Here I sit, one month and five days past his birthday.
One of the main reasons I continue on with this blog is to preserve memories. The birthday notes are a big part of that. His brothers *love* browsing through the years of birthday letters and memories documented.
There were words I mentally composed on his birthday, 1-2-17. I told myself that I would get over to the computer soon and get them typed.
I mean, I was busy. But it was important to me! I would get over there and do it. Soon.
But after a while? As the weeks went by - I think I started to become really honest with myself and now I'm going to write some honest words.
It's not just that I have been busy and haven't gotten over to the computer. This is my slow time with the business and I have more time right now than really any other time of the year.
I haven't been too busy to write K's birthday post.
It's that forming one of my birthday posts well is important to me.
The joy, celebration, and beauty of another year with one of my precious sons is something I want to document.
But what about the uncertainty? What about all of the things I never saw as being a part of my parenting journey? What if it's hard? What if the teen years have brought a barrage of thoughts about his future - my future - our future? - And sometimes it's too much, like time is going too fast and things I wasn't ready to think about seep in. Do I still write it? Do I go there?
On Monday, January 2nd, our former micro preemie son K turned 14. Every year there is a heart deep acknowledgment that we are seeing a miracle. One more year of life.
barely hoped for
I have many posts in the archives here of how many times we almost lost him. He is held firmly in the grip of his creator.
I am the mother to a 14 year old who has a few descriptors around his name.
Epilepsy. Once or twice a week he has a seizure. Usually a mild, 5 minute episode that does not alarm us. But while we have been told it doesn't hurt him, it clearly is an extremely uncomfortable experience for him. Watching it always tears a bit at my heart. Last Friday night he came into our bedroom late at night and he didn't know who we were, where his parents were, or where he was. He was having a seizure. He eventually fell back asleep and had no memory of it in the morning.
Cerebral palsy. Extreme right side weakness means he walks with a limp, wears cumbersome leg and foot orthotics, can't accomplish many of the tasks we each do day-by-day and take for granted. We are working with him on brushing his teeth, feeding himself, and dressing himself. He receives some intense occupational therapy 6-8 times per month that aids in these goals. And we do this so he can have the accomplishment of as much independence as possible. But I will always need to help with these tasks. Cheering on his effort as he shoves the toothbrush awkwardly into his mouth and moves it around. I have to get in there and check, and re-brush. I snap his pants and help him with bath-rooming. I wash his hair to ensure cleanliness.
This is my privilege, my God given calling, my joy.
And some days I want to crawl back under the covers. Some days I want to do just about anything other than clean up his messes. I didn't make the mess, he is past the age where most parents have to do these kinds of tasks for their children, I didn't think this was going to be what mothering looked like, so why day in and day out am I doing this? Why did God deem this necessary in me and Dave's life?
He will not be able to be alone. His eyesight is declining each year. There are certain things he simply can not feel because of neurological complications. His processing time for daily things makes it needful for our guidance.
Autism. If he does not have his 6 mismatched pair of beads he will become unglued. If said beads are not in the right order he will come unglued. If his Ipad isn't either 100% charged or plugged in he will come unglued. If he can not get into the wifi at any given residence or business, he will come unglued. If he is not ready to get up and go and we say get up and go he will come unglued. If the color isn't right or the time isn't exact or the sun isn't shining or it's too bright or a picture is not straight on the wall or the rain is coming down he will come unglued.
And by unglued I mean head banging, arms grabbing, words flinging, teeth biting, tears running down, melt down.
And I sit and hold him, or I walk away so I can not be harmed, or I wipe tears or I just kneel and I love and my heart squeezes and I smooth his hair and pray that I will be the mama I need to be.
I am his only mama. He knows I love deep. He knows I would have every bead in all the right orders at his fingertips for ever and always if I could. And he know I also have to lovingly guide him in real world stuff too - like situations where beads might get lost, or rain might come down,
and somehow we must hold it together.
There are other words by his name and diagnosis and acronyms - and they don't matter.
Five weeks ago my special son, K, turned 14. I have been given the gift of seeing Jesus in the eyes of this child. I see Him in the times when he giggles so hard over his veggie tales and his inside jokes, I see him in the strong muscles, perfectly functioning heart and lungs, and overall astounding health of this boy we were never promised a future with.
And I see Him in the deep valleys. In the moments where I feel so unqualified for the job. I see Him in the public meltdown when I have to just silently beg for His help to get me through the next moment. I see Him because he is all I have at those times. I grasp the hem of his robe and tell him he's got to take this one, because there's not alot I can do by myself in those situations.
Thank you Jesus for our K. Thank you for the good times and bad. Thank you that as we start year 15 we have you to help us every step of the way. Thank you that you give us grace for the moment. Thank you that we can't see the future - only what we can handle for what is currently in front of is. Help us to be good stewards of what you have given us.