A few of C’s favorite things… 28 Days of Cayden, Day 25

I thought I’d change gears and write some fun stuff about Cayden. I’ve said how he was such a fun and super kid, but he really was! He was a sweet sweet boy who definitely had personality. His personality really blossomed when he began to hear, and just kept getting bigger!

Mommy & C

Mommy & C, last Mother’s Day as an only child.

He loved his Momma. I know, I put myself first. But really, Cayden was a momma’s boy! He was always with me, more than a typical child would be, and really I loved hanging out with him. I liked watching his wheels turn as he tried to learn new things. Watching him persevere until he could do something new. I really tried to treasure every moment I had with him, as we knew from the beginning he was probably not going to be our child forever. Ironically, now he is a forever child, forever 4.

upside down

Silly play with Daddy was always good for giggles!

Cayden loved his Daddy too, but in different ways. I said before, Daddy was for sleeping and napping. He was for watching NASCAR, and for playing airplane. Daddy was definitely NOT for eating. He started this behavior after Skylar was born and needed her newborn attention. Cayden realized that if he didn’t eat for Daddy, Mommy HAD to come and spend some time with him to feed him.  I would feed him a few bites… no problem. Joey would pick up the spoon to feed him a few bites… no eating! He literally would snap his mouth shut and turn away. It was somewhat funny to me because he was communicating loud and clearly. Joey, however, thought it was more frustrating than funny.  Don’t tell me that kid wasn’t smart! This stubbornness lasted for at least a year or more. Really. No food with Dad!

Elmo coloring

Working hard on his Elmo picture while standing.

Cayden loved to color. After we got his stander, the favorite activity by far was coloring. He loved it. He would color for an hour if you let him. We would choose a picture to color together. I would pick a handful of markers and allow him to choose which he wanted. We’d put the marker in his hand, and as I mentioned before, he would push the marker back and forth to color the area. He would color the ENTIRE section in, and if he missed a spot, he worked really hard to fill that little hole in. If he slid & went out of the lines, he would fuss, and if I couldn’t calm him down, he would stop, throw the marker down & turn his head away, clearly saying without words “This one is ruined. I need a new one!” My little perfectionist! His favorite thing to color was from his Elmo coloring book & he would always color things exactly the color they were in real life. Elmo is red, Big Bird is yellow. Pumpkins are orange. Apples are red. He was quite specific. Then one day, he colored a zebra blue and orange– a break through! He was finally getting a little creative! Yay!

C on vibrating seat

C watching TV on his vibrating chair pad. Like many deaf children, he loved vibrations of all kinds.

Cayden loved his movies! He watched a lot of movies with all of our driving around. How else was I to keep a hearing impaired child with very little arm mobility busy on 3+ hour drives? I’m not sure how much he understood, not being able to hear the movies, but many are pretty easy to understand even without sound. And he would often giggle at just the right places, so I think they made sense to him. First it was anything Elmo, all Elmo, all the time. Then Baby Einstein videos; we would do his listening therapy while he watched these videos with no sound. Very good for visual therapy! He loved Monsters Inc., Toy Story, and Cars, particularly Cars. Lightning McQueen was his favorite. He died before most of these movies had sequels, but I’m certain Planes would have been his recent favorite!

Cayden loved vibrations. Anything that vibrated was a hit with Cayden. From toys, to cushions, to chair pads, to extra loud speakers at church, he grinned when he could feel the floor or the earth move. Like many deaf children, this is a great way for them to interact with their world, and to get some sensation of hearing (without needing aids). We tried to use this to his advantage as much as we could, and I always looked for toys and things that would help him in this area. Baby toys are good for this, so are ‘old lady’ chair cushions & back  or foot massagers.

Monkey C

C swinging in his Halloween costume at a friend’s party.

Cayden loved to move. Especially to feel the wind in his hair (or on his bald head!). Anything we could do that would give him that sensation of wild movement, with strong vestibular input, he LOVED. He would giggle and ask for more. Swinging was fun. Twisting the swing up as far as it would go was better. Twisting the swing, then pushing it sideways, so it would go crazy while spinning was the BEST! I guess driving the power chair was about the best feeling he’d ever had. One day we were practicing, and I was trying to get him to drive up the street. Instead, he kept going into the neighbor’s yards. Bouncing over the bumpy yards was so much more fun (& more input) than driving on the smooth street. He knew he shouldn’t be driving in their yards, but he couldn’t help himself! Offroading in the power chair! I could see the mischief in his eyes as he giggled the whole way, driving so fast, I had to run to keep up. Wee HA!

