When the baby gets fussy, he is usually thrust at me as someone says, "the baby needs you." He sees me, stops crying, and calms down to rest in blissful peace while I nurse him to sleep. This is why most moms have more than one child. A sleeping contended baby makes us feel appreciated, whole, cared for, important, needed, and irreplaceable.In Christian's life, someone else gets him ready for school and puts him on a bus, the very unhappy bus driver and matron drive him to school, at least 5 school staff work with him throughout his day, then another nurse takes him off the bus and usually puts him to bed. Where is the mommy in that?
If it were my choice, I would do it all. He would be woven into the fabric of our day and it would be hard to tease him apart. Instead, it's like having an alternate universe where there are all sorts of opinions from how fussy he is, how he's sleeping, how his teeth should be brushed, what kind of hoyer sling should be used, how supplies should be labeled, what types of skills he still has, and what types of medications he should be on. These things are my mommy domain, which has been trampled underfoot.
I love our support people - I do, and I can't do it by myself - I tried.
Here are some of the things that are cute when you are a baby and not cute when you are 9:
* Wearing a diaper
* Drooling
* Being in a stroller
* Being carried
* Fussing
* Having someone else brush your teeth
One of the happiest days for me in this whole disease process was surrendering to the school bus and choosing to focus on the kids that needed me specifically. Hiring our first private duty nurses was even better. And of course, the nurses and school staff need to have opinions on these things and they need to share them with me or it would be negligent and I would be angry.
And yet this boundary and sense of space wounds me deeply. It is an irreconcilable hole in my heart not directed at anyone or anything specifically because nothing about it can be changed, but just something that is intensely painful. I want to be the 100% mommy, and I can't be.
