When I first started this blog, my twin daughters had just been born 13 weeks early. One had stopped breathing shortly after being born and was down for 8 minutes before the doctors got her back and we were prepared by medical staff to expect severe brain bleeds and other severe damage from being without oxygen for so long. The other daughter was born with a large omphalocele birth defect which medical staff said would have its own share of severe complications and possible devastating genetic/chromosomal abnormalities and due to what my doctors told me was “every pregnancy complication in the book,” I learned that had barely survived their arrival. I felt blessed and lucky to be alive and that the girls were doing better than to be expected — the daughter that coded? Despite their best efforts, the doctors could not find any brain bleeds or other significant repercussions from being technically dead for 8 minutes. Much to their dismay, they were also unable to link the other daughter’s birth defect to any larger genetic or chromosomal issues. I was without a doubt confident in the presence of God and the fact that He was at work in my life.
I decided that our story was too good not to share and decided the best way was to start a blog, though I wasn’t sure how to organize it all. Then I was inspired by a pastor friend who preached one Sunday on Joy. He quoted someone else as saying that “Joy is the settled assurance that God is in control of all the details of my life, the quiet confidence that ultimately everything is going to be alright, and the determined choice to praise God in every situation.” I thought: “That’s it! I’ll theme my blog around staying joyful and trusting God in the midst of all our circumstances as we navigate being new parents to twins who were born premature and one with a birth defect.” My whole plan for the blog was to share a bit about what was going on in our lives every week, whether it was good, bad or ugly, but always connect things back to joy, to trusting that God is in control and knowing without a doubt that everything will be alright. This would serve two purposes, sharing our story and helping me keep perspective. It was easy at first, the ideas and inspiration flowed from my heart, through my fingertips and onto the screen. Joy abounded and then intensified after we were able to bring H home after a 109 day stay in the NICU. Our hope was that N was not too far behind but then the days began to pile up on each other. And then she got pretty sick and we discovered just how severe the damage to her lungs was. We learned that due to the prematurity N has severe broncopulmonary displaysia and pulmonary hypoplaysia due to the omphalocele. We got several new diagnoses as well: mild pulmonary hypertension, craniosynostosis and we are constantly battling UTIs, colds and bacterial lung infections. Each new thing has made my assurance a little less settled and made home seem that much further away.
When we reached a hospital stay lasting 365 days and celebrated their first birthday in a conference room at the hospital something shifted within me. Today as I sit here on day 420 of N’s hospital stay (now transferred to the PICU) unable to be with her due to illnesses at home, while she fights off another round of her own infections which are becoming resistant to antibiotics, I am feeling less and less of that quiet confidence and more and more screaming fear. There are days and moments within days that it feels next to impossible to make the determined choice to keep praising God.
But I have to….
And I do.
Though some days I am beyond unsettled and fear has me in its grasp so tightly I can’t breathe and praising God in that place seems impossible, I still do it. I still make space to settle myself, even if just for a moment, and cling to the stillness within that knows He is in control. I still drag my weary body to the pages of the Word and read over and over of His love and that love drives out the fear and I still praise Him because He is still with us, protecting us and walking with us and with God, we only have to summon up faith the size of a mustard seed and we can say to a mountain, “move over there,” and it will obey. With God what is impossible on our own, is now possible….
And Joy is renewed.