tag:blogger.com,1999:blog-79326485982810994482024-03-13T05:00:32.880-07:00Jordan JanewayHeidi Jhttp://www.blogger.com/profile/10960578809849992648noreply@blogger.comBlogger92125tag:blogger.com,1999:blog-7932648598281099448.post-75932098606445988522014-10-04T10:16:00.001-07:002014-10-04T10:16:17.069-07:002nd BirthdayIt 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.<br />
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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.<br />
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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. <br />
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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. <br />
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Happy 2nd Birthday little guy. See you soon. Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com1tag:blogger.com,1999:blog-7932648598281099448.post-62236039499866070462014-10-04T10:07:00.000-07:002014-10-04T10:16:47.494-07:00JoyOur 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. <br />
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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.<o:p></o:p></div>
Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com0tag:blogger.com,1999:blog-7932648598281099448.post-5229192082208419972014-02-05T13:31:00.000-08:002014-02-05T22:23:44.334-08:00The Tunnel<div class="MsoNormal">
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<span style="font-family: 'Times New Roman', serif; font-size: 13.5pt;">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 <b>hope</b>, which
takes shape and true meaning only in the midst of sadness; it is <b>love</b>,
which takes its most significant form and true purpose in the midst of loss; it
is <b>peace</b>, which pulls us forward from a distance through turmoil
and war. And it is <b>birth</b> and <b>rebirth</b>,
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. <o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 13.5pt;">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. <o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 13.5pt;">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.<o:p></o:p></span></div>
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<span style="font-family: 'Times New Roman', serif; font-size: 13.5pt;">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. <o:p></o:p></span></div>
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Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com1tag:blogger.com,1999:blog-7932648598281099448.post-20371816071370694672014-01-19T23:55:00.002-08:002014-01-19T23:55:37.949-08:00Oregon SCID testingHeidi 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. <br />
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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? <br />
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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?<br />
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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.Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com0tag:blogger.com,1999:blog-7932648598281099448.post-72088679942273859812013-12-12T13:20:00.001-08:002013-12-12T13:20:07.789-08:00SCID in OregonI 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:<br />
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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.<o:p></o:p></div>
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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!</div>
Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com1tag:blogger.com,1999:blog-7932648598281099448.post-24461587536253824432013-12-12T13:05:00.001-08:002013-12-12T13:05:43.373-08:00Singing Christmas TreeMy 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.<br />
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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. <br />
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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.Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com0tag:blogger.com,1999:blog-7932648598281099448.post-10110988561086903262013-10-24T21:07:00.001-07:002013-12-18T23:57:45.698-08:00A Running MiracleThanks 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.<br />
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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.</div>
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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. </div>
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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. </div>
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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. <br />
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Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com0tag:blogger.com,1999:blog-7932648598281099448.post-39308042556076776972013-10-03T16:22:00.000-07:002013-10-03T17:19:06.025-07:00Happy Birthday JordanOne 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. <br />
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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. </div>
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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.</div>
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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. </div>
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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. </div>
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Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com0tag:blogger.com,1999:blog-7932648598281099448.post-69433085371776269012013-09-16T16:14:00.004-07:002013-09-16T16:14:47.844-07:00SCID MeetingAfter 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. <div>
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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.</div>
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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. </div>
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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. </div>
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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! </div>
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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. </div>
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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. </div>
Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com0tag:blogger.com,1999:blog-7932648598281099448.post-74613470551331665022013-09-16T15:36:00.002-07:002013-09-16T15:36:12.348-07:00Jordan Janeway Memorial RunWe 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! <br />
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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.<br />
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To register or find out more, click the following:<br />
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<a href="http://funrunwalk.wix.com/friendsofjordan">http://funrunwalk.wix.com/friendsofjordan</a><o:p></o:p></div>
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<a href="https://www.facebook.com/FriendsofJordan5k">https://www.facebook.com/FriendsofJordan5k</a><o:p></o:p></div>
Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com0tag:blogger.com,1999:blog-7932648598281099448.post-81216642001093070042013-09-05T00:03:00.001-07:002013-09-05T00:04:54.558-07:00Great WeekPost from 8/29 but not published:<br />
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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. <br />
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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.<br />
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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.</div>
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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.</div>
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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. </div>
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Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com0tag:blogger.com,1999:blog-7932648598281099448.post-3511663997121295282013-09-04T23:59:00.002-07:002013-09-05T00:09:59.358-07:00Broken?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. <br />
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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. <br />
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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. <br />
<br />Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com2tag:blogger.com,1999:blog-7932648598281099448.post-47941828014309379112013-08-19T23:39:00.002-07:002013-08-25T22:30:35.598-07:00Even By Study, And Also By Faith<div class="MsoNormal">
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<span style="font-size: 12.0pt; line-height: 115%;">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: <o:p></o:p></span></div>
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<span style="font-size: 12pt; line-height: 115%; text-indent: -0.25in;">1)<span style="font-size: 7pt; line-height: normal;"> </span></span><span style="font-size: 12pt; line-height: 115%; text-indent: -0.25in;">I learn to trust myself rather than
God assuming my eyes are more honest than His Spirit.</span></div>
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<span style="font-size: 12pt; line-height: 115%; text-indent: -0.25in;">2)<span style="font-size: 7pt; line-height: normal;"> </span></span><span style="font-size: 12pt; line-height: 115%; text-indent: -0.25in;">What I “know” is relative based on my
prior experience and how I apply what I have learned. </span></div>
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<span style="font-size: 12pt; line-height: 115%; text-indent: -0.25in;">3)<span style="font-size: 7pt; line-height: normal;"> </span></span><span style="font-size: 12pt; line-height: 115%; text-indent: -0.25in;">My truth is based on current
knowledge, which means anything new I learn will necessarily rock my
faith. </span></div>
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<span style="font-size: 12.0pt; line-height: 115%;">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.
<o:p></o:p></span></div>
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<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">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). <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">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). <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">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. <o:p></o:p></span></div>
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<div class="MsoNormal">
<br /></div>
</div>
Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com0tag:blogger.com,1999:blog-7932648598281099448.post-89882229934451311982013-08-19T21:36:00.002-07:002013-08-25T22:22:33.206-07:00Coping<div class="MsoNormal">
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. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
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. <br />
<div class="MsoNormal">
<o:p></o:p></div>
Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com0tag:blogger.com,1999:blog-7932648598281099448.post-40253508502114063972013-08-11T15:47:00.001-07:002013-08-11T16:36:36.122-07:00Never ForgottenI 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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com1tag:blogger.com,1999:blog-7932648598281099448.post-74780326205484591592013-08-01T16:53:00.001-07:002013-08-01T16:53:41.533-07:00Charge SyndromeA 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. Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com3tag:blogger.com,1999:blog-7932648598281099448.post-58263854082355001932013-07-19T17:06:00.000-07:002013-08-01T16:50:39.010-07:00Mountains to ClimbOne 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. <br />
<br />
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. <br />
<br />
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.<br />
<br />
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. <br />
<br />
<br />
<br />
<br />Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com0tag:blogger.com,1999:blog-7932648598281099448.post-219648033954474512013-07-19T00:32:00.002-07:002013-07-19T00:32:31.175-07:00Jordan's Memorial Service Pictures<div class="separator" style="clear: both; text-align: center;">
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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.<br /><br />Heidi Jhttp://www.blogger.com/profile/10960578809849992648noreply@blogger.com2tag:blogger.com,1999:blog-7932648598281099448.post-50306372013560664182013-07-15T09:06:00.002-07:002013-08-11T14:12:20.310-07:00In the Fire, From the Fire, Through the Fire<div class="MsoNormal">
In the midst of blessings, it is easy to find wisdom in the
work God performs. Yet when I experience
suffering in my own life or the life of others, I am tempted to question this
wisdom, supposing perhaps that God is interested more in my comfort than He is
in my salvation. Certainly, the
scriptures are full of such suffering and loss that at first glance, seems to
fly in the face of a God of Love. <o:p></o:p></div>
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<div class="MsoNormal">
When I read of Abel slain by his brother for being approved of the
Lord, I have asked, “Where was God to protect his faithful son?”<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
When I read of Abraham being asked to sacrifice his miracle child Isaac,
I have wondered, “Why would God require this of anyone?“ <o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
When I read of Shadrach, Mechech and Abed-Nego refusing to worship Babylonian idols and being thrown into the furnace,
I have questioned, “Where was God to smite the wicked king?”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When innocent children are called home through disease,
disaster, or even the incomprehensible acts of others I have wondered, “Where
is God to protect these little ones?”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
What I have learned through time, prayer, and experience,
however, is that the definition of Love that requires no freedom to choose or
ability to experience loss, does not account for a picture that is far greater,
far grander than what I see here on earth.
