Down in the valley…
Our story has turned and its been a hard few days. We were having such a great day when we last shared, and thought things were getting better. We thought that we’d get to hold our little girl every day until she was well enough to come home.
Then they put the art line back in the next day because breathing has become a challenge again and platelets are low. Which means we can’t hold her every night (at least for now), which is hard.
Then even harder… little Aurora had her MRI, and without getting into too much detail the news was “devastating” as the doctor put it. Throughout development the virus significantly impacted her brain in irreversible ways with some clear impacts on her future abilities.
To be honest, he future feels so unknown right now. With the medical findings they shared, our hearts feel broken and we are at a loss for words. We are grieving for her, for the loss of many specific normal functions in her future…. we desire more for her. There also are still so many unknowns day to day as she fights new challenges.
The reality that we are living in a broken world, where evil still exists is hitting hard right now and just makes us really angry and sad. I know Gods word says he won’t give us more than we can handle and that he works all bad and evil things out for good, but it’s hard to see it right now.
Our family is grateful for prayers….as we need Gods strength, we need his peace, his wisdom. We pray for the doctors and the nurses and pray for Rory. For her suffering, for her sweet strong heart, for her to feel our presence when we are with her and find peace and joy in that. I pray that our presence of being with her each evening makes a difference in her health.
It often feels there to isn’t much we can do, but we still look forward to seeing her every day, we stand by her side and rub her, and hold her tiny hand or foot around all the ivy's and ports, we sing to her, and pray for her. She’s still so strong, and we just pray she knows we are with her and for her through it all!
Our faith is challenged but not lost, we know we will survive this, as much as it hurts we know (in our minds more than feeling it In some moments) that there is good in the future ahead, it’s just really painful right now after months of praying and hoping, we wonder …when will the suffering and hardship be replace with joy, peace, and hope…
2 Corinthians 4 is a passage I am trying to cling to right now... telling us we are knocked down but not destroyed. To fix our gaze on the unseen. As the present troubles feel so heavy, but we know we must and we are trying.
One thing we do know is how thankful we are for Gods community. The support we have felt from family and friends sending meals and staying at our house late while Jed sleeps so we can visit Rory has been incredible. We are so grateful for the body of Christ and that though we suffer and we carry a heavy burden we are not doing it alone. Gods people and body is good and we are grateful for that.
Thank you for your love and encouragement and prayers as we continue to journey along this hard road.
2 Corinthians 4:1-18 NLT
“Therefore, since God in his mercy has given us this new way, we never give up. We reject all shameful deeds and underhanded methods. We don’t try to trick anyone or distort the word of God. We tell the truth before God, and all who are honest know this. If the Good News we preach is hidden behind a veil, it is hidden only from people who are perishing. Satan, who is the god of this world, has blinded the minds of those who don’t believe. They are unable to see the glorious light of the Good News. They don’t understand this message about the glory of Christ, who is the exact likeness of God. You see, we don’t go around preaching about ourselves. We preach that Jesus Christ is Lord, and we ourselves are your servants for Jesus’ sake. For God, who said, “Let there be light in the darkness,” has made this light shine in our hearts so we could know the glory of God that is seen in the face of Jesus Christ. We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves. We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. Through suffering, our bodies continue to share in the death of Jesus so that the life of Jesus may also be seen in our bodies. Yes, we live under constant danger of death because we serve Jesus, so that the life of Jesus will be evident in our dying bodies. So we live in the face of death, but this has resulted in eternal life for you. But we continue to preach because we have the same kind of faith the psalmist had when he said, “I believed in God, so I spoke.” We know that God, who raised the Lord Jesus, will also raise us with Jesus and present us to himself together with you. All of this is for your benefit. And as God’s grace reaches more and more people, there will be great thanksgiving, and God will receive more and more glory. That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.”
Our updates may be a little slow-as words and energy towards updating has been hard as we focus in on the now and meeting our girl where she’s at with her daily changing needs and situation…so thanks for giving us space as you pray for and with us..for our sweet Rory Rose!
