One month in, two months out, three months in, two months out, four months in, and from then on one or two months out with weeks in the hospital is how our life went. We stayed, for the first year of his life, in the hospital eight months total. That’s four months out of a year where I got to feel like Callan’s mom. Looking back I have one single regret, fear. In those flashbacks and memories I remember the paralyzing fear that kept me from being fully with him. I tried to be perfect in every way so I wouldn’t be the reason my son’s life ended. I was terrified to make any mistakes. The terror I felt in and out of the hospital made me scared to hold him for fear of hurting him, made me afraid that the oxygen would run out at any moment, made me paralyzed when his oxygen saturations dipped, and made me scream silently when he’d have to go back into the hospital. EVERY time we were admitted I felt as if I had failed him somehow, so I tried to do better. I knew every medicine he took, when, how much, what it was supposed to do, and even what color EACH medicine was, but I was terrified to give it to him in fear that I wouldn’t give it to him correctly. His nurses gave his medicine because I was afraid I wasn’t good enough, I wasn’t educated enough, and wasn’t intelligent enough to take care of my own son. I let insecurities take away a big part of his care because I was so convinced I wasn’t enough for him. If I have learned anything within the two years he’s been gone is that I wish I had held him more, I wish I had stepped in more with the medical aspect, and I wish I would have found a voice for myself when I disagreed with someone who was directly dealing with his care. I fought for him in every way I knew how, but I was scared to mess up. Trying to be perfect for him made me miss out on being the advocate I feel he needed (though I did have to yell at a few people to get his needs met sometimes I still feel I had no voice). No one is perfect, and I know I did the best I could. He had a wonderful team of nurses, doctors, surgeons, cardiologists, and social workers; he was well taken care of. I know without a shadow of a doubt I did what I, as a mother, should do, but I also feel I should have been more confident with myself and that starts with throwing out the word PERFECT. So my advice to the more naïve me would have been to cut that term loose. Be a warrior, not a perfectionist. FIGHT. Fight for your child’s need to be met, fight to hold him even though he’s covered in wires and you’re terrified to accidentally unplug something, fight to give the medicines even if you feel you need supervision at first, because the more you do it the more proficient you’ll be. Fight the people who tell you things you don’t believe and get second, third, or fourth opinions. You and your child are a miracle. It’s a miracle each day you both get up and do the impossible. He breathes and you fight. Don’t let anyone take your voice away, because when it’s all over all you’re left with is the what ifs. Don’t have regrets and let your terror take the only thing you’ll have. That’s my one mistake.