Back in August of 2008 I took Serene for a routine well baby visit and at the very end of the appointment I just casually asked if they would take a look at these little spots she had. I assumed they would say they were simple birth marks and to think nothing of it. My how wrong I was. I had no idea that over the next 4 months I would spend hours on the phone (mostly on hold) trying to sort through what to do next. What we were told in August was that Serene most likely had something called Neurofibromatosis (NF) a condition that causes little brown colored spots on the skin and can cause tumors on the nerves over time.
By September we were in Cooks Childrens seeing a specialist but after a very difficult ordeal there we somehow were miraculously referred to Childrens Medical Center in Dallas to a fabulous doctor who gave us a much brighter outlook on Serene's situation. There were the cold hard facts that things could progressively get worse over time but all in all we were told that things looked good so far. In February Serene had an MRI to check for any tumors on her optic nerves which seems to be a common place for tumors to affect NF patients. We were thrilled to find that Serene had NO TUMORS!
Now here we sit one year since our first appointment with CMC in Dallas and our next yearly visit coming this Thursday. I have to say that it has been a long 15 months since the original diagnosis and my heart has soared at good news but often worried at things like slow development (NF can greatly affect development in children). This first year is very crucial in seeing if the NF has progressed or at best just stayed the same. Serene has more spots than she had last year and that has worried Jimmy and I both but we won't know more until her visit and another MRI which will most likely be before the end of the year.
As parents, it is so hard to not worry about your children every minute of every day. Serene in particular has had a worried momma since the day I got a positive pregnancy test. I had a miscarriage just 2 months before I found out I was quite surprisingly pregnant with Serene and so I was very scared the first probably 16 weeks that something might happen and I might not get to hold my sweet girl. Of course the worries of pregnancy are far eclipsed by the fears you have those first few weeks of life when you peak into their little bed a hundred times a night making sure they are still breathing. Now I don't give her night time safety a second thought but what I do think about is, will her NF get worse, will she get tumors, will she have any pain from the NF or will the spot on her little forehead get bigger and make her feel like she is not the amazingly beautiful little lady that she is?
But here's the thing, at the end of the day worry doesn't get me anywhere. It wastes my life and wastes the precious and fleeting moments I have with my amazing husband and three incredible children.
25"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? 26Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27Who of you by worrying can add a single hour to his life[b]?
28"And why do you worry about clothes? See how the lilies of the field grow. They do not labor or spin. 29Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you, O you of little faith? 31So do not worry, saying, 'What shall we eat?' or 'What shall we drink?' or 'What shall we wear?' 32For the pagans run after all these things, and your heavenly Father knows that you need them. 33But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.