"My daughter might have a rare bone disease," is what I'm having to say a lot lately. Kayli was complaining of pain near her hips and started walking with a weird limp, and recently during her pre-school's undo-kai (sports festival) practice she wasn't able to finish the relay race because of pain.
"It's just growing pains" we thought, we hoped. But it wasn't.
The x-ray showed that the top part of her femur (the big thigh bone connected to the hip) looked really bad - the doctor said it looks like could be Perthes Disease.
What is Perthes Disease?!?! I've never even heard of it before, have you?
It's a rare childhood bone "disease." (Click HERE if you want to learn about what it is.)
More testing was needed.
The MRI confirmed the damaged femur and also showed water build up around the bone.
It does seem as if it really could be Perthes Disease, but we don't know yet.
We need to take her to her orthopedic doctor tomorrow for analyzing the data and to get referred to a specialist.
We need to be patient to really pinpoint what's going on. We all know how time seems to drag in these situations. The uncertainty sucks, doesn't it.
It's very easy to worry, panic, or just get negative.
It's very easy to be sad for my child, not being able to do anything to heal her.
It's very easy to think about the worse-case scenario and how hard it will be for her, and the big adjustments that will need to be made to our lives because of it.
It's very easy to focus on all the other difficulties in our lives as Kayli's situation makes us more sensitive to everything else.
It is very easy to be overwhelmed.
It's very easy to be broken.
BUT...I have a relationship with Jesus, and He loves me so much that He died for me.
He cares for me, my family, my daughter(s).
He is the one who holds all things together - even our hearts and our sanity.
I'm not going to pretend everything is fine and that I'm not saddened by everything that is going on. Sometimes I struggle to keep it together when talking to my Kayli or my wife. But I'm also NOT going to pretend that during these times Jesus disappears and leaves us abandoned, no he doesn't. I'm not going to pretend that because of what's happening that He is less praiseworthy, because He is always worthy of praise. I'm also not going to pretend that there is nothing to be thankful for, because the list is endless. Jesus is as close to me as the first day He came into my life.
In the times of struggle, we need to make a choice to count our blessings and remember that Jesus is faithful and that nothing is for nothing.
Some of us have been taught to deny our emotions and feelings of uncertainty, to just think positively; but I say that we need to recognize and understand our emotions and feelings because they are a good indicator of how you are or are not trusting in Jesus. We need to see things through the light of God's love and grace, to pray and hope for the best, to be thankful at all times, and to pray like God really listens to us and takes us seriously. We need to remember the faithfulness of Jesus and all that He has done to prove His love for us.
Keep being realistic and having faith in balance! There are practical things we need to do, and of them is definitely prayer. We mustn't be ignorant to reality, but we also must trust in God who is sovereign over it. I envision this tension like a rubber band being pulled in two different directions. On one side is struggle, and on the other side is faith. Sometimes the tension is so great you feel like you're about to snap. Then we refocus on the Gospel, and the balance returns.
I know that a lot of people won't make this kind of thing public especially when we don't know the exact cause of the symptoms, but I write this for all of those who love us and are praying for us. We covet your prayer and support as we live this crazy life! I also write this for those who are also struggling to keep a healthy tension between faith and struggle I just want people to know that being a pastor doesn't exempt us from the hardships of life, but it guarantees it!
Please pray for Kayli's healing and restoration.
Pray for Tomoko and I to be wise, strong, thankful, and peaceful as we figure out everything out.
Pray for the doctors to properly diagnose her condition and make a plan to get her healthy again.
Pray for our family.
Pray for our church.
This is the last time I will be writing about this until we figure everything out, at which time I will update you all. Thank you for all the love and support. God bless you all.
Much love and aloha,
Justin
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