The past few days have been crazy with me sitting and watching one tube after another being disconnected from Little. She went from having 14 pumps running at once to nothing at all over the course of four days. It’s astonishing. And now we have been discharged. I am overwhelmed with thoughts so I’m going to make a list …. I know the Bible says that Laughter is a good medicine but I would argue that making lists runs a close second!!
1—We took Little to the emergency room for the first time on February 24 and she was discharged, post transplant, five months and nine days later. Looking at the calendar, over 50% of those 5 months were spent IN the hospital. When it came time to be discharged this week I found myself battling between rejoicing and mourning. Little and I have been relating to many of the doctors and nurses consistently over these months and it is hard to think we won’t be seeing them regularly in the future. “C”, “M” and several other nurses are getting married this fall and it has been fun hearing about their plans and parties. “S” trains horses and a foal was born and weaned during our experience. “N” just dyed her hair and what was meant to be silver turned out green . . . I hate I won’t see how that turns out!!
It has been interesting to see how some things which may seem common-sensical to the un-traumatized mind have snuck up on me. Of course we were going to have to say goodbye to hospital staff but I didn’t really realize it until the time came. This seems to be one way the Lord “provided a way of escape” so that I can endure and not be “tempted beyond what I can bear.” When you are rejoicing over your daughter’s new heart you have less time to mourn over lost relationships … you still mourn but it’s tempered by the joy.
2—Little was discharged Thursday and when we walked out of the Cardiac Progressive Care Unit (CPCU) she said, “Look! I’m walking!! I’m not as wobbly anymore!” As we got out of the elevator on the first floor she exclaimed, “Here I am! I haven’t been on the first floor in YEARS! I mean AGES!” While we were waiting for Jeremy to bring the car around she quietly said to herself, “It is just so nice to be in the sunshine.” And then as we drove down the road she said, “I just love driving and looking out the window.”
3—Our friend Marlice is here for a few days. She made plans to come and help way back before we knew what would be happening at this stage of life and her visit has probably looked very different from what she anticipated. She spent one night at the hospital with Little so that we could be a the RMH with KB and Bubba. She has taken KB shopping and listened to KB talk and shopped for groceries and listened to KB talk. Marlice kept our kids for a couple of years in St. Louis and it has been a joy to see the lovely woman she has grown into; joy upon joy.
4—We are presently living at the Ronald McDonald House (RMH) but we have an apartment to move into next week. The cardiology department at Children’s was gifted one apartment on the backside of campus and it “just happens” to be coming available when we need it! The department reps met, discussed, and decided to offer it to us so that our family could all stay together when necessary. We didn’t even know this apartment existed and we are overwhelmed by how the Lord has provided for us once again. NOT surprised that He did…just blown away by how!
5—We left the hospital with twelve medications that Little has to take so that her body won’t reject Dwayne and won’t contract specific viruses, etc. Many of these will taper off over the next three months, but for now it is a bit overwhelming. Two of the meds (immune-suppressing) have to be given at the same time every day and night and I see a new watch with multiple alarms in my near/immediate future.
6—So many people have been so kind and generous to our family. From crazy socks to People magazines, to a stuffed Alaskan moose, a battery operated candle (perfect for the hospital), gift cards, lip balm and more. I shed tears with every package and wonder how my heart can feel so full at such a time as this.
7—School supply shopping is looking a bit different for us this year and I am sad about missing out! KB’s teacher is buying all their supplies and we are just writing her a check and Little won’t be going to school for another couple of months and she uses an adjusted list anyway. Bubba’s supplies are being provided by the mentoring program he is a part of. WHAT??? So I went out and bought three $.25 one-subject notebooks and new “potty post-its” just because I could. #iloveschoolsupplies
I’ll stop here for now. I just don’t want to forget even the littlest thing during this crazy time in our lives … like how I am typing in the dark because I am sharing one room with my daughter who falls asleep by 8:30 PM! These entries are my journal, but even more, my own personal Ebenezer! Cue lyrics:
Come, Thou Fount of Every Blessing
Come, Thou fount of every blessing,
Tune my heart to sing Thy grace;
Streams of mercy, never-ceasing,
Call for songs of loudest praise.
Teach me some melodious sonnet
Sung by flaming tongues above
Praise the mount, I’m fixed upon it
Mount of Thy redeeming love.
Here I raise my Ebenezer,
Hither by Thy help I’ve come;
And I hope, by Thy good pleasure,
Safely to arrive at home.
Jesus sought me when a stranger,
Wandering from the fold of God;
He, to rescue me from danger,
Interposed His precious blood.
Oh, to grace how great a debtor
Daily I’m constrained to be;
Let thy goodness like a fetter
Bind my wandering heart to Thee:
Prone to wander, Lord, I feel it;
Prone to leave the God I love.
Here’s my heart, oh, take and seal it,
Seal it for Thy courts above.
By: Robert Robinson, 1735-90
So great to hear that things are going well. Will continue to keep your family in my prayers:)
I am in awe. I love you dearly. I’m thrilled to be part of this journey and rejoice with you! Prayers will continue for you my friend!!
My faith has been stretched and strengthened as I have read through your experiences of God’s grace upon grace, His blessing upon blessings, His calm during the storms, and His detailed provision for your family. Thank you for sharing from your heart. May God continue to be glorified.
John 11:3-4 “So the sisters sent to him, saying, “Lord, he whom you love is ill.” 4 But when Jesus heard it he said, “This illness does not lead to death. It is for the glory of God, so that the Son of God may be glorified through it.”
Deeply grateful to God for his goodness and faithfulness! So happy for you all!
WHAT do you NEED? a simple question from your dads brother,a truthful simple answer would be appreciated
PRAISE THE LORD!
Please know you are in my daily prayers. You have given me the gift of prioritizing what is most important in my life. It all comes down to God’s love and wisdom. Faith and family are what are important. Sending love to Lily. Please tell her Mrs. Von Hollencant wait to see her and hear her joyous voice at Webber.