I won’t lie.. today has been tough. Last night was a challenge. For that matter, I’ve needed a manual just to understand the past two weeks.
Being the parent of a special needs child is amazing. Also, it’s hard. Some days are unexplainable, while others are so typical it’s scary. Since returning from Europe, we’ve noticed a new detail to Ingrid’s already “sparkling” personality. She’s been mean. And, I’m not talking about a minor temper tantrum or so. I’m talking mean. In ways that are uncharacteristic for her. Ingrid tends to pick up on behaviors of other kids, just as any other child does, but trying to get her to understand that not all things are acceptable or okay is an entirely different story. We’ve gone through phases of swear words, throwing things, saying inappropriate words at the worst time possible .. ya know all of the normal things parents go through with kids, yet recently this “new” stuff has me stumped.
When she raises her fist to my face as if she wants to punch me, while I’m talking to her about her unkind behavior, that’s not Ingrid. When she scratches her brother and hits him for no apparent reason, that’s not her either. All of these things, and more, have us scratching our heads as to what’s happened and why.
I’ve said this countless times, and I’ll say it again.. each day, each new phase is a guessing game for me. There is no book to truly decipher the moods and/or actions of our daughter. Sometimes I wish there was. Each time we’re faced with something new, I try very hard to remember the key elements to my child.. she is just a kid. There doesn’t have to be a fancy explanation or added diagnosis to understand that crucial part of who she is. She is a kid.
She is a kid who needs a little more understanding, a little more patience, and a lot more hugs. An endless amount of encouragement and deep breaths. And with that, we can only take one day at a time, knowing that tomorrow is new day.
Her glimmering eyes, sweet smile, a girl filled with bounds of potential.. I pray that her strong-willed personality and independence drives her to crush past stereotypes. She can and will achieve greatness, I have no doubt.
For today, I stumble. At a loss for words, I try to gather my composure and press on in the best fashion I know how. After all, she is my light, my sunshine and my rising star.
About a week ago, my son was vying for attention with their dad and became frustrated with Ingrid. Said he feels that we love her more. This broke my heart. We went on to explain that they are loved equally, yet they were created quite differently. As he is outgoing, tenderhearted, a math and science loving boy, Ingrid is introverted to an extreme, not as independent as him, needs a bit more help with things he assumes are easy.. yet the conversation was hard. Although he understands that she has Down Syndrome, which makes her beautifully unique, and exactly how she is supposed to be, I never want one child to feel more loved than the other.
There are times in our lives when breathing feels complicated and I feel isolated as if no one can imagine what this life is like. Then I remember why I’m here and that I am not alone..
My purpose is my family. The driving force behind why I am the way I am, why I demand a certain standard, why I won’t bend to others expectations.. because of my kids. What fits you may not fit us. What’s “normal” may not be for us. What’s “normal” for us is taboo to others. And that’s OKAY! We learned a long time ago that each path is meant for those walking the steps. Mine is quite different, and albeit sometimes hard, its perfect for me.
As I see her little face staring into mine, I know that what’s happening isn’t always the way I know it to be. Her perception isn’t always the same as mine. That what I know to be rude or insensitive may not be what she thinks it is. Again, I step back. I absorb the reality behind our happenings and breathe. She is learning the rules of life, as we are learning Ingrid. Each day a new chapter. A life that’s no better or worse than any other, just different.
** If my story resonates with you, remember that you are not alone. You can do this and it will be okay! Just breathe.