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.

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.

Even By Study, And Also By Faith

In my daily meditation about life and meaning, as I have prayed for greater understanding about what is True, I have felt strongly that approaching Truth is always a process of building knowledge on a foundation of faith.  I have also felt that one of the dangers to learning Truth is attempting to build faith on a foundation of perceived knowledge (to need to KNOW before I believe).  This is dangerous for at least three reasons:

1)      I learn to trust myself rather than God assuming my eyes are more honest than His Spirit.

2)      What I “know” is relative based on my prior experience and how I apply what I have learned. 

3)      My truth is based on current knowledge, which means anything new I learn will necessarily rock my faith. 

Taking these separately and in more detail, faith by definition is a belief in things that are not seen but are True; faith is “evidence” of Truth (Hebrews 11:1).  I know a Truth by a spiritual witness rather than a physical one so that I am required to act by spiritual witness rather than physical knowledge—this is how I learn to trust God.  Most memorable stories in the Bible outline situations where the physical knowledge makes the spiritual test seem impossible for this very reason.  So faith precedes True knowledge by design.   

Second, building my faith on knowledge would only be possible if that knowledge was in fact Truth.  Unfortunately, the relativity inherent in the application of temporal learning makes it “my truth”, which by definition is different than “your truth” and therefore cannot be universal Truth.  This means my knowledge can never be the foundation for real faith since perfect knowledge, at this stage of my existence, belongs only to God (Ephesians 4:13; Job 37:16).  

Finally, it is too often that I hear someone say they “no longer believe” in the Restored Gospel or even in God because they learned “this thing” or “that thing”, which was in some way contrary to what the individual thought they “knew”.  Since "knowledge" changes and expands even in the process of normal spiritual learning, there is no way for perceived knowledge to serve as a firm foundation.  Instead, knowledge must be based on faith in Him who has “no variableness, neither shadow of changing” (James 1:17).  Truly God’s Truth will never stand up to our own (Isaiah 55:9). 

When I understand that knowledge is a process, built on faith, that is gained “precept upon precept; line upon line…here a little, and there a little” (Isaiah 28:10), I begin to participate in the process of True learning.  I can then learn Truth through the witness of the Spirit, which is the true litmus test of Godliness.  In this way I have a foundation that will never move and will never fail.  I am grateful therefore, to know little and believe much through the light of faith. 

Coping

We have spent the last week with family and a LOT of grandkids.  Young cousins, nieces and nephews are too far removed from Jordan’s experience to have much to say about it. Our children continue to respond as the textbooks say they should. 

Michael doesn’t shed many tears while he is engaged with family and friends, but certainly prays about and talks about Jordan whenever he is not busy.  Last Sunday he expressed how the principle of prayer has helped him keep Jordan near. 

Brooklyn gets emotional any time she sees a picture of Jordan or visits his grave and seems to understand the temporal finality of this loss fairly well.  She plays happily with family and friends but feels the weight of loss in the quiet moments. 

Tyler rarely admits to having any emotion but always sheds a tear when he sees a video of Jordan or we are talking about Jordan.  Tyler loves to say that he “left his eyes open too long” so they are watering, since of course he isn’t crying….  We are working to help him understand that sadness is still okay.

Aaron has unexpected moments where he will be engaged in some other activity and will stop suddenly and start crying and say that he misses Jordan.  Heidi or I will give him a hug and he will cry for a minute and then look up and say something like, “I am not sad any more”, before he stands up and goes back to his activity.  Aaron still asks regularly when Jordan is “coming back alive” or when he will see Jordan again. 

For Heidi and I, we seem, like Aaron, to be watching and waiting for a child that is no longer there.  Yesterday, with our four living children by our side, both Heidi and I stepped back into the room we had just come from to look for one more child before realizing everyone was already with us.  Jordan’s place in our family circle appears destined to remain empty but present.   

