>>SHE'S STANDING!!!

This is a HUGE deal.  I am so very proud of my little darling!!!

>>VERY MUCH ME

I am very much a quiet person.  I know this can sometimes come off as being shy, stuck up or anti social.  But really, I like listening to others.  I like watching people.  I don't like being the center of attention.  I don't like being in the spotlight.  I don't like people looking at me or making a big deal about me.

I've always been the type who likes hanging out with one other person.  I don't particularly like big groups and I find it hard to find my place in a crowd.

I love deep, meaningful conversations.  I love talking about life, love, etc.  I love opening up to others and I love when others open up to me. 

I really am a lover.  I care about people and I like being around people....just not everyone at once. :)

>>LOVE MY BOY

Love my blonde haired, blue eyed cutie.

>>PWS AWARENESS MONTH - QUESTIONS

One last question to answer before the month is over....."Did you know Clover had PWS before she was born, and if so, were you hesitant on continuing with the adoption?"

I know this is something a lot of people wonder. No, we did not know that Clover would be born with PWS. We started the adoption process pretty early in the pregnancy, and signed the adoption paperwork when Clover was two days old. Clover was diagnosed with Prader-Willi Syndrome one month later.

When people find out Clover has PWS and also that she is adopted, their next question is usually, “did you know?” And when we say “no” their entire expression changes and it’s like they feel bad for us. As if we got “stuck” with this child that has a lot of medical problems. As if we didn’t get what we bargained for.

The truth is, we got WAY MORE than we bargained for. Clover is everything and a whole bunch more than we could have ever dreamed of. Anyone who has ever met Clover knows she is something pretty spectacular.

Clover captured my heart immediately. I loved Clover before she was even born, but when I first met her, and held her for the first time, that love I had for her magnified by a million…trillion…gazillion. My heart literally overflowed with love for her. I knew she was meant for us….. I truly believe with all my heart that we needed Clover, and Clover needed us, and she needed Henry and Henry needed her. We all needed each other. Looking back, I can see how every little (and big) thing fell into place in our lives exactly like it needed to so that I was one day able to meet Clover’s birth mom….and eventually welcome Clover into our lives.

I can’t imagine my life without Clover. PWS is just something she has….it’s not who she is. It does not define her. I’m thankful every day to be blessed with her. I would adopt her over again...and again and again!

Thank you SO MUCH for all of your questions this month. Thank you for letting me flood your newsfeed with information about PWS and our family. Thank you for joining in on raising awareness and working towards a cure for Prader-Willi Syndrome. Thank you for your kind words and your love and generosity.

>>PWS AWARENESS MONTH - QUESTIONS

Today's questions come from my good friend, Megan. She asked, "What about PWS is hard for you?" and "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?"

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.

>>PWS AWARENESS MONTH - QUESTIONS

Today I will be answering questions from two of my good friends. Lynsey asked, “Is PWS genetic? I had never heard of it before Clover, is it super rare?” and Stephanie asked a similar question, “Is PWS genetic? Would her birth parents have had any inclination that she might have it?”

PWS is a genetic disorder, in that it involves genes, however, it’s not necessarily hereditary nor does it run in a family (in most cases). 95% of the time, it is a total random occurrence….occurring in 1 out of every 15,000 births. So basically any of us have the same chances of having a child with PWS. However, in very rare cases (less than 5%), PWS is caused by an imprinting error (where the paternal 15th chromosome is present, but for some reason just not working) and that father has a 50/50 chance of having a child with PWS.

While PWS is very rare, it is actually the most common known genetic cause of life-threatening obesity in children. But like you Lynsey, I had never heard of it before the doctors told me they were testing Clover for it. This is why awareness is so important. If people don’t know about it, then they aren’t doing anything to support research. The more people who know, the more likely they are to give money to research and rally together to find a cure! And we desperately need a cure!!!

The next part of the question was if Clover’s birth parents would have known she might be born with PWS. No, there is no way they would have known. Her birth mom had a pretty uneventful pregnancy, and just like any expecting parent, we were all hoping for (and expecting) a healthy baby. We were all surprised about the diagnosis of Prader-Willi Syndrome (as are most families). There really isn't any clue or main symptom during pregnancy that screams, PRADER WILLI SYNDROME. Most families don't know anything is wrong until the baby is born and they are all just as shocked to learn about PWS. While there are some similar symptoms that moms experience during pregnancy (more amniotic fluid than normal and less fetal movement), none of these symptoms would make any doctor or parent think of PWS. Also, most PWS babies are born via c-section. They don't handle labor well and sometimes this can be the first real sign that something may be wrong with the baby. 

>>PWS AWARENESS MONTH - QUESTIONS

Today I will be answering questions from two of my good friends. Lynsey asked, “Is PWS genetic? I had never heard of it before Clover, is it super rare?” and Stephanie asked a similar question, “Is PWS genetic? Would her birth parents have had any inclination that she might have it?”

PWS is a genetic disorder, in that it involves genes, however, it’s not necessarily hereditary nor does it run in a family (in most cases). 95% of the time, it is a total random occurrence….occurring in 1 out of every 15,000 births. So basically any of us have the same chances of having a child with PWS. However, in very rare cases (less than 5%), PWS is caused by an imprinting error (where the paternal 15th chromosome is present, but for some reason just not working) and that father has a 50/50 chance of having a child with PWS.

While PWS is very rare, it is actually the most common known genetic cause of life-threatening obesity in children. But like you Lynsey, I had never heard of it before the doctors told me they were testing Clover for it. This is why awareness is so important. If people don’t know about it, then they aren’t doing anything to support research. The more people who know, the more likely they are to give money to research and rally together to find a cure! And we desperately need a cure!!!

The next part of the question was if Clover’s birth parents would have known she might be born with PWS. No, there is no way they would have known. Her birth mom had a pretty uneventful pregnancy, and just like any expecting parent, we were all hoping for (and expecting) a healthy baby. We were all surprised about the diagnosis of Prader-Willi Syndrome (as are most families). There really isn't any clue or main symptom during pregnancy that screams, PRADER WILLI SYNDROME. Most families don't know anything is wrong until the baby is born and they are all just as shocked to learn about PWS. While there are some similar symptoms that moms experience during pregnancy (more amniotic fluid than normal and less fetal movement), none of these symptoms would make any doctor or parent think of PWS. Also, most PWS babies are born via c-section. They don't handle labor well and sometimes this can be the first real sign that something may be wrong with the baby.