“Mom, I marry Luke.” Nichole said.
“Luke from the show Jessie?” I said.
“Yes. Luke my prince. That my house.” She said pointing at a house as we drove to school.
“That’s going to be your house?”
“Yes.”
“Wait, you’re not going to live with mom and dad?”
“No mom. That my house. My prince. My dog.”
There was a golden retriever outside the house she pointed at. I have a suspicion the dog was the main reason she picked the house. I won’t be surprised if Nichole has a dog when she grows up.
I felt a little sad she’s already thinking about her independence. Yes, I know, she’s only eight years old, but she has Down syndrome so I’ve wondered if she will live with us forever, or at least longer than her sisters. At this rate, she seems to be the first one ready to move out! And while there was a time I was not a fan of the idea of a child living with us forever, I had accepted the idea that she might. Actually, If I am totally honest, I looked forward to her living with us forever. We love her, but we also really like her. Her personality, her sense of humor, how much she enriches our life. The joy she brings to the simplest moments, from making popcorn to going to the grocery store. Thinking of having her living with us forever is something I looked forward to. She’s not a burden to us, she’s a joy, so why wouldn’t we want her around?
But, Nichole is her own person. She has her own ideas and dreams. She dreams of a future where she has her own space, where she’s married to her crush (which little girl does not), and she has a dog.
The truth is, it’s really hard for me to let go of her. It’s hard to think of her growing up and moving on without me.
Because Nichole has Down syndrome she’s needed me more than her oldest, typical sister. The reality is Nichole is more vulnerable, she’s behind in her development, and I understand her speech better than anyone else can. I feel this fire in my belly to protect her, to fight for her, to stand up for her, to help her move forward in life.
I am her advocate at school, I champion for her, I believe in her potential.
If something doesn’t seem right I ask questions, I research, and I push for answers when necessary.
While some people might look at my child and be thankful it is not their kid who has Down syndrome, I feel like the luckiest mom in the world.
And once in a while I think of what she will be like when she grows up. What her school activities will be, what her hobbies will be, her interests, her job. Who will her friends be, how will she do in school, will her speech improve and allow her to have better communication? Who will my daughter be when she’s 15, and 20, and 30?
You know, I’ve even wondered what she will look like – and sometimes when the light is just right, I can see who she will be when she’s a teenager.
But one thing I know won’t change: the fierce instinct in me to protect her.
I want her by my side, but I know that would be selfish of me. Nichole has her own life, and as she grows up she will have her own dreams, her own goals in life. My job as her mother is to allow her to be her own person. My job is to let go and let her spread her wings and watch her fly.
So what will life be like when she grows up? I don’t know. But she’s my guide, I just have to follow.
But that won’t be easy for me.
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My son with down syndrome just turned nine and boy do i understand the need to protect him, to be his voice and to forever have him with me. I guess you could say thats selfish on my part bit letting him go is a thought i try to avoid. Although he is extreamly smart his communication is mostly garbled sounds and hand motions……very few people understand his words. I know when the time comes he will let me know that i have to let him grow up but in the mean time i will enjoy every minute with him even the ones where he is being so stubborn its maddening….i love him more than i ever thought i could love anyone….and he returns that love 10 fold….what an awsome gift the lord has given those of us who are blessed with these very special, very loving children
We were there 15 years ago. I could not believe there would be a day when my son would survive without my being involved in every moment of his life! But little by little I realized my job as a parent was to prepare him to live on his own, with only minimal and necessary supports. And that day is here! At 23, he attends a college program for adults with cognitive disabilities 60 minutes away; lives in an on-campus apartment with 5 young men and two Residential Assistants; volunteers at a nursing home independently and is trying some paid job internships. He also has had a sweet girlfriend for two years. When he graduates this spring, we hope he will live in his own apartment (with support), have a paid job he enjoys, and continue his church, social, and family relationships. Yes, enjoy them always but remember to give them both roots and wings!
“Letting go” is probably the hardest thing we have ever done. But we found that when we got to that hard space, God had gone before us to prepare the way. The “new normal” can be very good, especially when God is in it. Looking back, he has always been faithful, loving and kind. Looking forward? – we trust him for those days, too.
My daughter Kanza is 20 and we live in the Cayman Islands. This weekend she is with her 2 Special Olympics coaches and 2 other swimmers doing a 800mt sea swim in a Bay in Miami. I have been her advocate mother. I washed her hair and blew it dry so she would look her best for her trip. Right now I’m sure she dosn’t look her best but she is having a blast! Being the mother of a child with DS is an amazing ride! I miss her terribly, I’m sure she will think of me at some point today. I’m willing to let her have her life because I realize how selfish it would be of me not to! That is however the only reason I will be watching! I enjoy your posts and wish you Gods richest blessings! Nancy Bodden