C on Sammy

Working on arm, neck and torso strength while doing equine-assisted occupational therapy. It also was great for his hips and legs.

 

Cayden loved his horses. We started Cayden on hippotherapy (equine assisted therapy) which was for him considered his OT. He started this around 3 years old and rode until he passed away. He loved to ride, and weekly we would take the long drive to the barn.  The best part for me, was watching him get so excited the moment we turned onto the gravel road that led to the barn. He would arch and pull at his carseat, trying to jump out of the chair. He knew that he was going to get to ride, to pet and groom the horses, and maybe pet the bunny. Sometimes he got to bounce on the trampoline too! So much fun!.

When he began riding at Shining Hope Farms, he could not hold up his head. If I held him on my hip, he would flop backwards, unable to hold up his torso. After 9 months of weekly hippotherapy, he could. I could hold him on my hip without struggling. He could keep his head up to meet your eyes. He wasn’t always staring at his wheelchair tray. He progressed! Then we moved and quit riding for a while, until we found a new barn. At Wings of Eagles Ranch Cayden got to take therapeutic riding lessons with a class. He played fun horse games like leapfrog, and trotting around poles. Putting beanie babies in matching houses and other fun activities. He loved the interaction with the other kids and especially loved the games. It was as much work as at Shining Hope, but more fun!

 

newborn S

This has to be the sweetest picture of sibling love ever.

Cayden loved his sister. From the moment he saw her at the hospital, Cayden was smitten with his baby sister. He loved her and loved to watch her. As she got bigger, she would play with him, bring him toys, toddle around on his chairs or standers. She would push him in the wheelchair when she started walking. She adored him and I loved watching their relationship develop. Skylar went to all his therapy sessions and sat quietly and played. Sometimes she would blurt out the answers that Cayden had to work so hard to find the words for. The frustrated looks he would give her were priceless! But she would sit with him, ‘read’ to him, sign with him… it really was a sweet friendship.

S reading to C

Skylar ‘reading’ to Cayden. She had memorized the books and would tell him the stories. Such a sweet memory!

She was with me when we went to wake him up that fateful morning, and just didn’t understand why he wouldn’t wake up and giggle at her like he usually did. Skylar had preschool that morning, so we sent her to school, so we could handle the situation and the grief. We ended up making the hard decision to not have her see his body again, but when we went to get her from grandma’s after school, she immediately said “Where’s CC?” and the explanation had to begin. She didn’t understand life without him, and oh, how hard it was to explain death to a 2 1/2 year old.

I hated the fact that my child died so young, but we had been preparing for that day from before he was born. We had already grieved and cried and gone through so many of the ‘what if’s’ that when the dreadful day came, we weren’t completely unprepared. We never really thought we’d have as long as 4 1/2 years with him. We really thought we’d get only a few hours to know him. But Skylar didn’t know that. We hadn’t shared that possibility with her. But now we had to! It was hard! It is hard!

I hated that the death of my child, exposed so many of our friends’ children to their first experience with death. Our playgroup, our church friends, our other friends, so many had young children, and we had to explain it, or their parents had to explain why Cayden wasn’t here anymore.  I always explained that Cayden had gone to be in Heaven with Jesus, and could walk and talk and run now, that he was perfectly healed. Perhaps it’s good for children to hear the gospel at that young of an age, the truth of Heaven, but I hated that I was the bearer of that harsh reality because of my child’s death.

How do I know that he is with Jesus? you might ask.

The Bible tells us in 2 Corinthians 5:1, 6-8

For we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. Therefore, we are always confident and know that as long as we are at home in the body, we are away from the Lord. We live by faith, not by sight. We are confident, I say, and would prefer to be away from the body and at home with the Lord. 

We have a home in Heaven, an eternal house, built by Christ. We can be confident that to be away from the body (that is, dead), we are at home with the Lord.

In Revelation 21:3-5, it says it again:

“Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. ‘He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”

He who was seated on the throne said, “I am making everything new!” Then he said, “Write this down, for these words are trustworthy and true.”

How can we be sad at Cayden’s death, when it means for him, to be at home eternally with the Lord? To be made brand new! With a new body not made by human hands. Knowing this, being confident in this, I cannot have a heavy heart. Cayden is made new. He is at his eternal home. Someday, I will join him and we will rejoice together, celebrating birthdays for eternity with Jesus.

Shira

More about Heaven tomorrow…

 

IMG_1502

 

 

 

 

Advertisements

The long road to walking… 28 Days of Cayden, Day 23

Roll, crawl, toddle, walk. Such a normal progression. So normal, so natural most moms don’t question it, or even really think about it. They may compare their kids to their peers, and wonder, “When will my child crawl, climb, walk?” but they don’t usually think, “If only my child could _______.”

