Friday, June 14, 2019

It's been a rough week in our house with our daughter. For years her hiccups/spasms have remained somewhat the same and these past few weeks they've grown in intensity and frequency....which is never a comforting thing 😓 We feel lots of love from family and friends who have shared her video, called their doctors, sent us ideas and so much more. Thank you!


When walking through a reality that you wish wasn't yours, it can be easy to ask a lot of why questions. Why us, why her, why now and why not help us? It brings me a lot of comfort knowing I can ask my God these questions - scripture is full of his children crying, pleading and begging for help as they walk through a broken world and the pain that it brings. It's ok to be crying as you walk IN faith of what you know is true about God. When life is full of blessing and joy abounding we don't often ask God "Why me, why us, why now or why help us?" I'm guilty of believing at times that God owes me something and of course he doesn't. Not a healthy child, not a happy life, not success or well being. Everything He has given to me has been because of his great love and out of grace. If this seems "unfair" just think about good that is.......it's NOT dependent upon us to be good enough, be nice enough or do all the good things for others that will earn us anything. He gives freely.
Because He actually IS good.

It's unclear what is going on with Juliana still. The unknown is a great place for fear to take route and only the Holy Spirit can help me combat that fear. Her spasms look so much like a seizure that her GI doctors always feel like she has a secondary neurological condition going on aside from her EOE (esophagus autoimmune disease) but the neurology department also has thrown up their hands with no more ideas. We are looking at bigger places next - like UCLA, a major EOE clinic in Cincinnati, Etc. UCSF is going to do an EEG while she is symptomatic to check again for seizure activity while she's having these episodes. As she's grown older it's been more heartbreaking to hear her say how much they hurt and how much she wants them to stop, but overall she has a really good attitude about it all - she doesn't really know any other reality 😢 As I'm sure any parent can relate we would do literally anything to give her relief. I would give her my esophagus and take hers if I could. We pray that God would heal her and show the world of doctors that can't explain it how great he is. But as we wait on him we trust that he is a good and loving God who is right here with us.

It sounds like it's been a kicker of a week for a lot of people. If you're struggling with life being painful and even devastating I hope you feel God's love and mercy on your life and most of all his great love for you.

I really dug deep into Lamentations this week (ha!) And I love that even in true lament....there is HOPE for those who are in Christ Jesus.

Chapter 3

I have been deprived of peace;
    I have forgotten what prosperity is.
18 So I say, “My splendor is gone
    and all that I had hoped from the Lord.”
19 I remember my affliction and my wandering,
    the bitterness and the gall.
20 I well remember them,
    and my soul is downcast within me.
21 Yet this I call to mind
    and therefore I have hope:
22 Because of the Lord’s great love we are not consumed,
    for his compassions never fail.
23 They are new every morning;
    great is your faithfulness.
24 I say to myself, “The Lord is my portion;
    therefore I will wait for him.”
25 The Lord is good to those whose hope is in him,
    to the one who seeks him;
26 it is good to wait quietly
    for the salvation of the Lord.
27 It is good for a man to bear the yoke
    while he is young. 
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