It does not account for the reality that Abel was taken up to Heaven and
joined back to God by, through, and despite the actions of his wicked brother; he
was saved by being fully committed to righteousness even “through the fire” of
death. Abraham was
taken “from the fire” of needing to sacrifice his son; he was saved, however,
not because he didn’t ultimately make this sacrifice but because he was willing
to trust God regardless the sacrifice. Shadrach,
Meshech, and Abed-Nego were visited by Christ “in the fire” and were brought
out unharmed; they were saved eternally not because they were not burned physically but
because they were willing to sacrifice even their lives for their faith. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The true miracle is that each of these individuals, as with
all who are faithful or who are innocent, were spiritually expanded and ultimately
saved by their willingness to trust God.
The fact that they were taken through the fire, from the fire, or in the
fire, is only relevant or meaningful to those left behind. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
In this light, having Jordan saved “from the fire” of death
would have been a true miracle (representing the will and power of God beyond the understanding of men) only if it prepared me more completely to return
to God than any other outcome Knowing this, I can be grateful for a Father
who requires more of me than I know I can give, in order to make more of me
than I can otherwise become. <br />
<div class="MsoNormal">
<o:p></o:p></div>
Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com0tag:blogger.com,1999:blog-7932648598281099448.post-40135301249329099542013-07-10T20:47:00.000-07:002013-07-11T19:10:56.691-07:00Angels Bearing Us UpThe funeral is over, the family is gone, and reality is flooding in. I walk to the crib where Jordan laid and remind myself that he is not here--that there is no one here to use the piles of clothes, boxes of diapers, or cases of dried milk. It is hard not to think he is just at the hospital and that I can go and visit him at any time.<br />
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<br /></div>
<div>
When it does hit me, I find myself choking back emotion. I am not afraid to cry, only surprised that I am so caught off guard by the tears at times. It still feels necessary to stay strong for my children, who watch my face more now than ever before and whose own emotions are tied closely to mine. They feel the weight of their brother's death but are also doing all they can to move forward, to survive, to be children. <br />
<div>
<br /></div>
<div>
On the wall behind me, a large picture of Jordan with his bright blue eyes watches over me as I move the crib to the middle of the room. Heidi has put away the medical equipment but many of Jordan's favorite toys and blankets are still there. It will be some time before these are removed.</div>
<div>
<br /></div>
<div>
In some ways, keeping Jordan's favorite clothes, and blankets, and toys, holding birthday parties, and setting places for him at family events will all keep Jordan alive in our family. In other ways this desire to keep him "real" for us and our children may make his absence more significant and perhaps more painful. </div>
<div>
<br /></div>
<div>
In the quiet moments I find myself considering how I am blessed with enough to be "sufficient for my needs" and that any more I work for is chasing nothing. I consider how much time I really have to spend with my children, with Heidi, and to work to serve other families with SCID babies. I begin to plan outreach to SCID communities as a way to fill the void. </div>
<div>
<br /></div>
<div>
In the room next to me, I notice Heidi sitting with her own thoughts. I know as a mother, her sadness is even deeper than my own and I wish I had more strength to give her. I offer her hope that we can feel Jordan in our home as we think about and speak about and ponder about the wonderful moments we had. I share how our service to other families will make a difference and how I feel angels continuing to bear us up. </div>
<div>
<br /></div>
<div>
A knock on our door reveals one of these visible angels bringing us dinner. Little acts that make a big difference. </div>
</div>
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Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com3tag:blogger.com,1999:blog-7932648598281099448.post-85259346959071056092013-07-07T15:05:00.001-07:002013-07-09T20:00:09.986-07:00My TributeFuneral day yesterday was moving, beautiful, and perfect. It is difficult to describe the outpouring of kindness from everyone around us and the tribute of service and sacrifice that was shared. As part of this tribute, I want to share my thoughts for my children and others to read and remember:<br />
<div>
<br /></div>
<div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">My Tribute
to Jordan Paul Janeway <o:p></o:p></span></div>
<div class="MsoNormal">
<b><span style="font-size: 12.0pt; line-height: 115%;">A God Close at Hand</span></b></div>
<div class="MsoNormal">
<b><span style="font-size: 12.0pt; line-height: 115%;"><br /></span></b></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">Jordan was a
miracle—that much we know. As Heidi
shared, he was born and sustained through faith and prayers, and he blessed all
he came in contact with. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">Heidi is
also a miracle—who sat with and worked with and loved Jordan from his first
breath to his last. She stood by and
supported him every moment she could and left his side only to be with her
other children and me. I am grateful for
my dear and faithful wife. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">For a few
