Now that we have “moved in” the nurses got together to decorate Little’s IV pole. Imagine the spectacle we create as we walk through the lobby.
I have been thinking for days about the update I “need” to write about last week. I keep putting it off because it all sounds like complaining. I know, I know — every day can’t be easy, but God has been so present in every step of this journey and I just couldn’t write until I was able to write with that Truth in the foreground. I had just about given up and then today happened. One thing after another happened and what words echoed through my mind? James 4:6A, “But He gives more grace.”
Last week a hard taste of reality determined that we change the way we are counting our wait time. Technically we have been on the transplant list six weeks, but I had a conversation that made it obvious there was a need to adjust expectations. One of our doctors is on the national heart transplant board (or something like that) and I asked her to help me come up with a rote answer I could give when people ask how long we will be at Children’s. I mean, let’s be real – there is no way to predict when/if Little will get a heart! The One who holds the future is the One who knows these things, but that’s a lot to explain every time I am asked and people really just want a ballpark figure and not a theology lesson, right?
So, Dr. Melanie told me that the average time on the transplant list for a 1A is 2.5 months. I asked if that 2.5 months started when we went on the list in early June or when we transferred to 1A a few weeks ago; she said start counting from the change to 1A. The reality that we can plan for another two months at the hospital jolted me this time even though I have been saying those words for weeks. Maybe it was the seriousness with which she spoke and the fact that she didn’t try to sugar coat any portion of the conversation … either way my mind went spiraling and my emotions took a hit.
“But he gives more grace.” We had an inordinate amount of visitors last week. I had so much fun I forgot to take pictures with many of them! I actually called down the hall to get Hart to come back for a photo! Each visitor asked good questions and let me share, but each visitor also made me laugh so that my spiraling could take a break. Little also got a gazillion cheer cards (the volunteers think she must be famous) and it was music to my ears to hear her reading the promises friends quoted. So many Christ followers sharing with her that they are trusting Him to care for her. It was more than we deserved.
And then Little got sick. Each day we did a little physical activity and then I would watch her condition worsen as the hours passed. Finally, on Wednesday, she just plain got sick and couldn’t stop getting sick. The doctor ordered an echocardiogram and an EKG and they took blood to see the levels of her electrolytes. She finally just wore out and fell asleep.
It was at that moment that I was hit with another hard reality – a fact I had thought of before but jolted me this time in a new way. This might be “it!” Little might not get a heart and I might be sitting in this hospital room watching her die. She was throwing up because we exercised and her heart was so busy getting blood to other places it couldn’t pump enough blood for her stomach to work properly. There’s nothing we can really do about that but wait for things to slow down and the blood to be redirected. If she doesn’t get a new heart this will become more common place and that’ll be it. See Becky spiral.
“But He gives more grace.” This time grace was a weekend at home. Grace was given in a 6’3″ frame. I left the hospital on Friday and drove home in a tired fog but was greeted by my husband who let me emote and then reminded me of all the options that still remain between us and losing Little. Jeremy left for the hospital and then grace was given in the form of a church hymn sing! Then brunch with a dear friend who cried with me and laughed with me while we talked about the serious and the silly! Then grace was Appetizers and Oceans Eight with other sweet friends! And finally a quiet house with a queen size bed!
Then I went to church on Sunday and I sat by myself while my family is spread all over the states; I felt myself slipping. Then we sang “Before the Throne of God Above,” which I used to sing to Little every night as I rocked her before bed. I felt myself falling. And then my dear friend Steve announced that I had resigned from my job as Parish Administrator and proceeded to say so many kind things about me. One might think that was the Father giving more grace but I didn’t see it because I was spiraling.
I spiraled as I drove to the hospital in ridiculous traffic and through the rain! (Sidenote: We see so few storms out here. I tell my sister that Coloradoans driving in the rain resembles Alabamians driving in the snow.) I didn’t sleep through the night last night – every beep on the monitor setting me off. They weighed Little this AM and she had gained 2 kilos (4 pounds) since yesterday and I found myself incapable of gaining TRUE perspective.
“But He gives more grace.” Today his grace came in a phone call from my sister-in-law, Brooke. Turns out there is a camp going on in Birmingham that’s called “Created For A Purpose.” It’s at a church I used to attend and Brooke had called on a whim thinking the camp was next week and wanting to see if there was any room for KB. Turned out the camp has been full for months but Brooke’s phone rang back moments later and our friend Helen told her that there was room for one girl going into 5th grade and camp started today! What grade is KB going into? You guessed it, 5th! It seems one mom forgot she had signed her daughter up for camp and their family went out-of-town for the week. I just cried as Brooke told me that one day KB will be baking and one day she’ll be sewing and one day they’ll be painting… all while learning about the One who created them for a higher purpose.
AND THEN I got this picture in a text from my friend, Anne:
There’s the immediate joy of seeing my friend wearing a hair net *wink*, but the real joy was seeing her arm around our KB and knowing that this dear friend I have known since 7th grade(!) will be spending time with my daughter all week. And not only that, Anne’s twin brother, also a dear friend through high school, has a daughter who is actually KB’s counselor! For years I have told the Lord of my desire for my kids to be in Birmingham near family where they can have opportunities to learn about Him surrounded by the families of my friends. Isn’t that JUST what He has done here?
This is where I would normally wrap up this post. There are three examples of spiraling and three opposing paragraphs about His grace – it works. But, because He’s God, He chose to drive it all home today that “He gives MORE grace” and one more paragraph is necessary!
Little got a stack of mail today and was giddy opening a box, a manilla envelope, and a few letters. I was taken by the manilla envelope and its contents. It turned out to be a letter from my college friend, Rayanne. Click on the pics and read the letter and know that my tears started to flow as I read the first sentence of the second page. I was overwhelmed by the beauty of what Rayanne did and then even more overcome by the Truth that our God is the same yesterday, today, and forever. He made Himself known in 1993 and was faithful to His promises for a college senior with college senior concerns. He is present with this middle age mamma and will continue to be faithful to His promises. It may seem harder to believe because I have more concerns . . . but what do we know to be True? “He gives MORE grace.”
**Another expression of His grace is that friends have set up a GoFundMe page for us. We tried to use integrity to come up with an amount that represents actual items on a spread sheet. (Anyone who knows me knows I have an actual spreadsheet.) People keep asking what they can do and so I’ll include that link here.