grief

this morning i woke up in a lot of grief again. last night i was completely fine. that's the thing, i have moments where i'm completely fine - really, i am. then the grief suddenly hits and it feels like i can't breathe & i'm going to faint. i woke up feeling so guilty for everything. i really feel like this was all my fault. i mean, if the stroke happened after birth, maybe i'd feel a little better? but it happened in-utero so it really could've been my fault. and i can't do anything about it. the hemi-kids digest i subscribe to isn't helping either. it's a support group but i don't know how "supportive" it really is. it just terrifies me when i read about these 18 year olds who have no friends and get bullied. it's just really f*cking depressing sh!t. yet i can't unsubscribe or stop reading them. i'm like addicted to torture or something.

snookie

snookie's pregnant - and watch her have a healthy kid even though she drank every single day of her first trimester before she even found out she was knocked up. and then you see healthy normal moms have babies with issues. i was never that into family gatherings but now that my son has this issue, i dread any family dinners or anything like that. i can't deal with watching kids run around and i don't know, i'm being ridiculous because sooner or later i have to deal with it. i just can't. i don't know what to do. i could send my husband with our older daughter and i could sit at home with the baby. or i could tell him to take both kids and i go out and do whatever. or maybe i'll make plans with a friend even though honestly, i don't event want to be around friends either.

i sometimes see my daughter do everything so easily and she's quick/advanced for her age and it makes me happy that she's developing well & growing but it's bittersweet because it only reminds me of what my son may not do or have difficulty doing. so when i see her do things & grow well, i kind of freak out. i am crazy.

i have good days and bad. yesterday was a good day. maybe because at starbucks, i asked for decaf and they accidentally gave me caffeinated instead so i had a lot of energy all day. today is a bad day, i'm full of despair again.

i just want my baby to be ok. this morning i was laying in bed and i randomly thought about how he only makes "oooh" or "aah" sounds so then i panicked because why isn't he making consonant sounds? i remember my daughter would say "goo" or "gah" at this age. now i'm worried about yet another thing. i just want to cry.

googling

i've googled stroke so much in the past 5 months that now i just kinda stopped...from boredom? from being tired? i don't know. but today i googled "pediatric stroke march 2012" to see if any new sites came up. this is how desperate i am. in the past 5 months, i've googled every combination of the word 'stroke'. i've googled 'pediatric stroke' and 'neonatal stroke' and 'perinatal stroke' and 'fetal stroke' and 'infant stroke' and 'utero stroke' and 'baby stroke' and 'prenatal stroke'. i've googled everything. and i've reread the same pages over and over and i almost feel like each time i read it, i notice or focus on something different. i mean, it's always something equally terrifying. i've read so much online that i've memorized names of kids with strokes from blogs & support groups. i'm just googling & googling desperately looking for answers that no website or any person can give me. i want to know sh!t like "will he crawl by 12 months old?" and then i compare him to other kids in blogs i read. i'm like, well my son had the same stroke in the same location & he had apnea at birth & he's not fisting his affected hand so he'll turn out like this kid in this success story i just read. but then i'll read another blog where the person's kid is similar to mine but he doesn't turn out well at all. so then i get depressed again. or i'll tell myself, well THAT person's baby was showing signs at 2 months old but my baby didn't. therefore my baby will be ok. OR i'll read a success story and get all hopeful but then i realize that my son's head is still in a very low percentile but that person's baby's head was normal-sized. therefore my baby has no chance. i don't know what's up with his head size. he was born tiny and premature so he was small overall. his weight & height are in the 10-25th percentile right now. but why is his head barely on the chart? it can't be because of his overall small size. i mean, if his body's in the 10-25th percentile, it would only make sense that his head should be too. but no, his head is barely on the chart. no one has mentioned the word 'microcephaly' to me but i mean, can it really be coincidence that he suffered 2 strokes and has a head size that is barely on the chart? i want to crawl under a f*cking rock and die.

i know i make this whole blog all about ME, and i really need to get it together if i'm going to help my son. i realize that. i just can't seem to do it though. maybe i am addicted to suffering like this. sometimes i think i have this weird mentality where the more i suffer, the more my son will be ok. i don't know...

panic attack

i'm having another panic attack.

neverending self-pity

i was walking home last night and kind of hoped i'd drop dead. i can't snap out of this misery. i'm so weak. it's funny how people say "you could get hit by a bus tomorrow" but the truth is, 99% of us will not get hit by a bus ever. we will live the next 50 years and have to deal with our sh!t. it's a depressing thought. i'm really scared that my son will be cognitively impaired from his stroke. i feel like there is no hope at all. he was 4 lbs 7.6 oz at birth, he was 4.5 weeks premature, AND he had TWO strokes, not just one. let's say he was full-term and healthy weight and had the 2 strokes - i'd have a little more hope. let's say he had ONE stroke - i'd have much more hope. but no, we're in the sh!ttiest situation there is. i know there are worse situations. it just feels like my own situation is worse than anyone's though. i can look at another person's situation and feel genuinely optimistic for him/her. but when i look at myself, i am always glass-half-empty. i miss my old self. i used to look forward to weekends. now i dread them. i hate feeling that way. i really do.