This week I’ve shared with you the myriad of devices needed to keep him supported, safe, and seated, but we haven’t talked about walking at all! You may be thinking, another post about research and trials and blah blah blah. This was my life, people. This was what I DID! It was my job, as Cayden’s mom, to figure out how to help him do these things, because just bringing him to the playground didn’t work. I am sick of writing about it after 7 days, think of how tired I was of it after 4 years!

Bear with me one more day & I promise I will change focus for the last 5 days…

I will just go through the progression towards walking and explain how we tried to get C to work through it, some phases had success, others not. All of them were hard for Cayden, and all required some sort of device.

C rolling on ball

Practicing rolling on the ball was a little more fun than the wedge, but still not well liked by Cayden.

Rolling: Ball

Cayden HATED rolling. Yes, all caps, all italic. This is greatly emphasized, I probably cannot emphasize it enough, just how much he HATED rolling. And the therapists (God bless the Amy’s, they really were great!) worked non-stop in trying to get him to be able to roll. Down a ramp. On the mat. On a ball. It was miserable. Try doing therapy with a kid who couldn’t hear, probably couldn’t see much. How do you explain to him what you want and let him know he won’t fall? We used fans and vibrating toys to try to encourage him to do what we wanted, but it was so hard!

Dad & C

Rolling for Grampy with tickles at the end, made the ball work a bit more bearable.

Every time we tried to roll, he would cry. He hated the sensation of falling & had a strong startle reflex. If he was laying on the bed and a breeze went past, he would flail as if he were falling. So rolling down a long incline ramp seemed like falling down a mountainside. That is all I can figure. I worked on it at home on the ball, daily.  We worked at this weekly at therapy for years & finally at some point, I said to the physical therapist, “Please, let’s just stop. Let’s move onto something else. This is torture for him.”

C creepster Crawler

Determined & Focused!

Crawling: Creepster

Did you know there is a special device made just to help kids learn to crawl? Several varieties actually. We found one at the equipment lending library called the Creepster Crawler. This was a cool thing, that suspended Cayden above the floor while allowing him to use his arms & legs to move, in the manner of crawling. It helped to build arm strength, head control & the basic back and forth rhythm of crawling.IMG_2467

His elbow malformations made this a bit difficult & it was HARD for him to do, but he worked hard in it and seemed to enjoy the feeling of ‘flying.’ This piece of equipment was given to us by an aquantaince, but it was a little too big for Cayden. We made it work, but it certainly was WORK!

 

pony

The pony loaner was a good option, but a little big, so hard for him to move.

Toddling: Pony

The gait trainer is the special needs kid version of toddling. It is a semi-supported walking device that allows them to partial bear weight & stand without having to support their full body weight. Again, blessed by the equipment lending library, were able to demo a pony gait trainer. This worked quite well for Cayden, and he enjoyed spending time in it. It was another way for him to be vertical, and to stand at his height rather than sit. He never complained about spending time in it, but he never really got moving in it either. It became sort of a resting spot for him, rather than a piece of exercise equipment. Because of that, we decided to go a different route on his personal walker.

c napping in pony

Cayden enjoyed being in the pony. It was so comfy, sometimes he would have a catnap in it!

 

 

Walking: Pacer

So many choices of kid’s walkers, but none really seemed to be great. Anything that is fully supportive was so big and bulky and our house was getting full! The kid walk was interesting, it supported him in a similar fashion to the stander, but it was hard to get him into it, being as floppy as he was. He had a hard time moving it anywhere also, and then its legs often got in the way.

We ended up with the rifton walker/gait trainer. It was adjustable for height as well as for capability. A supportive seat helped him  bear weight in his floppy legs, he could rise & push, then sit and rest. It also had a tray for his ECO-13, arm rests, & it was sturdy.

IMG_0002 1

The ‘Go Blue!’ Rifton Pacer fully loaded & with the supportive seat.

This was Cayden’s ‘Go Blue!’ He was so excited about getting this, after we did a trial at therapy, he was ready to go & walk! As you know by now, the approval and processing time was about 6 months, so he was talking about it for a long time before we got it. The day of delivery finally arrived. The vendor came to the house to deliver it, and fit it to Cayden. It was an afternoon delivery, I think we were his last client of the day. One big problem, he forgot the supportive seat at the warehouse, which was about an hour away. So he told me “Sorry, I will have to bring it back by at a later date.” HMPH. I was supposed to tell Cayden that he had to just look at this long-awaited walker and not be able to use it for another week? Sorry, but no. I became a Momma Bear and told him, ‘No, it was a mistake, but your mistake. I am not going to allow you to punish my son, you will fix it and make it better. You will bring it back tonight. Sorry, but you are working late.’ Pretty sure he didn’t like me much after that! But he did go get it and fit it that night.

cmas 2007

‘Standing’ with his little sister on Christmas day.

