I have never been a creature of habit.

I enjoy new experiences, typically don’t order the same thing twice, and haven’t exactly had a solid relationship with a routine. 

My circle of friends has been wide and varied, and I like to think of myself as somewhat independent.

I do not plan.

In fact, plans annoy me.

I like to see where the road takes me, figure it out as I go along, and make it work.


This used to be true.

Now, most days are planned to the minute.

I have an endless mental “to do” list that is categorized by topic.

My calendar is filled with appointments.

We live and breathe by a schedule and our nightly routine is nearly sacrosanct.

I have to plan outings in detail.


Packing to leave the house includes medical equipment, positioning equipment, and extra sets of everything. 

Most excruciatingly, I have to leave for outings and appointments extra early.

We do not easily get in and out of places, and loading up the car is a definite process.

Figuring it out as I go doesn’t cut it anymore.

There are no quick stops for feeding tube equipment or suction machines.


When we go somewhere overnight, the back of our car is packed with more equipment, machines, and supplies than are probably available in some hospitals.

Becoming Danny’s mommy has fundamentally changed me.

Becoming Danny’s mommy has forced me to become more rigid, plan more thoughtfully, and to think about contingencies.

I remember attending an engagement party when Danny was six months old.

It was one of the first times I left him, and I was feeling pretty anxious about it.


I watched as people laughed and danced, and I thought, “I feel one hundred years old.” 

I reflected and wondered if I would ever feel carefree again.

Would I ever be the person I was before?

As I talk to my friends that have babies, I realize that we have lots in common.

While our needs may be different, becoming a parent fundamentally changes everyone.


All parents have to plan ahead, make sacrifices, and put their children’s needs first. 

I see friends and family that have large families and I wonder how they ever get out of the house.

I see friends with toddlers that get into everything and have typical toddler meltdowns.

This parenting gig is no joke for anybody and I do not own the right to feel like our road is any more difficult that anybody else’s.

Our road just looks a little different. Maybe it is a little bumpier, but no one has it easy.  


We are all doing the best we can. 

We are all changed people.

We are all in this together.

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