This past year has been one of walking the most difficult of paths. The path doesn’t end here but on this first day of the new year, I want to look back and reflect on the many positives that have come along the way.
For this of you who linked to this from Facebook and don’t know the details of our story, let me explain. On May 31st, Kathy gave birth to a beautiful little boy named Nathan. One of the reasons that he was given that name is because the prophet Nathan who spoke the truth in love to David. Perhaps in response to my bluntness, I wanted a boy who would speak truth… in the most loving of ways.
The irony here is that within days of Nathan’s birth we learned that he has a syndrome due to the deletion of a portion of his 5th chromosome. When we met with the geneticist about his condition we talked about many things but what stuck is when she told us among kids with this syndrome some of them walk and some of them talk. We were painted a bleak picture and it was, and still is, hard to take in.
Yet, in the midst of our pain, we were seeing light. People stepped up in amazing ways. God would not hide in the dark, his light broke through and it was largely due to community. Here I give you, perhaps for my healing more than anything else, some of the best of the best.
· 3 loving women came to the NICU to hold and pray for Nathan when we couldn’t be there. CDC causes significant cognitive problems and one thing that I know about brain development is that physical touch stimulates brain development. We wanted Nathan wrapped in loving arms as much as possible and when we couldn’t be there Laura, Jan and Melinda took turns filling in slots before the sun rose and as it was setting holding and loving on our precious little boy.
· Many of the staff of the NICU’s at Seton main and Dell Children’s– names that come to mind… Elizabeth, Rondah, Nicole, Beth, Ann, Katie, Luc and so many others who cared for Nathan in ways that surpass the duties of a job and become vocation or calling. I remember half joking with Nicole about how the nurses must need a degree in counseling as well as nursing to deal with the parents in these tender circumstances. We laughed but in reality they really do act as counselors, educators and friends.
· Provision– Matt and Julie brought us groceries when we first started living at home again, dozens of people have brought us meals, visitors- pastors, friends and elders are grace have visited us in the hospital or prayed for us at church, Erin has cleaned our house more times than I can count, Dawn and Julie organized a fund raiser to help with costs, so many people have taken Mac for play dates, Nelson and Meg have sent us Chicago style pizza and Texas style barbecue, family have spent extended time with us to help lessen the load and to love on us, 3 of our best friends in Chicago- Jen, Sara and Amy came down to just be with us and help out. Will came to our home nearly every Saturday morning all summer so we could run, talk and pray.
· Doctors– there have been many good ones but I have to mention Simon Michael and Pat Hodges by name. Dr. Michael met us in our room as Nathan was transferred to the children’s hospital and couldn’t have done a better job. After I was still reeling from seeing Nathan get bagged the night before at Seton main and we struggled to make sense of everything he encouraged us to let Nathan tell his story and reassured us that we would be better for it and that whatever happens we will be okay. Dr. Hodges is a fellow Christ follower which helped us so much as we processed all the difficulties in those early days with Nathan.
· Best verses of 2013– this first one is a carryover from 2012 when it seemed that Kathy was going to miscarry Nathan- we had an appointment for an ultrasound which was basically just to confirm that we had lost the baby. After crying and grieving the night before, I woke up to the verse of the day on my bible app that says “But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong.” This verse gave me hope that Nathan could be okay despite HCG levels not rising the way the way they were supposed to and as the ultrasound image appeared we saw his little beating heart. The next one is the basis for the best sermon of the year. “Though our outer self is wasting away, our inner self is being renewed day by day.” I’ll say more next…
· Best sermon– John Piper’s talk entitled “Do not lose heart” given at a conference in Chicago. Kathy and I have both listened to this more than once and I imagine I am biased based on our experience but I think it may be the best message I have ever heard in my life and I have sat under some great teachers. I am not even going to try to summarize it here but I strongly encourage you to give it a listen- it is so worth your time!
· Best book– “The Power of the Powerless: A Brother’s Legacy of Love” by Christopher de Vinck. One of the most difficult times was shortly after bringing N home. Anyone with kids can tell you how hard it is to deal with a baby that is difficult to console. With N it was more challenging because instead of saying to myself I can buck up for a few months to get through this season, we really have no idea when the season will end since there is the potential for so much cognitive impairment. de Vinck’s book is the story of an essay about his brother of whom he states “Oliver could do absolutely nothing except breathe, sleep, eat, any yet he was responsible for action, love, courage, insight.” I don’t agree with everything in the book but it helped me realize that N was an opportunity for me to love and for my true character to be revealed and developed.
· Best song– Jason Gray “Nothing is Wasted” whose first verse is so hopeful and understanding:
o The hurt that broke your heart And left you trembling in the dark Feeling lost and alone Will tell you hope’s a lie But what if every tear you cry Will seed the ground where joy will grow.
· Best Movie- Saving Mr. Banks- I’m not even that big of a Disney fan but this is a beautiful movie full of redemption and hope.
There is so much more to say and many more names I could mention. Please hear the gratitude I have for each of you, named or not, who have loved us during this time and will continue to love us in the future. I am so thankful for all the ways that light has broken through the darkness.
And seeing Kathy step up as an amazing mother and fierce advocate, big brother Mac naturally loving his little brother and the gift of Nathan himself are certainly among the best things that I could hope for and continue to cherish.
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!