moments today, as I reflect on the life of my youngest son, I would like to
share with you what I have learned about miracles through Jordan. My hope is that you will feel not only
sadness for the loss of Jordan but joy in the knowledge that for all the
sadness and loss we experience in this life, there is a Father in Heaven who
Loves you, as he does me, and who is always close at hand. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">Before Jordan
joined our family, or there was even a family to join, in the eons that
preceded any of our lives here, Jordan sat with all of us in the councils of
heaven to hear the great Plan of Salvation. This plan, put forth by our perfect
Father outlined free agency as its central tenet—our ability to choose for
ourselves to find misery or joy. Part of
this test was to have a life on earth where we receive a physical body and are
separated from God for a time to see if we will continue to love and serve Him. Jordan knew, as we all do, that time here is
brief and that once completed, he could return to live with God again.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">In this
great council, Jordan learned that overcoming death would be possible not
through his own power, but by the power of Jesus Christ, whose infinite atonement
would pay the price for sin and death and bring all back to the presence of
God. There they would be judged based on
deeds in the mortal life and the intent and character of their heart. Those who died without the knowledge of
Christ or in their infancy would be alive in Christ because of their innocence and
ignorance to the laws of Heaven. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">To prepare
for Jordan’s time here, Heidi and I were given experiences in which we were
shown that we would have a handicapped child.
For several years, we discussed this feeling and determined openly that
we would accept the challenge. (Oh the
blissful foolishness of the ignorant mind.)
This knowledge that we were waiting on a handicapped child stood as a
great blessing and comfort once he arrived, since we knew Jordan’s limitations
were not simply an accident of nature.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">After Jordan’s
birth, as we became more familiar with our son, we saw more clearly the perfect
wisdom and miracle of these limitations.
For example:<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoListParagraphCxSpFirst" style="margin-left: 41.0pt; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; font-size: 12.0pt; line-height: 115%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; line-height: normal;">
</span></span><!--[endif]--><span style="font-size: 12.0pt; line-height: 115%;">We
struggled with how to teach our children to find joy in service. Jordan required a constant focus and
sacrifice from all of us, and our children began to fight to help and serve
him.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpFirst" style="margin-left: 41.0pt; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 41.0pt; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; font-size: 12.0pt; line-height: 115%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; line-height: normal;">
</span></span><!--[endif]--><span style="font-size: 12.0pt; line-height: 115%;">We
struggled to find ways to teach our children to communicate through love. Jordan could not hear or speak and so we
learned to really see the eyes as the window to the soul, where communication
could occur in a moment more deeply than anything we could ever say.<o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 41.0pt; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 41.0pt; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; font-size: 12.0pt; line-height: 115%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; line-height: normal;">
</span></span><!--[endif]--><span style="font-size: 12.0pt; line-height: 115%;">We
wanted our children to be more aware of the needs of others. Jordan could not move quickly and did not
express emotion clearly, so we learned to really watch to see and respond to
the needs of another and to anticipate these needs in a way that eased suffering
even before it began. <o:p></o:p></span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 41.0pt; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoListParagraphCxSpLast" style="margin-left: 41.0pt; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; font-size: 12.0pt; line-height: 115%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: 'Times New Roman'; font-size: 7pt; line-height: normal;">
</span></span><!--[endif]--><span style="font-size: 12.0pt; line-height: 115%;">We
struggled to help our children slow down long enough to enjoy the moment. Jordan’s life was often at risk, which caused
us to consider, and often talk about, our
limited time here and to take every moment we have together as a blessing and a
gift from God. <o:p></o:p></span></div>
<div class="MsoListParagraphCxSpLast" style="margin-left: 41.0pt; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">For our
family, the countless lessons of compassion, responsibility, love, humility,
charity, and so many others have become a shifting point for us—a moment in
time we know will serve as a foundation for all that lies ahead. There are certainly many blessings and miracles
yet to come. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">In the community
around us, we experienced the miracle of angels—seen and unseen--, as family,
friends, neighbors, and even complete strangers reached out with acts and words
of kindness and care. Here at home, our
fridge was always filled with food, our lawn was always mowed, our email and Facebook
and blog brimming with messages of love.
