(These first seven blog posts were originally letters, written and emailed to our friends and family. I am including them here because they are a big part of telling our story.)
“‘For the mountains may depart and the hills be removed, but my steadfast love shall not depart from you, and my covenant of peace shall not be removed,’ says the Lord, who has compassion on you.” Isaiah 54:10
Dear Friends,
We thank you for your continued love and support and prayers on our behalf. We are finding that at the hardest times when we don’t have the words to pray, we simply ask God to reveal Himself to us. He has been so gracious.
We are grateful to have more answers to our questions, though the answers we now have point to an outcome that we would not choose. Ryan and I (and Rebecca) met yesterday with the Genetic Counselor at Vanderbilt for the results of the tests on Evie’s chromosomes. Evie has been diagnosed with 100% Trisomy 9. Very few babies with even a lower percentage of cells with trisomy 9 survive past the first trimester, and Evie and I are now at 23 weeks. The doctors have no explanation for us as to why our little girl is still with us. We don’t need one. She is so full of life right now – giving the doctors an extremely difficult time getting her to hold still for ultrasounds, and greeting everyone who puts their hand to her Mama’s belly to say hello. She is savoring life and is in no pain.
We are grateful for the answers we have, though there are still some looming uncertainties. Medically, the doctors expect that we will meet Evie very soon. However, because she has beaten such strong odds to be with us now, they also expect that there is no reason I couldn’t carry her to term. We know that God, in his infinite wisdom, will be gracious in giving us whatever time we need with her – knowing and believing that he has ordained her days and ours. Waiting is hard and uncertainty is painful. Because of her very serious condition, the doctors have explained to us that there is no medical treatment to offer to prolong Evie’s life, only to make her more comfortable if we are given time with her after her birth. We may have minutes or even hours with her, though we understand that there is no guarantee of even that.
These days are very difficult for our family, even for Oliver. He doesn’t understand everything that is going on, but it’s clear to us that he knows we are sad and that something is different. Looking ahead to four months with Evie is a blessing. Yet, four months of everyday being the day that we may embrace and also release our sweet girl is an overwhelming thought for us. We are immensely sad. We are also waking up, and putting one foot in front of the other, and most of all, trusting our sovereign Lord to lift us up and carry us. Friends, pray for us as we function and grieve alternately and sometimes simultaneously. Pray for us as we treasure our little “life of grace” while she is still so full of life. And praise the Lord with us as we rest in this knowledge: “For now we see ina mirror dimly, but then face to face. NowIknowinpart; then I shall know fully, evan as I have been fully known”. 1 Corinthains 13:12.
Thanks be to God.
Ryan, Raechel & Oliver
Your complete trust in the Lord is an inspiration.