I have sung the same song. Braided the same beautiful hair in one long braid. Asked the same daily questions. And given a peck on the forehead every night for over 10 years. We have a bedtime routine and it cannot be broken.
My daughter has autism and needs that kind of routine. Even if we are in a hotel states away from home or I am in the hospital we still need to walk through our routine. Once upon a time I felt the burden of that daily routine and the NEED to have it the same every single day.
I am a fly by the seat of my pants. Jump in the car and drive until you find the end of the rainbow. That’s how I ended up in the Navy and met the man of my dreams.
The Lord blessed us with 4 children that are on the autism spectrum. They all need a steady routine. It’s their love language.
**Autism Awareness Month: a peek into how my family with serious illness deals with autism and building a loving home. **
Realizing this was our children’s love language and distinct way they felt safe and secure released the guilt and pressure of the daily routine.
Chris and I find interesting ways to keep the kids on track. Such as when I am in the hospital I can FaceTime. We sing the song as daddy braids her beautiful hair for me. He tucks in the girlies without me while I lay in the hospital far from home. But we keep the routine and the safe feeling the kids get from that routine by working as a team.
Right now I am supposed to be in the hospital getting more testing. But you see I have the option to stay home. Hospice is watching over me and with a consultation we decided that going away to the hospital for probably 4 nights would not be worth me missing the bedtime routine. The day to day living with my lovely family.
A day is approaching that our routine will be destroyed. Daddy will have to deal with everything on his own soon enough. Today I will be a wee bit selfish and stay home collecting snuggles and bedtime kisses.