This may come as a bit of a surprise to some of you, but there have been a few times in my life when I have been described as a control freak. OK, maybe not just a few times, but most of the time. Fine, all of the time. I like rules. I follow rules. They keep things in order, and thus I remain in control of any situation that is thrown my way.
House is clean before bed. Check. Dishes go in the dishwasher just like so. Check. One multivitamin and Omega-3 in the morning. Check. Shoes off when inside the house. Check. Dairy products, baby food and produce are organic. Check. The American Academy of Pediatrics recommends breastfeeding your child for one year. Check. Check.
If it falls somewhere on the path of “straight and narrow” then I likely follow it. Who wants to mess with a good thing? In my world rules were made to be followed – not broken. Who knows what might happen then?
So what does a control freak do when everything is suddenly out of control? What do you do when all of your plans seem to go up in smoke? I’m not talking about your picnic lunch being rained on, or missing the last bus home of the day. Think – “you have cancer.” “The car came out of nowhere – it was so sudden.” “He has Down syndrome.”
I would love to be able to tell you that I accepted Charlie fully from the second he was born. He was my baby – I loved him. I nursed him, bathed him, and changed him. I did everything that any new mom would do.
And just like every new mom I cried. Not the new mom “baby blues” tears. I was the mom with tears streaming down my cheeks, puffy eyes, runny nose, and gasping for air – I was that mom.
The doctors and nurses that examined our baby endlessly always seemed to be looking for something wrong with our new baby boy. We saw; neonatologists, cardiologists, pediatricians, family practitioners, gastroenterologists, neurologists, audiologists, lactation consultants, nutritionists, ultrasound technicians, radiologists, and genetic counselors.
Our son seemed to be a mystery to the medical community. He doesn’t have any of the health conditions that are common with children with Down syndrome. No heart condition. His kidneys are fine. He nurses like a champ (even though we were told he would struggle because of his low-muscle tone.) Not. One. Problem. Yet, as they would all gravely confirm – he has Down syndrome, and would begin to rattle off a list of challenges that he would/could face. But he was healthy. He is healthy. And they seemed to miss the most important and obvious part – that he was simply a beautiful baby boy. He was just a baby.
You see, doctors (and I mean this in the nicest way) are control freaks too. (And I can only speak from experiences – both loving and not.) They like to fix people. And you can’t “fix” Down syndrome. As a result, it seemed as though the medical community had placed a big label on the forehead of my son. From the moment he was born. It was as good as tattooed on his forehead. Down syndrome.
Even I – his mother – saw this label first when looking at my baby boy. I was blinded by it.
My fears ran the gamut – from simple: Can we take him home from the hospital right away? Stupid: Will he ever be able to do a somersault? Vain: What will our family photos look like in the future? To the unknown: will he live with us for the rest of our lives? And what about Henry – would he be weighed down by the burden of a “special needs” brother? This label was dominating my life. Fear gripped me and had full control.
I wished this hadn’t happened to me. I wanted my biggest worry to be about what outfit my new baby would wear that day. Not when we should schedule our early intervention evaluation. I didn’t want to meet other parents of “special needs” children. That was their world – not ours. I was angry. Why had God picked me to be Charlie’s mom?
Time passed and the fear gripping me began to loosen up. Just enough for me to try and “take charge” of my life again. This time I would be unstoppable. But as I tried to get control it felt like sand slipping through my fingers. There were frantic phone calls to Alex calmly (sort of) telling him that we needed to get rid of all of the mattresses in our house as they were slowly killing us with their toxic fumes. They needed to be replaced immediately with a more natural version. Plastic cups and bottles were tossed. New stainless and BPA-free models graced our kitchen shelves. If I was going to be super-mom did I really think disposable would cut it? No.
You get the point. I was desperately trying to find solid footing and it wasn’t going to happen with a new mattress or sippy cup. I was scared and the lies and fear gripping me seemed to be easier to believe than the truth.
Yet I began to accept my baby boy. I couldn’t help it. I began to see his big blue eyes and melt-your-heart smile first. After a while I could only see Charlie. The tattoo on his forehead began to fade away with the days.
So, what is my point? I guess that we are all control freaks in some way. We all have our own “stuff.” We all want to feel in control in an out-of-control world. Yet, no matter how hard we try to tie things up into a nice pretty package and present ourselves to the world our “stuff” gets in the way. We want to give the impression that everything is fine. House is clean. Car is new and shiny. Family photos are perfect. Hair and outfit are just right. And for what? I didn’t even realize all the “stuff” that I was carrying around. It blended easily into my life. The tangle of lies and truth were woven so tightly it was hard to see where one started and the other ended.
Then it hit me like a ton of bricks. The Lord, who is our Father doesn’t judge us, wishing that we were all perfect. He doesn’t place us into a labeled box or toss us aside because of our own “syndromes.” And we all have them – labels that we place such great importance on – things that dominate our lives. Anything that takes our eyes away from Him. And yet He loves us unconditionally.
I now see Charlie just as he was from the beginning – the day he was born – a beautiful baby boy free of any “stuff.” After all, I am his mother and my love for him is unconditional.
My love is the same for Henry, and I am no more certain of his future than I am of Charlie’s.
You would love the same way if it were your child.
Don’t get me wrong. I’m not trying to pretend as though I have figured it all out. I’m not suddenly perfect – far from it. But I do like my new journey, one that is a bit off the straight and narrow path. My life is deeper and richer – it is pleasantly “full.” Each moment is lived and savored. It is real.
Do I still have some of my “control freak” tendencies? Come and check out our house before bedtime – you can be assured that everything is in its place. But this does not control me. My “syndromes” are not first in my life. The Lord is. Oh, and all of the big fears that I had when Charlie was born? Not one has come true. Not one.
Now before you start to picture me as the type of person that now sails through life offering prayer and encouragement, carrying my bible around without a care in the world let me clarify – I am not that person. Yes, I love the Lord, but I don’t have it all together. I cry at the drop of a hat. My heart hurts often. But the joy is greater. I am often overwhelmed by the future. But I give it all up. I give each day to Him. It is all I can do.
Just a quick note…I am writing this story to share the beauty of my son’s life and want to focus my time on our story, not the editing process. For this reason, I am doing something that goes against all of my “control freak” tendencies. I’m not allowing myself to go back and edit any of the posts, so what you see is what you get. This is extremely hard for someone who could happily edit a piece again and again…