Oh.MY. I think I could write a novel on FEAR!
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| This was on the wall in our room at the RMH for Severin's 2nd OHS. Before any surgery , procedure or owie we tell Sev to Be Brave, and Be Strong, you can do hard things |
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| My Mantra |
When Sev first came home he took a lot of visual attention. His vocal chords were paralyzed. So he didn't cry out loud. He would cry, turn purple and desat. If I was not constantly watching him I could miss this and it would prove fatal for him due to his delicate anatomy and the re plumbing of his heart. I tried to let him sleep in his own bed. After a few nights on his floor next to his crib we set up a bed in his room for me. He had a feeding pump that had to be watched. It would constantly get clogged, or stop pumping. BEEP! He could not maintain his oxygen saturations. He had a pulse ox on 24/7 that alarmed anytime his O2 levels dropped. BEEP! I would have to adjust his oxygen tank. I would try to sleep but for the first 4 1/2 months I did not. If I did sleep it was more of a pass out- brief nap from utter exhaustion. I wore my glasses all day and night so I could always see. I had deep indentations in my head and nose from them. I decided long ago if Severin was going to die he was going to die in my arms. Eventually he would end up in bed with me, in my arms, with all his monitors and O2 tank within reach. This was acceptable because if one day I didn't have him to hold, I knew I would never regret this parenting faux pas. He still sneaks into our bed at least 3 times a week, NO REGRETS! It was a very long time after his second OHS that I felt confident enough to leave his room. I cried a lot. I prayed a lot. It took all my mental energy to not worry, and not be afraid. I had to play out every possible scenario in my head. Thom had to give me a Priesthood blessing to help me through my fear. I had to give up control of the outcome and that was and still is the hardest thing I have ever done.
And yet I watch my Son live FEARLESS! I love it! I want him to always push the limits. He is HOPE!
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