I have two very lovable and inseparable kids, both in the same developmental phase of life right now. And with that comes the inability for one kid to function when they are apart from each other.
This past weekend, Scott and I had the chance to spend four days with just MacGregor. This is a first, since our little dude has been born. My short time as a family of three caused me to walk down memory lane, a place I had not ventured to in a very long time. This blog post is will be clearly separated into two parts. This past weekend I revisited the negative place but found my positive place faster than I had in the past.
The thoughts all started on Friday when a friend of mine, picked up Maddox for a girls getaway. Maddox was thrilled.
Maddox doesn't have the attention span to sit and enjoy very long books and when she throws the towel, so does MacGregor. But tonight was a different story. I was able to snuggle on the couch until my heart was warm.
My upcoming book will focus more on this sensitive subject, but you have to know that when Maddox was born, there was a moment in time that I contemplated putting her up for adoption and walking out of that hospital in hopes to return to a normal life.
This past weekend took me down that dark rocky path again, and had me imagining what life would have been like had I acted on thought nearly four years ago. I experienced many highs a lows during Maddox and MacGregor's four day separation.
I was able to embrace MacGregor's humor, compassion, and intelligence. I saw a different child, one independent of his sister. I saw light in him as he didn't have to compete for attention and I wondered what life would have been like had he grown up being the first child? Would he still have the compassion that he does? Would he be happier not having to be a role model ever second of his life? I wondered if I would have ever been content knowing I had given my daughter up for adoption?
There are many times that I look at MacGregor's innocence and ask myself, "What did I do?" This little guy has more responsibility than he knows. Someday he will be burdened with taking care of his ailing parents. Once we are gone, then he needs to care for Maddox. The responsibility one little man carries is huge and unfair.
While Maddox was away, I found myself dreaming a little about how easy life would have been without her. Would I have ever been able to cope knowing my little girl was out there somewhere? I am not sure? I know raising a 'normal' kid is difficult but I want to educate people on what a typical day is like raising a child with special needs. All the books I read mention the love and rewarding feelings you get, but none of the books mention the pure exhaustion you feel getting though each day.
Let;s take climbing at a campground for example. This happened a few weeks ago.
I was over on another play structure with MacGregor when I turned around to witnessed what was happening with Maddox. She had wandered over to the tower and wanted to climb it. Sounds simple enough, right?
Heck, MacGregor, who is two years younger, just made it to the top.
But nothing comes close to being that that simple for Maddox. First, I watch Scott stand next to her and pretend like he has no clue what she wants because we are working on her independently asking for help.
With prompts though speech and sign, she finally gets her point across. "Daddy, help, climb."
Notice the three people in the photos below. It took one to coax to her, one to hold her, and one to model for her. The person modeling has to show where were to step by tapping the step, then moving her foot to the step and showing her where to move her hands, then tap the bar she is supposed to grab, and finally move her hand to that bar.
And repeat because she needed this not only for the first step but for all six steps. And oh my goodness, that was just to get to the top. Then we have to teach her how to get down. Can you imagine, yet how tedious this process is?
But here's where it gets even more exhausting. The motor planning skills and concept of climbing just doesn't kick in after the first try. We have to walk Maddox how to do this for every piece of equipment on the playground. Then, multiply this by every single task of her day. Everything from when to use a spoon to when to use a fork, to how high to tip the cup when drinking, to how to climb into her chair at the table, how to dress her doll, or turn her four wheeler, and so on.
There are some days that I still want to shout out how much I ENVY those who simply get to peel the paper off that cupcake and enjoy it.
Now, I know there are those who are going to tell me to stop being so intense, stop making every moment teachable, and just enjoy Maddox. I can't begin to tell you how many countless times I have heard this advice. And no offense to anyone that has told me this, but stop making every moment count is simply impossible for me to do.
Let me frame it this way. As a parent, if you came across a teachable situation and had the tools to empower your child and your child was responsive to your feedback, would you seize the opportunity or would you sit back, purposefully hanging on to the tools your child is desiring, and watch them fail?
I absolutely can not sit back and watch Maddox fail.
And that, unfortunately, creates the recipe that creates the intense high strung parent I have become today.
Welcome home baby girl! We missed you tons!