Tuesday, February 27, 2018

Superman, Captain America, and the Lion's Plan to Bring Back The Sun

My nephew Eli, my niece Lainey, and Kaden were playing in the living room floor on Saturday. Eli was pretending to be Superman and Kaden was Captain America. They were drawing up an elaborate plan to stop the rain and bring back the sun. Lainey, who had been playing a lion was told she couldn’t take the chalk to draw up the plan on the board because lions couldn’t draw. So she transformed so she could draw.

Kaden- “Who are you, Lainey?”
Lainey- “I’m a human.”
Kaden- “No, but who are you?”

We are often the same way. We are human. But we may wear many different hats, capes, or masks. I can pretend to be super mom and that I have everything under control and there are days I do feel that way. I try to be positive and constantly push through while also trying to push Kaleb to work on skill development but at the same time I am human. I have days where it’s not okay. It’s not okay that I don’t know how I’m going to juggle it all, while already worrying about the pros and cons of different class placements for next year’s daycare class, or thinking through what to do to help his motor skills progression or communication skills. I’m not always super mom, or even like in the case of Lainey, a lion, strong and saying hear me roar. I’m human, and I feel that the past few weeks, like our weather, there has been a bit of rain. We continue to worry and seek for answers on Kaleb’s hearing. He’s continued to fail hearing tests. Last Friday’s hearing assessment didn’t tell us much and we still aren’t sure what is going on. He wasn’t cooperative and have an appointment tomorrow because it looks like one tube is closed. We continue to see Kaleb struggle to progress on motor skills. We are having to admit more and more that he is struggling and having different issues that the majority of those with Down syndrome. We await the neurologist visit at the beginning of April to explore his high tone and if he could possibly have cerebral palsy due to brain bleeds from being a micro preemie.

While there has been rain there has also been sun. Kaleb now wears underwear when he’s with us. (Still in diapers at daycare since he has been inconsistent). While he still can’t stand or cruise along furniture he has made strides. He now tries to walk on his knees when he pulls to his knees. He even surprised me the other night when I was bearing most of his weight when he saw something he wanted and picked up his feet and tried to walk three steps forward. Since then he has done it another few times. Saturday morning he also took a few steps in a four point crawl. These are all cause for big celebrations.

It is tough, some days more than others. But then again, that's parenting. It is okay to remember I’m still human. But I will continue to work and to transform myself in my attempt to be what I need to be for my kids. So I will try to channel my inner supermom (Rockin’ Mom). Sure there are days with rain, or even some times flooding, but the sun will be there right behind the clouds. Like the kids, it might mean me transforming into whatever my son needs and making a plan of attack, while I work to help Kaleb transform into the person he is meant to be and to reach his potential. Sure there are days of rain and those days are hard, but I can’t begin to describe the days when the sun is shining. 


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