Look in the sky tomorrow, as we send our birthday balloons to CC. There will be 11 this year. Seven more than the last time we celebrated with him. There will be 11 candles on a pudding cake, that should be all over his face; instead his little brother will get to blow the candles out as we sing to an empty chair.
I hope you hear the regret and sorrow in my voice as I say that. It is loud and clear.
Each year that goes by is another one spent without him. We can be joyful that we were blessed with him, and at peace with the fact that he is in a better place, and still wish we had him here. That is the duality of death in the midst of faith. We have been missing him longer than we enjoyed him, and that cannot be changed.
I don’t often allow myself to go there, but today I do. Go where? You ask. Go to the place of imagination and wonder, a place of what if…
What if Cayden had just been a regular, normal kid?
Cayden would be going into middle school this year, 6th grade already! He would probably be almost the youngest kid in his class, because of his late birthday. (Or maybe we’d have let him wait one more year, and he’d be a big 5th grader. But he’s so smart, so we decided he could handle the work. 6th grade it is!)
He would be not quite a week into his first week of school, where he is the little kid in a big school, rather than the big kid at the elementary school. A transition for most, but Cayden handles it with ease. He’s ready for the challenge of changing classes, getting a locker and trying out for a new sports team. He’s still nervously picking just the right outfit each day, trying to impress the little red-haired girl in his math class.
Last week we spent back-to-school shopping, when we fought over the cost of his new sneakers (adult sizes already! Prices are sky high!) Target jeans aren’t really cutting it anymore, for this style-conscious child. He keeps his hair cut short, the curls aren’t cool, and his shining blue eyes are excited to get to hang out with his friends every day again (we didn’t see nearly enough of them this summer).
This summer was spent running him and his sister to swim team, sitting at the pool all day, and then heading to our neighborhood pool after, because they can never have too much chlorine! They each had a week at scout camp, where they learned all kinds of outdoor skills and hiked, built shelters & did other outdoor games like archery and climbing.
This fall, we are juggling his soccer practices with his brother’s, and cheering them on every weekend starting next Saturday. His scout meetings are another night, as are his sister’s, so we have 4 nights a week that we shuttle the kids back and forth. Little brother Devin patiently goes with the flow (not!) this year wanting to do just as much as the big kids.
Mornings start with a flurry, this year being particularly busy, as we have 3 kids in two schools and two different start times & bus routes. Cayden doesn’t really want to get up on time, so we have the morning ritual of groaning and complaining and snooze alarms, until I threaten to roll him and his covers onto the floor. Packing lunches (how much is this kid going to eat?!), eating a quick breakfast & off to the bus stop… don’t forget your lunch! or your backpack!
After school, I try to get the little kids’ homework finished before Cayden gets home, because his workload is dramatically increased now that he is in middle school. A huge backpack of books, and over 2 hours of work a night is hard to fit in with all the activities. Dinner is on the go many nights, with Dad going to soccer with the boys, while Mom goes to scouts and swimming with Skylar. Cayden has to stay up later than normal, to get the homework finished, and then sleeps late in the morning again.
This is the busy, fun life I had imagined for myself when I was younger. Does this sound like yours? It’s somewhat mine now, but not really….
What if Cayden were his broken self, and still alive…
Cayden would be going into 5th grade this year, we decided to keep him back when he was 5 so he could have extra time in kindergarten. He goes to a regular public school, where he is included in the regular classroom, and he only has a part-time aide this year. He has worked so hard at communicating his needs using his ECO, that we feel he is ready for a little more independence. He still needs help with class transitions, feeding and toileting, so the aide comes at pre-set times to help Cayden with these things. He has a special water bottle that attaches to his power chair, so he can drink throughout the day. His arm mobility is really improving, but he still can’t get into his backpack that easily, so sometimes he needs help with that. Because writing with a pencil is still really hard for him, with his funny elbows, he completes much of his work on his ECO in computer mode. He also has an ipad on which he does math and some other subjects; this makes all the kids are jealous, and they fight to get to help him.
This year Cayden has a new teacher who forgot to put him in the front of the class. She has him sitting in the back, thinking it would be easier for her to deal with his power wheelchair and setting up the other desks. But because of his hearing needs he needs to be in the front (it’s in his IEP! come on!). She also doesn’t really want to wear the headset and use the sound field system, even though we have explained several times how simple it is, and how it really does help all the students in the class. We also had to remind her that he needed free movement around the class, to get to the white board, and book shelves, but overall the classroom is still much too crowded for him to navigate. I think this might be a challenging year for us already! (At least he is not in the mobile units… pure torture for a child with a cochlear implant, and double for a child in a wheelchair, who doesn’t like the sun!)
Some things are good, the class has a few kids who know Cayden and enjoy helping him, and it’s closer to the library and cafeteria than it was last year. The new principal last year was a bit of a tough one to win over, but in the end, she saw that our complaints were just good advocacy, so she had to accommodate Cayden’s needs.
Last week we went back-to-school shopping, and we whimpered at the cost of his new extra wide sneakers (How hard it was to find adult sizes that accommodate ankle braces! Prices are sky high!) Jeans are really what he wants to wear this year, my style-conscious child, but his aides really prefer it when he wears athletic type pants (they are easier to get off when he needs help with the bathroom.) They already have to deal with his ankle braces, his ECO, CI, and all his other gear, so I try to keep them happy in this regard. I have a special deal with the principal that he is allowed to wear a hat whenever he wants, especially outside, to keep his eyes protected, since we often misplace the special sunglasses he needs. He keeps his hair longer, the curls hide the cochlear implant coil, and his shining blue eyes are excited to get to hang out with his friends every day again (he didn’t see them much at all this summer).