For the uninitiated, dealing with equipment vendors is a very large pain in the rear. They are overbooked, probably underpaid, they always seem to put off delivering much-needed equipment, & usually forget things or tools to properly adjust the gear. They insist that they are the only ones capable of properly adjusting the devices, so you always have to wait for an appointment to get things fixed. Joey & I quickly learned how to adjust the pieces ourselves, so we didn’t have to wait on them, but they usually didn’t like us very much for it. However, we had a young child, who was obviously going to need DME for his lifetime, and they didn’t want to lose us as clients, because we could make them a lot of money over the years. I also learned, from the fiasco with the bath chair, that they get better commissions on certain devices and brands, & will push those items whether they are a good choice for your child or not. Advocacy and learning to speak up loudly for your child, is the only way to make this process a success.

The Go Blue walker was a great piece for Cayden. He enjoyed being in it, but it was really hard work. We would bribe him with pudding, oreos, tickles, toys. Each step he’d get a small bite of chocolate pudding, or oreos. We would promise the best movie if he’d make it around the kitchen. Hard hard work. He needed help in lifting and moving his legs forward, but if positioned properly, he would push with the best of efforts. Tiny steps, tiny progress.

Healing

One day Peter and John were going up to the temple at the time of prayer—at three in the afternoon. Now a man who was lame from birth was being carried to the temple gate called Beautiful, where he was put every day to beg from those going into the temple courts. When he saw Peter and John about to enter, he asked them for money. Peter looked straight at him, as did John. Then Peter said, “Look at us!” So the man gave them his attention, expecting to get something from them.

Then Peter said, “Silver or gold I do not have, but what I do have I give you. In the name of Jesus Christ of Nazareth, walk.” Taking him by the right hand, he helped him up, and instantly the man’s feet and ankles became strong. He jumped to his feet and began to walk. Then he went with them into the temple courts, walking and jumping, and praising God. When all the people saw him walking and praising God, they recognized him as the same man who used to sit begging at the temple gate called Beautiful, and they were filled with wonder and amazement at what had happened to him. (Acts 3:1-10)

Now is the time when I say just how great his progress was & “Praise God! Cayden jumped to his feet and began to walk!” Right? That is the history of Cayden’s vision and hearing and talking miracles. It was not the case with walking. He never had the opportunity to walk here on this earthly ground unsupported, unattached.

The truth of the matter is that I don’t think that he would have been able to walk unsupported, ever. His tone was just too floppy, his legs too weak. I think he was progressing toward getting somewhat mobile, but truthfully I think as he made strides in the power chair, he would have just wanted to spend the time working on the speed of the chair, rather than the more turtle-like pace of the walker. And who could blame him?

But here is the great miracle. The last night Cayden spent on earth, his grandparents were babysitting. The bedtime story they read to the kids was from Cayden’s Read with Me Bible & THIS was the story.

A Man Who Could Not Walk (Mark 2; Luke 5)

One day Jesus was teaching. Some men came carrying a man who could not walk. But they could not get him close to Jesus because of the crowd. They made a hole in the roof above Jesus. Then they lowered the man through it on a mat. They lowered him into the middle of the crowd, right in front of Jesus.

When Jesus saw they had faith, he said to the man who could not walk, “Get up. Take your mat and go home.” Right away, the man stood up. He took his mat and went home praising God. All the people were amazed. They praised God and said, “We have never seen anything like this!” 

My parents said that Cayden was so thrilled by this story. He was giggling and cooing and jabbering after it. In my heart, I firmly believe that Cayden understood this story, and understood that healing was possible through faith. I think his prayer that night was to be healed, to be made whole, so when Jesus called his name that night, Cayden KNEW in his heart that if he went, he would be able to stand up, go to his heavenly home and praise God.

Our son is healed. He is whole. He is dancing in fields of grace. As 2 year old Skylar said, He sits in the lap of Jesus, singing ‘Jesus Loves Me.’ Cayden is now made perfect in Christ, hearing, seeing, singing, dancing, running. His chains are gone. He’s been set free.

Shira

IMG_5289

The healed paraplegic from the Children’s Bible, praising God!

