I’m a very black and white person. There’s no need for gray. Most anyone who knows me will tell you that one thing you can count on is knowing where you stand with me. If I like you, you know it. If I don’t, you know it and if I think you’re crazy…well, you’re gonna know that too. I rarely hold back and I call things like I see them. I’m loyal to a fault until you give me a reason not to be and then I’m gone. I’m extremely logical and have little patience for people with no common sense. I grew up with the mindset that you do what you have to do. There is no I can’t. That doesn’t mean it’s always pleasant or fun, but you gotta do what you gotta do. I always had wonderful parents and family that had my back through the hard stuff. That’s my grid.
When I was about 26 weeks pregnant, Hoss was diagnosed with a significant congenital heart defect. It was heartbreaking and scary. We had no family history of chd. We had no resources. We had no idea where to even start. But in my world, and through my grid, we had to get ready.
As we met with Dr.’s and got ready for his birth, the information coming at us could be so overwhelming. I’d think, “I can’t do this”. Then I would be reminded, sometimes by the Holy Spirit and sometimes by my Mom, that I didn’t have a choice. I couldn’t sit around and have a pity party because I had to get ready for a baby. His birth was frightening. Not traumatic in the way you hear of women who had horrific birth experiences, but frightening. There was no first cry because the NICU team immediately intubated him. I just laid there and prayed he would live long enough for me to get to hold him. When I finally got to the NICU I was told I couldn’t hold him. He had a monitor wire placed in his umbilical cord and it was critical and fragile. So I rubbed his head…it was the only thing that didn’t have an IV, monitor pad or something.
His first surgery was to connect his esophagus to his stomach so he could be fed. I got to hold him the night before for a few minutes. The surgery went fast and was a blur. We still had the first open heart surgery looming in a few days to put a shunt in his heart. It was supposed to take about four hours and took almost nine. It was long and gut wrenching and exhausting. It was about 2:00 in the morning when we were finally told we could go into the PICCU to see him. They warned us that his chest was still open so the Dr. would have quick access if needed and he was very swollen. As much as EVERY.SINGLE.FIBER of my being was screaming, “you can’t do this!”, my grid was screaming louder, “Go Now”. I went and I was able to make myself shut out the beeping monitors and look past all of the wires and the sponge covered wound in his chest and see him. I mustered my voice, asked the questions I needed answers to and started the next part of our journey. There was no time to sit in a corner and weep. I had a baby who just survived heart surgery to take care of. That’s my grid.
Six months later when the anesthesiologist carried him in her arms to his second open heart surgery I really had a hard moment. I kind of melted down the wall in the pre-op area and sobbed. I knew him so well at that point. It wasn’t my newborn who I loved but hadn’t really even held, it was my baby. I knew his coos and his cries. It hadn’t all been bubbles and roses, but for six months we had been getting to know each other and it was physically painful to think of the what ifs at that moment not knowing if I would ever have him back. Then Vinniehoney got me up off the floor, settled down a bit and my grid kicked in. This boy didn’t need a mama who couldn’t. He needed a mama who would. A mama who would pray, ask the hard questions, push through the fear to hear the answers, learn the medical stuff, manage the therapies and be so in tune to his little body that the she could detect the first sign of distress. He also needed a mama who could trust in the love of Jesus for rest, peace, wisdom and comfort in making decisions for him. That’s my grid.
By the time we were able to head home with him a month later, I had learned to do things for him that I would never have dreamed of knowing how to do. When the nurse came in and told me she was going to show me how to place his feeding tube so I could make sure it was in his tummy and not his lungs I thought, “Nope! If I miss I’ll drown him”. But I learned and I practiced for days with the nurses there to double check me and we were able to come home. I learned how to administer medicines through that tube, operate a feeding pump, connect a heart monitor, speak in medical terminology and measurements. That’s a new part of my grid.
While we still have some medical stuff to face with him in the future, we’ve settled into a stage of life that is ‘normal’. I don’t panic every time he gets a sniffle anymore and skinned knees are part of life. They are just cleaned VERY thoroughly and watched very closely for any signs of secondary infection. If you had told me seven years ago what all we would face with him, I would have said, “I can’t”. But then he came and my grid took over and I did so much more than I thought I could. My grid forces me to allow him to be a little boy. He runs and swings on the barn gate and sometimes he falls and he’s funny and smart and sweet. I’d love to keep in him a bubble, to protect him from any risks at all. My grid won’t let me. My grid says let him be a little boy. I have to. He needs to experience life at his own pace and find his own grid.