Aside from staying perhaps too busy, I have become obsessed with learning more about life after death by reading books including scriptures and near death experiences, and praying for guidance to understand what to do now.  I have also been praying to better understand the purpose of life, which is the details of salvation, and to better understand the process of finding Truth.  I believe a great deal and know very little; but I have experienced the Love of Christ and I know He will answer my sincere prayers and right now, those prayers are to better understand the Truth that leads to eternal life with my family.  I have been immensely blessed with a foundation of faith that has sustained me and I want to be sure it is solid enough to never fail.  

Never Forgotten

I don't think there was a "normal" before Jordan and there certainly isn't one now.  The daily routine consists of helping our other four kids, spending time at work, and trying to spend as much family time as possible. We stay busy (sometimes too busy) as a way to cope and to build family memories.  Even now, the quiet moments are difficult to find.

In the past month, we have been hiking several times in the Columbia River Gorge and Silver Falls, biking, walking, and playing at the lake.  We spend many evenings playing games and taking family drives.  We talk about moving or building a house in the country as a way to escape from the noise of a neighborhood and to further encourage the children to spend time together.  We know the relationships we develop, especially with family, matter most.

Every few days, all or part of our family heads to the cemetery for a few moments with our memories.  Even the difficult reality of that small gravesite, still marked by the sod added to regrow the grass, does not diminish the peace we continue to feel there.  This tangible memorial is one more way we keep our son near.

Often, after sitting with our own son, we walk through rows of gravestones to ponder the love and loss of others.  Somehow, we feel connected to everyone here.  We feel joy each time we see a long life lived well (as evidenced by the messages of love etched in the gravestones), and shed tears when we see graves of other children and consider the heartache that family must have felt.

Several weeks ago, as my oldest son was walking through these rows, he came across the grave of a 7 year old boy who died in the mid 1800's.  On the dark, worn stone were carved the words, "Never Forgotten." I pondered how, while the current of time most certainly moved his family forward and perhaps away from this memorial, while it may have been many years since anyone was here to visit, this child is not forgotten by a Savior who knows even the sparrow that falls silently in a field.  No dark corner, no remote island, not even a grave can hide this child or any person from the love of God through Christ.  I am grateful for that knowledge for myself, my family, and for everyone.

Charge Syndrome

A few of Jordan's studies came back this week and several more will have results by the end of the Summer. The most recent result shows that Jordan did in fact have Charge syndrome, which means he may have not only been unable to hear, but he likely would have developed vision issues as well as potentially having limited feeling due to diminished functionality of his nervous system.  While none of this makes his passing easy, it certainly helps to know that he is not only released from the pain he was feeling but from a lifetime of challenges that we had not even considered.

Mountains to Climb

One of my favorite quotes is Spencer W Kimball saying humbly to the Lord, "Give me this mountain"; he was speaking about the benefit of challenges, but today I am reminded not only of the value of challenges but also the mountains of blessings my family has received as we continue to climb.  With Jordan so far ahead, there is no turning back for us now.

This week I have not been the only one in our family to recognize these blessings.  Yesterday, my oldest son woke up and walked into my room to tell me how blessed he is.  He told me he was looking around his room and realized he has so much to be grateful for with a bed to sleep in and good clothes to wear and people who care about him.  He is 10.

Today, after weeks of mail forwarding between here and Seattle, our mailbox was literally flooded with letters of inspiration, hope, and gratitude.  Friends, family, and loved ones reached out to fill our hearts and home with love.  These might have come with all the other support around the time of the funeral but instead the Lord allowed for these to be held back and to have them arrive just as we are settling into a routine without Jordan.  I see this as yet another tender mercy at a time when a little extra boost of love and encouragement is most welcome.

I echo President Kimball's thoughts and expand on them with my own: I will take the mountain of challenges because while there may be no simple path to tread, there are ALWAYS blessings to outweigh the struggle and pull me upward.  There are meadows of flowers everywhere--even if I have to close my eyes at times to see them.

Jordan's Memorial Service Pictures

These pictures are a glimpse of our beautiful day celebrating Jordan's short but beautiful little life.  We are so grateful to all who helped out with every small detail.  We have so many talented friends who gave so freely of their time, energy and talents.  Thanks Jen for all these beautiful photos we have to look upon through the years to come.