In Seattle, others in the midst of their own suffering paused to reach
out and offer compassion in our time of deepest sorrow.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">On one occasion,
after the passing of our son, a woman who spoke no English, and whose own son
is struggling with cancer, came up to Heidi to give her a hug, offer her condolences,
and thank Heidi for the love Heidi had shown her. Since she could communicate with Heidi in no
other way, this woman put her hands together as if saying a prayer, looked up
to heaven with tears in her eyes and said, “thank you.” We were all touched and reminded that love is
the greatest miracle of all. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">Nearly a
month before Jordan’s passing, as we prepared for Jordan to receive his brother’s
T-cells, I was filled with the knowledge that Jordan would survive the
transplant. I turned to Heidi and told her this, feeling foolish as the
transplant was to be a simple process. Again,
this knowledge became a great blessing when rather than a simple procedure, the
infusion led to a shutdown of all Jordan’s major organs.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">Over the
next several weeks, as Jordan improved and the T-cell graft took hold, Heidi
and I continued to have a sense of hope but also recognition that the time we
had after the infusion was itself a miracle and a gift. Rather than losing Jordan suddenly, we had weeks
of additional time to sit with him, hold his hand, to have him touch our faces,
explore us with his eyes, and even smile his unique and beautiful smile. Each of our children was able to see him
again and our youngest children were able to hold his hand. Aaron was able to experience firsthand this
promise of the Lord fulfilled and to know that he had been a part of saving
Jordan for a time. In fact, when Aaron
heard the T-cells he provided had worked, he shot up from his bed and exclaimed,
“I am a super-hero.” He certainly
is. </span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><o:p></o:p></span><span style="font-size: 12.0pt; line-height: 115%;">The very
last day of Jordan’s life on earth, as I walked out the door to church, I was
impressed to pick up a book that is more than 1,000 pages long. I turned to the one marked page and read, “Children
that die in their infancy will be raised by righteous parents in the millennium.” I called Heidi to tell her my
experience. Once again, this knowledge
that God was near made the reality of Jordan’s passing feel not like an
accident but like a process in which Jordan had done what he came here to do
and was ready to go home. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">When I
consider, even in the short term, what Jordan’s life means to me, I recognize
that in 9 short months he did more to bring me closer to Christ than any other experience
I can imagine. My life is better, my
relationships deeper, my moments happier, my faith stronger, my vision clearer,
my hope brighter, my love purer, my family wiser, because of the love of Christ
that shined through a little boy. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">As I look
forward to the city of God where Jordan waits, I know that in the midst of
crossing the vast and sometimes dark seas that lead to this city, when I am at
times swallowed up in the storms and unable to see the sun above, Jordan serves
as a stone touched by the finger of Christ that will forever provide light for
the crossing. And because of his life
and because of the miracles I have seen and the knowledge I have gained and the
love I have felt, I now know what I once believed that, “All things are done in
the wisdom of him who knoweth all things…and men are that they might have joy.”
