#rarediseaseday

We have been given much over these last few months, years really. Much, indeed. One of the gifts in this new season in Pennsylvania is home health nurses to help with Adam. When we adopted Adam, we knew that there was a long road ahead. I don’t believe we were blind to it…as his physical appearance gave evidence to the vast needs he would have ahead of him. But I had no idea all the blessings that would come along as we cared for those vast needs. I never imagined the people who would join us, hand in hand, in caring for Adam. I never imagined the ways both of our families would embrace Adam as their own, bestow gifts upon gifts on him, and boast of their pride in him. He was the first grand baby on both sides of our families. I never imagined staff from UNC flying to India to visit us (namely, Adam). I never imagined a family in NC opening their home to us (TWO YEARS IN A ROW) to stay in while Adam received surgeries. I never imagined the church families who would stay in touch with us and desire to be a part of Adam’s life. I never imagined. But how quickly I forget…He told me this is how it would be.

“Now He who is able to do IMMEASURABLY MORE THAN WE COULD ASK OR IMAGINE…to HIM be the GLORY”. That was is what brother Paul wrote in Ephesians. I still remember on a hot, muggy May day in 2006, a best friend of mine came over to my parent’s house, sat with me, and prayed that Scripture over me before I went on my first trip to India. She then gave me a stack of index cards in which she had gone thru and named all the prophecies of Christ AND their fulfillment. She gave me a stack of His faithfulness, to lean on. God certainly did more than I could ask or imagine…and far beyond just that 3 month summer trip.

And here I am, TEN YEARS LATER, and Abba is still at work. He is still doing infinitely more than we could ask or imagine. Have their been struggles and deep valleys? Oh, most certainly. He did not guarantee their absence. In fact, I believe He guaranteed their presence. “In this world YOU WILL HAVE TROUBLE. But TAKE HEART, for I have overcome the world” (john)

So as I reflect on our move to PA, I am humbled as I see how our God cares for each of our family members. But, today, I am just talking about Adam. And specifically, I am talking about nursing care. We have a team of 4 nurses who alternate shifts in caring for Adam. Each of them have a story too…stories that speak to the resilient women that each of them are. Stories of  refugee camps and stories of radical love in caring for their family. Each of them are women of incredibly valor and I get the joy of having them in our home 12 hours a day. We only looked into nursing care for Adam because in order for Adam to get regular therapy, in school, he needed a nurse. Mainly, he needed a nurse because he has a trach and gtube and that is hard to manage in a busy environment without a trained nurse given that as her specific task. So we started looking. We had no idea, until Adam was admitted last December, that their were so many home health agencies. We did interviews, chose a company, and a week later started having nurses in our home 7a-7p. It has been amazing how sharing the tasks of medical care for Adam has freed us up to spend more time of him without being his nurse/therapist/doctor/etc. Do we still meet those roles in some ways? Yes, absolutely. We still feed him, clean him, change his ostomy, etc, etc. But now he doesn’t get frustrated with us always challenging him to do different things like walk, eat, talk, etc. Now, others can help us with that task and he can sense us just as mom and dad. Its been amazing.

I learned yesterday that Feb 29th was #rarediseaseday. I am not sure why I never knew that but I am glad I know now. Adam, your diagnosis of Bartsocas Papas Popliteal Pterygium Syndrome not only expanded my spelling abilities…but it vastly expanded my worldview and understanding of beauty. You, my son, are brave beyond measure. You are a gift to our family that I never knew we needed. At school last week an assistant asked one of your nurses, “does that boy do ANYTHING but hop?”. Your  (awesome) nurse got real defensive of you and took a chance to tell the assistant all that you can do (and I love her for it). But since when was the measure of a life what we can and cannot do? Since…sin. Thats just it. But Jesus came and He tore down that dividing wall of hostility and He said that life isa  gift and grace is a gift and beauty is a gift and purpose is a gift. So whether all you do is hop or whether your intellect surpasses all who have been before you…whether your delays put you in once class or your advancements put you in another…none of that has any measure. You are beautiful son. Your rare disease may define you this side of Heaven…but you are a treasure in your Father’s eyes. And in ours. Love you Adam. And way to be the 5th person in the world with your condition. Not many can claim that;)

#babyadamupdate #babyadam