Thursday, April 16, 2015

Taking steps...

I had the awesome privileged of helping with a women's gathering this past weekend called the IF gathering. It was such an amazing time, if you ever have the opportunity to go to one, please please do and check it out here! I've been mulling over all the wonderful messages I heard this past week. 

I was especially thinking about them today as I was on a fun walk with my kiddos -- well I say it was fun now that's it's over, but during the walk I came upon several hills, one large one in particular. As usual, I began to think (or rather gasp for air) "ughhhhhhh I wish I was at the top of this hill. Done climbing and able to look back at what I just did." Of course this is true because pushing a stroller with one 20 lb and one 30 lb kid is challenging for me lol! BUT I couldn't help but see the blatantly obvious analogy to my life right now-- and everyone's I think....
I so often say to Jeremy that I wish we were at the point in this situation with our daughter's health where we could finally look back and see how it grew us, or remembering God's help and faithfulness during that time, anything to be past this trial--I'm done climbing I want to be at the top looking back! 
Looking at the top of the hill this morning I even thought "I can't, I'm too tired, I should figure out a different way back home. It's too steep I'll never make it up." But looking at the step in front of me, it wasn't that steep, I could take that step. And then I could take another, and another. 
I know this is no new analogy or way of thinking, but it really hits home for me today. Looking at the "task" ahead I really do feel often that I can't do it, it will be too hard, how will I manage......but I CAN take the step one at a time. 


Even just tomorrow......thinking about the day as a whole makes my anxiety rise. What if they do find something wrong in her brain? What if we find no answer again? What if she has a reaction to the anesthesia this time? What will the next steps be if ANY?! The day seems like too much because it is too much for me. I even catch myself thinking "I've done this 5 times before we CAN DO THIS" ya know, as if some sort of mantra in my head will help. But the reality again is that I can't. I need Jesus to help take each step in front of me. I can't handle looking at the top of that hill it just seems too high. So I can get her up and get through the morning without food or water, I can help her get through sedation, out of sedation, the long drive home and through whatever news we hear.
He can and I know he will faithfully help me with each step. 




One of the speakers this weekend talked a lot about how a racer would never quit on the last and final lap right?! For us we can't see the top of the hill with the mountains in our life. We don't know if we are 3 steps away or 50. But put your foot in and step out faith. 
And for us the "top of this mountain" might not even be a cure or solution for her but that we will see the blessing of this trail. I think we often think that the mountain is always a trial and being done with that "trial" is the top -- but I strongly argue that's not it. Because of course there's a new hill or mountain to face and it's about how you decide to go up. Alone, mustering up all your strength and feeling drained, tired, and done. Or with full understanding that Christ is who walking you up each step, supplying for your needs and tending to your heart so even in the midst of the climb you can feel refreshed and full of life. 
So whatever mountain you have in front of you that just seems too big, too high, too much please think about all this........I know you're tired, but look at that step in front of you? Can you ask him to help you take that one? Focus on that step and do it well. Whether it's going to that job and dealing with rude people all day, handling a medical issue, a family trauma or wiping poop and puke off yourself day in and day out, whatever it is. Continue to take the step. Not because YOU can, but because God is big! And he can and will walk with you. 

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Tuesday, April 7, 2015

Juliana update!

Just fillin you all in with where we are with Jules. (As always thank you to everyone for asking, sending cards, prayers, etc you are all amazing!)



Her long awaited appointment at Stanford is NEXT Friday the 17th! We have waited 3.5 months for this one! It going to be a long day though. We are very very thankful they will be able to do multiple tests under one sedation -- which is so nice since this is already her 6th time being sedated and every time I hate it. They will do a brain and spine MRI, then wheel her down the hall and do a nerve conduction test and some kind of muscle test (are you impressed with my medical verbiage?) and then a blood draw to check for a metabolic disorder.

One of the first BIG prayer requests we ask for is that she would stay healthy. If she has even a little runny nose or cough they won't do the sedation.....and we would lose that appointment and probably not get one for another month or longer again! SO please pray she stays healthy! We are pretty much staying home all next week :( I may go crazy since I hate being home and away from people for more than a day lol but it's worth it. I can't wait another 3 months for this appointment! 

We are as usual not even sure what we want these tests to show. Normal results are good but give us no answers and the mystery continues. So we do want them to find the answer we just want it to be fixable! And then for the treatment to work and her hiccups to stop! So it's tricky! We are both feeling like the nerve test will be very telling since this seems to all be related to some kind of nerve issue.

In the meantime she is still on her diet (no soy, wheat/gluten, eggs, diary, nuts or seafood) and GI medicine and she is also on an anti-seizure medicine 3 times a day to try and stop the hiccups. No luck there BUT they have gone longer stretches between ! 

Along the way we are so grateful that she is happy, growing, and the hiccups and spasms have been manageable (but still incredibly frustrating and hard to watch when they go all night and day). 

We are so thankful for you all that have come around us and prayed for her! Please keep it up! 

It's hard not to let my mind go to places like "oh they might find the answer and FIX it all and this will be behind us!" because I don't think that's really a reality. But it's a nice dream lol! She is a gift and we know God has her in his complete care........really. 




Thank you!!! 

P.S. If you happen to see us next week running and errand or if you want to come by please make sure your kids are healthy, hate to be that person! But this week it's important!!!!  

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