downsyndromeawareness

#DownSyndrome #downsyndromeawareness #DevelopmentalDelays
Today was one of those days where I found myself asking "what next?"  We were at the park with two of our three kids. Our oldest who is nearly 21 and has Down Syndrome and our youngest who is 8. Our 8 year old ran around the park doing her thing. Our oldest picked a swing and I pushed her. Over the years I have seen the posts about the very high functioning people with Down Syndrome getting out of high school, going to college, becoming models etc etc etc. And that's .... super. But it's harder to find the stories from parents whose kids are not so up there on the scale. Last year, before the pandemic, she was involved for a time with a local organization that gives the adults with cognitive delays a place to go. Perhaps they went to volunteer some place, maybe they went bowling, maybe they just drove around and got food. They did something to get out of the house so their caregivers could go to work or take a break. Those are the stories we don't hear about. It only lasted so long, and she refused to go. Now, she's home. Every. Damn. Day. And I can't leave her alone because she doesn't understand, please don't microwave metal. Please don't consume soy sauce. Please don't take a walk by yourself. She needs someone to watch her. And asking for respite care is not as easy as all that. And our family is limited.
We are one of those families whose kid falls into the category of not so high functioning so they don't make it into a tv show or land a modeling contract. I have nothing against those individuals whatsoever.
What I have a problem with is that while it's great to want to show the world that a label isn't everything, at least show the world that that label holds many different variables.
And some of us are left with trying to figure out what happens to our loved ones.
I'm tired.
I'm concerned. I go over game plans in my head.
Financial concerns are one thing.
But it's the love, the support. The real human connection that she'll lose when we die.
Because the fact is, she barely has it now while we're alive.
The world is consumed with feel good stories about the person with the disability who conquered it all and is giving TED talks about the power of positive thinking and not feeling sorry for yourself.
But it's not nearly concerned enough about recreating a society that needs to make room for people who aren't keeping up with the rest.
I need a break. And taking that break is impossible while I'm not only fighting her challenges but fighting an uphill battle to raise an awareness to disability.

For Down Syndrome Awareness Month, be aware of the Down syndrome momma. The momma that loves her child unconditionally but struggles from time to time with a life she didn’t expect or ask for. Nevertheless she is her child’s greatest protector, advocate and champion. She persists when the world tells her it just isn’t possible because she knows anything is possible when it comes to her child. The Down syndrome momma’s heart softens to those around her that are different or in need while her spirit finds a strength and determination she never knew she had. She is exhausted mentally, emotionally and physically in a way she could never describe but still somehow finds the energy to advocate, write letters, read new research, try new therapies and schedule appointments all for her child. Be mindful of the Down syndrome momma that keeps a smile on her face that hides her struggles. She doesn’t want your sorrow, pity or disingenuous comments but she desperately wants your understanding, support and friendship. She finds it hard to balance celebrating the absolute joy her child brings her whilst admitting that life with Down syndrome can be hard. Very hard. The Down syndrome momma doesn’t want to change her child but she will do everything in her power to make sure the world changes for them. This Down Syndrome Awareness Month, take a moment to see the momma behind the child. Original words written by Baskets of Love Down Syndrome Support Society. @basketsofloveds

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Waiting for my two year old to start smiling again was one of the hardest things I've ever done. He is fighting B cell Acute Lymphoblastic Leukemia. He is definitely a warrior. #teamreadyfreddiego #downsyndromeawareness
#Cancer

#Pledge2EndBullying You can BE anything. Please choose to BE KIND. #SpreadTheWordToEndTheWord #choosekindness #bekind2all #Respect #Rocktober #rockthe21 #downsyndromeawareness