Are You Worried About Her Future?

If I said I didn't worry about Ellie’s future at all then I’d be a liar. But I worry about all three of my children’s futures, I think it’s a natural part of being a parent. Looking back at my life I truly believe I was being prepared to be Ellie’s mom all along.

My Grandma Hattie always said that from the moment our children are born, that we are preparing them to grow their wings and fly. So as a teenager, I knew that at age 18 my mom and dad would set me free. It was part of the master plan! You either get a job, go in the Army, or in my case go to college. And this belief was true for all 6 of my brothers, including Danny. You can read more about my brother Danny here.

Danny graduated from high school at age 19 then moved out of my parent's house and into a group home type setting. He lived with other adults with varying intellectual disabilities while learning life skills. He would come home on the weekends and from what I can remember as a 7 or 8 year old, he seemed content with his situation. After living there for a few years he moved into his own apartment. He still lives there today, and is doing amazingly well. He has help from a state-funded aid that comes once a week to help him grocery shop, clean his apartment, and drive him to his appointments.

My brother lives a fun and fulfilled life. He has many friends and is very active in his church. He walks everywhere he goes, exercises, and volunteers with some of his free time. He is also the President of an organization called Champion Team. You can read a nice article about this organization here: News Register Article

He’s the handsome one in the Raiders jacket! I’m so so proud of him. 

My mom tells me stories about how my dad used to say “he will live with us forever” and she would reply “oh no he won't!”  My mom and I have had many conversations about Danny and his independence. She admits that it was her fear of what would happen to Danny when she and my dad were gone from this earth that drove her to fight so hard for him to live on his own. But she also believed in him and knew he could do it, and he has.

I recently read an article by Ellen Stumbo and cried big ugly tears, it was beautiful. It's called What if She Lives With Us Forever? Her words really resonated with me. She explained how she is truly OK if her daughter with Down syndrome wanted to live with her forever. But that it wasn't up to her, it was up to her daughter to decide. I feel this way about Ellie. I don't know how Ellie will be as an adult. I don't know if she will be as independent as my brother. She may be, or she may not be. But honestly I am not worried about her living with us forever. I’m going to support her, guide her, and help her grow her wings just as I will with the boys. And maybe she will fly away and live on her own like her Uncle Danny. Or maybe she will live with her friends in a group setting. 

The network of people I've met who have children with Down syndrome keeps growing and expanding. It’s a loving community that stretches across the world. So far Ellie already has many friends in her age group, and a pre-arranged marriage with a boy named Mason. I love his mama and he and Ellie really would make a cute couple. He lives in Pennsylvania so we will have to figure out the logistics when they are older. I tell his mom she would love Oregon though. Is pre-arranged marriage even legal in the US? Don't worry, I will let Ellie choose who she marries someday, it's all in good fun. But I do know Ellie already has a prom date should she need one! 

This photo is almost a year old but hello, isn't he seriously adorable?

As these kids grow into adults I can see some of them living together. Speaking of which, I have been obsessed with a new documentary called “The Specials” about 5 young adults with intellectual disabilities who live together. It is awesome! My mom and I sat and watched 5 episodes in a row and couldn't get enough. If you haven't watched it yet I really suggest you check it out.

I can't say enough how grateful I am that I grew up with Danny as my brother, and with my mom who believed in his abilities. She was preparing me to be Ellie’s mom. She has shown me how to guide and nurture my daughter, and to believe in her. Danny is a vital part of our big family and is loved and valued as an equal. I’m not afraid for Ellie’s future, I'm actually excited to watch her fly.

This week's song is a mushy one, but I love the lyrics. I think it just fits.

My Wish - Rascal Flatts

A Little Dream with a Big Message

For some reason I don't remember my dreams all that often. It seems like when my alarm beeps sharply at 6am, all dreams leave my subconscious. But on the weekends when I'm allowed to wake up when my body clock says it's time to, I tend to be able to recall what I was dreaming about. I wonder why that is? 

This morning I woke up smiling and my heart was full and happy. I had a short little dream, and it was about Down syndrome. I don't tend to dream about Down syndrome really but today was different. My dream was about pregnancy and babies with Down syndrome. I woke up with the words "inclusion in the womb" in my head. In my dream, I lived in a whole new world, where parents who were finding out about Down syndrome are not gutted and devastated. Where doctors weren't pushing termination as a first choice. Where these babies were celebrated, wanted, and loved. Parents who received the diagnosis were genuinely OK, and were excited to welcome their unborn child.

I am part of a private group on Facebook for women who are pregnant with a baby with Trisomy 21. Most of them are going through all the same emotions I did when we received the news. They are worried for their future, as well as the future of their baby. They are worried for their other children's future, how will it affect them? What about potential health issues? Will their child do OK in school and be included? Will they go to college, or get married? Their pregnancy is not what they dreamed of and each mother is grieving in her own way.

What I also get to witness is the fear that crumbles when these mothers meet their children and gaze into their eyes for the first time. The love that binds these mothers to their children is undeniable and powerful. They look back and wonder "what was I so afraid of?" Every. Single. Time. It's amazing to hear about the father's and their love for their children. The fierce protective love that these dads feel, it always overshadows any preconceived notions they had when receiving the diagnosis. And not to mention the special connection these new babies have to their siblings. It is something quite magical and I get to see it daily with Ellie and her big brothers.

Who knows what the future holds, I just know that I wish with all of my heart that this dream could become a reality someday. I've had a few prophetic dreams- I dreamt of my pregnancy with Ellie as well as her diagnosis. I can't help but hope that this dream can someday become a reality too. I'm not saying I'm psychic by any means (haha), but I am already seeing a shift in perceptions. It's a slow process but it's happening. Maybe someday it'll be true, and I hope I am here to witness it when it does.

I have to end every post with a song and this one has been on my mind lately, it's a good one.

A Change is Gonna Come - Sam Cooke