Thursday, October 25, 2018

Birthday Appreciation

Today Freya is 7.

This pictures makes me feel so many things.  I think it is the ratio of head sizes, the reminder of how small and fragile Freya was in the beginning.  All babies are small, all babies are fragile, but some certainly more so than others. 

I strive to speak and understand in a way that acknowledges everyone's path and their struggles...reminding myself and my children that though someone looks to have things a certain way, we can never truly know how it is for the person.  And of course I believe that.

But mothering a child with special needs is different, it's harder - it just is.

I say this from the experience of having two other children who are not special needs.

I don't love them any less, or Freya any more, or vice versa.  I am their mother and I love them all as deeply and completely as mother's do.

But the expectation is that my other two daughters will grow up and create their own lives, that a crucial part of their development will be finding their autonomy from me.  Of course I will always be concerned for them and offer what guidance and support they will accept (and pray they live close or at least come visit often if they move away)...but at some point we theoretically hand them the keys and hope they listened well when we taught them about driving.

And yes, Freya will also want her autonomy, will have opinions and desires for her life just as much as the other two.  But, as things are now for PWS, her Dad and I will always be the drivers.

I think of how second nature it is becoming to quietly adjust the environment my daughter is in.  Casually stepping behind her as her friend picks her up (just in case they fall over as children do), distracting her when someone else has food and it is not time yet to eat, filling in the language gaps when she talks to a friend, initiating a talking game when children are playing around her and she has not been invited in nor has the energy to get up, the nightly hour-long meal prep for lunch the next day, finding moments in whatever windows for movement therapy or articulation practice.

I spend more time thinking about Freya, what she has and what she needs.  I evaluate her actions, monitor and attune to her emotions.  I am often off to the side, silently watching her interactions with her peers, questioning and thinking how best I can help guide these interactions.  I am thinking about meals coming up and what nutrition she needs.  I am gauging her energy level with what activities are approaching.

I see my friends whose children require more also.  I see them holding and trying to soothe children who don't yet know how to be calm in their bodies, I see them checking monitors every few minutes, timing trips to the bathroom around blood sugar spikes, I see them scanning the room for sensory irritations, or quietly shifting chairs out of the path of a specialized walker.  I know they are going home and searching the internet, ordering specialized books off amazon, calling doctors and implementing whatever therapies they can do themselves.  I know they are joining Facebook groups and seeking playdates with fellow moms who can relate.  They are fulfilling the normal parenting tasks, and then they are working overtime, always.

When I look back over these last 7 years, I am sometimes shocked to remember some of the obstacles we maneuvered; the fears, the doctor trips, the tests, the fight for GH, the visits to the ER, advocating for therapies, the paperwork, all the questioning of what Freya can be overwhelming to look at it all together.  But if I remind myself that we didn't tackle all of it in one day, that where we are now has been one gradual step in front of the other, and her future will be the same...then I can take a breathe and just rejoice in how far we have come.

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