Friday, January 29, 2010


So my grandson was in the hospital for a few days getting some tests done. Moses is eleven and he can't speak. He has seizures. They were testing for a particular kind of seizure activity that if he had, he could take medication that may help him be able to talk. So his mom and the rest of the people that are madly in love with Moses, we had a flash of hope that possibly he would speak at some point and his life would be easier. So he spent two days with about fifty 'Leeds' glued to his head to monitor his brain activity. The doctor comes in yesterday morning and says that Moses does not have the seizure disorder that they thought he may have. But he also says, he understood that we had hoped he could eventually talk, but we did not want him to have this disorder. He said it would involve a whole other pile of problems that would make Moses's life very difficult. That he might have been able to take the medication and speak, but the seizures would become horrific as he grows and it would cause him to be very sick a lot of the time. The Dr said that the seizures he would begin to have would be intense and often and could cause additional brain damage. So he would be able to talk, but his quality of life would not be good. Okay. We feel so, so relieved that he does not have this problem. But as the day rolls by, we are again faced with the fact, Moses may never speak. It's upsetting. Because we really did have that bit of hope. Then I guess we quickly accepted that this is what it is, and Moses is perfectly fine exactly the way he is. He is perfection. And after hearing of the complications of this disorder, we are so thankful that he doesn't have it. Don't misunderstand and don't feel sorry for him. This kid can communicate just fine. We are all learning sign language and Moses is very good at it. He is a very typical nine year old. When you are getting on his nerve, he points, as if he's saying, 'Walk away from here, just go, you're bothering me.' Or he'll put his finger up to his mouth and tell you to be quiet. If he doesn't want to do something he will shake his head no and if you insist the thing has to happen, he will run to his room and slam the door. When you open the door he will look at you, shake his head no, and point for you to leave. On the other hand he is the most loving, sweet, kind little boy that I have ever seen. Moses is the center of our family. Every decision we make is based on Moses. So, now we're home and he is home and we are back to our normal life whatever that is. He is seriously the best little boy in the universe. We are so, so lucky.


Jen Ellis said...

Hey lady - I just started reading your blog (is that 8 readers now?) and I love it. This one about Moses really touched me. I don't know if you know, but my 10 year old nephew (love of my life) is dieing of brain cancer. He is this amazing little man and it's so unfair sometimes. But I have to get off the pity pot and enjoy the times we have, right?
I so understand the whole saying about how you can either laugh or cry.. I choose to do my best to laugh!

Dina Kucera said...

Jen. I am so sorry to hear about your nephew. That is so, so hard for your entire family. The small children are so amazing they seem to deal better than us adults. And out of the crisis, you have to find little pieces of a life. And have a laugh. Thanks so much being my 8th blog reader. I'm going to set my sights on 10 blog readers? Is that too aggresive?