Coping with My Baby's Genetic Hydrocephalus
My son has a genetic form of congenital hydrocephalus along with a migration issue. He's a happy, pleasant 9 month old and we have him in every type of necessary therapy and we're fortunate to see a wonderful team of doctors.
Although his condition is genetic, its a spontaneous mutation meaning he just has terrible luck and there is no trace of this in our family history. Even though I know that there was nothing we could've done, I still feel incredibly guilty every day. Both sets of grandparents know this and are sympathetic, but I can tell that my husband's parents still blame me.
Jack's growing & progressing every day, but everyone we meet tells us that we have such a long road ahead and that he is very, very severe. The doctors also say that no one can tell us what his life will be like because there are so few patients that have his exact condition. This is exhausting to hear and I feel like I want to slap these people for habitually saying 'we don't have a crystal ball'...I know, I get it.
Every time I see healthy babies and children on tv/real life reaching milestones for the first time I feel overwhelming sadness that there is a good chance that Jack won't experience this. I don't walk around outwardly sad or depressed by any means, no can tell that I feel this way, but when I'm alone it gets to be too much. I see my baby struggle to hold up his head and cry when we do his therapeutic exercises while my friends' babies are already climbing and crawling. I see the looks of pity and sadness on the faces of our family & friends and it's heartbreaking & infuriating. Sometimes my husband & I don't want to see anyone because we get too much of this in a short time period.
When we go the hospital (more often on a weekly basis), we see so many severe children that are much worse off and we feel guilty for feeling sorry for ourselves. We tell ourselves that Jack could be so much worse, and we feel terrible that these poor children have to remind us of that. I've been told by several social workers that they don't want to put me in contact with other special needs families because so many are worse off or not as bad...what's the point then?
We really do try to stay positive and treat Jack like a typical, healthy baby and this child has so much love in his life from so many people, but its getting harder each day. This terrifies me because he's not even a year old yet.
I'm sorry for the rambling & pity-fest. I'm not normally an emotional person, but I had to let this out. I would love to hear from other families with similar experiences and get some advice on how to rally just deal.
Thanks so much for listening!
Although his condition is genetic, its a spontaneous mutation meaning he just has terrible luck and there is no trace of this in our family history. Even though I know that there was nothing we could've done, I still feel incredibly guilty every day. Both sets of grandparents know this and are sympathetic, but I can tell that my husband's parents still blame me.
Jack's growing & progressing every day, but everyone we meet tells us that we have such a long road ahead and that he is very, very severe. The doctors also say that no one can tell us what his life will be like because there are so few patients that have his exact condition. This is exhausting to hear and I feel like I want to slap these people for habitually saying 'we don't have a crystal ball'...I know, I get it.
Every time I see healthy babies and children on tv/real life reaching milestones for the first time I feel overwhelming sadness that there is a good chance that Jack won't experience this. I don't walk around outwardly sad or depressed by any means, no can tell that I feel this way, but when I'm alone it gets to be too much. I see my baby struggle to hold up his head and cry when we do his therapeutic exercises while my friends' babies are already climbing and crawling. I see the looks of pity and sadness on the faces of our family & friends and it's heartbreaking & infuriating. Sometimes my husband & I don't want to see anyone because we get too much of this in a short time period.
When we go the hospital (more often on a weekly basis), we see so many severe children that are much worse off and we feel guilty for feeling sorry for ourselves. We tell ourselves that Jack could be so much worse, and we feel terrible that these poor children have to remind us of that. I've been told by several social workers that they don't want to put me in contact with other special needs families because so many are worse off or not as bad...what's the point then?
We really do try to stay positive and treat Jack like a typical, healthy baby and this child has so much love in his life from so many people, but its getting harder each day. This terrifies me because he's not even a year old yet.
I'm sorry for the rambling & pity-fest. I'm not normally an emotional person, but I had to let this out. I would love to hear from other families with similar experiences and get some advice on how to rally just deal.
Thanks so much for listening!
Replies