this morning i watched a feature on good morning america about prader-willi syndrome. if you are interested in viewing it, you can see it here: http://abcnews.go.com/video/playerIndex?id=8343673. while it is great that more people were exposed to information on this very rare disorder- it is difficult to watch. part of me thinks some of these stories are sensationalized. part of me knows that the young woman showed in the video comes from a time when the interventions that we have now were not so easily available. there is part of me that wonders if everything that we are doing every day for sophia will be enough- to keep her safe from others, and herself. i wonder if there will ever be a cure. i wonder if enough people care to find one.
i know, that i for one, had never heard of pws before sophia was diagnosed. i know that the literature that is available makes the people around the individual with pws sound like monsters, or like guards. i love my daughter so much- i don't want to be either of those to her- but i understand that if i don't intervene- sometimes physically- i will be responsible for the consequences of those actions. i will be responsible for not stopping what sophia can't stop on her own. if she becomes obese, i will be responsible for the health consequences of her condition. if she eats herself to death, i will be responsible for not being with her, not looking after her in that moment.
reflecting on that makes it sound like sort of a sentence for me, too. when you become a mother, you certainly expect that you will be responsible for caring for your child until they can care for themselves- whether that's at age 18, or later. i don't think many mothers, however, ever think for a moment that their child will never be independent. we have hopes and dreams of sleepovers and dances and camp and dates and parties and college and weddings and children in our children's future. none of these things- unless they are extremely structured and highly supervised will ever be in the cards for my daughter.
i do, however, feel like that is a particular challenge for me. how can i enrich sophia's life so that she can experience these things the best way we know how? there will be sleepovers at our house. there will be camp outs. there will be vacations. there will be parties and dances and all the rest- and hopefully, since i'll have to be around, i'll be able to keep up (i'd better start working out NOW).
all of that being said- when i pause in the quiet and really think about it- i wouldn't want sophia any other way. i've said it once, and i'm sure i'll say it a million more times- sophia's amazing. the only reason i would ever wish that things would be different is for her. i wish with every fiber of my being that things were easier for her. that she wouldn't have to go through so much pain. it's like those moments when the grieving are bargaining and wishing that it could've been them- not their children. i guess it's not LIKE that at all. it IS that.
all parents have those thoughts about their children, though. growing up is painful! learning to walk, as evidenced by my friend stina's little boy, is as bad as being bitten at school (which he is also experiencing)! going away to school, being a part of the out crowd, not being picked for the team you want, falling in love and getting your heart broken- all of these things happen to our kids at some point. being protective is part of being a parent.
i guess i just wonder how i can help her learn and live and still keep her safe. spread the word about prader-willi and its real life consequences. inspire others to act. that may be the only way we find out more about how to stop it- and really the only way for me to make sophia's life the best it can possibly be.
2 comments:
i wish there were a way for others who are going through this could read your blogs....what great measure of comfort and comraderie you offer! they dont tell us when our children are born how very much from that moment on, we are basically walking around with our hearts outside our bodies, completly exposed to every meansure of pain. we think when we come home from the hosp. if we can just get through the first week without accidently killing this small creature, we might actually do ok...and then we find out that pretty much, every week of their lives for the rest of their lives are just like that first week...
i guess the only way i get through these things (tonight my baby girl is on her first date)my son goes to college on sunday...and after years of emergency rooms,asthma attcks,pnemonia,stitches,dislocated elbows, surgeries,almost being hit by cars that didnt stop at the bus stop,near drownings,attemps to kidnapp, cruel and abusive teachers and babysitters,bullies on the playground,on and on i could go i finally learned that the best thing i could do was give my children to God. I simply could not handle the weight of knowing or understanding how to do best for them, letting go and trusting the creator with their futures has taken a great deal of weight off my shoulders...remembering that they are just mine for a little while, however long that might be, and trying to just live in the moment and suck up the joy they bring, remembering how fragile we all are..even if we have that little gold ticket of health, it is just a safety placebo...we all could go at any time, but those with health issues, and their care givers learn to live in cherishing and carry baskets for the treasures of life, ahile the rest just dont...because ultimately it is only when we come to terms with the hourglass, do we really start to live at all and appreciate the gift of life at all, the minutes, the days, that is where life gets rich...unlike the mundane forgranted lives most live in their best years they never really appreciated...
i could ramble on, but i think you already know how to life life to the fullest...you are one of the riches people i have ever experienced....i am blessed by your perspective and the way you savor life. sophia has taught you that, cherish it as i know you do, you have already had more tenderness in your time with your baby girl than most get in a lifetime. quality is everything! and you definately have that!
Fascinating......I never knew about prader-willi syndrome till now...I think you summed it up best when you stated that you wouldn't have Sophie any other way. There are so many perceived downsides to being in your situation, most "unenlightened" folk would claim...but the reality is that the pure love and devotion that a special needs child has for not only their parents, but for everyone around them is unparalleled in any other facet of society. THAT is truly a beautiful thing....
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