I am starting to lift my veil of pure anger towards people who devalue those with Down syndrome. It seems to be a widely common thing that those living with Down syndrome and loved by their families are not generally hated, but if given a chance to get rid of them before they wrap themselves around someones heart, most would say toss em'. People may show kindness to my daughter but do not understand how aborting their own differently formed baby reflects how they truly view Fiona. Its a mangled inseparable vine, the actions are mixed in with the words and I am left with a headache of trying to straighten it all out.
It comes back to the selfish/selfless argument. Am I selfish for not wanting to give up my baby to save her from a more difficult life, or selfless for putting aside my own fears and letting my daughter choose her own life destiny? Is it selfish of me to bring into this world another child who will take resources away from those already living with disabilities, or selfless of me dedicate my life to give a child a chance to life a long and fulfilling life. I know without a doubt where I stand in this battle, but I understand how the other side sees it. I understand that their arguments are not barbaric but rather legitimate concerns. I just wish they could see it through my lens.Oh, its so beautiful on my side.
I will preach it from the mountain tops not to treat Fiona any differently then any other child, but I may be the biggest criminal of all when it comes to this. Exhibit A.
We catch Fiona coloring on the wall, and what do I do? Why, I jump to grab my camera and start firing away as I am encouraging her to keep going. My baby is coloring! She is holding a pen, using her shoulders to stabilize her wrist and put pressure through her fingers to make beautiful marks on my wall! Except, they are not really beautiful, they are scribbles and they are ON THE WALL. I would never have reacted this way with my boys. In fact, I believe my reaction to this same exact scenario not 6 months ago with my boys was greeted with a nice firm grab of their wrists, a very long time out, grounding them from all crayons/markers for a week and a lecture. I still haven't scrubbed her artwork of the wall.
Consistency is the most important behavior a parent can possess. Oh, and it is so hard. It is so hard not to give in to tantrum throwing toddler because one more whine literally will snap something bad in your brain. Its so hard to not encourage a good thing if its done in a bad way, like drawing on the wall. But if I have learned anything in my 4 short years of parenting, its that how you treat your kids in the first few years of life, becomes a rock solid foundation that is hard to break. I am reaping the pains of that with things that I am trying to undo with my boys.
Fiona is different from other children, yet she is no different from other children. I can't even wrap my head around it completely, so I certainly don't expect you to. But this should be easy to understand- my job with her is no different then my job with my boys... to love and nurture them to the best of their potential. Her love for drawing is something that I will nurture, but only next time encouragement will be given to drawn on paper, and discipline will be given for drawing on the wall.
Celebrating milestones is something that is a different in our household- something that Down syndrome shines its little light and makes an appearance. But at this stage in life, its the only place it shows up. Some may think that Fiona's "happiness" is due to her Down syndrome as well, but I think she is just a baby soaking up an abundance of love- who wouldn't be happy and content when they are showered with love as much as she is?
She is definitely less of an accessory in the room, and more a part of the fun, now that she is on the move. She gravitates to her big brothers, following 30 seconds behind them, everywhere they go. Thank you God, for giving my boys patience with her and almost always involving her in their play.
Next to consistent, is to be intentional. Life continues to get busier and without intention, you'll miss what you need most. I have wanted nothing more then to take a nap every day this past week. Or at least, to just lye on the couch and let the kids watch TV all afternoon. But I have to force myself to be intentional. Because I will never get this time back. So some days we relaxed, but some days I fought it. Two of the best things we ever received was this bike seat for Fiona and bike trailer for the boys. I don't even remember who gave us these hand-me-downs, but riding my bike with all three kids is seriously one of the greatest things right now. So thank you, to whoever you are that blessed us with these.
*the bike was stopped for the pictures
Without getting into a theoretical debate over when a baby is considered a person, you don't have a choice to be a mom. That is decided for you when a baby starts forming inside you. But you have a choice in what kind of mom you are. Me, I choose to be a consistent, intentional mother. I choose to open my arms to whatever life delivers, and face this thing motherhood which is only certain of two things- to bring you joy and pain.