Oh Chele - I feel for you right now. What you are feeling is normal parental concern - whether you are your daughters birth parent or not!! You are this little one's Mom and the vision you had of the future with her has changed forever. It is a big adjustment, but not as bad as you are thinking right now - please believe that. If you have not read the Welcome to Holland thread then I can strongly recommend it. It is about how when you have a child (by whatever means) before you even have them in your arms you have a future mapped out for them. When you learn there is a deviation from normal ( diabetes, NF, cerebral palsy, learning disability - gosh even just not being good at playing the piano) and thereby your plan of the future deviating - your child hasn't changed but your vision of your life as a family has. It won't be a bad life but it will be different than what you expected. Keep in mind that although she most likely has NF she could just as easily not have had NF but have gone off the rails in her teens, or turned to drugs, or decided not to go to university as you had hoped.
Life with NF is joyful and full and fulfilling.
The number of CAL's is no indicator for how a person is affected by their NF. Some people have loads of CALs and that is all, others have few CAL's and other issues. There is a blood test available that detects NF1, but it is relatively new and not 100% reliable. The doctor is right - even if it was positive it wouldn't change her treatment plan - watch and wait. If it was negative, it is not 100% reliable, so you would probably still watch and wait. The test is a simple blood test, so not overly problematic for your baby. If it would make you feel better and your insurance covers it, or you can afford it, why not ask for it so you know what you are dealing with? (Search UAB on the threads).
It sounds like your doctor is very switched on and that is a very good thing - many are not. He or she will know what to look for and to assess that she is reaching her milestones.
If your signature name is anything to go by you are not exactly ancient .... (younger than me!
). Children keep you young. (They age you too
). By the time she is 20 you will be in your mid 60's. By then you will have provided her with a good education. Because you know about her NF you will have taught her skills to manage her health and her budget and her life. Even if you do drop off the perch you will have provided well for her - far better than her beginning predicted. She is a lucky little girl and you are lucky to have her.
How do I know? Well, my son is affected by his NF both from a learning and a health perspective. We were so lucky we found out early. Because we knew he could have a learning disability we recognised it early and have done everything we are capable of to assist him with that. His learning problem is quite significant, but he saves better than his older, more capable, brother; he is the most organised person in our house; he cooks and manages his room; catches public transport so can manage the timetable etc.; and he knows when to let us know if he is unwell. At the age of 6 months when we first learned of his NF I could not have predicted this. I thought it was the worst thing that could happen to my baby. I lived in a haze for ages. While I still wish it wasn't our reality, we have all earned to live with it. I do so badly wish he didn't have NF and all of the things that have come with it for him. I can't change that, but I can be helpful to him by teaching him and thinking about the future and having a plan for how he can live with his NF and all its permeatations. (Is that a word?). Very recently we were faced with the possibility of losing our son. That gave me a lot of persective. He has had a wonderful life so far. Even in the most mundane moments, he has truly lived. His having NF has made me appreciate every living, breathing, boring even, moment with him. I don't think he is spoiled - its just that sometimes when he is driving me nuts and making me mad, I can actually appreciate the normalness of the moment and feel so fortunate that I know that. It is difficult to put into words. And our story is more the exception than the rule. Most people with NF are not much affected by it. They may have CALs and later in life a few bumps. That's it.
I really do know how hard this is for you right now. Whatever you are feeling is okay to feel. You have the possibility of a wonderful life together ahead of you, please try and look past her NF (but not ignore it) and really embrace this wonderful opportunity to parent your child.
Una in Oz