support groups

i need to come up with better, more enticing, titles for my posts. but i'm a lazy ass. i subscribe to an email list called hemi-kids. it's a hemiplegia/cp/stroke support group and i get the one-email-a-day summarized version instead of getting the emails all day long. well, this support group - yes it's supportive because it's others who are also the unlucky 1/4000 who are going through this stroke/hemiplegia/cp bullsh!t too so it does make me feel less alone. BUT omg, it's like a train wreck. the things that happen to some of these people are the WORST things ever. they are awful. yet i can't peel myself away. my husband tells me to unsubscribe because all it does it make sh!t worse. it makes me feel even more depressed. but i just can't stop reading. it's like, i seriously HOPE these awful things don't happen to me. but then sometimes i think it will. sometimes i tell myself, i SHOULD keep reading to know what to expect. but then i get SO f*cking depressed. i mean, i read things like, "my kid is potty trained now! he's 8 years old! yay!!!" and i have a momentary panic attack. i'll read, "my kid gets made fun of in school all the time because he can't pull his pants up in the bathroom" and it kills me. i read "my kid just started walking today!" and then i find out she's 6 years old. yes, i get it that she's walking and that's what's most important. that she's even walking at all. but really, any parent who just receives this diagnosis for their infant is going to freak out when they read it. even if your doctor tells you "your child will probably never walk", you have hope your child will do it eventually. so when you read about kids not walking until they're a lot older, it's a big reality check. i don't know if i make any sense. for example, our neurologist isn't totally doom 'n gloom. he thinks our son will have motor issues on the right side. so yes, it makes sense that i should expect/accept issues to happen. but when he did start showing the hand preference, i FLIPPED. you hear horrible prognoses, but deep down inside you think to yourself "well, my child will be the exception". even me - i'm the most negative, sh!ttiest-attitude, person out there but i had hope that my kid would be one of the lucky ones. on the HK email list, it's funny because i think hundreds or thousands of people are on it actually but the same people post all the time so now i recognize their names. i'm sure there are a lot of silent observers on it. like me. i wonder if there are a bunch of other moms who silently observe and read these and have panic attacks too. my problem is, i read this sh!t and i don't think rationally like, "ok this happened to her. but my child isn't her child. my child could have a different outcome". instead my heart sinks and i'm like, OMG this is going to happen to my kid too & i'm going to be miserable forever and ever and our lives are over.

anyways, i've been on so many support groups online. i guess they're helpful but they're terrifying too. most of the people on it sound like normal, knowledgable people. occasionally, there's the weirdo who posts rambling on & on about random sh!t. i think if i were a regular, i'd probably be a rambling weirdo too though, digressing and going on about other sh!t and being all woe-is-me. sometimes when a person posts on the support group and sounds intelligent and normal, and is in a similar situation as me, i will email them personally. i get annoyed & disturbed when people post who sound unknowledgable and unintelligent with wrong spelling & grammar. i start thinking, is this a crazy trashy person who is dumb & did crack so that's why their kid ended up with a brain injury? i don't want to be in her category. but then again, a crackhead probably wouldn't be on email or a computer, right? lmfao why do i care, right? this isn't a spelling bee. it's a f*cking support group for brain injured children. i'm so weird.

no improvement

i have a bad attitude. i know i do. i can't help it. i'm really scared that random people will read this blog and post hate messages for me. i don't know why i give a rat's a*ss what people think. so anyways, we're in the process of getting OT. in ny, you don't qualify for EI therapy unless you show signs. it doesn't go by diagnosis alone so it's kind of annoying. on one hand, i want him to show signs because i want as much therapy as possible. but really, i'd rather him be on track and not show sh!t except normalcy. so the OT stopped by a couple weeks ago and she did the evaluation. she was kind of a disgruntled unfriendly person. whatever. i received the papers in the mail yesterday. it was kind of a reality check. i mean, i knew he was behind but not THAT behind. his fine motor skills - they're on the level of a 1 month old. he's 5 months and 1 week old. i mean, i'd get it if he were on a 3 month level. after all, he was 4.5 weeks premature (although honestly, i have high, sort of unrealistic, expectations for him so i don't like to adjust his age). but one month old - what a f*cking blow. i went nuts. my husband wants to strangle me. i can't handle sh!t. i'm a mess. i contradict myself so much too. i don't make any sense to myself. it's like, i'm totally doom 'n gloom and think the worst case scenarios will happen. but then when i read that his fine motor's at a 1 month old level, i can't accept it. i flip out. i think what it is - i'm naturally a negative, anxious, pessimistic person BUT deep down inside, i think i DO have hope/faith. i just don't admit it because i don't want to jinx anything. so when sh!t really does go badly, i lose it because i give off a doom 'n gloom front, but deep down inside, i think things will be ok. but now i really wonder if things will be ok. i'm depressed. woe is me...as usual.