I got a message from a dear friend today. I say friend but she’s more of a sister to me. So many times I have called on her for prayer and support. So many times she has been there for me. Being an amazing NICU nurse is a bonus. I can only imagine how the parents of the sickest of babies feel when their precious angels are in her care. She has the uncanny ability to know when I am hurting even when no one else does. Her looks and hugs speak volumes while her carefully chosen words are condensed libraries. In my experience, she is a rare gem… A medical professional who gets it. In the 25 years that I worked in the medical field I got to see first hand those who stand on both sides of that fence.
But now, as a parent of a medically complicated child with special needs, I see it from the other side of the desk. I understand on a deeper level the frustration expressed by the patients I dealt with. Much of my time now is spent fighting a system that is caught up in codes and protocol to the demise of common sense…Fighting for what is best for my child. Thankfully, Matt has a great group of doctors who listen and are open to my input about his care and are just as frustrated as I am when we hit a road block. Many of you who will read this are not so fortunate. My heart goes out to you but I am here to encourage you not to give up and not to give in.
So when her simple message read, “Sound familiar?” I knew I had to stop and read the story she had tagged me with. As I read through “Kate’s Story” I couldn’t help but feeling it could have just as well read “Matt’s Story” and I felt a kinship to the family. Then I found myself becoming angry. More like frustrated. Real food for real kids. What a concept! So why do so many of us find ourselves bucking a system that is supposed to want the best for our children? Do doctors and dieticians wake up each day and say, “Hmmm. I have 50 kids to see today. Let me see how I can mess them up.” Certainly not! The doctor’s and dieticians that have spent the last 15 years helping keep Matt alive are not ill willed. Many are simply uninformed. Others simply lack the time due to huge case loads. Still others find themselves with their hands tied thanks to a healthcare system that has become more about making money and less about caring for patients.
So where does that leave those of us who have the gall to insist that our tube-fed children and loved ones deserve and desperately need a diet that consists of real food? In the battle, for better or worse. We keep fighting, educating and spreading the word. When it comes to blenderized and pureed diets for people with and without g-tubes, we can’t quit even when we feel we’ve hit a wall. Our loved ones often can’t advocate for themselves. We must be their voice. Matt has been blessed with an amazing GI doctor. She has seen what a whole food blended diet has done for him and other patients she has referred to me for help. She too wants better nutritional options for families. But, to paraphrase a comment she made to me one day, the healthcare system today is a large ship and we are the rudder on that ship. If we simply hold our position for long enough, the ship will turn. Ever so slowly and often without notice. My hope and prayer is that our voice gets so loud that big companies that sell fake nutrition for a profit will crumble and fade away. Until then we will just keep doing what we do best…Loving. Caring. Sharing.
When you get a moment, read Kate’s Story. It will both encourage and inspire you on your journey.