Julia's last appointment for the time being was her eye dr. Everything was totally fine. She needed a stronger prescription for her left eye but other than that everything was great! Julia sat still, listened and really did a great job. I was so proud of my ladybug. On the other hand if she wasn't always a patient she wouldn't be so good at sitting still with lights pointed at her eyes.
I have to admit that I'm so used to watching something, worrying over something that I asked the dr 3x the same question. Are you sure she's ok? I almost expected that since every other appointment was fine, this one would be bad. It's terrible but true. We have been watching so many parts of Julia we've become accustomed to this way of life, living in this state of flux. I basically crashed after that appointment. I went to bed and slept for about 15 hours. I was just physically and emotionally exhausted. I haven't slept well in the 3 years since Julia was diagnosed. The first year was grief sleep- I call it that. I tossed and turned and wondered if this was really happening to me. As I woke up I'd think this cannot be the truth. Then I'd have an awful feeling and realize it was. The second and third year were anxiety sleeps. I would sit straight up at some point very anxious, my mind racing. I would check on the kids, kiss their sleepy heads, go on the computer, try to fall asleep, I wouldn't be able to so I'd plan a new fundraiser. That was also a great distraction. It consumes free time and keeps your mind busy with productive thoughts.
I'm entering a new time, one called live, sleep, watch and try not to wait. A time where I can breath a little easier, not like a regular mom but I'll take it. I hope its not asking too much to stay this way forever.
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i'm glad it went well...at our eye doctor appointment about a month ago the doctor sighed at the end and said "well..." and there was this huge pause...i thought i was going to puke..."your daughter will need glasses..." i could've hit him. Glasses...i thought you were going to tell me she had a tumor...glasses are like a big peice of cake with icing on top!! I love that you call Julia ladybug...for some reason we have always called Abigail noodle buy (I have no idea what that means) or just baby bug! Hmmm..maybe there's something to that...peace and love from the mann family
ReplyDeleteI came across your website by accident while researching info regarding Asperger's Syndrome,a link regarding NF appeared which took me to Ladybug's site. My youngest son Chris (16) has NF1 and his older brother (18) has Asperger's.
ReplyDeleteChris was diagnosed with NF1 at age 2 after our peditrican recommended we get it ruled out. It was so unexpected as the only known symptom at the time was his increasing Café-au-lait spots. So...my heart felt the anxiety you spoke of as I too have known this pain.
I want to say to you that it's normal and I think it is wonderful how you have chose to deal with it by raising awareness and funding! What a positive way to handle such a hardship that effects your entire family!
I also wanted to share with you the positive side of Julia being diagnosed so early in spite of all the dr appts; now she is cared for and watched carefully,any new symptoms will be found which will provide a better chance of appropriate treatments and less hardships than she already endures. We cannot change what is but know you are doing all the right things! Because Chris also had MRI's every 6 months his brain tumors were diagnosed early which meant when needed he recieved the proper treatments which saved his life. He is now a healthy,happy normal teenager!(Even with NF1)
Good luck and know other mom's understand and are out here for support.) Another great source for info & support regarding NF is NFMidAtlantic@aol.com which is located in Md.