Hello, I hope I am not bothering you too greatly, but I have a question for all of you - sigh… My husband has Neurofibromatosis (NF) but daughter had a DNA test done on her when she was born - thankfully the DNA test showed that she didnt have it. She is 9 and a half months old.
We noticed recently on her a lighter colored “spot” for lack of a better word, and after speaking with our doctor determined that there is potential that it COULD be a “thumbprint” macule. It is located right under the left knee - outer side. It is not completely white - or really in the shape of an ash leaf - it is just a lighter pigmented spot.
Now, obviously, she only has one of these, and no other clinical manifestations (that we know of) and more than likely she does not have this disease, but frankly I"m OUT OF MY MIND WITH WORRY.
We have an appt. to see a pedi. dermatologist, but basically the bottom line is that he/she is going to say that without other clinical symptoms (which dont happen usually until 2 to 5 years of age) we will just have to “wait and see.”
We can do a DNA test on her to find out - and we are considering having this done.
Anyway - I went to a priest today. I have been so distraught. I have read the Bible, and talked to friends, and everyone just tells me I should just “trust God.” But how is it that He says in the Bible…ask in my name and you will receive but people dont always receive what they ask for? I would ask that my daughter is healthy - and she may be - but what about those people who ask for cures, etc. in His name and dont receive?
I feel also like I am being tested. That I didnt do well coping with my husbands illness, and now God is testing me again, and my daughter has to suffer because I’m being tested…do you see what I mean?
The priest today just told me…pray. sigh. Ok - that isn’t theologically enough for me to sink my proverbial teeth into. I want to talk to someone about this - and I’m MORE that upset that that is all he told me. I was crying in his office, and he just said “pray” and let God come up with the answers. When I told him, what am I supposed to do if something horrible happens, he just said to submit to God. But that isn’t comforting or helpful if you can understand? This is the ONLY TIME I’ve ever been to a priest individually except for confession, and I feel horribly let down.
Can someone here help me? Offer me words of theological advice? Comfort? Anything? Please.
We have been through so much with my husband’s NF - he is only 31 years old and has tumors all through his left leg. We are obviously in a different “place” than many other parents due to our history and our total white knuckle fear about this. We thought we had dodged the proverbial genetic bullet when we found out she didnt have NF, now to find out that she may have TS is almost unbearable.