Mighty Lessons

For those of you following my blog, I have referenced a dear little friend from St. Louis, Oakes Ortyl, and his amazing family in the past. Unfortunately, last week Oakes valiant battle came to an end. Anyone interested in his story can go to the blog his parents have kept.. Greg and Becky, his parents, have created The Mighty Oakes Heart Foundation in his honor to help families dealing with congenital heart disorders. They are planning a great celebration of his life this Saturday, starting with a morning mass and spending the rest of the day at the Worlds Fair Park. I'm disappointed that I can't attend, but will be celebrating with them, wearing my blue and joyfully remembering all of the miracles that were part of his 16 Months with us. Those who have followed Oakes story were asked to share with the family the lessons they have learned from Oakes. I feel blessed to have been one of the few people outside immediate family and hospital staff that actually met this amazing little man. Following is what I sent to Oakes parents as a reflection of what I have learned from Oakes:

As I reflect upon the lessons I've learned from knowing Oakes and following his story it is almost like unweaving a blanket. At times it's difficult to trace where each heart string begins. So I suppose the lessons begin with how I met Oakes and his amazing mother Becky. In May of 2011 my precious nephew Ronan was transferred to St. Louis Children's Hospital in the hope that he would be able to receive a life saving lung transplant. We had lost his beautiful baby sister, Phoebe, just the year before to a rare lung disorder that they shared, ACD. All of our hopes were in this slight possibility for a chance at life. As we live in Michigan, one of the difficult aspects of Ronan's journey was being away from him and his mother, my sister, for extended periods. The first visit after the initial, harrowing transfer over Mother's Day weekend was filled with joy. Ronan was stabilized, on a transplant list and we were cautiously optimistic with the limited odds for a successful outcome. But the most amazing aspect of that particular trip was the change in my sister. You see, there are some amazing moms out there; that in spite of the worst experiences a parent could face, were willing to open themselves up to others. To share in this scary journey that involved lung transplant. The joy, sorrow and fear experienced by each only intensified when you became close to other babies and their families. And so Becky and Gregg have endured ups and downs, amazing joy and far more losses, as many of the sweet babies journeys were not to continue here on earth. I am humbled by the genuine love and care these parents give to one another and I know that it is this spirit that is reflected in the joy we see in so many of the pictures of Oakes and Isla. If I tug at those strings a little bit I find some that definitely are connected right to Oakes.

 First, joy and love is evident on the faces of those who experience the purest delight not in things but in being with one another. If you visit the Ortyls blog you can see the amazing pictures that have been taken. The way Greg and Becky look at Oakes. But especially the way Oakes looked at Isla. Delight and joy because of her presence. And I ask myself, do the faces of my family reflect this joy just by me being present with them? If not, what do I need to change about our relationship so that we are centered on the true purpose and meaning of our time together. I hope this will make me a better wife, mother, sister, daughter and friend. 

Second, every time I saw a picture of Oakes smiling my breathe would catch. I've experienced first hand the reality of babies in intensive care. They live with tubes, medication and discomfort for much of the time. And yet, that beautiful smile. Filled with more and more teeth as he grew. What could possibly be so overwhelming in my life that I could not find something to smile about? If Oakes could smile, so could I. Even if there are times I have to smile through the tears.

 Third, I've learned that friendships that will last forever can be forged in the shortest periods of time. Place and circumstance can bind together people that otherwise may never have crossed paths.

 Last, I learned that real love and friendship is not envious. You see, we received word that Oakes would be receiving his lung transplant on the day of Ronan's memorial service. My brave, strong amazing nephew did not make it to transplant. Yet, in the midst of our sorrow there was hope. And joy. And wishing. That Ronan's journey would not be Oakes. That our pain and loss would not be Gregg and Becky's and Isla 'sWe rejoiced that day and shared with everyone the news, taking deep breathes with Oakes. There is comfort in the joy of those you love. There was no time for what ifs, there was only rejoicing that Oakes journey would continue. Every moment of Oakes journey my family was believing, and praying and breathing life for Oakes.  Oakes has taught me that joy and sorrow are a shared experience of our humanity. To realize that we are all connected in this powerful way because of our shared experience is a lesson that can be applied beyond the boundary of Oakes time here with us. It is a thought, that if put  to action, could just maybe change the way we view our world.  Gratitude today for the amazing mothers of angels who inspire and influence me daily. To my sister Kim, my friend of strength Pamela, and my new forever friends Chrissy and Becky. Your angels live on in remembrance in my heart.