04 January 2013

hang in there. just sit with it.

since the first time i heard that quote "in three words, i can sum up everything i've learned about life: it goes on" (robert frost), it has stuck with me. it has sorta melded with my favorite john mayer lyric: "and if you never stop, when you wave goodbye, you just might find if you give it time, you will wave hello again."

it's how i have aimed to live my life. minimal freaking out. just go with it, let myself sit with whatever i'm feeling at any given time & them move on from it. don't force anything. as much as i would like to control everything, i cannot. we can't stop this wheel; life keeps on moving.

i had heard that when a parent faces the diagnosis of their child's illness or disability, there's a matter of time that needs to pass before the parent can just move forward. i suppose it's kind of like a grieving period of sorts. life is not and will not be how you think it is going to be. sometimes, you have to let that dream go & accept other realities.

i'm learning this with ruby. at 16 months, i called her pediatrician.

"ruby's not walking yet. but still taking steps. should we be worried?"

"no. i'm not worried. keep practicing with her & we will see how she's doing at 18 months."

17 months. 18 months.

dr. cafaro (our pedi) asked me all the usual developmental question at ruby's year & a half appt. yes, yes, & heck yes to all of them. EXCEPT.

walking. no walking. no jumping. no squatting. no balancing. lots of falling. at first, the pedi recommended we see how she's doing at 21 months. but then i had ruby try to walk for her & she saw what a struggle it was for ruby & she agreed a PT assessment would be helpful. she assured me the PT would help & we left the office.

it's been a little over 3 months since ruby started PT. within two weeks the PT told us that she wasn't seeing progress as soon as she thought she would and encouraged us to seek out a neurological assessment. i was frustrated bc i wondered how much progress could one expect to see in two weeks?? but looking back on it, i'm glad it was recommended.

ruby is still not waking. she will be 22 months in 10 days. she takes steps less than she used to, but still does sometimes. we have had her fitted for SMO's, an orthotic that gives her more stability in her ankles & helps her to stop pronating her feet as much. she has made progress with them, in some ways.

it's funny. when ruby first started PT & people asked me about her progress, i thought "well, she's still not walking", so no progress so far. but this week in therapy, we (myself & her therapist) were talking about how much more ruby squats, how she will stand up for 10 seconds & not fall, how her core muscles are much stronger. it's these small skills that other parents take for granted. it is so hard for me to watch other kids just stand up & take a step, catch themselves from falling over. literally, i could BLOW in ruby's face when she's standing and she'd fall over.

why? why? WHY?? why do i have to learn some bullshit life lesson about being grateful that ruby's not in a worse situation? or that i should be ok with this bc this is the life that's been dealt to her? that's crap. she's a little girl. with no reason to have to face struggle.

but here we are. almost 22 months & ruby can't walk. if i am being honest, she definitely is not walking as much as she used to. this? it kills me. there were days that i felt so defeated. responsible for her lack of progress & worn out bc I spend every minute of our lives trying to make whatever activity she is doing into something that's therapeutic.

i don't remember when it changed; my attitude. maybe it was just before christmas. i realized ruby's other development was not slowing down. in fact, she is soaring ahead. we have conversations in the car that are basically comprehensible (to me, that is). she is testing limits. she's learning her colors and shapes. she's typical. and she's HAPPY.

what more can i ask for? she's a happy kid. she sees other kids in her daycare walking & running and she wants to, too, but she doesn't get upset about it. she gets from point A to point B just fine & she is like any other 22 month old other than the fact that she doesn't walk. i know i have to enjoy ruby, where she is at. her neurology appointment is on january 22nd. my guess is that we will move forward with ruling out muscular dystrophies. hoping those won't come back positive. my hope is that she will end up being diagnosed with congenital hypotonia, meaning she has low muscle tone & we will keep working on supporting her until she makes more progress.


so, wow. this has been a long post. i knew it would be. it's a lot to get out. as a parent, i never imagined my daughter or i would have to experience this. no one else in my family has gone through this. i had no reason think i would ever experience anything like this. but here we are. sitting with this experience, letting it settle with us, and pass as it may. finally finding some sort of peace and acceptance. i don't know what this journey brings, but i do find solace in the sentiment that "it goes on" no matter what. i don't know what power there is out there that's controlling this all, but i know i'm not the first to go through it and i won't be the last. there's something comforting in that.

thank you for letting me get this out. to the few people that read this, thanks. i have been a fool to bottle it all up for so long.

i will, of course, update as anything new re: ruby's progress occurs. until then, i will keep blogging about life as we know it: the perfect refrain.

6 comments:

  1. I hear you. I'm incredibly proud of you, little sister. Sending you three ALL the love.

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  2. I hope you get the answers you're looking for! I am glad you posted this though. I like that phrase. "Just sit with it". I need to remind myself of this often as we are now entering the terrible twos with Noella and there are many days of meltdowns and frustrations but I often forget that this too shall pass. I need to learn to just sit with it and that life will go on.

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    1. hey lady -
      thanks for the commment and your well wishes. it's a tough lesson to learn - the patience part of parenting, just hanging in there. but i hear ya. ruby does the same things - whining, crying, throwing herself on the floor. i'm totally with ya. one day we will miss these moments, as crazy as that sounds. we gotta do our best to enjoy them, knowing that the bad AND the good moments are fleeting.

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  3. Awww.. I hope Ruby's doing well and that she starts walking soon. My little one didn't start walking until 17 to 18 months so it took some time.

    take care and hang in there Dany!

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    1. thank you! we will hold out hope and keep working with her. :)

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