Warning: Venting TODAY!!

HOPE!?!...I am in a bible study group for "special needs" parents. hmmm, I'm not sure how or why one child is classified as "special". I never got that....implying that a healthy child is not "special"!?! I can't think of a better word for children who require more doctor appointments that the average child, but I'm not too sure if "special" is the best word.

Anyway... the bible study is lead by one of the neurologist in the office that Christopher visits. ...For those of you that may not be familiar with why we have "neurologist" added to our team of docs.. Christopher was delayed in most of his milestones (rolling over, sitting up, crawling and the most obvious ones were walking and talking). At two years old, the only words Christopher would say were"eat" and "dada". Christopher's neurologist (not the Bible Study Neurologist!) told me that because Christopher's oxygen saturation levels were low the first couple of months of his life (prior to his heart surgery) and since he had been in a coma for an extended amount of time - he probably has brain damage. At two years of age, he was operating on a 9 mth old level. Brad was not at the appointment with me and in order to do brain scans he would have to be sedated. Because of his heart issues, he is in a higher risk for having complications with anesthesia. Since I was alone and don't handle stress well - I voted no brain scan. The information from the scan would not correct the problem - we would just know...yes, the lack of oxygen has damaged his brain. Duhhhhh. After I refused the brain scan the neurologist proceeded to tell me that Christopher is mentally retarded... One may ask...hmmm...How in the heck does she know that if I just REFUSED the brain scan!!?????!!

This may also remind you of the time when I was pregnant with Jacob (just a few months after Christopher's open heart surgery in Boston!) and the Maternal Fetal Doctor told Brad and I that Jacob had Trisomy 18. Trisomy 18 is a fatal chromosome disorder. He went so far as to tell us that IF Jacob was born alive he would not live past his first birthday. Most children with this disease are stillborn. After Brad and I refused to do anything about it (other than pray and cry) the next month we were told...the chance of him having it was much lower (still high - but lower than the previous month). Of course our little Jakey did not continue to grow according to their standards and he was "taken" early. But look our Jacob now!! Healthy and 18 months old....hhmmmm, isn't 18 mths more than ONE YEAR??????

One more story...When I was pregnant with Jacob, during the time we thought he had Trisomy 18, Christopher had an infected eye and was very congested. It was on a weekend and right after his heart surgery so I was concerned. I made an appointment for one of the doctors at his pediatrician's office (not our normal pediatrician) and she diagnosed Christopher as having neuroblastoma. A fatal pediatric cancer that attacks the spinal cord and stomach. She wrote down the name of the disease for me to start reading about it and told us to make sure we come back to see our normal doctor on Monday morning. I was too stressed to even look it up, so Brad did. He called me from to work to explain what it was. hmmm, after he read the symptoms we realized that Christopher did not have it. We went to see our pediatrician and she apologized for Dr. Fletchas ignorance and assured us that Christopher did not have anything more than a cold! hmmmm....one may ask..."How do you confuse the common cold with neuroblastoma?"

OK...so back to the bible study...next week the topic is Hope. In order to prepare for next week the comment was made, "I feel that doctors have an obligation to give the reality of individual situations, and not provide parents with a false hope or false sense of security that children will be fine or normal" I love that the Doctor is leading the bible study and I found it very ironic that she would not want to provide parents with a false hope or false sense of security. When I feel that many of the doctors (especially in our case) are doing just that! Don't get me wrong...I DO want to know the diagnosis for my children but don't put unnecessary labels on children that hamper their self-esteem and give them excuses to give up without any medical evidence that something is wrong. After hearing the murmur, performing an EKG and echo cardiogram, Christopher was diagnosed as having four complex defects in his heart. I kept listening to Dr. Brumund explain the disease and the whole time I was wondering...Is this life threatening? I didn't know how to ask him other than by blurting out "Is he going to die??" and I was too scared of what the answer would be. I love that Dr. Brumund has never given us a false sense of security or false sense of hope. He is by far the most trusted Doctor on our "team". He has been honest and given us the life expectancy of most children with this disease BUT also gave us hope and told us how fast technology changes and he has encouraged us to let Christopher live a "normal" life...just like any other child. You never know how long your child will live (healthy or not!) - but why not make the best of each day you do have? If they enjoy being active, let them. If they want to try something new, let them. Let him live!! I think by doing that we have seen how Christ lives in and through us. How blessed we really are and how faith (or lack of!) can change things!!!

It is hard not to believe in God, when you see my "nine month old level", "mentally retarded", cardiac defected, "cancer" kid that is running, climbing, speaking to me in full sentences and acting like any other 2 1/2 year old child. Sure a lot of it has to do with the incompetent doctor staff misdiagnosing things. But I think a lot of it has to do with our "Hope" and Faith. God has some created some very talented physicians, therapists and surgeons and for that I am extremely thankful!! And by the way...Jacob seems to be just fine too! ;) He does not have Trisomy 18!