** I originally wrote this a year or so ago and just now publishing. Some stuff may be out of date
One of the best things about being a parent of a specials needs child is I am able to spend many magical moments with my child, most parents do not get.
Rebecca is a snuggler. She loves to be held, cuddled, kissed. In fact, she has little to no fear of strangers, providing they are willing to cuddle her. This is a huge blessing when it comes to doctors visits. If they will hug her (and perhaps let her play with their name badge), she considers them a friend.
One of my favorite times of the day is when I go in at night to give her medications. She has already been asleep a couple hours usually. I enter her room and open the doors of her custom made special needs bed,
Becca is fabulous about taking her medications. Usually you just get her to open her mouth and you can slip them in, and she just swallows them. She barely has to wake up. Most adults don’t even have that easy of a time taking medications.
I love to nestle up to my sleeping daughter. I get to give her kisses and hugs while she sleeps. I sing her songs, including one I made up just for her. “I love my Becca doodle babe” always gets a big smile from her. It is a time to tell her how much I love her. This is a time to let her know how beautiful she is, and for her not to let anyone ever tell her different.
I know the time will come in her life when the world will be cruel to her. People will be downright horrible to her, all because of her special needs. I want to build up her self esteem so high that no man, woman or child can every break it down. I want her to believe she is beautiful, that God made her Perfect.
I love talking to her about what she might be doing the next day. For instance, reminding her the next day is PE and she gets to see Ms. Barbara. I talk to her about being good at school, and listening to her teachers. I remind her to show them how smart she is, and do her work.
Or maybe it is a Friday night, so I get to tell her that tomorrow is the weekend and she gets to spend all day with Mommy and Daddy.
I speculate on what she might be dreaming about, or what she will dream about. Perhaps she is dreaming about running and playing on the playground at school. Maybe tonight it is about a giant pool of gummy bears.
I am blessed to just sit there beside her bed for that time. maybe 10 minutes or so each night. Just 10 minutes of nothing but Rebecca and myself. The quiet stillness of the night. A time to put my arms around her and pray for her total healing.
lifewithbecca 
Have you ever heard of anyone else with NF1 and infantile spasms? My son has these as well (now age 6, and LGS). There is a webinar you might be interested in coming up May 1st on NF1 and seizures.
http://www.nfnetwork.org/understanding-nf/webinars/all-new-webinar-understanding-seizures-in-nf1
Rhonda – actually yes I know of I think two other people. (maybe 3 – I forget which of my Facebook NF friends their child also has seizures). Nice to meet another parent with such similar diagnosis. How is your son doing?
Sorry so late responding… He is doing much better than last year. Severely delayed but happy and slowly developing. What LGS support groups do you belong to?
This post was touching. You and Becca are so fortunate to have each other. You are a loving mother and are putting her on the right track. Three cheers!