This summer was spent running Cayden to all his therapies and his sister to swim team. He had to sit in the shade while she practiced, because the summer sun is too bright for him to handle. Even the special swim goggles we have don’t really help in the early morning sun. The kids complain that they never get enough pool time, and that we always have to do what Cayden needs. Some days Devin sat in the shade with him and they played games on Cayden’s ECO, but other days, D swam & Cayden was left to try to watch a movie in the glare on the screen.
The big kids each had a week at camp, Skylar at scout camp, and Cayden at adapted horse camp where they learned all kinds of outdoor skills, hiked, built shelters, made crafts & did other outdoor games like archery and climbing. (Yes, he would have done that stuff too!) Devin had a couple weeks to himself, because he just wanted time alone at home with mom!
This fall, we are juggling Cayden’s adaptive baseball practice with his brother’s soccer practices, and his sister’s scout meetings. Cayden has therapy one night, and therapeutic riding on yet another, so we have 4 nights a week that we shuttle the kids back and forth. We’d like to do evening church activities, but there just isn’t time. This year Devin wants to do just as much as the big kids, and it adds another sports schedule into the already busy mix. The kids complain about doing homework in the car, or at the practices but that’s how it has to be.
Mornings start with a flurry, but I’m relishing this year, since we have 3 kids in one school, the only time it will ever happen! I have set it up so the other kids can ride the adapted bus with Cayden and help get him on and off at school. If we run late, school is pretty close, so we all pile into our adapted van and drive over there, hoping to miss the drop off line, because no moms like to get stuck behind our van, with our long unloading ritual! Cayden doesn’t really want to get up on time, so we have the morning ritual of groaning and complaining and snooze alarms, until I threaten in sign language to roll him and his covers onto the floor. Flicking the lights and shaking the bed sometime just isn’t good enough. Packing lunches this year is bearable, Cayden finally can eat a regular pb&j, I only hope that he doesn’t have a child in his class with peanut allergies, or I don’t know what he’ll eat for lunch! Soup every day… boring! He has a regular breakfast of oatmeal & applesauce & off to the bus stop… don’t forget your ECO! or your charger! or your ipad!
While the kids are gone, I have some time to deal with insurance, research the new walker we are looking for, and trying to set up another IEP meeting. I have let it slide for now, but Cayden really needs to have set time in his walker and stander, and this just hasn’t happened yet. The aides are not wanting to stay with him that long, and the teacher thinks having him standing will distract the class. I really need to get that wheelchair that can sit and stand and he can drive it standing up through the school. That would be excellent, but we can’t get it for at least another year yet. We have had so many wheelchairs, the insurance company is dragging their feet, even though he is growing like a weed and really could use a better option. Plus the van needs service, the power lift is acting funny, so I have to figure out when we can drive all the way downtown to spend a day or two getting that fixed. Never a quiet moment around here! I also am still working with Families for HoPE, and volunteering at the barn when I can, so time flies when the kids are at school. Before I know it, its time to meet the bus and see how the day went, and deal with the tired and crazy kids.
After school, I try to get the little kids’ homework finished and let Cayden’s after school aide help him with his. But as always, she has a problem getting to the right screen on the ECO’s computer so I have to help. Cayden is very agile on his ECO, and has a 32 icon screen now, so surprisingly it goes fairly well. In fact, Cayden often knows how to work it better than I do, and he is beginning to help me program it too. Still, he has a lot of homework, and needs help typing and writing, because even the adapted work takes him a long time. At least she will stay with him tonight so I can bring the other kids to their activities.
I forgot to get dinner in the crockpot, so I am trying to find something to cook quickly before soccer tonight; something that Cayden can chew, Skylar will eat, and Devin won’t complain about. Dinner is on the go many nights, with Dad going to sports and scouts with the boys, while Mom goes to scouts and swimming with Skylar. Cayden still has a hard time falling asleep at night, but sometimes that’s okay because he needs the time to get his homework finished, but then he sleeps late in the morning again!
Wow, I sound busy either way. I’m busy now, but adding an 11 year old child, either typical or special needs would definitely add a bit more crazy fun to the mix. Instead of doing either of these imaginary scenarios, I homeschool the two kids I have, drive them to riding, swimming, scouts and soccer & volunteer for a variety of different things when I have time.
Life is unpredictable, except to the Man in charge.
Job too, felt his life was unpredictable, and yet his faith never wavered.
In Job 23:10-14 Job says,
“But He knows where I am going.
And when He tests me, I will come out as pure as gold.
For I have stayed on God’s paths;
I have followed His ways and not turned aside.
I have not departed from his commands,
but have treasured His words more than daily food.
But once He has made His decision, who can change His mind?
Whatever He wants to do, He does.
So He will do to me whatever He has planned.
He controls my destiny.”
This is my challenge too, my quest. To stay on God’s paths, to not to turn aside, and to treasure his words more than food. He controls my destiny & I’m okay with that. The what-ifs are only imaginary; my life has been blessed beyond compare because Cayden was in it. To wish it differently is to wish away the blessings I’ve been given. To have never met the friends I have made in the world of holoprosencephaly, therapy, and advocacy. To have perhaps been lost to the world of too busy for faith. Would I have written it with a different ending? Maybe so, but I submit my life is His decisions, to ‘do to me whatever He has planned.’