NICU Aftermath | Portland Wedding Photographer

I assumed that life after NICU would eventually get back to normal... so I thought. Let me start by saying that NICU changed me... FOREVER. Every day is a challenge, as I am faced with the decision to take a leap of faith and expose my micro-preemie son to the world, or to sit at home where he is safe from illness. I took a chance this last month and we ventured out more than normal. Sure enough, Enzo caught RSV; which can be extremely dangerous and even deadly for preemies like him. By the grace of God, Enzo has been recovering and seems to be on the mend towards 100%, but still, I feel caught between a rock and a hard place. I cringe at the idea of being over-protective, but yet I know that his fragile body can't handle the world of illness like other children. So what does this mean for me? Well, I realized today that I am lonely. Utterly lonely. 

I think I started what I call, "my lonely season", after loosing Leo in 2009. Friends trickled in and out of touch, not knowing what to say, and I was a hot mess of emotions... hell, I still am if I'm being honest. Friends turned their back on me hoping things would "pass", but instead I evolved into this new person. Everything I endured with Leo became a permanent part of me and there was no denying I had been changed. For better or worse, loosing my baby boy changed my heart forever. Until you've experienced it yourself, you can't truly fathom the hole that is created in your heart, and that hole means that people just don't understand.

I have been longing for someone, ANYONE who just "gets" how I feel. By the grace of God, it is rare to find another that has gone through loosing a child and again, having a micro-preemie who survives two years later. I desperately plead my story to others, just wanting to fit in, and all my story does is highlight how "outside the box" my life has become. It is hard to swallow. 

I used to be in a Mom's group. I used to be able to take Nevaeh to the zoo every week and to play at the local playground. We would enjoy story time at the library and trips to Portland as a family. Now I live in an invisible prison, wanting so badly to fit in with my mom "peers" and yet unable to put Enzo at risk. Life is lonely, and so I wait. 

On days like today I fight tears. I want to see my friends. I want to be selfish and enjoy a day out in the world, but I can't. Weighing Enzo's safety against my own selfish wants is ridiculous, because in the end, I will protect my precious boy no matter what sacrifice I must take. I'm the mom you see in the grocery store, with her son in the ergo front pack, with baby's head and face concealed, who tells people to please back away from him. I'm the mom that stays up all hours of the night praying his tiny lungs can bring his body enough oxygen. I'm the mom who's biggest fear is having another one of her babies die in her arms. I'm the mom who takes her son to occupational therapy because they are worried he has signs of cerebral palsy. I'm the mom who sits and stares at Enzo's every breath, always fearful of loosing him. I'm the mom that has to explain to family, friends, and strangers all these things, and then be looked on with blank stares and shallow words of wisdom. I'm the mom who no one understands, who is called a recluse; the mom who leans on God because He is the only constant thing I have in this world. 

Jesus Christ is the same yesterday, today, and forever.

Hebrews 13:8

 And so here I sit, and wait, and pray. Life for now feels on hold, but I know the day will come when things are different. As I walk through the valley of the shadow of death, I will fear no evil. For Your rod and Your staff, they comfort me. The lonelier we are, the closer we are to God and His purpose for us. So, though this time pains me and my fear gets the best of me more than I'd ever like to admit, I'm still here... looking forward to what He has in store for my life, my photography business, and my legacy.