the wheelchair there have been times I wondered if we made the right choice... the smart drive has not been as easy as I would have liked and a manual takes work to use, but I was so proud of her hard work yesterday and was thankful for our choice to try to foster all she can do. Life with the girls is a balance of putting just the right amount of supports in place but not putting too many in because too many could be dangerous.
I want to have these conversations with her now because as a person with several rare disorders I get how much bodies can feel yucky but how learning balance is a key and I want to pass that on because learning that for her is going to be a key to being a person of influence because while social media has its advantages there is so much to life outside of that world and I want her impact of loving others to stretch far beyond a computer screen. But the conversation reminded me that I don't ever set out to have Jilli work on things to be mean to her... we work on her stamina because I love her and I know she will never be able to be a Doctor and nurse on Tuesdays, Teacher on Wednesdays, Astronaut on Thursday, RMH manager on Saturdays and a art and music therapist on Sundays (yes that is Jillian's real carrier goals lol, and she talks about her plans for schooling of how she is going to make it happen... she better start applying for scholarships now!). Whenever I ask her to do something all the way or work hard at something it is because I love her deeply and know that sitting all the time isn't going to get her to her dreams. It reminded me that I believe our heavenly father loves me so much more then I can ever love Jillian so if something feels hard it might me that He is making me work though something because He loves me enough to not want me to half do something, he delights in restoration and growth in Him. I know sometimes I learn stuff the hard way because despite warnings I choose the hard way, but God doesn't delight in that, just like I didn't delight tonight in Lydia learning over and over that if you get the oxygen tube stuck in the doll stroller wheel you can't move. I can look back at life and be thankful for the lessons I have learned and even though I sometimes am scared to learn new lessons (that didn't go away overnight) I am thankful that I have my faith in Him and that He loves me and wants the best for me and has put desires on my heart out of love.
Something I have heard Jon Foreman say multiple times in interviews is that is is a lot easier to believe that there is a God then that God loves you and I feel like what I have been learning recently really speaks to that. I believed that whole time that God existed... however that is different then knowing that He loves me and puts the desires on my heart for a reason. I remember in the early days when Jilli was little that I felt like I had often justify that there were medical needs going on and I longed for a diagnosis so that it was easier to explain to people and to feel justified but somewhere along the line my thinking switch to not needing justification and to knowing that the best thing for her was to do what we could in the here and now... that if we figured out a diagnosis but it did nothing to help her more and was only just a name on a piece of paper then it was just that... words on a page while we didn't help the here and now... so I joke now that we play whack a mole with symptoms now but the reality is that maybe that helps the girls more then some words on paper... If I spent all my time searching for an overarching diagnosis but didn't give them their meds today I would be failing them, even on days like this week when Jilli's tummy hurt with meds, but I would be failing her if I didn't give her all the meds her body needs... its like knowing there is a God... but not understanding He delights in me... then I reduce God to just a word on paper but I am effectively treating the needs.
So life has been a bit of a journey lately... but in reality it always should be.
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| My painting |
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| I am so thankful for all the hours we have worked to help her learn her wheelchair... all the tears in Target and therapy as she said it was too hard... to see her smile on her face yesterday while she was on this swing. |
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