Friday, June 28, 2013

"Would You Choose Again?"

While I can't reveal the details, I am *thrilled* that friends of ours are moving forward with the adoption of a little girl with PWS. There are so many ways this is exciting, but since I can't lay it all out there right now, I wanted to address another issue...

While we were talking with our friends about what it meant to have a child with PWS and they got the opportunity to ask *us* questions that they might not already know the answers to, they asked one question: "If you could choose it all again, knowing what you know now, would you?"

I get the good question. It's a good one, especially for a family embarking on a journey of welcoming a child with PWS into their family. But it's a question that we can never really answer... right?

We chose Dean. We chose to have another baby in our family and we were so happy to find out that that choice was met with a pregnancy, and 20 weeks later, the knowledge that Cole would have a little brother. :)

We did not know of Dean's diagnosis while in utero, but as a constellation of symptoms came into focus and at birth we knew - oh, something is very, very wrong... what is happening to our baby? - we were already hooked. It was love of the same degree as for Cole, and yet it was a love that strained our hearts and pulled us out of ourselves into a place of fear and sadness that one can never quite forget....

Four years later, I can tell you what I would have told you then: we choose Dean a hundred million times, "infinity infinities" over, as Cole would say. We choose him every time. We do not choose PWS. We do not choose battles with sleep apnea, narcolepsy, low muscle tone, growth hormone injections, endless therapies, learning difficulties, speech apraxia, hypothyroidism, adrenal insufficiency, scoliosis, impaired metabolism, auditory processing issues, BLAH BLAH BLAH. We do not choose this. Geez Louise, no one chooses that (and I believe that includes God... but that's a whole other matter...).

I'm not going to pretend to know what it's like to welcome your first child with PWS into the family through adoption. Our situation felt more like Revenge of the Body Snatchers because it was like PWS snuck in and switched out the "regular" baby everyone thinks they're getting and gave him PWS (spoiler alert: I don't think that's how babies actually come to have PWS. There is possibly a more reasonable ridiculous explanation out there).

But for serious... how best to answer the question? Knowing what we know now? And asking the impossible scenario of choosing when we didn't have a total choice? we choose Dean, every day, many times over, and he has PWS. So we'll take it, because we'll take him. :)

P.S. I'm going to go out on a limb and guess that I said something in here that offended someone about PWS, children, adoption, theology, something. I tried not to. *I am sorry.* It's hard to figure out how to talk about all this and be both honest and yet know that you only know a small piece of the puzzle. I've asked God for more info and this is all I've got for now. I'll keep you posted....


Janis said...

I hope no one said anything to you. I love Audrianna so much and lately I've been asking myself, would I do this again. When Luke was available for adoption, every fiber in me wanted to adopt him. I do wish I was younger. I think if I was younger I would 100% say I would do this again. Its hard being old and single and having her later in my life. But I cannot imagine life without her. Those early years are awesome. It really lays the foundation for the future. You see how much your baby/toddler goes through to achieve what is so easy for others and you are so much in love that your heart seems to burst. It is that love that gets you through the difficult times. That and the amazing friends you meet along the way. This journey would be unbearable if I did not have so much support from the PWS community. We all love each other's children I think. We feel like they are all ours.

Jen said...

This is a really great post and also about a subject very dear to my heart. We adopted our sweet Clover who also has PWS. We started the adoption process when her birth mom was just a couple months along in the pregnancy and we were able to complete the adoption at the time of birth. It was soon after Clover was born that we realized something wasn't right and at 30 days old she was diagnosed with PWS. Whenever people find out we adopted her and that she has PWS, the first thing they ALWAYS ask is if we knew she had PWS before we adopted her...then when we tell them no, it's like they feel bad for us as if we got "stuck" with this baby who has PWS. We fell in love with Clover before she was even born and that love only intensified times a billion when we first saw her and held her. I couldn't imagine not having her in our lives. Knowing what I know now and seeing what an absolute sweetheart Clover is, I would do it again and again. Like you said, it's not the PWS we are "choosing"'s the person...and if having that person in our lives means them having PWS, then we'll take it! You said it perfectly! (As a side note, we ended up getting pregnant during the adoption process (a total surprise to us!) and so Clover has a little brother just 2 months younger than her). :)

Ali Foley Shenk said...

Thanks for your comments, ladies!

Jen, I checked out your blog - what a great family! So fun and looks like you are handling it so well. :)

We experience a similar reaction about Dean when people ask if we'd done prenatal testing or otherwise knew before he was born that he had PWS. When we tell them no, we get such looks of pity or like you said, that we got stuck with the baby we didn't want. SO not the case!! I think people ask questions like that because it helps them dance a little closer toward the issue and gauge their reactions of how they would handle/feel about a certain situation. Of course, you don't know until you fall in love with the child, diagnosis or not. :)

So thankful you have Clover (and Henry, too!) in your lives. Dean is 4 and the ways he has blossomed and his sweet heart...ahh, makes me tear up probably once a day. It is a beautiful thing. :)

Hills N Valleys said...

I love your post! Not offensive at all. I love the truth in your words.

I do feel out of place at times in the PWS community and on occasion not accepted though, especially in the blog sense. I always wonder if it is because we knew before hand at 4 months (through foster care)that our son had PWS. None the less he is our son and I would do it all again.

agbdiva said...

I suffered 2 miscarriages before having Charlotte(my second miscarriage was a trisomy 15). She is my miracle baby and a blessing to all who meet her. Your words ring true. I can't imagine my life without her.

Ali Foley Shenk said...

Joy, I'm sorry that you feel out of place sometimes in the PWS community. From the outside, you fit in to me! But I know that it's different to be in your shoes.

agbdiva, thank you so much for sharing your story. I have heard of the trisomy 15, which as you might know, is the same chromosome that is affected in PWS. So thankful that you have your little blessing, Charlotte!