Robert's Journey, A Personal Reflection

I wish I could say the reason that I haven't talked more about my baby boy is because he's been completely healthy. The real reason, however, is that I needed to understand that my son's story was more than the sum total of the suffering in his life.  You would think this was an intuitive thought but when you are being crushed by medical bills and illness, it isn't always as simple as that.  I received so many touching messages through the Facebook page and my blog about him, I knew it was time to update y'all.  I used to think it was my husband and I who were getting Robert through his pain but I now understand more fully than ever that Robert's stubborn will to survive has brought him through the first 14 months of his life.  If I had experienced a glimpse during my troubled pregnancy with him that I would be holding him through dozens of hospital stays, surgeries into the double digits and so many painful procedures, tests, therapies, medications and illnesses that we have overcome in his short life I would certainly have been too depressed to get out of bed in the morning.  And then the guilt. Knowing my own birth defect contributed to his. There isn't anything I could have done about it but it's a difficult knowledge. That's the good thing about chronic illness or birth defects though; slowly but surely it becomes the norm.  It's never easy, but you build your suffering muscles. And you continue to continue and after a while, in many ways it feels no different than caring for your other child.  This month brought us a diagnosis of esophagus nerve damage and aspiration so we have spent a lot of time fighting to keep him off a permanent feeding tube.  It's not glamorous or even particularly interesting; thickening foods and holding his chin to teach him how to swallow; sweeping his mouth for food he can't feel is there and then chokes on; stretching his little bound muscles; taping or bracing him; helping him touch foods he is frightened of, helping him past post traumatic stress or trying to keep him a real person to the countless nurses and physicians who care for him.  We have lots of set backs and lots of triumphs but he is still growing so it's totally rewarding and our family is so supportive.  I still have a lot of hope that one day, when he is a big, tall, pimply teenager we will look through all his surgery photos and he will laugh and be grossed out by them and remember what a fighter he was at the start of his life.    xoxo Agnes