I think with every significant event in life we have an opportunity to peel back at least one layer of our celestial cocoons; to feel and see and act differently--to more richly connect with ourselves, with others, and with God. Everything seems a little different after these events, because everything is.
Sitting by Jordan's bedside this morning, I find myself nearly overwhelmed by the miraculous that is often hidden in the routine. From waking up with my own healthy body, to the perfectness of the atmosphere and earth that makes life possible, to the gentle kindness of others. I don't pretend to know what will happen today but I know I will be more grateful for it.
For the first time in days, I am finally able to breath out. The 18 doctors, nurses, physicians assistants, and patient care team members that meet for rounds outside Jordan's room each morning explained that Jordan's numbers are all improving to pre-crash levels. His breathing is stable, his heart-rate is high but reasonable, his Ph balance is nearly where it should be. Even more incredibly, the enzyme numbers that indicate his liver function are below anything seen for the last month. Jordan is far from being healed, but today his body is winning.
Over the past 24 hours, one doctor after another walks into the room to look at Jordan, shakes his or her head, and says something to the effect of, "There is more at work than just Jordan here", or "We don't know how he could have pulled through." Even the transplant doctors smile as they watch Jordan lift his right arm to his forehead and back down again. Despite all the care to protect against contagion here, hope is spreading.
Not knowing quite what the Lord had in mind for Jordan has made the past days and months since his birth especially hard. We know Jordan is supposed to be here as a part of our family, and we certainly have spiritual moments when we feel strongly that he will be here for some time; but I have learned never to assume miracles have only one form and certainly never to try to dictate what that form should be. I have learned that faith has power not when I become good enough that the Lord will listen to me but when I am humble enough that I will listen to Him.
I am trying to listen so I know what to pray for. Like Jordan, I am trying to hear.
So many prayers are being offered for Jordan, Heidi, you and your family. May God's will be done.
ReplyDeleteI remember a while back my perceptiveness. I always was watching listening every second, counting every breath Baby N took, listening for birds, children laughing in the hall ways, listening to music. Every waking second I listend. Jordan much like my nephew is still calling his own destiny. He is truely a warrior much like my nephew was during his last 54 days.
ReplyDeleteHe has so many people on his side and I am sure more angels in Heaven too. We are all praying and sending our love. Your beautiful posts keep us going too. Thank you Heidi for your open heart and beautiful faith! Love you all!
ReplyDeleteI felt so much joy when I read this update. I know that Jordan, has a long way to go, but I can't help but feel God's love in this update. This little baby is so amazing. In my personal experience, the best things happen when we let God do His work!
ReplyDeleteBeautiful expression of testimony! Thank you for sharing this tender experience with us. Hope is alive!
ReplyDeleteI just became familiar with your blog. I wish to tell you how much I admire your strength and attitude. I know what you are going through. I have five children, in which two have SCID. Both have received transplant. We have spent many years at Primary Children's Hospital. We live in Utah. I have become great friends with many other SCID mothers. It's great to bounce different things off them (SCID mothers). I have learned a lot of helpful things. I just finally joined a worldwide SCID email group, which has been helpful too. Let me know if you want the info. Of course you might already have it. It sometimes helps to feel less rare in the world with such a rare disease.
ReplyDeleteI was happy to hear Jordan has improved. Any improvement in the ICU is Big News!
Your family will be in our prayers.
Lisy Fish
lisyfish@gmail.com
Thank you Lisy and we would love to get info on the SCID group; it has all been such a whirlwind so far we haven't had time really to reach out yet. And thank you for your comments as well.
DeleteYour posts bring tears every time. The Spirit comes through so profoundly, and I am blessed and uplifted by your perspective. Thank you for taking the time, in the middle of it all, to inspire all of us who have the privilege of reading your posts.
ReplyDeleteWhat a joy that Jordan has come so far in just one week! One week that feels like a year...
Love, Mom
I have you all on my mind, and in my heart and prayers at all times. Getting to know your beautiful family while caring for that precious baby Jordan truly made for some fun days. I feel blessed to have been welcomed into your home. Time spent with Jordan was certainly not viewed as a job, but a joy. I will never hear the word 'awesome' again without thinking of Aaron. And now we add bravery to Aaron's assets. I sure miss snuggling Jordan(all day).Except when somebody else got greedy and took him away from me. I miss the private piano recitals, and listening to your evening blessing before mealtime. Jordan-I was so proud of how quickly I oriented you to doing your own medical assessment. You learned to take your own temperature in record breaking time..way to go kiddo. So many of us are in total limbo waiting for posts. Thank you for including us in this struggle, and know you are all so loved. I wish I could be a tiny fraction as eloquent as you are Ryan. All I can say is that I hope and pray for peace in your hearts. Your kids have the best parents ever.
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