The Start of it All…Shore Days
March 29, 2019 was the beginning of our families disability journey. That day we received our son, Oliver’s, diagnosis of severe congenital hydrocephalus. Just five days later, Jamie wrote a blog post called “Shore Days” that summed up all that we were thinking and feeling during that heartbreaking and confusing time. Below is the blog post that started it all when thinking through our vision for Shore Days. Our prayer is that you too will experience “Shore Days” as often as possible in your own disability journey, and we would love to walk alongside you as you navigate it all.
April 5, 2019
“O Lord God of hosts, who is mighty as you are, O Lord, with your faithfulness all around you? You rule the raging of the sea, when its waves rise, you still them.” Psalm 89:8-9
Tomorrow will mark one week since we found out the news that would alter our lives forever. And in one week, I have experienced more raging waves than ever before in my life. Waves of grief, waves of heartache, waves of agony and despair. But He promises to still them, and His promises ring true.
The Lord keeps placing this very real image in my mind…of us swept out to sea…waves raging all around us, barely able to hold our heads up in the wake. The water is crashing down, filling our lungs, stinging our eyes, muffling all cries for help. And just when we feel like the weight of the water will drag us deep into the black, icy depths, a new set of waves come. They roll our aching and tired and weary bodies onto shore, and there we lay. We’re still soaking wet, coughing up acrid salt water out of our lungs, but we are safe. We feel the sun shining down on our water-logged skin, and feel the gentle rustling of breeze start to dry us. The Lord has given us rest, he has given us rest on the shore. Rest enough to carry us through the next set of waves that will pull our weary bodies back out…into the heartbreak and the pain. He does not promise that we will not feel pain…quite the opposite. He promises that we most certainly will. But he also promises to never leave us in it. He promises to sweep us back onto the shore, to breathe life and light back into our lungs and pour hope and peace over our souls.
This has been the theme of the last week of our lives…a week that has felt like 10 years in many ways. I have started referring to days like yesterday as “wave” days…excruciating, heart wrenching, crying out for our baby boy, dreaming of a normal life with him, not able to catch our breath in the hurt of it all. And days like today, “shore” days. When we can breathe, laugh, find joy in small things…we are still wet with suffering, but the Lord is tending to the wounds the waves have left. Praise you Jesus for days with you on the shore.
Tomorrow we find out the results of our chromosomal blood test from last Friday. On one hand, this test could be life altering all over again…on the other hand, this test will just leave us in the same place of wondering and waiting. If the test comes back positive for chromosomal abnormalities, we will know the sure future of our Oliver Luke. A chromosomal abnormality will explain the excess fluid on Oliver’s brain and give us assurance that his life on this earth will last minutes, maybe hours…and he will go be in the arms of Jesus very soon after I give birth. There is comfort in that, in the sure knowledge of what we face. Of course, there is additional heartbreak as well…in the eradication of the small percentage that Oliver could survive. If the test is negative, that will leave us in the same place…more questions, and I will go in next week for an amniocentesis. They will draw amniotic fluid and test for all genetic markers, giving us 100% accuracy of whether we are facing a genetic problem or not. If we are not, answers may or may not come about what the future holds for Oliver, but the reality of our situation will stay the same…Oliver’s case is severe and his chances of survival are slim.
What we still believe…the Lord is capable of ALL. Whether this test comes back positive or negative, the Lord could choose to heal our boy fully. What we also believe…ultimate healing for Oliver is eternity with Jesus. We find solace and comfort in both. There is no outcome of this horrible situation where the Lord does not heal Oliver. Just as He has healed us on the cross, the work has been done…Oliver is healed no matter the outcome. We rest in that, we proclaim that, we fully trust our sovereign and good God in that!
Prayers for us in this time: that the Lord would continue to give us days on the shore, where we can breathe and celebrate the life of our boy while we are able. For comfort and peace in whatever these test results are tomorrow. For Oliver, for complete healing, for miracles and for mercy. Thank you for standing with us in this time…from far and wide, we feel covered by the power of the Holy Spirit through your prayers.