PWS Awareness Month- Day 18

Hi Everyone,

Today we have a guest blogger!  My best friend, Ashley, has agreed to write a piece about knowing us, our family and PWS.  Also, she’s a talented photographer- so if you are in Austin or Denver and looking for someone check her page out here.  Thanks, Ashley!

As always, let us know if you have any questions!

Love,

The Demands


Hello everyone! I am so excited and honored to be a part of the Demand’s world and to get to write a blog post. I am going to talk about my perspective in relating to the Demands, what I they have taught me, and some simple actions that are supportive.

Here’s a little background on our friendship: Melissa and Andrew basically handed me my husband and kids. Melissa and I become friends in social work graduate school while she was dating Andrew and I picked my husband out from Andrew’s facebook page for a date. Eight years later Dustin and I have two kids, live back in Austin, and get to hang out with Kemett on the reg.  See how cool the Demand’s are to be around? You just might get something like a whole life from them.

Melissa and I had our sons within a year of each other and as moms and friends do, we discuss our kids and life with each other. When we catch up, amongst many other things, Melissa talks about what’s going on in her PWS community/world. One conversation that stood out to me was her telling me about a PWS conference. She mentioned that they went out with a group of friends for the evening and told me about the fun and shenanigans they had. I was taken aback; in my head cocktails and laughter aren’t part of a conference centering on your child with a rare disease. Melissa said something along the lines of, special needs parents get together without their kids in a cool city and we aren’t going to go out? We don’t just sit around and cry all the time.

As odd as it sounds, a part of me did think that’s what they did to some extent. Because comparing the birth and beginning of her son’s life to mine fills me with sorrow. Because I can’t imagine reshaping the image I have of my life and kids around something like PWS.  Because I felt like Melissa and I were in this parenting adventure together, but my kid doesn’t have a rare disease and therefore I need to treat her family with kid gloves. Because I feel tired just watching how hard they have to work to keep their child safe and give him as many opportunities as possible.

This is what I hope is the take away from this post; I noticed that those feeling of sorrow for them gets in the way of just being with them and knowing Kemett as more than a kid with PWS. Which is the real tragedy, bc that kid is hella cool. I mean, he wears hats and loves the White Stripes.

Melissa inadvertently helped me see how I was painting her life and family with a big scary PWS brush that blocked out all the other colors of them. I am slowly realizing PWS is a part of their life and Kemett, but like a previous blog post of hers, Kemett is so much more than PWS. I’ve had family and friends ask me about how the Demands are doing, and I may be projecting, but hear a similar undertone in their questions. The unknown is scary and PWS is pretty rare, so Melissa and I text and talk about food safety and play dates. But I also work on remembering and knowing the Demands as who they were, and who they are now. Which can be boiled down to college friends that are part of our parenting village that we’ve caught dancing to Ghostland Observatory alone in their living room.

And I work on seeing Kemett for who he is right now, which is the sweetest little boy with the biggest blue eyes that can chat your ear off.  In some ways he is the same as my son, and in some ways he is different. They both loved Daniel Tiger and playing on swing sets. They both love their little sisters, and they have both driven their moms to tears due to frustration and love.  Having a friendships with the Demand’s has shown me how life moves on, a mother is not going to lay down and stop being because she is faced with an unexpected challenge. When I tell Melissa I don’t know how she does it, she says back what is her option? And she will point out how we all have challenges and have to work hard. She has shown me that to really be their friends, I need to take off the sorrow glasses and kid gloves and ask for their help and sympathetic ears while doing the same for them.  Yah know; just literally act like friends act.

As members of the Demand’s community and as their friends, these are some little things I’ve learned that show support. Asking about how K’s doing in school, what baby Mabel is up to, how Andrew’s swimming is going, what amazing decorating Melissa is doing.  Also, as with any family, they are busy people. So continuing to text to make that play date or date night happen. Or simply share their posts on PWS. They have to go into about every situation educating others on it, so the more the public is aware of it, the easier that load gets for them. And best of all, share your life with them. Melissa and Andrew are great empathizers that love being there for their friends. Plus they have a truck; don’t we all need a friend with a truck? Or is that just us?

Thanks for reading these ramblings and being a part of the Demand’s world. Melissa is always asking for more questions on her posts; please let her know if you’d like examples of their embarrassing college shenanigans, I am more than happy to share some good ones.

 

all

The Demands and Chugers

dem

Photo by Ashley Rachel Photography

dustin

Melissa and Dustin in a cornfield

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