I should be packing up and getting ready to head to Kansas City Mercy with Cody after school…but instead, I am digging my way out of an emotional box of quicksand.
But, I promise, I am full of joy.
I know that the holidays can be tough for many. And you would think by now that I would know it’s coming. That I would sense it and be able to think ahead. Really take charge of it. And yet, for the life of me, I never can until it is on top of me. Smothering me. Maybe because it is the holidays and we are so busy trying to get all of the things done in time and not lose the spirit of Jesus’ birth in the process. But it isn’t until I see myself not responding to texts / calls, not meeting deadlines, not being nice to my children, longing to stare at the wall or take the long way home and just sob that I remember why my soul aches so much.
It is almost December 17th. It is almost December 25th. Cody was due on Christmas Day but came a little early.
This would be what I consider to be Cody’s ‘golden birthday’. 17 on the 17th. And boy is it a blender of emotions. On the one hand, I remember being told Cody wouldn’t see his first birthday. And am I thankful that we are about to celebrate his 17th. After watching that video online about the momma of a boy feeling like his growing up was a slow breakup…boy I am in the thick of that! Cody informed me this week that he would be spending his birthday at the school basketball game and cheer practice. He wanted to let me down easy. And honestly, it didn’t hurt at all. It was a joyous moment for me. As there is so much joy in each birthday, for both of my boys, Cody’s aging makes my blender of emotions kick into high gear.
When your child, who is differently-abled, reaches 17 there are a lot of things you have to start pulling out of that box you tucked way down deep into your heart and start getting real with yourself. You suddenly realize that you are standing on the edge of a cliff. At the edge are all of the resources that have helped your family make it to this point. Your tribe. Over the edge is adulthood. And you’re just supposed to jump off….you and your family, alone. While all the resources are on top of the cliff waving at you…nope, they can’t come with you.
My mind continually races….What resources will no longer be available to Cody once he reaches adulthood? All of the work he has done in private therapy nearly every single week day of his life just stops? There aren’t really adult services to help continue that progress? What specialists are there to continue his care post pediatrics? Special Needs Trusts, life insurance, but wait, make sure you don’t have too much saved because Uncle Sam doesn’t like that. How can you make a plan robust enough that Cody gets what he needs and Cooper will understand his role as more than just a little brother without feeling the pressure? HOW DO YOU KNOW WHAT TO PLAN FOR? Options post-graduation? There is no stability in options post-graduation for a meaningful, fulfilling life because we are on the cusp of realizing that they aren’t many options and trying to fix that. How can I prepare him so that he understands? How do I make sure that I understand his wishes and that we lead by them? How can I help foster meaningful relationships post high school? Where are the built in social events for adults? How can I prepare him to live self-sufficiently now so that when I die, I can rest in peace knowing that he will thrive?
So you worry endlessly about the next chapter. Except, now that next chapter….it’s here….you’re about to turn the page and step into it. Yet this book, it doesn’t have a single piece of advice in it. Instead, it is an endless sea of pages with arrows pointing you forward to the next page.
It can be a real drag.
How do you balance the joy and the sorrow at once?
There.is.so.much.pressure. I desperately want my boys to live a happy and fulfilling life. But, let me be real honest here…for the Cody Jensen’s of the world…it takes a village and a warrior mama and dad to get it done. Instead of supporting their happy and fulfilling life and being a sounding board and a soft place to land…you have to be the driving force. And you don’t even know how to do it. It just gets to be a lot sometimes.
I can’t decide if it is a good thing or if it kinda sucks that we have a big appointment so close to Cody’s birthday. Maybe that just adds to my emotional blender. The last time we had genetic testing Cody was about 7. They found a “blip” and they didn’t know at the time if this blip meant anything. So, they filed it away in the genetic testing filing cabinet to wait it out. Now, we retest. With the insane amount of progress the world of genetic testing has made, we are hopeful that there might be some sort of answer to that, or any other, blips. Cody does not have a disease to be cured. But Cody is definitely marked under the OTHER box in all of his medical mumbo jumbo. And y’all, just trust me when I say it makes a lot of things reallllllll hard and complicated when you check the OTHER box. There aren’t support groups for the OTHER box. There aren’t dedicated doctors researching the OTHERS. There isn’t a 5k and fun run dedicated to the OTHERS. There aren’t even doctors out there trying to work with the OTHERS. I mean, we get passed around like a white elephant gift because there isn’t a clear path or diagnosis to lean on to move forward with a care plan. “Oh, he has a what? An appendicostomy? You mean an appendectomy? No? Oh. He receives an enema through his appendix? Interesting. I mean, is he having trouble with it? His belly doesn’t feel tender. Just call the GI department if he ever has trouble. Nah, we don’t really need to do an ultrasound annually to make sure nothing is going south with his appendix…that there is any fecal poisoning going on….even though he really wouldn’t be able to EXPLAIN SYMPTOMS IF HE WAS HAVING THEM. Nah, we will just cross that bridge if we get there. I mean, let’s not even consider getting him on an established annual routine for checkups so that when you, mom, get old and senile, he will already be in the habit of these checkups.” “Oh his nerve problems? Yeah, let’s just put him on Gabapentin from here to eternity…even though it doesn’t really do more than mask the problem.” Forgive my attitude. But that’s western medicine for ya. Especially when your check mark is in the OTHER box.
And while I could give a flip less about a name to associate with Cody other than a perfect child of God and my son, I know that more testing will hopefully lead to more answers and that will only help Cody in the future, specifically, for when I am no longer here. And, Lord willing, will help other generations of Codys.
A few weeks ago, I got to take Cody to be fitted for a letterman jacket. Y’all. I was embarrassing. I could not contain my emotions. I have replayed that moment in my head regularly. He doesn’t have a clue to its significance. Boy did it mean something to me. I will cherish that moment until my last breath. And it made me realize that this next year will hold prom where he will wear his first ever tux / suit. Senior pictures. Graduation. Adulthood. And then, we will hold hands and jump off the cliff.
So here I am. In all of my honesty...being thankful, scared, excited and angry at all the same time.
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This is no way a pity party. But maybe like a confession. A way to process my many emotions and just maybe help someone else not feel alone.J
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