(2 Ne 2:24-25) <u>Even</u> in the midst of
losing a child. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">May God’s
blessing, miracles, and light be and shine with you as they are with my family
and may Jordan continue to be a light in your life as his memory shines
on. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">I love and
will miss you Jordan—my son. <o:p></o:p></span></div>
</div>
Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com1tag:blogger.com,1999:blog-7932648598281099448.post-6965924283134665282013-07-05T21:25:00.002-07:002013-07-06T06:49:45.674-07:00PreparationI chose a gravesite for my son today. It is on a hill overlooking miles and miles of open fields as far as the eye can see. In its midst, a large American Flag calls out the patriotic sacrifice of the soldiers there, while Mount Hood in the distance serves as a symbol of both beauty and strength. In this small community cemetery, there are no sounds of cars to break the stillness, no buildings to distort the view, no endless rows of others' memories to get lost in--only silence to bridge the divide between what is and what might have been. Love makes this silence deafening and brings me to my knees under the surprising weight of grief as I walk to the place where Jordan will lie. <br />
<br />
I sit for a while and try to listen--to see if I can hear Jordan's approval of this place. I know Jordan has moved on and this ground is for me--to sit with, and talk with, and pray with my son. I feel him pulling me forward and bearing me up and I know that while time will mix these moments with joys yet to come, nothing will fully dissipate the sadness of this loss. That is the price of love, and it is a price I am grateful to pay.<br />
<br />
Hand in hand, Heidi and I discuss the gratitude we feel for our journey together and our hope for many tomorrows. We feel the full reality of what had been only a future shadow, and decide that when our time comes, we want to rest near our only child who will not have a family of his own. Today, however, there is little time to rest, so we push forward. Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com0tag:blogger.com,1999:blog-7932648598281099448.post-46149714496449313442013-07-03T09:20:00.001-07:002013-07-03T19:37:04.777-07:00Memorial Service for Jordan<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">A Celebration of Life/Memorial Service will be held for Jordan
Paul Janeway on Saturday, July 6th, at 3pm (final time) at the LDS chapel at: <o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="box-sizing: border-box;"><span style="font-size: 13.5pt;">3661
Brooke Street<o:p></o:p></span></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">FOREST GROVE, <span style="box-sizing: border-box;">OREGON <span style="box-sizing: border-box;">97116<o:p></o:p></span></span></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">A graveside service will immediately follow at the Union Point
Cemetery in Banks, Oregon. <o:p></o:p></span><br />
<span style="font-size: 13.5pt;"><br /></span>
<span style="font-size: 13.5pt;">In lieu of flowers, we have set up The Jordan Janeway Memorial Trust. Donations can be made in any Bank of America Branch or by mail to:</span><br />
<span style="font-size: 13.5pt;"><br /></span>
<span style="font-size: 13.5pt;">Bank of America</span><br />
<span style="font-size: 13.5pt;">RE: Jordan Janeway Memorial Trust</span><br />
<span style="font-size: 13.5pt;">409 E Main St</span><br />
<span style="font-size: 13.5pt;">Hillsboro, OR 97123</span><br />
<br />
<span style="font-size: medium;">Checks should be written to: The Jordan Janeway Memorial Trust</span><br />
<span style="font-size: medium;">Reference account #485010264561</span><br />
<span style="font-size: medium;"><br /></span>
<span style="font-size: medium;">This trust has been established short term to assist with medical and funeral costs including helping family attend from a distance where needed, and long term to assist in increasing awareness for newborn screening with a specific focus on SCID. Early detection of SCID, which is part of newborn screening nationally but not yet funded in Oregon, increases survival by at least 35%. We hope to make a difference for other families. </span><br />
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<i><span style="font-size: 13.5pt;">When God calls little children</span><br style="text-align: -webkit-center;" />
<span style="text-align: -webkit-center;">to dwell with Him above.</span><br style="text-align: -webkit-center;" />
<span style="text-align: -webkit-center;">We mortals sometimes question</span><br style="text-align: -webkit-center;" />
<span style="text-align: -webkit-center;">the wisdom of His love.</span><o:p></o:p></i></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<i><span style="font-size: 13.5pt;"><br />
<span style="text-align: -webkit-center;">For no heartache compares with</span><br style="text-align: -webkit-center;" />
<span style="text-align: -webkit-center;">the death of one small child,</span><br style="text-align: -webkit-center;" />
<span style="text-align: -webkit-center;">who does so much to make our world</span><br style="text-align: -webkit-center;" />
<span style="text-align: -webkit-center;">seem wonderful and mild.</span><o:p></o:p></span></i></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<i><span style="font-size: 13.5pt;"><br />
<span style="text-align: -webkit-center;">Perhaps God tires of calling</span><br style="text-align: -webkit-center;" />
