Can't sleep

It’s 1:00 in the morning and I can’t sleep.

I know I haven’t talked much about Benjamin and his medical problems, but it’s been on my mind and I feel impressed to write it down. When Ben was 2-1/2 he was diagnosed with partial-onset seizures that occur in the frontal lobe. They manifest in his hands, arms, and trunk by an obvious shaking.  Most of the time he has pretty good control of it; he walks and talks through most of them, but sometimes he can lose strength or control and fall hard. He has between 5 and 20 a day, and has had them since he was a baby.

As soon as they found the seizures on the EEG they ramped him up on medicine. He’s been on 4 different medications, in several different doses and variations. The seizures had already slowed him down a little in most of his milestones, not concernedly so, just enough that we were watching. But, after a few months on medication he turned semi “autistic”. I call it that, because I don’t really know how else to describe it. He stopped being able to look at me in the eye, became very withdrawn, and very aggressive. He threw the biggest tantrums, (oh, the tantrums!), and he went from a vocabulary of about 100-150 words, down to about 10-20. I wish I was exaggerating.

He was pulled off that culprit medication last summer. After that, we noticed Benjamin was “back”; he was my sweet boy again, but his speech development had taken a big hit. He went to speech therapy for a while where the therapist was working on trying to get Benjamin to say 2 words in a row; for example he was saying “huh truck” instead of “fire truck”. After a while I noticed he was starting to finally put 2 words together. He would say, “Mickey Mouse”, “fire truck”, “apple juice”, and “chwo-ket milk” (chocolate milk).

He has slowly been talking more and more since then. We bribed him with food. “Ben, say chocolate milk, please” and so on, until we got more than 2 words in a row. Dan and I would take him out alone because we noticed if he got away from his chatterbox sister he talked more himself. Now he and his sister chatter together all day. It’s amazing and I love it.

This week, Benjamin has been talking more than he ever has before. He has been putting several words together on a regular basis, and even had 2 sentences this week with 6-7 words in it! He woke up one morning and saw his plate on the table from the night before. He remembered that he ate all of his dinner and said, “Mom! I fin (finished) my dinner all gone!” Then, a couple of days ago, during a time the kids were all taking turns whining and throwing tantrums, Dan called to Benjamin, “Ben, come sit with me.” Ben responded, “No! I’m sitting in mommy’s yap (lap)!”

Obviously, I know he has a ways to go, but I can’t help but think of how far we have come and I am so overwhelmed with joy and gratitude that I just wasn’t able to sleep and I had to write it down. I am so proud of my little boy. He is a trooper, and is such an example to me. No matter how much he struggles with everyday, he is still so happy, and so sweet. He has recently started coming up to me, putting his arms around me and saying, “I wub you, Mom!” I waited a long time to hear him say that, and it brings me to tears thinking about it now. I am one grateful momma tonight.