Wednesday, March 5, 2014

Pray Daringly.

Sometimes, I don't know how to pray.

Can I ask for my wildest hope?

I asked my dad about this the other day and he told me a story. Several years ago, he was traveling with a friend whose wife was sick. They met some people who told this friend that they would pray for his wife to be healed by the time he and my dad returned home.

The friend said this: "If she is healed, I will praise God for that. But if she is not, I want you to know this: I will still praise God."

Sometimes we are Jairus. We fall to the feet of Jesus and a miracle happens. And sometimes we are Job. We walk through hard things and we are changed. Either way, it is as Job says, "I had heard rumors about You, but now my eyes have seen You" (Job 42:5)

Over the past month, Lee and I have been both Jairus and Job. We have heard "yes" and we have heard "no." With each answer, another chapter in Kate's story is written down for us to read.

In the past, I have been timid to pray for big things. Not because I don't think He can, but because I'm afraid He will say no.

But here's what I remembered about my God yesterday: He is Father.

He does not sit on a high mountain and demand more faith in return for favors. As David writes in Psalm 54, "God is my helper; the Lord is the sustainer of my life." He knows the depth of my longing, and He will help me with the tenderness of a caring Daddy.


So, I am learning to ask daringly. And trust that regardless of the answer, it is always good.

Here's what we are praying now. Will you pray boldly with us?

1. That Kate would be able to eat through her mouth. With a baby who has a tracheostomy, there is a greater risk of aspiration (getting milk into her lungs), and it is also harder for her to suck. Many babies who have tracheostomies also have G-tubes (a feeding tube in the tummy). The Occupational Therapist has worked with her a few times on using a bottle, and while it is difficult for her, she has not aspirated! So, we will keep working! Please pray that Kate continues to improve, and that she can come home safely without a G-tube.

2. That Kate would be able to someday use her hands, legs, and feet. She has stiffness in her joints that physical and occupational therapy are working to help. (And they have been doing an amazing job so far-- we are SO thankful for our PT/ OT team!) We have no idea how much she will improve over time, but please pray for Kate's future mobility.

3. That Kate's vocal cords would start working. This is a really hard one for me to ask, because it is a long shot. Sometimes, babies with bilateral vocal cord paralysis do spontaneously recover, but not in many cases. Also, we have no idea what is causing her vocal cord paralysis, so we have no idea if they can recover. Most likely, Kate will have her trach for a few years and then she will have some surgeries to try to create an airway in her trachea. But, we are asking boldly, and whether the answer is yes or no, we trust that God will use this part of Kate's story for something good.

4 comments:

  1. today a friend of mine was completely healed from excruciating pain by a text....if I do nothing, that just won't work, so Yes and Amen and God, be Glorified in her healing....and Thank You that You do exceedingly abundantly...

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  2. She's beautiful. I will be praying for her to eat through her mouth. Please if you ever have any questions or need any help with trach stuff I would gladly help.

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  3. Hi there, I do not know you but saw a link to this on my friend's Facebook page and had to read. Our oldest daughter was born at 25 weeks weighing one pound and while she did not have a trach, she was on oxygen for a year-4 months in the hospital, the rest at home. We, too, worried about all of the things you are…the bottle (it's so hard, especially with the vocal cord issues, which we still have). Make sure you are thickening all liquids she is being given. Also, with the movement. Years of OT and PT have blessed us with a strong, happy 7 year old. I would be so happy to be in touch with you if you have any questions. We learned a lot during that time. And, by the way, are in the process of having a procedure to better our daughter's vocal cords. She has paresis on the left side. My email is katie_quinn2003@yahoo.com. God Bless. xxo, Katie

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  4. Hi, My friend Andy posted this. I felt led to post and share. Of course, I am praying for Kate now that I know about her. We've walked through a similar process, but also significantly different, with our younger son, Weston. He is now 19 months with low tone, a feeding tube secondary to failure to thrive from the low tone, global developmental delays. He's had 4 operations, I think, in the past year. Genetic testing results are outstanding-drawn in Nov and we'll get results in April. MRI brain abnormal. We've run the gamut of hope and despair, Jairus and Job. I identify more with Job, truthfully. Yet, through all of the challenges in the past year plus, we have asked God to show us His glory. It's always in the little things. It's now, 'thank you for his joy and the fact that he points at my coffee cup' rather than, "Lord, he's 19 months and I think he should be talking, will you make him overnight?' The faithfulness of caring for your child daily through feedings, whether orally or through the Gtube, takes supernatural strength. There is God's glory in that. I fully believe that Weston will walk within the next few months and I'll delight in the process until then. I pray that Kate's muscles strengthen such that she can swallow and that she will sing the songs of heaven more beautifully than anyone has ever heard before. So, I pray for her today and for what will be. Thank you for sharing. Love and hugs to you. if you want, I just started my own blog. betweenbonbons.wordpress.com

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