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Post by nolansmom on Apr 22, 2009 7:05:27 GMT -5
In the midst of this challenge we have been given, we often forget about what is good with our kids. One thing that has helped us cope with the good, the bad, and the ugly is telling stories about all the crazy things our son used to do. They seemed irritating at times, but looking back he was just being a boy times 10. I don't know if others have had this same experience, but there are many times I have something spark a memory and I find myself smiling. or laughing . Especially crazy when sitting in a meeting at work and somebody says, what is so funny. They just wouldn't understand why it is so funny to me if I did share...so I think it would be nice to hear about other's stories....we can learn how similar or how different our kids are... I will share just a silly story I have about my son. He is now 5. Starting when he was 2, he used to be in the refrigerator non-stop. Seriously, he would eat whatever wasn't sealed tightly in a bottle or container. Some things he would try only once, like onions. Other things he would try to eat through the container because he knew what was inside. Like pudding. One thing that really got an ugly face was hard boiled eggs. One time he took out an Easter egg and took a big bite. Through the shell. He was chewing and crunching, then he started to spit it out saying, "Ucky". We started duct taping everything shut around the time he was 3. Even the refrigerator. He tugged so hard on the handle that we were constantly having to screw it tight again. Oh how I wish we had that rambunctious little guy back.
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Post by nikkiv on Apr 22, 2009 8:19:33 GMT -5
Thank you, Thank you, Thank you for this post. So many times I have said to my husband, "no one we talk to ever has one positive thing to say....ever". Even though there are soooo many bad things to put up with when dealing with this disease, there is still so much happiness too!!! You just have to learn to look for it. That is the only way I could deal with all of this. Look for the little miracles
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Post by nikkiv on Apr 23, 2009 15:17:53 GMT -5
I had some "good" yesterday. Yes, my daughter had a seizure like episode at school right before a field trip, but she also lost her first tooth yesterday. It's one of those childhood milestones that I appreciate, regardless of my child having this disease. She's so cute giggling with her little snaggle tooth grin. She has another tooth loose so we'll get to experience it all over again in a few days. Even though she may not exactly understand, we did the tooth fairy stuff and everything. She had a special new toy under her pillow when she got up this morning....
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Post by nolansmom on Apr 27, 2009 12:07:18 GMT -5
awesome! We have two loose teeth as well. They are getting pretty wiggly. I think we will do the tooth fairy as well. ;D
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Post by nikkiv on May 1, 2009 12:34:19 GMT -5
nolansmom. Our children must be just about the same age. Mary Payton's birthday is May 28, 2003. How old is Nolan?
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Post by nolansmom on May 4, 2009 7:29:22 GMT -5
Nolan's bday is May 24, 2003. How crazy is that? We received our diagnosis on June 10, 2008. Almost 2 years to the date of his first seizure. How is your daughter? Let me know your email and I will email you...mine is leis81@yahoo.com.
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Post by Val Grady on May 4, 2009 11:43:22 GMT -5
My son's b-day is May 18 2004 and like you we found out about two years after his first seizure what was really going on. My email is valerie.grady@rrd.com.
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Post by Peggy D on May 15, 2009 8:52:07 GMT -5
I just came across this older thread. My son passed away 5 years ago at age 8, but there are two things that ALWAYS make me smile when I remember them. One, on video tape (thank God) is how when Christopher was a baby, using his little walker in the kitchen. We would roll him over by the far end of the room and the open the refrigerator door. His eyes would light up and his feet would go like Fred Flintstone and he would zip that walker right across the room so fast to get in front of the open frig to check out everything inside. It's so funny to watch that tape! The other also has to do with food. Christopher could climb out of his crib like a cat burglar and often I would wake up to find the refrigerator door wide open, Chris kneeling on a kitchen chair with an open container of butter, or sometimes the whipped cream. He was having a grand old time sticking his finger in the containers and eating the butter. As soon as he saw we were up, he would give this great big smile and tilt his head and say "hi Mom.." in the cutest little voice - acting so innocent hoping to not be in trouble. I would give anything to hear that just one more time. It is good to remember the things that make you smile, and to still find the good in each day.. Peggy
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Post by chawkins on May 15, 2009 20:59:24 GMT -5
The smile on Jeremy's face (8yrs old, JNCL) when he was telling me about his visit to the fire station today. He WAS disappointed that they didn't have a pole that he could slide down though!!!!
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Post by Tanya on May 19, 2009 11:35:06 GMT -5
I have one memory in particular when I was ready to pull out my hair at the time, but now I just laugh. My 2nd son (Deon) was 2 at the time and his older brother was 4(Terell). Deon had decided to rub himself and his older brother down with baby oil... It didn't stop there, he then continued to rub the coffee table down with the oil also.He proceeded to use the coffee table as a slide. Terell didn't know what to do so he sat there soaking in baby oil. There was baby oil EVERYWHERE.... how do you get it out of carpet? Way too funny, NOW!!! Just remembering how they kept me on my toes with a rag to clean up behind them, makes me enjoy every second with them. Be it good or bad.
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Post by nikkiv on May 19, 2009 11:48:18 GMT -5
Thank you everyone for sharing your "good" moments. I love reading them. They make me smile and I wasn't even there.
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Post by nolansmom on May 19, 2009 15:00:30 GMT -5
I agree! I can just picture my own kids doing some of this stuff. Nolan got hold of the sunscreen once....in the backseat of the car. It was everywhere.....on the seats, floor, in the door handle, in his hair, on his clothes, on his sister.....way too funny!
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