<span style="text-align: -webkit-center;">the aged to His fold.</span><br style="text-align: -webkit-center;" />
<span style="text-align: -webkit-center;">So He picks at times a rosebud</span><br style="text-align: -webkit-center;" />
<span style="text-align: -webkit-center;">before it can grow old.</span><o:p></o:p></span></i></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<i><span style="font-size: 13.5pt;"><br />
<span style="text-align: -webkit-center;">God knows how much we need them</span><br style="text-align: -webkit-center;" />
<span style="text-align: -webkit-center;">and so He takes but few,</span><br style="text-align: -webkit-center;" />
<span style="text-align: -webkit-center;">to make the land of Heaven</span><br style="text-align: -webkit-center;" />
<span style="text-align: -webkit-center;">more beautiful to view.</span><o:p></o:p></span></i></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<i><span style="font-size: 13.5pt;"><br />
<span style="text-align: -webkit-center;">Believing this is difficult</span><br style="text-align: -webkit-center;" />
<span style="text-align: -webkit-center;">still somehow we must try.</span><br style="text-align: -webkit-center;" />
<span style="text-align: -webkit-center;">The saddest word mankind knows</span></span></i><i><span style="font-size: 13.5pt;"><br />
<span style="text-align: -webkit-center;">will always be "Goodbye".</span><o:p></o:p></span></i></div>
<br />
<div style="margin-bottom: .0001pt; margin: 0in;">
<i><span style="font-size: 13.5pt;"><br />
<span style="text-align: -webkit-center;">So when a child departs</span><br style="text-align: -webkit-center;" />
<span style="text-align: -webkit-center;">we who are left behind,</span><br style="text-align: -webkit-center;" />
<span style="text-align: -webkit-center;">must realize God loves children,</span><br style="text-align: -webkit-center;" />
<span style="text-align: -webkit-center;">Angels are hard to find.</span><br style="text-align: -webkit-center;" />
<span style="text-align: -webkit-center;">~Author Unknown</span><o:p></o:p></span></i></div>
Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com6tag:blogger.com,1999:blog-7932648598281099448.post-11845947290121348952013-07-02T10:53:00.001-07:002013-07-03T11:40:51.839-07:00The Long Walk Home<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">I remember in A Christmas Carol, how one of the turning points for
Scrooge was seeing Bob Cratchit walking home after the death of his youngest
son; Scrooge was touched to the core by this loss and wanted to do what he
could to change it--and he did. As I watched, I remember thinking two
things: 1) Losing a child would be the most difficult trial I could imagine;
and 2) The spirits and lives of children have power to reach even the deepest
corners of the soul and awaken us with power not only to want to be better but
to actually change.<o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-size: 13.5pt;">After losing a child, I believe both these
previous insights are true. In my limited experience, nothing has been
more difficult than saying goodbye to my youngest son. Yet nothing has
been more meaningful to me and to so many others than the short life he led and
the love he felt for and from all around him. I am so grateful that for
nearly 9 months I was blessed to be his father on earth and to care for this
sweet boy. I am blessed that he showed me so much about life and love and
meaning and purpose and reminded me that angels don't need wings to fly. <o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<span style="font-size: 13.5pt;">As I look toward the long walk ahead of me, I
recognize that if a sick child from a hospital bed can open hearts and scatter
blessings and change lives, then there is no limit to what I can do--to what we can all do. As
Jordan became my heart, so I can be his voice, feet, and hands to continue the
work of love and change he began. I can offer hope to others, lift the
brokenhearted, and serve as a soldier for change to bring newborn screening
for SCID to other families in Oregon. I don't expect this walk to be easy but it is worth the effort because this walk is the long walk home, where Jordan is waiting. </span>Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com3tag:blogger.com,1999:blog-7932648598281099448.post-60348631077417808842013-07-01T05:38:00.003-07:002014-10-04T10:17:38.638-07:00Following the SunsetLast night I followed the sunset. The sky was lit up with puffs of white over a light blue background and fire red reaching from the setting sun to illuminate the bottom of each cloud. I was mesmerized by the beauty and grandeur of it and went to sleep grateful for the knowledge, power, mercy, and love of the living God. <br />
<br />
This morning, at 5:15am, Jordan's heart stopped. Doctors did what they could to revive him as Heidi rushed to hold his little hand. He had done all he could to fight bravely, to hold on with the faith and love of so many. In the end, it was time, and Jordan, like me, followed the sunset.<br />
<br />
I know with all my heart that I will see my son again and he will rise in the resurrection a perfect child. I know that Heidi and I will raise him again in another time, in another place where we will be together as a perfect family in eternity. I know that the love I have for him remains with him as he remains with me. And I know my Father is a God of Love who is truly close at hand. I used to believe, but now I know. Ryan Janewayhttp://www.blogger.com/profile/02124243716320771074noreply@blogger.com17