SCID Meeting

After a few weeks of phone tag, Heidi and I were finally able to meet up for dinner with the couple that has been the face of SCID awareness in Oregon over the past 4 years.  After losing their own child to the disease, this couple began speaking at events, including flying to Washington DC to testify in front of a congressional committee on the need for SCID screening as part of newborn screening nationally.  They were instrumental in getting SCID screening adopted nationally and are now pushing for implementation at a state level.  

It turns out Oregon is particularly important because Oregon screens for 5 states.  And since screening at birth increases a chance for survival by 40-90+%, it truly saves lives and families.

In speaking with on of the lead scientist-physicians at Seattle Children's about Oregon screening, we are told that Oregon is pending the Lab Director deciding on a lab kit to use for the tests. I understand it is a large volume of tests and the kit and related chemicals are important when it comes to process speed and chemical costs, but I am disappointed this "little" decision has taken more than a year.  This is particularly frustrating when having that screening in place a year ago could have saved Jordan's life. 

I am not going to question the reason for this outcome with Jordan, but I do want to make certain I do all I can to help other families avoid the same outcome.  Since so much has already been done in Oregon to push screening, it feels like all I can do is add my voice and try to be a part of events such as the Jordan 5K Memorial Run that bring greater awareness of this genetic disorder to the masses.  

Hopefully Heidi and I can reconnect with this couple again soon to continue planning ways to push for faster implementation of newborn SCID screening in Oregon and adoption of screening around the country--and to repay the steak dinner!  

On a final note, I am also humbled that this couple was willing and able to get involved in helping others so quickly after their son passed.  Unlike Jordan, their son did not have any other medical challenges so they were not aware of any issues until their son was sick and just couldn't seem to get better.  He lost a lot of weight, became medically fragile, and finally passed away shortly thereafter.  

Losing someone you love is never easy, but knowing Jordan had other challenges meant we knew he was medically fragile and this made his passing less of a shock. I had a chance to really say goodbye, which is a great blessing.  I am amazed by the strength of this couple and so many others who show super-human perseverance in the midst of incredible suffering, for the benefit of others.     

Jordan Janeway Memorial Run

We are approaching the first Jordan Janeway memorial run, which is raising awareness and money for Severe Combined Immunodeficiency (SCID) and infant screening.  I am so excited to be a part of this and grateful for the many people who have already been a part of putting this together. I am most impressed by the young gal who is running the event and has gotten sponsors, put together a race event page, a facebook page, fliers, contacted the city for approval, reached out to churches, figured out the insurance for the event, and much, much more. At 15, that is incredible!

I hope everyone will come and join us.  Online registration closes October 9th but you can register on race day for an additional $5 I believe, with all proceeds going to SCID awareness through the Jordan Janeway Memorial Trust.

To register or find out more, click the following:

http://funrunwalk.wix.com/friendsofjordan

https://www.facebook.com/FriendsofJordan5k

Great Week

Post from 8/29 but not published:

I spent the last week learning from wise people. Perhaps the most important lesson, and one I learn from parenting every day, is that I know absolutely nothing.  The next most important lesson is that this is okay as long as I want to know more.

I certainly do want to know and learn more.  As I listen to those who have greater light and knowledge than I have, it is inspiring to begin to see more of the picture of life, like a 3-d image emerging from within a sea of lines.

This gives me hope about more deeply understanding life's purpose and my role in it.  It is the path that leads to knowledge through faith.

One of the classes I attended was about the purpose and power of eternal families and the idea of becoming one in Christ.  While I have heard this many times, the whispering of the Spirit in this class was to do all I can to remember, feel, and show gratitude for the Atoning power that makes this oneness possible.  I often get distracted by the cares of daily life and forget that "Life" has little to do with what is all around me each day.

In the place of gratitude, I recognize that when I need peace and the storms of life appear to threaten to sink my "ship"; when I need comfort and hope to have the strength to move forward, I either go to my knees in prayer, or literally reach out to those I love--such as my wife. Somehow, both when I reach out for the Lord's hand, or for my wife's, I feel virtue pass to me and the healing power of love strengthen me.  I am forever grateful for a wife who carries that power and virtue and who is willing to give her strength to strengthen me. Certainly, that is part of the oneness and the healing Christ offers, which has been a great power through this loss.  

Broken?

I know my heart is broken from this loss; that is expected.  When I pass Jordan's crib and look down at the pictures of my wife and I holding him in our arms, tears of sadness well up and I find myself sighing deeply. These feelings are also no surprise to anyone who has experienced loss.  

What is a surprise to me is that I am able to continue to move forward from day to day so quickly; to compartmentalize the loss and interact with others as if nothing ever happened.  I return to my thoughts and these feelings of loss at appropriate times but I am bothered that I am able to get away from them at all. Somehow I want to be enveloped by it, to feel like Jordan is ALL that matters.  I want everyone around me to stop everything and just miss Jordan with me.  Otherwise, I am truly afraid that his memory will fade; that his light will grow more dim in the distance and that there will come a point that I will forget to look for it at all.  I don't want to believe that there is anything to do but miss him.

I recognize that both this sadness for my separation from Jordan and the ability to move forward from day to day are blessings from the Lord and I am grateful for each of them in turn; but I still wonder at times if the peace of Christ that passes all understanding means I will not need to mourn as deeply, or if I am simply staying too busy to truly mourn at all.