Not Ready

I had a bad day. As I loaded up the kids this morning to take Waverly to Jill's House for day camp, Oliver had a really difficult time climbing into the van. Typically he climbs right up to his car seat and waits for me to buckle him in. Today he just stood there. He moved his grip from the door to the car seat to the driver's seat. He put his foot up and then his knee. He looked confused. Later in the day as we walked back to the apartment, instead of walking right to our door as is his routine, he wandered into the courtyard. Again, he looked confused.

Obviously, I know he has Sanfilippo. However, he is higher functioning than Waverly and therefore my healthy little boy. Compared to his peers his is years behind where he should be. He has never truly uttered a word. I have never heard him say mommy. But I can always count on him to walk ahead of me, while I hold Waverly's hand. He will stop at the sidewalk, so I can walk him to the van. He runs ahead, straight to the apartment door to wait for me. Those little things mean so much. He is such an obedient little boy - my little helper.

Today, I saw glimpses of Sanfilippo. Reminders that things are going to change. I remember watching Waverly lose skills and see the confusion on her face. Little things she could do by herself all of a sudden became too difficult. I saw signs that those changes are beginning in Oliver. I am simply not ready for this.

I positioned his little hands - one on his car seat and another on the back of the driver's seat. I lifted his foot up onto the floor of the van. He remembered and hoisted himself up and into his seat. I buckled him in and gave him a big kiss on his forehead. Well done, Oliver.


Oh Shannon! I'm so sorry! I will be praying for strength and peace for you today.

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