My honest answer? I am afraid it will be hard.
The past week has been a flurry of celebrations and disappointments. In short, we found a spot on her heart that, after running numerous tests, the doctors believe is a clot. Thankfully, we have ruled out some very dangerous possibilities regarding the spot, and we are moving forward in a positive direction. Also, they thought she might have caught a virus, so Kate was moved to isolation for a few days. Thankfully, she is doing fine, though we are grateful that our doctors are being so careful with our precious girl. Lastly, Kate is going to get a g-tube, probably sometime next week. She was moving forward slowly with her sucking coordination, but they did a swallow study (she swallowed contrast and radiology watched to see if the liquid went into her lungs or her tummy) and found that she was aspirating (some of the liquid went into her lungs). So, bottle feeds are off for now. In the meantime, we will practice non-nutritive sucking and do another swallow study when she is a little older. But, as soon as she recovers from g-tube surgery, we can take her home.
That word. That word eclipses everything. Everything I didn’t want. Everything I prayed against.
In the midst of last week’s sandstorm, a former student of mine sent me 1 Corinthians 16:13. It reads, “Be on your guard; stand firm in the faith; be courageous; be strong.”
And while I screamed “NO” to the things I didn’t like, my God gently reminded me of a lesson He taught me weeks ago: “Be strong and courageous for I am with you.”
Here is the miracle: my heart has changed. I’m starting to realize that this story isn’t about me. I am not the author; I am not even the main character. From my pen flows the story of our Kate, but these are not my words and I am not in control of the plot.
My sovereign God writes the story, and He imbibes me with a strength that I do not have by myself. I thought I would break if Kate had to get a g-tube; instead, my heart grew strong. I believe this is the first of many things that Kate will simply do on her own time and in her own way.
There is no doubt: the path we walk is much steeper than it was 5 weeks ago. And I am certain that at various points ahead we will have to dig in and scale the mountainside. But the view from where we stand is not sad. It is indescribably lovely.
You see: we get to take our Kate home soon. It may not be what we originally envisioned, but when is it ever what we originally envision? As this short chapter of her story comes to a close, I look back upon answered prayers: she is here, and she will come home.
-Pray that Kate's g-tube surgery would go well next week and that she would have a quick, easy recovery.
-Praise that Kate has made some great strides in regards to her mobility-- thanks to PT/OT, her knees are almost totally stretched out, and her ankles and hands have made great progress. We still have a long way to go, but we are seeing big improvements! Keep praying big prayers for Kate's future mobility.
-Keep praying big prayers for Kate's vocal cord paralysis. Pray that we would find just the right ENT for the future.
-Keep praying big prayers for Kate's ability to eat safely. Obviously, we have had a huge setback, but there is hope for the future.
-Pray for God to prepare Avery for Kate's coming home. Pray that she would understand how to be gentle with her baby sister and the amount of care that Kate will require.
-Pray for Lee and me as we finish up these last few weeks at the hospital. Pray for endurance and pray against discouragement.