Riding the bus!

Fall has happened so quickly.  It all started with Grace going to school.  Kindergarten.  I’m sure that I was one of very few moms looking for a bottle warmer for her classroom so she could eat at school.  It was an odd feeling….but something we needed to have.

I found pajamas that fit over her braces so that she can participate in pajama days when her class earns them.  She is walking through the halls in a gait trainer.  She loved playing with a parachute in PE.  I get an email once a week tracking her every movement – pictures of Grace carefully attached to the end.  I know where she’s been, but I don’t know about interactions she’s had.  Every now and then I hear a story and I love those.  I try so hard to write them down so I won’t forget.

At her IEP meeting I was quickly impressed with how well they had gotten to know her.  She was appreciated!  They have plans for her too.  Big plans!

I went with her class on the pumpkin farm field trip.  Saw her classmates in action.  So much energy!  I met one girl who in some ways is the reason we moved to Johnston.  This girl talks to Grace.  To her.  Sounds like a little thing, but you’d be surprised how many people talk to the person with Grace…not actually her.   This little girl is having a birthday party on Saturday….a princess one.  This will be Grace’s first non-family/friend birthday party….I’m a little freaked…I so badly want her to fit in….but we can only be what we are……and we are going to try.  This little girl about to be 6 makes me want to try.

For this reason this year Grace is Cinderella for Halloween.  There’s ton’s of glitter.  Kevin doesn’t personally appreciate the sparkles that fall on him – but I think it’s good… it makes me smile…. Grace does sparkle J

Grace played fall baseball.  Miracle League.  I love baseball.  I love that it’s outside.  I love that the anthem plays before each game.  I further love that its usually sung by the players on the field…often quite off key and with unique timing… you can’t help but smile!    I love that everyone cheers for everyone.  I love that Graham jingling some bells in the stands isn’t disruptive, the announcer works it sounding like Christmas into his comments.  He also notes each and every time Grace makes it around the bases on her own two feet!  She often gets passed…and very often is in the act of “stealing” a base while the other batters are up- because it does take a little longer.  This is accepted without question.  At times I’ve thought the downfall of baseball is that her helpers aren’t consistent, but Kevin and I got good at the elevator speech about Grace….and she experienced many helpers…and they experienced her.  This is something she’ll have to get used to.   Finally,  I just have to say before I leave the topic of baseball that if you are ever feeling blue, believe that the world is unforgiving, and that nothing will go your way…..come to baseball –hope, excitement, and possibility are present.

Grace is dancing again.  We continue to be blessed by the love of Jill, Jacque and Chloe.  They work so hard for Grace to dance.  Grace continues to love it.  We are even trying tap.  I think she’s still not quite sure why her feet are making noises.

Dance.  Amazing.

We are also horseback riding.  Su and Sterling put us through our paces each week.  Grace sits up so tall.  I hate that soon it will probably be too cold….especially since Grace doesn’t really like to wear gloves.   Grace has an awareness about her when she’s riding Sterling.  She’s so observant of the world around her.  Su always has a few tricks up her sleeve to keep Grace from taking it too easy, and each week I thank Sterling for the ride.

We’ve also been to the pumpkin farm as a 4 person family.  Handling 2 kids and 4 pumpkins between the two of us made Kevin and I laugh.  Four pumpkins now sit prettily outside our front door.

We’ve been to Minnesota twice to see doctors.  Grace is less farsighted than she used to be.  We’ll finish the major overhaul of her epilepsy regimen over the next ten weeks or so.  The epileptologist gave us a pretty good pep talk …about how good Grace looked, and how we are doing the right things, asking the right questions, wanting the right things for her….he said that we are good stewards of Grace.  I felt like that was such an amazing compliment – I don’t always feel like a good steward but oh how I want to be.

This has really been more about Grace than Graham.  I already worry that maybe I shouldn’t share as much about him – as he’ll have more of an ability to decide himself what to share and when.  But if I could tell you just a few things…he’s 10 months old, moving, making noises, eating food, hugging, kissing , dancing.. He has the most wonderful smile and a giggle that magically erases stress.  He’s a teddy bear this year for Halloween a “Teddy Graham”  heehee…… better do it now before he can object J    He’s got some kind of magnet that draws him to Hoover, and a desire to play with whatever Grace is playing with.

As I close – I just need to admit than I’ve been thinking that Sometimes I should write about the more serious stuff.  There is so much to caring for Grace, advocating for her in the world, making sure that she’s seen and recognized.  I have strong feelings about all of it.  Things to say but as with most times I sit down to tell you how we are, that’s not the stuff I want to talk about.

I want to talk about glitter and teddy bear costumes.  The anthem being sung off key.   Horseback riding, ballet, and birthday parties.   Because on the tough days…and there are tough days……it’s that stuff that keeps me going.

Joy

 

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