PWS Awareness Month- Day 26

Hi Everyone, 

So people keep asking about Dad’s perspective.  I find this to be a hard job because my wife is covering so many different aspects in the blog, but I will give it a try.

 First off, one thing I know is that my wife is amazing. She rises to the challenges of Kemett everyday and does a wonderful job with him.  She is a determined individual that is so strong. There is a lot of talk about higher divorce rates of couples that are parents of special needs children. Although I know our life may be more challenging, so far I feel we have become a stronger team and my wife inspires me every day. Kemett means the world to both of us but we also mean the world to each other and I think these challenges have helped keep that in focus.

I was devastated when I first knew something was wrong with my son.  Melissa had an emergency C section and was given some powerful drugs. She was out of it when I first knew something was wrong with Kemett. It was very lonely not being able to tell Melissa. That feeling went away very quickly when she came through. We were always a team but through this experience I definitely learned what it means to lean on someone and be there for them. 

While we were in NICU, we were told a variety of possibilities of diagnoses and futures for our son.  It was a wild ride emotionally but we just tried to focus on Kemett. We always joke about the one doctor who informed us that our son would not be a Track Star one day. Anyone who has ever seen me run knows that with almost certainty that none of our children will be track stars. In NICU we just tried to do everything the nurses were doing for him so we could get him home. There is much to learn for a first time parent and with Kemett’s special needs there was even more. Our time in NICU helped us prepare. The nurses were amazing and we got fist hand instructions on many extra things that Kemett would need.  

At home, life became a lot closer to what it is today. Kemett has a multitude of therapies a week and sees a multitude of doctors. I rarely get to see therapy, or go to the numerous doctor’s appointments. I know it’s not easy for Melissa and I do wish I could be there more often. I do my best to give Melissa breaks when I am home. Melissa shows me many of the therapies he does and I try to work with him when I get a chance. Like any kid he is a lot of work and I am lucky to have an amazing partner in this all.  

Kemett is amazing. The kid is so happy and smart, it is cliché but he is the best thing to ever happen to me. He loves to be held upside down and he loves to drum on my belly (guy things). We spend a lot of time reading and playing. We walk all over the house, myself hunched over, Kemett holding my hand.  It took me a while to get here, but every parent’s job is to give their child the best life they can and although my job might not look exactly like everyone else’s, it is still the same. There is not a day I don’t feel broken in half by his diagnoses, but there is also not a day that my heart his not overflowing with love for him. The easiest cure for sadness for me is just to go pick him up because it is impossible to interact with him and stay sad. He is full of love and smiles, and although I would take PWS away from him if I could, I wouldn’t change him for the world.   

From my perspective my Son and Wife are amazing. My family is awesome.

Love,

Andrew

At Comicpalooza

Aquaman and Aqualad

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5 thoughts on “PWS Awareness Month- Day 26

  1. You two are wonderful parents! It’s obvious that you all are a fantastic team and Kemett is very loved kiddo!

  2. So… incredible eloquence and deep love run in the family, eh? Thank you for this post – I feel more complete in my understanding and perspective having read it. Y’all are stellar!

  3. Andrew, you are as amazing as Melissa. Melissa, I have a question. Andrew mentions that you had an emergency c-section. Were there any signs that Kemett had PWS while you were pregnant? Was the c-section related to PWS?

    • Thanks so much! Great question. There were no signs that Kemett has PWS while we were pregnant and as a first time mom I didn’t realize he didn’t move much. We also had a couple extra ultrasounds because we had a history of miscarriage prior to Kemett. Everything looked great. We didn’t have genetic testing but even if we had it would not have detected the subtype of PWS Kemett has. They can only test for deletion. I think most PWS kids end up c sections bc of the low muscle tone. I was in labor 17 hours before they decided on a c section and it turned into an emergency in the OR- our heart rates both dropped. But before that he wasn’t moving down and his heart rate wasn’t recovering well from contractions. Thanks again for reading and asking questions!

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