We've had a rough few days. I want to make sure that through all of this communicating about Jarod and his disease that I stay frank and honest. I love my boy with all my heart and he can be the most loving, encouraging boy, but then Sanfilippo rears its ugly head. It breaks my heart to see Jarod get so frustrated, so angry, so sad. The smallest of things can set him off and then we are in for it for the next half hour...or more.
Last week he had some boys from the neighborhood stop by to play with him. This was fantastic because there aren't many kids who want to come over and play with Jarod. He can be difficult. It was such a heart-warming scene for me. All three boys were playing soccer in the backyard and Jarod was laughing and loving life. The two other boys were being so understanding and patient with him. It was fantastic. And then those boys had to go home for dinner. Jarod was devastated. When he has an emotion like sadness (or anger or disappointment) he can't always control it. What started as crying as the boys left quickly escalated to screaming, and kicking, and hitting me, and spitting at me, and walking through the house throwing anything at the wall that he could get his hands on. Now, he's only 75 pounds at this point, but he is solid muscle and it's hard to control him when he gets out of hand. I had to sit him next to me and hold his hands to stop the hitting. And use my feet to block the kicks. I tried to get his mind off of his disappointment by offering all sorts of suggestions of things to do or watch. Still, it took a half hour for him to calm down and when we get done with these episodes I'm physically and emotionally drained.
I hate Sanfilippo Syndrome. As a parent you not only have to live everyday with the black cloud of knowledge of what the future holds, but it makes the present difficult, too, by making your child so hard to be with at times. There are good days and bad days, but the bad days are reeeeeaally bad.
And then we'll have a day like Saturday when Jarod was more peaceful and loving. He kept coming up to me that day and giving me hugs. As we were driving to Holland for a family function he said "Hey Mom...I love you." Just like that. Out of the blue. And for that moment things feel okay.