Sunday, February 12, 2017
Saturday, February 11, 2017
My life is an adventure. ;)
6:00 hour - (Hello Friday, hello delicious cinnamon apple walnut oatmeal, hello sleepy little boy in the background)
7:00 hour - (Gettin' ready for another day in first grade)
8:00 hour - (Egg loot for the day)
9:00 hour - (Best .79 ever spent. Smells SO good. Meijer clearance makes me grin)
11:00 hour - (Bummed he has "the crud" and has to stay home from school, but secretly loving extra special one-on-one time with my Jay)
12:00 hour - (Fulfilling his request for cheese quesadilla)
2:00 hour - (First thing he does when he bursts through the school doors. Worlds fastest pick pocket, I think)
5:00 hour - (Driving him to winter camp. Deep conversation. Oh - and this was at a stop sign with no traffic around...) ;)
6:00 hour - (Dropping them off for overnights are always just weird for me. )
7:00 hour -(Some heroes wear capes, some wield portable air tanks...)
Tuesday, February 7, 2017
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.
Wednesday, January 4, 2017
Sometimes I get this feeling that parenting you is a sacred divine blessing in my life.
- Not that you are perfect by any stretch of the imagination, or even "easy" per se. Just very unique and God's fingerprints are so clearly seen on you.
We have had the privilege of your presence being woven into our family for an entire decade now. It has been a sweet journey.
I love your heart.
I am challenged by your heart,
motivated by your passion for God and your eternal perspective.
I am often silenced by your statements of truth and *Big* questions.
Two months before turning 10 you began a plan to read through the Bible in a year. I encouraged you but in a hesitant way.
Because - you were nine.
And the Bible is a BIG book.
And attention spans can get short.
And discouragement can set in...
Oh me of little faith.
Not only have you stuck with the plan ever so faithfully, but you are not just skimming this big book. You are drinking deeply of the well of Living Water. And your mama stands humbly by.
It is fun to talk about what we are reading together! As always, you are my old soul. You are my little boy whose eyes see deeper and whose heart reaches past the surface.
You are a great opportunity for me. You help me to think on a different plane.
You take my parenting style for a trip and of course - I learn as much as I teach.
We are working with you on flexibility
On letting go of perfection
On less judging and more grace -
Things God is tweaking our hearts on as well.
Our talks on the way to school are some of the most valuable parts of my day. I love the topics you choose, ranging from music, to school, to what you want to be when you grow up, and what God is doing in your life. Let's always talk about any thing and everything together, ok? I love the openness we share right now - and I want you to know that your thoughts are very important to me!
Thank you for being you!
Thank you for helping me out whenever you see a need.
Thank you for valuing peace.
Thank you for making us breakfast. :)
Thank you for your heart and compassion!
You are a gift to us, Noe!!
I seriously can not wait to see what God has in store for you. Watching your life unfold will be our privilege! Your selflessness and motivation to pursue what really matters is so veyr admirable and will take you far.