I have people that email me from time to time in regards to Jude's journey. They generally have a child that has recently been diagnosed with an issue and they are seeking answers. I try to be helpful but at the same time I try to be very honest. When you have a loved one that suffers a serious medical issue I believe you begin to bargain with God or fate. You pour yourself into the internet researching the diagnosis hoping to find a glimmer of hope. I did this for a long time. Then I met Dr Riela and I always pass along his words of wisdom. However I do believe you have to be in the right frame of mind and at the right point in your journey to be receptive to his words.
1. "No one can put an expiration tag on Jude but Jude." When we came into his office we had been told by a prior hospital that Jude wouldn't live past five years old. While shaking his head Dr Riela was blunt and honest. He mentioned the above sentence and then said not all doctors go off statistics. He explained very bluntly that Jude would never be normal. He said it doesn't take much more than a bran stem to be a baby and Jude may not ever do more than smile and giggle. Boy he hit that on the head. However he said that his responsibility was to take Jude as far as he could go with the best medical care possible and that it was up to Jude to let us know when his body has had enough.
2. "Don't focus so much on the diagnosis". He explained a diagnosis is someones best educated guess and that not every patient responds the same to every diagnosis. For example he said "Yes Jude has Lennox Gestaut but what does that mean to you as a parent? It means to me he needs to be treated with certain medications and his healthcare is a bit more complex. We treat the symptoms and move on knowing the complexity of the case.". Again he is very to the point. Basically he was saying he knows Jude has a seizure disorder but for him it really doesn't need a label.
I rarely talk to Dr Riela anymore due to hospice taking over Jude's case. However I know if I picked up the phone to call him he would know Jude's case and would personally call me back. I think it's important to establish a lasting good relationship with at least one medical professional. Someone that you know will be there to answer questions and take care of your special needs child. Someone that doesn't require an office visit just to answer a simple question of concern. Someone that truly cares. We were blessed with several doctors like this but Jude's neurologist and pediatrician stand out the most. His pediatrician had lost a special needs child and was very connected to Jude. I think you need a professional who is honest and tells you how it is even if you don't want to hear it. I believe one of the most serious offenses to our society is sheltering women that are pregnant and not educating them on possible issues. There is no reason to scare anyone but there is a reason to educate. Teach them about milestones and what to look for and when to seek help! Hospitals should have readily available resources and packets for families that get that first dreaded diagnosis. We left the hospital feeling bewildered and overwhelmed and had no idea where to turn. Hence the reason we poured through the Internet. We would have loved a packet of places to call regarding counseling, state help, insurance help, and more. Something regarding what your next steps may be after a frightening diagnoses would have been helpful.
Jude is doing fairly well. He had a pretty good day yesterday and is still maintaining his oxygen levels. He is still pretty pale but I guess that's the nature of his illness. He is very happy and that is always a good thing.
Thank you for your continued prayers they are much appreciated.