noah is 4.5 months old. he's doing ok i guess. i mean, i don't know because a baby that age doesn't do much. he's using his left hand more and doesn't have coordination with the right hand. this started about 10-12 weeks ago? i remember first seeing him touch his face with his left hand but not his right. before that, i was in denial and thought that we'd be in the lucky 24% of kids who never showed any signs. then in the weeks after that, i noticed that he was using his left hand to grab his pant leg, his bottle, my hand, etc.
to a random person, this probably doesn't seem like a big deal at all. it's just his hand, right? but no, i KNOW what can happen after this. i've read every blog out there on neonatal stroke. i've been on every support group board about perinatal stroke. it starts off with a hand preference and then other signs start appearing. then before you realize, he's not rolling over or sitting up or crawling or anything. his leg is dragging behind him. he needs a splint, a brace, then he's limping, then he needs botox injections, and constraint therapy, and a taped arm, and then he has no balance when walking and is constantly falling on his face because he lacks that reflex where you throw your arms out in front of you when you are falling. then instead of summer vacations, we're sending him to constraint therapy camp for kids with cp. then our friends feel sorry for us because we're THAT family who was unlucky and got stuck with a special needs kid. they say things like, "i don't know how you do it" and say to their husbands, "we're so lucky that our kids are healthy and normal. imagine if that happened to us. i feel so bad for them". and then we do go on summer vacation to disneyworld or wherever but our son can't walk for long distances and by that age, he's too big for a stroller so now he needs a wheelchair when he can't continue walking. omg this is the sh!t i think of. i think of how my daughter is going to be embarrassed of him. maybe noah will cling onto her during the school years cuz he won't have friends of his own because he's "different". our daughter is already pissed cuz we give noah so much attention so she lashes out on him constantly. will noah just watch his big sister grow up and do normal things? like she'll go to a university & get married & have kids & whatever other normal things everyone does in life. and he'll just sit there and watch her do all these things? oh how f*cking depressing beyond belief.
we got the diagnosis on oct 5th so that means it was right around the holidays. the holidays were tough. i would sit there and show the baby to everyone and they had no idea. they just thought he was premature. but inside i was dying. i would watch the other kids running around playing and wonder if by next thanksgiving/christmas, would my kid be sitting there immobile with a splint on his arm & braces on his legs? will he be drooling due to weak facial muscles? and then i'll have to endure my husband's family saying sh!t like, "poor thing". oh god. i can't deal.
i can't deal with my friends announcing pregnancies or births. i was never like this before. back in the day, i WANTED all of them to hurry up and have kids and stuff cuz when i had my baby, all my friends were just starting to get married. now i'm miserable. i'm not happy for anyone. i don't want to hear about their perfect healthy babies. i don't go on facebook anymore EVER, unless it's to check messages from other stroke moms. i don't go and look at the newsfeed to see photos of my friends' & relatives' perfect healthy babies who didn't end up in NICU.
i hate the person i've become in the past 4.5 months. i'm a bitter, miserable, jealous person. i hate it. i was never like this and now i am.
i just want a normal life. i want to go home and hold my baby and do normal things. i don't want to rush home frantically because i have to do therapy because if i even skip it for one day, he will end up deteriorating. i stare at him looking for signs of abnormalities. even though he appears to be normal, i wonder if he's normal because how is there any way that a baby could suffer such a horrible injury and come out ok? i mean, SOMETHING has to appear sooner or later. i mean, let's say he didn't have very noticeable physical issues. SOMETHING has to happen, right? like will he not talk? will he develop tourette's or autism or something like that? because i read that kids with strokes are at a much higher risk for those things. omg i am so overwhelmed. i am thinking a million things at once.
i get sad when i look at old photos of myself, like our wedding photos. because at that time, i always thought we're gonna get married and then have 2 healthy perfect kids. never ever ever did i imagine something like this ever happening. i get sad when i hear old songs from like 2010 because at that time, i had a healthy daughter and life was good. i was happy. maybe i didn't realize it at the time because when life is good, i take things for granted and don't think about it. at the time, i probably worried about SOMETHING because i'm always worrying about something but life was good. and now it's 2 years later and my life is absolute hell.
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