Singing Christmas Tree

My family and I were invited to attend an event in Portland at the Keller Auditorium called the Singing Christmas Tree. It is a large tree-shaped platform with a choir of people standing and singing Christmas songs. This year, one of Jordan's nurses participated in the choir and convinced the director to use one of the songs as a tribute to Jordan. While the nurse, Natalie, read a poem and the choir sang, pictures of Jordan and our family played larger than life on two gigantic screens.  It was moving and meaningful and one more small example of the power love has.  It is also one of my favorite memories of any Christmas season and I hope to be able to find ways that I can use my talents and resources, whatever they may be, to bless the lives of others in need.

One way we are planning to do that this year as a family is to do 12-days of giving, where our children have come up with 12 ideas for helping others. Some of these include going to a grocery store and buying groceries for the next person in line, writing letters to missionaries from our area, and many others.

I know from experience that my children will not remember any of the gifts we might give them this year, but they will never forget gifts of love they give to others.  After all, giving gifts to those in need is what Christmas is really for.

A Running Miracle

Thanks to so many wonderful people, the run for Jordan was a huge success.  More than 170 people from all over came to support Jordan, SCID awareness, and all future families that SCID may impact.  The night before the event, I was overwhelmed by the total strangers who had decided to come and be a part of this event.  I am grateful to Jesse for seeing the vision of community and love that comes through unity and service and to put in the significant time and effort it takes to make one of these events work including getting approvals from the city, procuring liability insurance, getting sponsors, marketing for the event, and so much more.  I have never seen such a dedicated, organized teenager.

The day of the run, I reminded my wife and those around me that I would be running for only 1 mile and walking the remainder. For more than 4 years, my knees have simply locked up after running a mile--they become so painful that I have to walk and then can't climb stairs without supporting myself with my arms for several days. I can sprint all day without an issue but for some reason, continual running for a mile is enough to cause significant pain.  I have been through physical therapy, exercised and stretched many ways, and nothing has seemed to work.  So, I generally work out on an elliptical machine instead of running.  Yet while I knew my body wouldn't allow it, I still prayed that the Lord would help me go just as far as possible.

As I started running, I stayed with my youngest living son for a few moments, and then with my next youngest son for a few minutes longer.  After that I moved ahead and picked up speed as I felt pushed forward by the cause and driven by the support of so many runners and volunteers all around me.  Near the 1 mile point, I felt my knees begin to lock up and all I could do was fight back the pain as I prayed more fervently for the Lord to allow me to "run and not be weary."  I know the Lord often allows our physical bodies to take their natural course and then sustains us by helping us learn and grow from the pain, but this day, He granted me a different blessing--a true miracle.  In the moment when my knees should have locked up, I felt overcome with a wave of peace and love and at that second the pain was absolutely gone. For the first time in four years, I not only ran to the end of the race, I was able to pick up speed and really push myself through the finish, as if carried on the wings of angels and wrapped in the arms of the Lord.  

When I rounded the finish line and considered what had just occurred, I heard the race coordinator (Jesse) announce that we had been directed to take a wrong turn and had only run 2.25 rather than 3.1 miles.  I considered running a few more laps around the finish-line track to make up the difference and when I started, I found that my knees would simply not allow it.  I marveled how the Lord answered my prayer by giving me strength and shortening the race so I could run for Jordan.  

I am grateful that God loves me enough to care about the simple things and to grant me miracles from day to day.  What a wonderful life this is.

Happy Birthday Jordan

One year ago today, as I sat at work, I received a call from Heidi telling me it was "time" for the baby to come.  For the first time in 5 children, we had been into the hospital on several false alarms and released, so neither Heidi nor I were certain this one was it.  However, several days past her due date and with anticipation growing, we were hopeful.  My staff at work noticed a familiar routine and as I walked out of my office to leave, they stood up and cheered loudly.  Apparently they knew something about this trip to the hospital that I didn't.

A few hours later, just before 8pm, Jordan Paul Janeway was born into the world.  He arrived blue and lifeless as every baby does, but after a few increasingly tense moments without a change, it was clear Jordan's entry was not routine.  In a blur, a team of nurses came rushing into the room (an experience we would become all too familiar with in the months ahead) and a cry of "code blue" roared across the hospital intercom.  

Moments later, a smiling nurse turned to hand the now-breathing Jordan into his mother's outstretched arms. Heidi held him close, breathed a sigh of relief, and wiped away her anxious tears.  Jordan was now safe and all appeared well.

That night, Jordan was unable to eat and appeared to have some issues breathing, as well as difficulty closing his right eye.  The nurses told Heidi they would take him and monitor him to let her sleep.  Thus began a life-changing journey of discovery and growth for Jordan, and all those who would come to know and love him. 

One year later, as Heidi and I consider this experience of being parents to this sweet young child, and watch the videos we have of his time with us (another tender mercy of the Lord), we want to wish our son a special Happy Birthday.  He may not be here with us now in person, but he will never leave our family.  We miss and love you Jordan and look forward to a reunion with you again, in the glorious light of Heaven above.  

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.