Apr 23, 2013

{baby botanist & i say thank you}

so, if i am being honest, i couldn't look at any of your kind, encouraging comments for several days after my last post. i just needed some time to process what i finally wrote down. & plus i was nervous about sharing all of that!!!! once i finally DID start reading all of them though...i don't think i've taken quite so long to read thru each one ever before. everyone has their own battles, don't they? & i could feel that in so many of your comments. the rest of this week was still not, as events go, a wonderful week, but my spirit was still lifted & more encouraged. thank you! i responded to quite a few of your comments - i could have to each of them. i wish i could just sit & have coffee with each of you :)

well remember how i said in the midst of everything else in that last post that isaac loves plants? well i wasn't kidding. he helped me pick out a few for our herb garden a couple weekends back & we planted them all. some classics, & a few oddballs, just for fun: rosemary, mint, basil, stevia, chamomile - & strawberries made their way into the extra space, too. 
our indoors are finally at a stopping point, so we will hopefully be spending a lot more time on the outside, now. i think isaac will be okay with that...

Apr 15, 2013

{there are good days & there are bad days}

ready for a crazy, rant-like look inside my head? we're talking an all over the place, how-did-her-train-of-thought-totally-jump-there-i-am-not-following-at-all kind of look into what i've been thinking lately? & by lately, i mean on & off for the past two years...

in all the time i have been posting about isaac, i feel like we have been pretty...optimistic. i suppose you could say that. he has been our greatest surprise. he fills our live with smiles & laughter & fullness. he makes life seem precious. we have been able to live out the last few years as well as we have because we love him & we believe isaac is god's special gift to us -  to make daniel & i better people by teaching us love other people more, to share our story & to give isaac a family that will love & take care of him. that is just some of the good.

at times though, i feel some of the more negative things.
i wish i could just brush it all aside. that i was stronger. that my skin was thicker. but its not.

i don't handle all of the craziness well sometimes. okay. a lot of the time. i can get majorly stressed over treatments, diagnosis, xrays, surgeries, doctors not understanding isaac, reworking old treatment plans, isaac not eating, not growing, battling insurance companies...its the kind of stress that literally feels like you can't breath normally - that makes your brain feel fuzzy & lightheaded. the kind that you need a brown paper bag for. you know what i'm talking about? i know that is something i need to get under control. i pray so often for god to take away my anxieties, but they are quick to creep back in...worrying is something i've always struggled with. something i'm working on.

i go thru periods of big time exhaustion - having an 18 month old that still acts, in a lot of ways, like a newborn & wakes up in the middle of the night, every night, takes a toll. we adapt in a lot of ways. i joke about being used to sleeping 3 hours at a time - but really, a year & a half of the stuff is enough to make a lady a little crazy. & i have become a little of a crazy lady.

i cant cry anymore. daniel & i have talked about this a lot, but something happened in these past few years: my eyes just...dried up. most of the time i cant cry even if i want to. it probably sounds like im making this up, its such an odd thing to say. every so often, something will catch off guard & makes me tear up - & usually its something really small & silly, but on the whole, i have become a master at shoving all emotion somewhere out of thought - except for the stress. funny, isn't it?

it seemed like a necessity early on. i am absolutely incapable of thinking & communicating when i cry, & we had so many doctors to deal with, i just made myself stop & haven't really been able to since. it probably makes me come across as indifferent a lot of the time, or not fully understanding the weight of the things i am talking about with people. but i really don't even know how to change it right now, either...

we have had ups & downs all along, but right now seems to be one of the longer seasons i've been feeling more discouraged. its often just day to day, but the past few weeks - or month, have been especially trying for multiple reasons: extra feeding stresses, possible g tubes, shunt studies & overall added fussiness to name a few.

since isaac has been born, we have really tried to live our lives as much as possible like we did before we had a baby. we include isaac into a lot of the things we have always done. i feel like that is healthy in a lot of ways. i want him to grow up feeling like a normal kid. but the older isaac gets, i realize that he is different - wonderfully made, but different. our lives are just going to look a little different. we have tried - maybe too much to keep things the way they were - to strive for what we think normal should be, but i need to realize all over again that for us, its okay, & that some things we just need to do for our family may be...different {as i say different btw, i am totally thinking of the fantastic mr. fox wiggly hands kind of different each time}

we have started to fall into this pattern of wanting more: striving & grasping for things that maybe will never be. isaac has done so well. he is our miracle baby. when i was pregnant & we still didn't know what he had, we told each other that if he only was ever able to know that we loved him, we would be happy. we meant it when we said it, but as he has grown & progressed & also watching other babies grow, we have become dissatisfied with just that. as soon as isaac hits any kind of milestone - which is a BIG deal, we immediately want to push for the next thing. for more. more is good, but an attitude of 'more' that says 'we need to try to keep up! is that too much to ask, because i don't want to feel like a failure of a mom...' - that isn't the kind of 'more' i want to be apart of me.

