Being called Mom is a privilege. So many ladies out there would give anything just to hear those words. Words that are easily taken for granted by the ones who are. Add in an ounce of something extra, like an extra chromosome in my case, and let’s just say that no one is truly prepared for what comes next.
I’ve read the books, joined the support groups and talked to other parents. Just like our kids, there are no two situations the same. Yes, my kid has Down Syndrome. Depending on many circumstances, she may or may not look as though she does. She does! And there is not one speck of her being that I would change. Often I hear that DS kids are delightful, funny, the light of the room, etc. I guess it’s possible that her personality didn’t feel the need to be “typical” in any way because she is not typical. She is delightful.. at home. In a public setting, she is happy, but doesn’t want attention. For instance, about a year ago we were walking into our local grocery store when an employee mentioned how beautiful my daughter is. I’m not kidding when I say she looked at the person and without hesitation said, “Shut up!”. Mortified, I instantly apologize and walk away as quickly as possible! Before, I would have felt the urge to give an excuse or explain her diagnosis, but those days are long gone. She is a kid. Her personality doesn’t have to be a textbook description of what her diagnosis says she should be. She loves to sing and dance, but don’t put her in a spotlight. She will shut down faster than you can crack a smile. She isn’t affectionate. I say this lightly. With her family, she is all about loving on us in her own time and pace. Be warned.. do not engage this kid in hopes of cuddles and giggles. She will run, she will fold, and she will scream!
To go along with my unpredictable kid, I am her mom. I am also the mom who is investing in child proofing our house because she can be an escape artist. I am the mom who blogs in the middle of the night because I can’t sleep so I listen and watch her on the monitor in the likely failed attempt at her sleeping in her own room. I fear so much for her. That she’ll stop breathing during the night. That she’ll wander off while I rest my eyes for a few hours. Or that she’ll think I don’t care because I’m trying to make her more independent. I carry my 4 year old like a baby while crossing through parking lots because I’m afraid that she’ll run into traffic.
I do this mom thing in an unconventional manner, but I do not make these choices lightly. You can probably tell by now that I’m a thinker. I think a lot. That’s not to say that I care about everything, because I don’t. If my kids are involved, I’m all over it.
What I want people to understand is that just like our kids, there are no two parents the same. I adore my kids with every ounce of life. There is not a person out there who can dare say that I’m not involved.. I so am! What happens at their worst times breaks me down. These are things that are relatable, yet change with each perspective. Ingrid isn’t a classic definition of a non-verbal child. She speaks, she yells, she isn’t shy about telling you a two minute story. Whether or not it’s entirely understood, that’s different. I can decipher most of what she says, but there are days.. whew! Then there are the times when she isn’t well. The days that she is feeling unlike herself and voicing her thoughts or feelings just isn’t happening. I can’t begin to express how much it hurts to watch your beautiful baby girl punch herself in the face or scratch her legs until she breaks skin. These days I try my best to hold strong, all while breaking down deep inside. Most of these times, words do not come from her gorgeous little mouth, but only screams and growls. The hair pulling, hitting and tantrums can only mean one thing.. she needs me. She needs held to know that I’ll always be right here. I’ll fix it however best I can.
To add another aspect.. our son. This kid has such a strong, loving heart that he cries seeing his little sister confused and frustrated. He tries to rationalize with me when I’m beginning to get frustrated because she won’t calm down. He will sit down with her and very gently speak to her in an attempt to gain her trust. Having him watch this and grow older every time she is facing a challenge, I often wonder what he thinks. Will he grow up knowing that a diagnosis doesn’t define anyone (I hope so!!)? Will he have the same respect for her in twenty years that he does now?
This is my life. I wouldn’t change one thing about it. My kids are my everything, yet seeing it through different eyes sometimes helps us understand why the parents do things the way they do. We are all different beings with one common goal. We want our children loved like everyone else. Down Syndrome has been a new chapter in our lives. A chapter that I will continue to learn from and strive to be the best parent for her. She is utterly amazing and I cherish every second that I can look into her face! The words “I love you” coming from her (and my son) are the sweetest sound to me.
I guess my point is this.. don’t judge. You have no idea what parents are going through. Our daily home life is different from others, and that’s okay. But cut slack where it’s due. The challenges that face us are continually different and sometimes difficult.
Stay strong friends! Parenting is hard, yet we’re raising a generation of spectacular little souls!