The last six months have been an emotional roller coaster, to say the least! My husband and I have experienced extreme highs and ultimate lows with moments in between that span the emotional spectrum. The happiest moment of my life was also the worst; after laboring for 16 hours and giving birth to my son, I was left alone in the delivery room without the joy of holding my baby or experiencing my new family. My son was rushed from the room and my husband went with him. I had never felt so alone in my entire existence. After carrying my son for 35 weeks, as much a part of me as my own body, he was gone. The man who gave me the strength and the drive to remain strong the whole pregnancy, labor, and delivery, was gone. I cannot explain the horror of delivering a baby and being left alone with nothing but wounds to show for it. I heard my son cry before they took him away. That was the only beauty I found, and remembering his cry after he was gone gave me the strength I needed to get through the hours of surgery until I could finally see him.
Watching your child suffer is the most horrendous form of torture. The ultimate helplessness that you feel should be enough to kill you. Every instinct that I had as a mother had to be ignored and suppressed. I couldn't hold my baby, I couldn't comfort him, or kiss him, or even feed him. I only saw him through the plastic walls and ceiling of his incubator. His face was concealed behind the tubes and tape, and it was difficult to find my son behind all the medical equipment. It was overwhelming to say the least and my heart broke again and again for him. Each shattered piece broke into a million others and even those pieces found a way to break. The capacity to feel my son's pain in addition to my own was without limits. There were times when he would be in agony, trying to cry out and writhing in pain, and I would stand there with one hand on his head, one at his feet, trying to keep him still, and I would just cry with him.
I swear I held my breath the first 12 days of his life. Until his belly was closed, I didn't dare breathe, it was just too dangerous. His silo came undone twice and each time set us back again. The relief of his closure surgery was such a weight lifted from my shoulders. The 6.5 weeks he spent in the hospital were the longest and most difficult weeks I have ever faced.
With Joseph, life has truly been two steps forward, one step back. When he had his silo, it came undone twice. When he had his closure, the pressure was so great that he couldn't breath on his own until 3 weeks. When he was starting to get better and work on learning to eat, he became septic with a deadly infection. When he came home, we found out that a piece of plastic was left behind and he would need his 5th surgery. When he's growing and seeming to be fine, we learn that he is silently suffering from more complications.
Life with a special baby has so many highs and lows. Every challenge is a heartache and every joy is celebrated and felt so much more deeply. Each moment is truly valued and cherished. The bond that I share with my son is stronger than any earthly attachment and goes beyond simply that of a mother and child because of what we have struggled through and survived together! It is summed up perfectly by "the strongest steel goes through the hottest fire".
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