There is so much to this first question, it’s hard for me to even know where to start. There are many, many things about PWS that are hard for me. And different days I worry about different things. PWS is so complex, so there are hundreds of things to worry about. When I first learned of Clover’s diagnosis, the doctor gave me some handouts on PWS. There were three words I distinctly remember reading and I will never forget how I felt when I read them. They were HUNGER, INFERTILITY, and GROUP HOME. For whatever reason, those 3 things were like a punch in the stomach. For the few minutes in between learning that Clover had PWS and me actually researching PWS, I had the thought that sure Clover might not be able to feel FULL, but she will go to school, go to college, get married, have kids, live a normal, wonderful life, etc. You know, the things we all want for our children. She just might need a little help to know when to stop eating since she won’t actually feel FULL. Then I read the handouts the doctor gave me and my world came crashing down. It’s not just about the not feeling FULL, it’s about feeling like you’re STARVING. All day. Every day. All night long. It’s about not being able to live an independent life because they literally cannot control their urge to eat and can literally eat themselves to death. It’s about realizing that our future is going to be very, very different from what I once imagined. It’s about saying goodbye to our old dreams….and saying hello to our new hopes….like the hope that Clover will walk one day, or ride a bike, or not be on oxygen the rest of her life. The hope that she won’t be in tears because she is so hungry and that I won’t have to tell her “no” when she’s pleading for something to eat…or the hope that she won’t be teased because she’s different, but that she’ll be happy and have lots of friends. It’s about fighting with our insurance company and doctors to get the very best care for our daughter. It’s about advocating and educating and hoping and praying for a cure EVERY SINGLE DAY. It’s a lot to take in. And it’s all very hard.
More than anything in the world, I want Clover to be happy and healthy. When I feel like PWS is getting in the way of this, it makes me angry and sad.
On top of all of this, I worry about Henry. I don’t want him feeling left out. I don’t want him resenting Clover. I don’t want him to feel like life is not as good as it could be because his sister has PWS. More than anything I want him to be happy too. And I have the same dreams and aspirations for him….and again, when I feel like PWS is getting in the way of this, it is upsetting.
I know this sort of turned into a bunch of rambling, but PWS just plain sucks!! Any disability sucks. It can be hard to have your life suddenly take a very different path than you originally had planned. I’m not saying this new path can’t still be full of adventure and good times, it’s just a little more bumpy and the cliffs are a little steeper, but there is definitely still joy in the journey!
Now for the second part of the question, “Do you get scared about leaving Clover in someone else's care because they just "don't know" what they need to do for her?” YES, ABSOLUTELY. To be honest, I hardly let anyone hold Clover for the first 8 months of her life. I think in 21 months, Curtis and I have been out without the kids twice. I’m getting to the point where I would feel a little more comfortable leaving her with someone for maybe an hour or two, but I would definitely have a long list of do’s and don’ts and I’m sure I would drive that person absolutely crazy. The other tricky part though is having 2 kids the same age, and really, for now, I just feel too bad leaving both kids with anybody. I definitely don’t feel comfortable leaving Clover with anyone over night. She requires oxygen and is hooked up to a monitor during the night, and she also gets a shot every night before bed….so overnight outings and getaways without the kids is just not an option (at least not for now). Another thing that is a very real and scary thought for me is something happening to me and Curtis. Who would take care of my kids? Who would know what to do for Clover....who would give her her medications, her nightly shot, who would fight with the doctor on growth hormone dosing, who would care for her for the rest of her life (not just until she's 18)?? I know this is something that every parent worries about, but when special needs are involved, it's just a different kind of worry. These are the types of things that keep me up at night (well, besides alarms going off and babies crying), but they are definitely things that don't ever leave my mind.
I know this was a very long response and thank you to those who read it all. Thank you Megan for asking these questions. As I’ve said before, your questions mean a lot to me!! I have the best friends and family ever!! Thank you for taking the time to learn about PWS and for supporting and loving us throughout this journey.
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