I spoke with Josiah’s nurse, Mindy, (I guess I just need to start calling her my friend, Mindy) yesterday. We talked for a while and I began telling her how much I missed the PCICU. Part of losing Josiah is losing this whole new life we had. After about 4 months in the PCICU Milo affectionately gave me the nickname, “the mayor.” When Milo would get back from being in Greenville for several days he would get the biggest kick out of how many new families I had met since he had left. So he started telling me that I was the mayor of the PCICU and he would comment on how happy I was being the mayor. He was right. I loved talking with other families, being a help when I could, praying for families, or just being someone that would listen.

See, I loved life in the PCICU, besides all that stuff about your child being sick and missing the girls and only seeing Milo half the week. All things considering though, having to be there for 8 months, I was happy there. I thrived there. I’m just figuring out now why I think that was. For the past year I have had a very focused purpose for my life. For the past year I have had to do all I could to care for my precious “heart” baby which also turned into caring for other “heart” families. I’ve spent a year reading and researching everything I could on HLHS and congenital heart disease. My two semesters of college biology has carried me a long way in being able to read and understand medical journals. I have read and researched everything from the normal HLHS to the very tricky idiosyncrasies of Josiah’s case. I have researched the connection between HLHS and ADHD along with other learning disabilities. I have researched physical therapy methods for vent dependent children. For 10 days after Josiah passed away I couldn’t bring myself to close some of the pages I had open on my google search engine. The night before Josiah died I was at home in Greer and I was doing what I always did, research. I had two different searches open. One was “prognosis of pediatric heart-lung transplant” and the other was “bosentan vs. sedenifiel therapy for pulmonary hypertension.” I had a purpose. I was not only reading to find out everything I could about Josiah but I was constantly looking for the newest treatments for many of Josiah’s issues. I was going to push the doctors to think of a new way of treating Josiah. Josiah’s condition was rare and a lot of his symptoms were unique so there was no "by the book" way of treating him. Most the the time when I would bring something up that I had researched on my own the doctors would say, “yeah, we’ve thought about that and this is why it won’t work.” I knew my place. I am a mom not a physician, but I do believe that my pushing and questioning caused them to think harder on Josiah’s behalf, because occasionally there was, “sure we can try that” or “no, not that but maybe this.” I wanted so badly for our story to be one where the parents, as advocates for their child, push so hard and found a way to heal their son. You know the kind of story that they make movies out of! But that was not the plan.

The other part of my purpose for at least the last 8 months has been in helping other parents going through similar situations. I love the PCICU waiting room. I remember my sophomore year in college when sitting in an ethics class discussing God’s greatest creation, His people, and how all people were created in his image, that I realized everyone I knew looked just like me. I remember talking about how God created all His people in His own image and as I looked around the room at my classmates I realized I was missing out on so much of who God is by only experiencing people just like me. I have only really been in community with middle class white people. But the PCICU waiting room is different. It does not discriminate. I would sit in the waiting room with hispanic families, african american families, wealthy people, poor people, single moms, families going through divorce, well educated or uneducated people. It didn't matter. We were all so different but we all had one thing in common. Congenital heart defects don’t discriminate. To me there was something beautiful about that waiting room. Something we can’t seem to create in our churches or in our neighborhoods and I loved it. I now miss it. I'll never forget one of the families I met in the waiting room. I struck up the usual introductory conversation with them. "Do you have a little boy or little girl in there?" "Is he doing okay?" "Are you guys okay?" That conversation continued for a while. I was surprised by their medical knowledge for being "new" to the PCICU. I finally asked if they were medical professionals and that's when they told me that they were both adult cardiologists! Oh boy did I feel dumb offering my advice! But I quickly realized that they were in the same position as us, just scared parents looking for someone in a similar situation. They were the nicest couple. I was able to help the mom out with questions about pumping and just be an encouragement that things would get easier. Again, it never mattered who or what you were outside the PCICU because on the inside we were all the same, moms and dads fighting for our child's life. Milo and I had the ability to minster there in a way we have never been able to before. Not that we were out looking for people to "get saved" in there time of pain. That's not who Milo and I are. But it was an awesome place to be able to share the hope that we have in Jesus Christ. Most the time not with precise words but through our actions and attitudes as we faced the same struggles. And then on the other hand we were ministered to so incredibly by just being around such a diverse group of people. I miss being with all those people, being helpful when I could or just being an ear. I had purpose there just being a smiling face and hopeful spirit in the midst of pain.

It is very painful for me to think there is no reason to go back to the PCICU. We knew that while Josiah was alive the PCICU would be a second home for us and we were okay with that. Obviously hoping that our time spent there would gradually get less and less as Josiah got older. Now we just walk away with no reason to go back. So again with the questions of what now. What is my "new" purpose? Where do I go from here? Time will tell.

Labels: 8 months old