Today was a beautiful day. It was a day of miracles--not for little Jordan but because of him. Today four little children got out of bed and were more thoughtful to one another. Today my wife and I grasped one another's hands and felt a deeper sense of love and gratitude for one another than we have ever felt before. Today family and friends connected from across the globe through the internet to offer love and support. Today close friends and perfect strangers sent thank you notes for the light Jordan's story has been in their lives. Today was a beautiful day.
At the start of his life almost 8 months ago, we knew little Jordan Paul Janeway would make a difference in our life. What we didn't know is how significant that difference would be and how widely it would spread. We knew it would be a difficult road--but we had no idea how meaningful that road would be.
Throughout the day, we were peppered with news of Jordan's condition. A functioning left ventricle in his heart meant he no longer needed a heart medication; an improved chest x-ray meant his lungs were clearing up. A visit from a specialty respiratory team and later by the pulmonologist suggested there was nothing more to do for his lungs. A cranial ultrasound showed no major fluid leak on the brain. An increased potassium count introduced risk to his heart. A falling Ph level suggested his lungs were getting worse. Hemolyzed blood suggested his cells may be dying.
With so much information coming at us, we called a care conference and sat in a room with representatives from all of Jordan's care teams: immunology, transplant, ICU, nursing, social work, advanced care, nephrology (kidney doctor). One at at time these doctors outlined that Jordan had some signs of getting better and many indicators that his body is still very, very sick. They offered hope of improvement if Jordan's virus was getting under control.
An hour later, a smaller group of doctors called another conference to discuss the result of the virus count testing. They told us Jordan's virus count is up from 19 million to 28 million particles. They told us we need to prepare.
Yesterday as I took time to connect with Jordan and be ready to let him go, I thought I had stretched my heart just as far as it could go. Today, I watched his mother tell her baby she loved him and would miss him and I thought my heart would break. Then once again I felt peace fill the gap between what I hope for and what is; the balm of Gilead. And I held her hand as we sent the nurses out of the room and cried.
Today I sat with my wife and my 8 month old son and thanked God for our time together so far and for the joy it has brought to our lives. Today was a beautiful day.
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ReplyDeleteI lost my baby nephew 2 years ago at the age of 4 months to a liver disease called Biliary Atresia. There is never the right words in this situation to say so all I can offer is my prayers to your family and you precious little boy.
ReplyDeleteMy heart is so saddened for you guys. You are both so inspiring with the faith and use of the atonement to heal and find peace. Thank you for letting us be part of your journey and for helping our testimonies increase. May God be with you!
ReplyDeleteAs I sit here in my office reading your blog, tears of compassion are running down my face. I cannot put into words my feelings for your family. Just know that we love you guys and are constantly in our thoughts and prayers. May God bless your family with his loving comfort!
ReplyDeleteI know you don't know me but I know many of your friends and wanted you to know that I am praying for your sweet family.
ReplyDeleteI know Heidi mostly through Nina and Amy and bootcamp. Your blog has been so touching and I am so sorry that your family has had to go through this. But I want to say Thank you for sharing this. Your faith and love is so inspiring. It has helped me find God in all things. Thank you for this gift. May God's peace bless your family.
ReplyDeleteThank you, Ryan, for putting your beautiful feelings into words that help us all to really reevaluate our relationship with our sweet, loving Heavenly Father and to help us to look for his many tender mercies in our lives. As I read about the countless tender mercies and miracles that you are experiencing and how very real they are, I realize that not everyone would see this experience in this way.Thank you for recognizing the hand of the Lord in each and every experiences. It's so touching to realize that you, our sweet friends, are literally in the presence of angels. Thank you for sharing.
ReplyDeleteThank you all for your thoughts, faith, hope, and prayers. These are absolutely sustaining us and creating miracles in our lives.
ReplyDeleteWhat a beautiful example to me and to my roommates that I share this to. Sending prayers your way!
ReplyDeleteThere is another support foundation called the Miss Foundation website is http://www.missfoundation.org/ the specializes in supporting families in crisis through many channels. just wanted to pass this information to you.
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