when did i let the evil seed of comparison rob me of the joy of just enjoying isaac for where & who he is? why do i let comments on my parenting or looks we get at the park have such an effect on how i think?

here are the facts: isaac is almost 19 months & he is 12 pounds. not because we don't feed him. because FA kids are small & have poor appetites. & of them, isaac is still one of the smallest.

isaac doesn't eat food. no really, he hardly eats. he is a milk only kind of a guy. its not because i haven't tried countless times to let him suck on melt-in-your-mouth baby puffs. its not because i am trying to be too healthy with him & only feed him pureed veggies that i steamed myself {although i have definitely tried that}. i have tried every kind of puree. every mashed food. every juice. i have stuck trays of food in front of him & tried to get him to just PLAY with his food. i have tried getting him to just look at a spoon without crying. he has gotten progressively worse with his past few surgeries. i am in full gear every day stuffing his bottle with extra calories, because we ARE grateful he {most of the time} takes his bottle well. we see speech therapists & nutritionists all resulting in little or no progress. isaac doesn't crawl. he can't sit up on his own. he can't feed himself. he doesn't like his highchair - actually, he screams when he sees his highchair. other kids like THEIR highchairs? why...cant...i...just...FIX...THIS?!

i think like that more than i would like to admit. but sometimes, more & more, i try to catch myself & think of this: isaac is our precious miracle. isaac knows he is loved - isn't that all we ever wanted? isaac has a heart of gold. he is HAPPY. mostly. isaac is a survivor. isaac is the bravest boy i know. he recovers from huge surgeries in a matter of days. isaac can turn the page in his books. isaac LOVES plants. he loves them. isaac is an ever-baby & it means i have more years to snuggle him close to me when other babies just want to crawl away. isaac loves being outside. he loves birds & airplanes. he loves the blue swing in our backyard. isaac makes people happy. i don't understand it, but an isaac smile can make someones day brighter. isaac loves yo gabba gabba. he loves dance music. he can scoot across the room on his head to make up for his unwillingness/inability to crawl. isaac is alive. there are so many things that are right about isaac. he has such a personality already, so why do i let my heart become discouraged? it happens when i start to try to fix things on my own or wish for something that isn't where we are.

i haven't written anything like this in awhile. im hesitant to post it because i'm not looking to be really negative, or to be pitied or get on my soapbox & vent on a bad day to let you know that things can feel pretty cruddy around here sometimes...

all of this is to say that some days i feel none of the negative things, but other days.....
some days are really hard, too. & i don't say that a lot. maybe even knowing that will be encouraging to someone that feels like their days are long & stressful & crazy whether you have special babies or not. i mostly post just the good things. the smiling faces. my living room after it has been cleaned & scrubbed. i want this blog to be full of hope in the midst of our crazy, not-planned-for lives, but we are real people, too. & i want people to know that anything good they see in me is jesus in me - because the 'just mindy' part isn't so pretty a lot of the time.

i don't know how to end a post like this, i don't have a nice tidy way of wrapping up my thoughts, this is just...it. the good, the bad & in between.

Apr 10, 2013

{a peek at isaacs new hand}

just a quick update: we got a little sneak peek at isaacs arm yesterday before they put a new cast back on. this time i requested a camo print to wrap him up in :)
isaac was absolutely horrified of the machine that saws off the casts. & of mr. mack. it was the saddest thing. BUT LOOK AT HIS HAND!!!! its so long! & STRAIGHT!!! we couldn't get over it. it was so strange, seeing it...it's still pretty black & blue around where the stitches were, but its healing up really well. 

three more weeks of the cast & we're done!

Apr 5, 2013

{happy 18 months! we celebrate with arcade games & cardboard pizza!}

isaac turned 18 months old this wednesday. i meant to post then, but between all of the photos uploading i forgot to actually press the 'publish' button.
that seems to be happening a lot, lately.

this month i am really truly going to post more. i am. & i have a slightly tweaked blog to hopefully get me motivated. something simple & clean looking. it kind of reflects a bit of the spring purging we have been doing around our home here, too.

but back to isaacs birthday! we took him to the best of the best places - chuck e cheese!
he LOVED it. it isn't like i remembered from when i was little. not quite so glorious & also a lot brighter? i remember it being almost pitch black in there. maybe we just hit it at a funny time? but he adored everything about it, & we actually had a lot of fun, too. he also had his first taste of processed & not even that tasty pizza & he actually ate little itsy bitsy bites of it! what the heck!?! i have been trying to get this boy to eat ANYTHING for the past year & this is what it is going to take, i guess...

so after all of the festivities & games we went back home & opened a few little gifts & tried to give him a taste of birthday cake. nope. not interested, as you can tell. we try...

i made this yummy cake. the icing was divine. i'm not sure what everyone thought of the cake. i actually followed the recipe & it called for white whole wheat. it did taste a tiny bit...wheaty. but still good. next time i will try a gf all purpose & see how it turns out, i think...