2nd Birthday

It really is hard to believe it has been two years since Jordan was born. We certainly miss that boy and are excited to be with him again in the eternities.  Here on earth, I think we miss him for what could have been and that gap doesn't really go away.  I am sure Jordan, with an eternal perspective now, doesn't have to miss us in the same way; but I wonder if he is able to feel how much we love him.

Today we went to the cemetery with balloons and ate lunch by Jordan's grave. It was a perfect, sunny day, and we wrote notes to Jordan and tied them to the balloons and let them go.  Michael reminded us they would come down somewhere and become litter (sorry), but everyone seemed to feel more connected to Jordan as we watched those notes reach higher and higher and ultimately disappear.  Aaron wanted to know when they reach heaven and I told him they arrived as soon as we wrote them.

With all the heartache that comes with losing a brother and a son, the clarity that this life is about loving and caring for others becomes more clear every day. No income or opportunity or accomplishment can surpass the value of truly loving others. And when everything else begins to fade, as it all will, all that's left is that love.

I am working still to slow down and breath and reconnect each day with the fact that personal character and love of others are what allow me to spend an eternity with Jordan.

Happy 2nd Birthday little guy.  See you soon.

Joy

Our family lost a friend this week; someone we had known when we first came to the state.  It had been many years since we were around her but I remember how kind she and her whole family were.

There isn't a way to truly express what life is worth.  The joy we feel in the time we spend with family and friends is a small reminder of this worth in the same way light each day reminds us there is a sun.  We hope each day is a discovery of even more joy and through this, we know just how valuable we are.

The Tunnel

There is a light which can be seen only at the end of a dark, and sometimes painful tunnel.  It may have been there always, but is not visible without the contrast the tunnel provides.  It is hope, which takes shape and true meaning only in the midst of sadness; it is love, which takes its most significant form and true purpose in the midst of loss; it is peace, which pulls us forward from a distance through turmoil and war.  And it is birth and rebirth, which come as we and those who love us most go through the pains of physical and emotional suffering to deliver something new and perfect and wonderful. 

I recently heard a mother who spoke of going through excruciating labor for 30 hours and how, while she had planned on an entirely natural birth, over the course of the labor had been given every medication and hooked up to every machine available.  She recounted how she cried and screamed and thrashed about and then how, when her newborn child was placed in her lap she felt…peace.  The tunnel of darkness and trial and sadness and suffering was gone, having become instead a foundation for the perfect light that is the face and form of a newborn child. 

As I struggle with what has been a year of loss for not only my family but many of those I am close to and care about, I am reminded that this life is that tunnel.  Each of us wades through the daily muck—through the loss of relationships, jobs, and even loved ones until suddenly—not in spite of, but because of the pain—we emerge reborn.  All that we have suffered has taught us that we can be something more; something new, and perfect, and worth fighting for.

As a foundation for light, the tunnel serves as a gift, and the darkness is necessary to see the light that is present before us; and to watch it grow brighter and brighter until the Perfect Day.  

Oregon SCID testing

Heidi and I were invited to attend a meeting with the Oregon State Public Health Lab and its director, Michael Skeels.  We listened to the lab director, and an advisory council of parent and physician advocates discuss the merits of SCID testing, and were then asked to share our story before a vote to add SCID to the newborn screening panel was taken.  This is one of the last political steps prior to getting the testing started.

In sharing our story, Heidi brought a picture of Jordan and discussed how his life meant something and could have been prolonged with SCID as part of newborn screening.  As always with Heidi, it was heartfelt and moving.  I added my few thoughts that we, as humans, spend millions and billions of dollars working to make things safer.  We study and spend and study and spend each year to make cars and planes and boats safer, to protect climbers on a mountain, and sports players in their various sports.  Yet when it comes to newborn screening for SCID and spending just a few hundred thousand dollars a year in Oregon, we wonder if we should spend it.  Yet while few survive commercial plane crashes despite the millions spent to add safety gear to planes, 80-90% or more of children where SCID is identified and treated with a bone marrow transplant in the first 3 months of life, will survive--and many will live a full, normal, healthy life.  How is spending for an 80-90% chance to save a child even a question?

Someone might say that one child isn't worth saving, but of course then we have to consider what one person has accomplished.  How many individuals have made a difference in your life and in the world?  How do we know that the children saved from newborn screening won't make a significant difference?  Who IS worth investing in?

Fortunately with SCID, this screening will happen.  It not only makes good moral sense, it makes good financial sense for the state since it saves them money on hospital bills for the uninsured.  I am grateful to be a part of seeing this happen and to, as part of this initiative, be part of a parental support group for other families with SCID babies.  Everyone needs someone to talk to and to help them see their way forward.  I am so grateful for all those "someones" who were there for me and for my family.