there are some lines from a song i love that ring true, today.
'there's the presence of thieves, who only want, to rob you blind.
they steal away, innocence and peace...'
years ago, we sat in a doctor's office. i had worried myself into feeling like we should see a geneticist. what i had assumed was the issue, was not. but, in some horrible way my fears were validated. there was something more going on. and so was the diagnoses of NF. and the year that followed, i regret. i regret the amount of time i focused on limitations and what if's instead of my daughter. i regret that i became so obsessed with checking for tumors that i could no longer be the one who bathed my child. i missed out on joy. innocence. peace. it was stolen from me when i focused on the thief.
then, maybe consciously, maybe not, i jumped in a second time already knowing things so that i could avoid shock. nobody was going to get me with a 'hey, by the way, she's got this going on.' but, we still ended up surprised. i handled it better though. and i didn't try to will away the delays. i just accepted them for what they were. sure, i would love for my stubborn little to stand up and walk already, but i'm not anxious about it.
and, today, i am fighting those thieves again. the words on their own seem small. there's this small thing. and that small thing. then this. then that. separately, they're no big deal. then my head goes through the list, one after another. my heart starts pounding. my brain whispers over and over, 'there's something more. something bigger.' but, i fight. i fight with all i am. 'maybe. maybe there is something more. but, i'll worry about that on the day we know. today, i'm going to dance. i'm going to read stories. i'm going to laugh at his little tongue play. i'm going to smile at how he is able to find tags on the inside of my shirt seem when he's nursing, or on toys, or even the stroller. i won't let you take from me that which i can't get back.'
it's hard. when you've lived in a world full of fears coming true, the thief known exactly how to get to you. he'll take today from you any way he can.
but, i will fight. i will fight by not reading the list of milestones he should have met. i will fight by not comparing him to other babies his age (or younger). i will fight by celebrating what he is doing. i will fight by presenting my fears to the Truth, over and over. i'll let Truth deal with it. Truth conquers the thief over and over. and, in the end, It will win.
Monday, September 21, 2015
Thursday, September 10, 2015
the return.
we have our computer back. finally. not sure that i'll have tons of time to write, still, but at least I can post some pictures.
life is crazy here right now. Jason is running a small business. working 75+ hours a week. plus he's gone a few times a week for other commitments. we are back into home schooling routine. little's respite nurse comes on the morning that we have co-op so I only have to take big and tiny. I still look around for my third kid around 100 times while i'm there trying to figure out which one i'm missing, and where she is.
big just turned seven. she loves all things fairy, and frozen, and princess. and pirate, and swords, and transformers. she's making great strides forward in reading and math. she's becoming less shy, and making new friends. she doesn't let me take her picture very often, but when she does she is pretty much always making a ridiculous face of some sort. she loves helping in the kitchen and is getting really good at cutting with knives and using the microwave and stove. she's a skilled two wheeled bike rider. she loves helping out with her brother, and being a mother hen over both her younger siblings.
little is about 95% potty trained. she tells us more and more often when she needs to go. she is signing in full sentences, and using more new signs every day. still no closer to walking, but hey, who doesn't love having an almost four year old to carry around all the time. she can climb well, so there's that, that makes our lives more adventurous. she enjoys hitting tiny in the head, poking his eyes, grabbing his nose, and attempting to bite his fingers if he gets them anywhere close to her face. she has also mastered climbing into the swing and bouncy seat. she radiates joy, and is about as ornery as they come.
tiny is 8-1/2 months. he's growing well. loves nursing. not so interested in table foods. did I mention he loves nursing? he's rolling both ways and close to sitting. he does p.t. once a week for some delays. he sleeps pretty well most nights. he is still a pretty laid back little guy. he's started having separation anxiety (which really just means, 'why is my mother not the one holding me at this very moment). loves baths. thinks shilo is the funniest person ever. he just sort of fell right into place in our family like he's always been there.
and me. well, over all i'd say i'm doing well. i'm tired. perpetually tired. I hear that some day my children will all like sleep. for now they tag team night and early morning waking as some sort of torture ritual so i'm too tired to say no to things I normally would.
i'm starting to feel like i'm managing stress and anxiety better than I have since around shilo's hospital stay some time ago. that being said, I was diagnosed with shingles yesterday. so while I emotionally feel better, apparently the stress of a husband who's gone a lot, homeschooling, potty training, doctor's appointments, parenting, house keeping, and life in general has taken it's toll on me.
even with all those descriptions, i'm enjoying lots of things about where we are in life right now. so, i'll share those instead.
life is crazy here right now. Jason is running a small business. working 75+ hours a week. plus he's gone a few times a week for other commitments. we are back into home schooling routine. little's respite nurse comes on the morning that we have co-op so I only have to take big and tiny. I still look around for my third kid around 100 times while i'm there trying to figure out which one i'm missing, and where she is.
big just turned seven. she loves all things fairy, and frozen, and princess. and pirate, and swords, and transformers. she's making great strides forward in reading and math. she's becoming less shy, and making new friends. she doesn't let me take her picture very often, but when she does she is pretty much always making a ridiculous face of some sort. she loves helping in the kitchen and is getting really good at cutting with knives and using the microwave and stove. she's a skilled two wheeled bike rider. she loves helping out with her brother, and being a mother hen over both her younger siblings.
little is about 95% potty trained. she tells us more and more often when she needs to go. she is signing in full sentences, and using more new signs every day. still no closer to walking, but hey, who doesn't love having an almost four year old to carry around all the time. she can climb well, so there's that, that makes our lives more adventurous. she enjoys hitting tiny in the head, poking his eyes, grabbing his nose, and attempting to bite his fingers if he gets them anywhere close to her face. she has also mastered climbing into the swing and bouncy seat. she radiates joy, and is about as ornery as they come.
tiny is 8-1/2 months. he's growing well. loves nursing. not so interested in table foods. did I mention he loves nursing? he's rolling both ways and close to sitting. he does p.t. once a week for some delays. he sleeps pretty well most nights. he is still a pretty laid back little guy. he's started having separation anxiety (which really just means, 'why is my mother not the one holding me at this very moment). loves baths. thinks shilo is the funniest person ever. he just sort of fell right into place in our family like he's always been there.
and me. well, over all i'd say i'm doing well. i'm tired. perpetually tired. I hear that some day my children will all like sleep. for now they tag team night and early morning waking as some sort of torture ritual so i'm too tired to say no to things I normally would.
i'm starting to feel like i'm managing stress and anxiety better than I have since around shilo's hospital stay some time ago. that being said, I was diagnosed with shingles yesterday. so while I emotionally feel better, apparently the stress of a husband who's gone a lot, homeschooling, potty training, doctor's appointments, parenting, house keeping, and life in general has taken it's toll on me.
even with all those descriptions, i'm enjoying lots of things about where we are in life right now. so, i'll share those instead.
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