It takes a village. It truly does. Finding your village is so hard. At first you don’t know where to look or even what or who to ask for. Who can you trust with your heart? What are my child’s specific needs? Where does environment exist where they will flourish and bloom? After digging and researching and constantly inquiring, you move heaven and earth (or it feels that way) and start assembling your people.
Having a little one in the hospital is tough. Before Henry’s scheduled surgery, I was desperately searching for some kind of guide to give our care team about Down Syndrome. When I couldn’t find a resource I decided to make one. I hope these tips are helpful to other members of the Lucky Few out there.
Don’t Just Talk About It
Are you truly making the world an inclusive, livable, safe space for all? Because when we cut down the heart of all these diagnoses, we find these people in our community just want to live in the world with everyone else. They fight every day to exist in our world. We cannot provide an inclusive, livable world until we protect this part of our community. They are all at much higher risk of severe complications and death from Covid. So make sure you support during awareness months by not just talking about it, but being about it.
Pure fear. Electric and bare. Nothing else was except fear. She was sleep-deprived and strained. Out of the tangle of anxiety and among the darkness the vaguely implied impending decline, a light emerged. Though it was dim at first, she became obsessed with it and it began to grow. Snap. She was fully awake again.... Continue Reading →
Are there any medical upsides to Down Syndrome?
You get to a place where seeing the upside is easy. The search for the upside began as a bumpy road for me, but after I hit my stride with research I began to feel my heart rise. Looking at young adults with DS in their journeys to independence and happiness was huge for me too. Even though negatives will always be present and presented to you in different forms, you almost become indifferent to it in light of the overwhelming positivity.
How do you deal with a loss?
At the risk of sounding hippie- dippy, I'm going to be completely open. Recently in the car on the way to one of Henry’s therapy sessions I became overwhelmed with an empty feeling. Somewhere deep in my core was aching. Having my children unlocked something in me. I’m more self-aware. I’m more in tune with... Continue Reading →
Are you sad that he’ll never marry because of his DS?
We are not at all worried about Henry forming friendships. Henry can open up to people but he is immediately very sure of who he likes and who he doesn’t care to be near. He is a bit of a ladies man. Henry already has the sweetest girlfriend at school ever! She's gorgeous and he just stares at her all through class! Swoon!
Anyone else tired of the noise?
I've noticed there is a perception of distance from the Supreme Court Justice hearings and subsequent confirmation to our every day lives other than the two high emotion empathy camps of #mentoo and #believesurvivors. I’ve been thinking about different ways to view it all so it becomes more relatable and accessible to me on a community level instead of on a personal level by putting myself in the accused or survivors' shoes.
What should I say to parents who have a baby with DS?
Never offer “I’m sorry” in response to learning a child has an extra chromosome. There is nothing to be sorry for; All life is worth celebrating. Just don’t interject any negative comment or anything that may carry any feelings of pity along with it. Everyone has a different road to acceptance with their diagnosis and some may still be working through it! Don’t assume anything. If the family begins a conversation about DS, join in! If not, just stick with the positive statements you’d make anyway!
What’s it like to raise a strong-willed child?
His facial expressions are hilarious when he is mad. He has a stink eye that is world class. We have to really REALLY make an effort not to smile or laugh when he’s acting out. It’s hard. He has preferences. Strong ones. He fully lives up to his name. Little king of the house.