Skip to main content

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. 


Comments

Popular posts from this blog

My letter to Alex Gordon

Alex, I wanted to share a few pictures with you that show why I'm writing to thank you. You see my three year old, Kaden, knows more about baseball and the Royals than many adults I know. He loves as he would put it "all of the Royals" but without a doubt, without any hesitation when asked who is his favorite player is his answer is always one player; you.  I'm not kidding when I say Gordo was one of his first words. In fact anything baseball for the longest time was called Gordo. I'm not exactly sure why he took such a liking to you. I joke it's because his first ever game at the K and you hit a grand slam when he was not even a year old. For what ever reason he adores you. He even has a little Gordo plush doll that he likes to take everywhere.  This past year has been the toughest year for our family. Our second son, Kaleb, was born 12 weeks early at 2lb 2oz. We also learned of his diagnosis of Down syndrome two days after his birth. He spent...

Home

Sitting here in Kaleb's nursery rocking him I look around his room and think about how many people have contributed to his room. How incredibly loved he is. I look at the decals I searched for and then put up with the help of his daddy. The chair I am sitting in given to us by Heather who sometime soon I will trust to oversee his care during the day. The little bear on the nightstand that Haley helped me pick out for him before we left the NICU. On the bookshelf sits the Curious George from Nana. I also see the Panda bear from Rance, Jessica, and Heath.  Baskets purchased while shopping with Courtney. Even the cart that his Grammy and Gramps found so that we could put all of his medical equipment on so that we could wheel it around the house. Everything in his room all the way down to the baseboards and doors finished by Daddy and Dalton were a work of love as we prepared the room for our little K2. The NICU family print that will soon be on the wall above his dresser, signed by th...

Extra Chromosome and All

When I began my blog I admitted that while people were often commenting on my positive outlook I am not always sailing through on a cloud of positivity. I struggle, I have days where the reality of the past five months sets in or the uncertainty of the future can seem daunting. I told myself that if I were going to write about our journey that I would be open and honest, and that includes the hard moments. The moments, days, or weeks when the emotions hit. Some might wonder why I would write and share those moments with people. Why I would open myself up to that level of vulnerability, especially when those who know me know how I value my independence and strength. In those first few days after Kaleb was born and we had received the diagnosis of Down syndrome I had many emotions that I was ashamed of feeling. “What loving person would ever have these feelings?” would often go through my head and result in me feeling even worse. They were feelings that I could not even bring myself t...