i have some friends who just had a baby. they read my blog from time to time, so i don't want to offend or say something that i have no right to say. so saying that, these are my feelings that i am not going to edit.
when i found this friend (after a long time), i read their blog and found out they had had triplets in the last year. i wrote an email to congratulate her and her to say hello. before i sent it, i read more of her blog and realized that the triplets were micro-preemies and that their baby boy had died. the twin girls spent a long time in the NICU. i can't say how glad i was that i didn't send that first email. i rewrote the email to still say hello, but to say how sorry i am that they had to go through the loss of a child. it took her a while to write back and i thought i had said something wrong (i never know what to say in times of pain) or that she hadn't gotten the email. a few weeks/months later, she replied, saying she was sorry that she hadn't replied sooner, but that she had just experienced a miscarriage and was having a hard time with it. ok, so the loss of an infant and a miscarriage (which may have not been the first, since i think the triplets were conceived with help).
we corresponded a while and she admitted that she was pregnant again. i crossed my fingers, toes, arms, legs, eyes, intestines... anything i could. i knocked on wood, i prayed, i thought about her and her family often. i commented on her blog about how i hoped this birth was the most boring thing that she had ever done, after the surprise of the last experience.
she gave birth to her second son on the day he was due. she looked great right up to that last pic she posted. i think it was a relief for her to be READY to give birth. a few days goes by with no posts and i assume they had their baby. the next post was pictures of their boy and this statement: "...there are some unexpected grave medical concerns that surface..."
he has Joubert syndrome.
Joubert syndrome is a rare genetic disorder that affects the area of the brain that controls balance and coordination. The disorder is characterized by absence or underdevelopment of a part of the brain called the cerebellar vermis and a malformed brain stem (molar tooth sign). The most common features include ataxia (lack of muscle control), an abnormal breathing pattern called hyperpnea, sleep apnea, abnormal eye and tongue movements, and hypotonia. Other malformations such as extra fingers and toes, cleft lip or palate, tongue abnormalities, and seizures may also occur. There may be mild or moderate retardation.
here's where my feelings come out: really? i mean, really? if i feel like they've been completely robbed, then how do they feel? but the baby is totally beautiful. from the pictures, he looks totally normal (with the exception of the ng tube). but he could have a litany of issues, retardation being one of the major ones. and now they just get to sit and wait to see what happens. my friend's husband (who is amazingly introspective) made a statement about loss on their blog today. it makes me feel guilty to say "loss" since the baby is alive. and because this isn't my situation, i feel that i don't have the right to say i also feel a loss for them. i don't know. it's just a hard situation. do you say sorry? hang in there? maybe it won't be all that bad?
the whole situation just breaks my heart. into a million tiny pieces. no one ever wants anything bad to happen to anyone's baby. but you wonder how much suffering one family should have to take. so i'll keep praying... that their adorable little boy has the lightest of problems. that he faces nothing that won't make him a stronger, better person.
when i found this friend (after a long time), i read their blog and found out they had had triplets in the last year. i wrote an email to congratulate her and her to say hello. before i sent it, i read more of her blog and realized that the triplets were micro-preemies and that their baby boy had died. the twin girls spent a long time in the NICU. i can't say how glad i was that i didn't send that first email. i rewrote the email to still say hello, but to say how sorry i am that they had to go through the loss of a child. it took her a while to write back and i thought i had said something wrong (i never know what to say in times of pain) or that she hadn't gotten the email. a few weeks/months later, she replied, saying she was sorry that she hadn't replied sooner, but that she had just experienced a miscarriage and was having a hard time with it. ok, so the loss of an infant and a miscarriage (which may have not been the first, since i think the triplets were conceived with help).
we corresponded a while and she admitted that she was pregnant again. i crossed my fingers, toes, arms, legs, eyes, intestines... anything i could. i knocked on wood, i prayed, i thought about her and her family often. i commented on her blog about how i hoped this birth was the most boring thing that she had ever done, after the surprise of the last experience.
she gave birth to her second son on the day he was due. she looked great right up to that last pic she posted. i think it was a relief for her to be READY to give birth. a few days goes by with no posts and i assume they had their baby. the next post was pictures of their boy and this statement: "...there are some unexpected grave medical concerns that surface..."
he has Joubert syndrome.
Joubert syndrome is a rare genetic disorder that affects the area of the brain that controls balance and coordination. The disorder is characterized by absence or underdevelopment of a part of the brain called the cerebellar vermis and a malformed brain stem (molar tooth sign). The most common features include ataxia (lack of muscle control), an abnormal breathing pattern called hyperpnea, sleep apnea, abnormal eye and tongue movements, and hypotonia. Other malformations such as extra fingers and toes, cleft lip or palate, tongue abnormalities, and seizures may also occur. There may be mild or moderate retardation.
here's where my feelings come out: really? i mean, really? if i feel like they've been completely robbed, then how do they feel? but the baby is totally beautiful. from the pictures, he looks totally normal (with the exception of the ng tube). but he could have a litany of issues, retardation being one of the major ones. and now they just get to sit and wait to see what happens. my friend's husband (who is amazingly introspective) made a statement about loss on their blog today. it makes me feel guilty to say "loss" since the baby is alive. and because this isn't my situation, i feel that i don't have the right to say i also feel a loss for them. i don't know. it's just a hard situation. do you say sorry? hang in there? maybe it won't be all that bad?
the whole situation just breaks my heart. into a million tiny pieces. no one ever wants anything bad to happen to anyone's baby. but you wonder how much suffering one family should have to take. so i'll keep praying... that their adorable little boy has the lightest of problems. that he faces nothing that won't make him a stronger, better person.
posted by mikraas at 7:14 PM
1 Comments:
You're good people, Kim. Perhaps you know how reassuring it is that you share your personal struggles with others, but in case you don't, let me be the first to tell you. And thank you for also being big enough to remember that most of us have it pretty damned good and really don't have shit to complain about. Thanks for being real.
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