Wednesday, February 5, 2014

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.  

Sunday, January 19, 2014

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.

Thursday, December 12, 2013

SCID in Oregon

I connected with a friend who is an attorney and has been part of the Oregon legislature, Shawn Lindsay, about SCID implementation in Oregon.  He reached out to his contacts and sent me the following:

I received the attached voicemail from Bryan Boehringer of the Oregon Medical Association.  It looks like screening will be implemented by rule shortly.  Let me know if you have any questions.

I followed up and found out that agency rule as opposed to a statute being passed by the legislature, means screening should go into affect in May or June of 2014.  We are so excited!  Thanks Shawn!

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.

Thursday, October 24, 2013

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.

Thursday, October 3, 2013

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.  

Monday, September 16, 2013

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.