 

 

Don’t wish away the Crazy in your boys

Although I am not on the “30 days of thankful” bandwagon, today I feel a strong need to participate. Our sermon last night was about the simple act of being thankful always, in all circumstances. Not that we are thankful for the specific bad or hurtful circumstance itself, but that in the trials, we remember all that Christ has done for us, and are thankful for that ALWAYS!

1 Thessalonians 5:16-18  says: (MSG)

Be cheerful no matter what, pray all the time; thank God no matter what happens. This is the way God wants you who belong to Christ Jesus to live. 

God’s desire for us is to live a life of joy, of prayer, and of thanksgiving. He is telling us that by being in constant contact with Him, we can not live without constant joy! If we are always in conversation with our Savior (in prayer), how could we not be always joyful, always thankful, always praising Him. He is so awesome, how could we not want to live like that? How could we ever want that conversation to end?

But it does end, doesn’t it? We get busy, we get tired, we get distracted, we get human. We forget to communicate with each other, let alone with God. It’s the enemy putting that space there between us and our Savior.  He doesn’t even need to put a physical barrier there, just a space; we all know what time and distance does to a relationship, don’t we?

I try to live a life of thankfulness and praying without ceasing. I stop and pray when I get an email, when I see sirens and lights, when I have a moment to breathe.  I know I fail in this frequently, and perhaps am not as vocally thankful as I should be, as often as I need to be. And then there are those times when my heart so overflows with thanks for the mercies He shows me that I can’t verbalize it, because my throat is overcome with emotion, the tears pool in my eyes and I melt into a puddle of amazement. The Gift He gave all is so wondrous when you truly see it, that you cannot help but be overwhelmed. (That Gift of Everlasting Life is given freely to all who call him Savior! John 3:16)

So in the spirit of overwhelming thankfulness, that choking in the throat, tears in the eyes thankfulness, I write this post tonight.

D in river @ LattaToday I am thankful for the healthy, happy, emotional, wild 4 year old boy that I have in my life RIGHT NOW. Devin is a madman, a fly-around-the-house and break-into-dance anytime, anywhere kind of kid. He is a jump-in-the-river-to-play-in-the-water-fully-clothed kind of kid. He is also a bibliophile, sitting in his bed, paging thru books he can’t even read yet, piling them around him and all over his floor. Devin melts down in a moment if I tell him no more TV, or Nook or computer games… he loves his screens! He is also a lover of his mama, smothering me with kisses, rubbing checks, loving as I kiss on his ears and neck. Such a sweet, smart little man, our Devin. 

I often get so frustrated by his antics, his run-thru-the-store-only-stepping-on-the-blue-squares and running into people while he does it little-boy-ness. He pushes my parental buttons for sure. But I have to remind myself, “Don’t wish away the crazy in your boy, it is his nature.”

Crazy is a blessing not all children are given.DSCF0673

Devin daily reminds me of what Cayden only wished he could be, what Cayden wished he could have done, and what Cayden tried so hard to accomplish.  Cayden wanted SO much to be crazy and couldn’t. Instead, he had to work SO hard just to hold his head up and look you in the eye, but then he would shoot you an awesome smile and (if you were lucky) a coo, a giggle and a wing flap. Those were awesome greetings! How I miss them!

DSCF1123Right now, as Devin is about the age Cayden was when he went to Heaven, I remember the frustration I saw in Cayden as he would push himself out of his wheelchair wanting to walk, instead sliding down into a puddle on the floor on legs that didn’t work. I remember how he  loved the feeling of the wind in his hair as he drove his power chair as fast as it would go down the street, bumping over the neighbors’ yards and giggling the whole way. It the closest he ever got to running. I remember how he laughed when we ran him naked through the house after a bath, his feet on ours, chasing his naked sister, and being chased by the dogs. I remember and treasure those moments when we were able to help Cayden find his crazy, because he couldn’t do crazy on his own.

DSCF0300

So I remind you to be thankful if your boy can run and walk, laugh and talk, eat and dance and sing. If he can do that, he can push your buttons, and make you insane, yes. But it also means that he is not tied to a wheelchair, a feeding tube or a computer to help him talk. He is not spending endless hours in therapy, or too many weeks in hospitals. He is able to spit out the food he dislikes, and tell you he won’t eat it, stomping his feet as he runs away from the supper table. Some kids (like my kid) just aren’t given that simple gift. Skinned knees and stitches, the occasional broken bone, means your child is a perfect little boy, snips and snails and puppy dog tails and all.

It is a blessing not all children are given, and one that we special needs mommies envy. I was blessed enough to be given a second chance to parent a crazy boy, and  I truly am thankful for that gift.

Enjoy your boys the way God made them, the crazy wild little men that they are!