There has never been a day that I would change as a mom of a special needs daughter. Not. One. Day. But (I know you’re thinking there shouldn’t be a BUT), when I look into her face and she’s visibly upset it hurts my heart.
Often times there are things we think nothing of such as acts of nature or people that are nothing to be concerned with that trigger a massive reaction from Ingrid. No matter how I try to calm her or help her to understand that she’s okay, nothing works. Sometimes I break. Her mom, the one she runs to for comfort and understanding, love and patience. So many times I want to help, yet after eight years sometimes I just don’t know how.
We live in the Midwest. A location where thunderstorms and tornadoes are common. Last summer a tornado went through our area (we weren’t affected by it) and took out power for many hours. We were incredibly fortunate as nothing was damaged or destroyed, yet the memories that Ingrid has left a devastating impact to her. With every dark cloud in the sky, we are asked repeatedly “Is it dark out?” or “Is it sunny and blue skies?” She patiently waits for an answer, intently seeking comfort in our response. She can read the truth in our eyes when we tell her that the weather is okay and nothing bad is going to happen, yet that usually isn’t enough. She fixates on the weather in fear of the next thunderstorm, lightening bolt or possible tornado.
As she ages, I recall the times in her life when we felt lost. I recall her first few days and weeks after arrival. We were warned of what life would be with Ingrid. How “difficult” things would be and how much help we’d need to make her “normal”. As her mom, the person who shunned away genetic testing during pregnancy (because I didn’t want to be coerced into anything I wasn’t comfortable with AND this baby was mine – however she was meant to be), I decided upon our first look at her that life would be perfect, amazing and we didn’t have anything to prove to anyone! I decided at that moment that she would be treated as any other child – with respect, love and loads upon loads of compassion & understanding – because she’s a child. Plain and simple. I knew that when she went to school she would be in a “regular classroom” because we wanted her included with her peers. She would be treated just as her brother and sister, taking into consideration any extra time and care she needed. I decided that her life wouldn’t be categorized as “special needs” because I wanted her to feel about herself how we felt about her – purely human.
Every day since, I have fought to make her feel normal. Has it been easy? No. But it’s been worth it. Ingrid may be different, sometimes quite difficult to handle, yet she flourishes in her own light and loves in her own way. She isn’t our miracle baby. She is our baby. Is she different than our other children? Yes. But not one of our children are the same. Their uniqueness and bold personalities make them beautiful assets to our family.
Every time I see her cry or upset about things we take for granted or don’t think much of, I crush a bit more inside. I cradle her and explain as best I can. Sometimes an explanation isn’t even necessary, just to sit in silence and comfort her. Sometimes after calming her restlessness or fear, I go off alone and cry. Am I failing her? Then I remember, no, I’m not – because she knows she’s loved beyond measure.
Ingrid isn’t just resilient, she is atomic. She can make you laugh with her outburst of song lyrics and instantly memorized dance routines. She can turn your day from inside out to magnificent with her tiny embrace. She is capable of the same life we all are – in her way and time. She isn’t bound by a diagnosis or restrictions of who she should be on paper. No, she decides each day because she lives in freedom to learn as everyone else, to be who she wants to be, how she wants to learn and to express herself freely. We don’t expect her to be understood by everyone, but we do expect that she delivers the same respect to others that others should deliver to her.
I look at her face and wonder what she’s thinking. Does she know how I feel about her? Is she aware of the joy she brings to us? Does she feel left out when her brother doesn’t want to play with her; simply because he’s her brother and sometimes just wants to play with his friends..? How does over-stimulation feel for her? Every day I’m in amazement of Ingrid. She creates a world of wonder just by being herself.
It’s funny now.. each time something monumental happens in Ingrid’s life, good or not, my dad suggests “You should write a book about her life”. I laugh and shrug off the idea. Then I began thinking.. how beneficial would it be to hear the story of a child with Down Syndrome being brought into the world by parents who refused to have “special needs play dates”, assume that inclusion wasn’t an option because of a diagnosis or that this child who is believed to be “at risk” of every disease, flu, germ, etc, is not vaccinated, yet incredibly healthy! (We control her health naturally – by her diet and building immunity naturally).
So, maybe a book is in our future. The story of a life of a child: A child who has impacted so many lives just by being present, being herself and loving life without limitations.
Her life will be what she decides.
When I became a mom, I decided that I wanted to stay home with the kids until school age. I created a bond with my children that is unlike any other. There is trust, respect, responsibility, love and so much more. Then, when I decided to become an entrepreneur, my why was the easiest part of the business preparation. I do it for my kids. To give them the life they deserve – a life of freedom, to be an example of work ethic balanced with a loving home, to show them that whatever they want they can achieve. Also, to leave a future intentionally laid out for them to build from.
Expectations have changed since having Ingrid. At first, we were prepared to adjust our desires to fit her diagnosis. Thankfully, we never discarded our family’s desires because there was never a reason to fully believe that our life had to be different than what we wanted. Ingrid added to our lives. In all her feistiness and feverish dramatic flair, she has added spunk and edge-of-your-seat antics daily.
It saddens me to see families brought to their knees by what they consider to be “broken” or “imperfect” children. Let me remind you of this (those who are listening).. you’re not perfect. None of us are. We are created exactly how we are meant to be. Sometimes those “imperfect” individuals are the ones who will change your life in the most amazing way, if you allow the walls of judgement to come down.
Society has enough on it’s plate. Our family’s intimate world will be of value to the rest of the world, including my child with Down Syndrome. She is incredible!
Here’s to Life with Ingrid. More stories to come, realities to bare and truths exposed.