It’s been 10 years….

Cuddling in BedIt’s been 10 long years of mornings since I discovered Cayden, our firstborn son, dead in his bed at 4 ½ years old. 10 years of tears. 10 years of missing him daily. 10 birthdays, 10 Christmases, 10 Easters, 10 Halloweens, 10 years of life he was not able to live. 10 years I was not able to be his mom. And I loved being Cayden’s mom.

IMG_1238He would be 14 ½ now. That is hard to fathom. I wonder so often what he would be like, what our lives would be like. And interesting enough, it is never very different than what it was then. That is how it works with holoprosencephaly. The kids don’t really have a chance to grow up. Their broken brains and broken bodies betray them, not allowing them a chance to do the things most other kids get to do.

Cayden was a bit different though, on the mild side of the HPE spectrum, and he was making excellent progress. He was getting better at using his speech-to-talk device. He was beginning to add weight from better chewing and swallowing, so he could eat more real, calorie-full food. He was starting to figure out how to race around in his power chair. Cayden was getting stronger in mind and body, and we were excited and encouraged at his almost daily improvements.

I perhaps have been quieter on the blog lately, and in general about Cayden, as people might suppose, as his memory fades. But that is not the case. Actually, I probably talk about him more than ever, as his siblings inquire more and are able to hear more and more of his story. I have an outlet for my broken heart and it is into my other kids. Which is just who needs to hear about him most, I think.

Cayden Power Chair 8:6:07

We all still miss him daily and often discuss what and how our lives would be impacted by his 14 year-old boy self still being here. Would we be able to have the other kids in activities like they are now? Or would our days circle around Cayden’s therapies and programming? Would we still be homeschooling? Would we still be able to be active in the things they like? Maybe, maybe not. But we would have other things we like and enjoy that C could do: a bike ride/power chair ride on the greenway instead of a mountain bike trail, running a 5K with Cayden in a running chair, riding the elevator instead of taking the stairs as we go on our homeschool field trips.

Happy Cayden

Things would certainly be different, but I think that at the core, our family dynamic would still be the same, if Cayden was still alive with us, rather than only here in memory. We often comment that he is with us, in his ever-present butterflies, that follow us around. We make efforts to remember him, and think of what he would like about an outing, or event, or just the chatter at the dinner table, to share him and his glow, and his special wing flap, with his siblings.

 

I want to get real a minute, for the grieving moms out there, for the HPE moms out there who are so, so scared of the aftermath of death. We miss him, certainly, but the horrible, gut wrenching, never-ending pain can and does fade over time, as it has for us, when faith takes over.

 

But the guilt, and the what-ifs are always there, if you allow them to be, and if you allow the devil to find a crack in your faith. It is a struggle. It is a HARD struggle. He finds your guilt, your what-ifs and makes it seem as if you could have changed the past, just by one simple act. Just doing XYZ, would make things oh-so-different. Just getting a trach. Just having a night nurse. Just dealing with the beeping of the apnea monitors constantly going off.

 

I have to force myself to remember that those what-ifs, those choices made, were made in great prayer and great consideration at the time. They were the right choice at the time, and no devil on my shoulder whispering in my ear for years, makes them the wrong choice. Perhaps things would have had a different outcome, but we don’t know that the different outcome would not lead to the same finality of death. It’s in God’s time to call us home, after all.

 

The thing I think about the most, as time has passed and the most soft spot, the most guilty spot, I have is, “Why did I not even THINK to perform CPR on him?”

 

I have beaten and battered myself up on this. The devil has laughed and laughed and laughed as I struggle with this. He keeps me down as I think about this, replay that day in my head. He brings it up when I miss him the most, when I’m at peace about Cayden’s passing, or when I’m just sitting around.

 

But my answer, then and now, was this. “WHY?”

What was there to gain?

In my heart, in that instant of discovery, I knew Cayden was gone.

In my heart, in that instant of discovery, I knew Cayden was better off.

In my heart, in that instant of discovery, I knew it was not what I needed to do.

 

But the years slowly go by, and I still question myself on this.

 

My response, then and now, is “WHY NOT?”

The why not lies in Faith.

The why not lies in truth, knowing Cayden is in Heaven.

The why not lies in knowing that Cayden was perfectly healed.

The why not lies in knowing that this was to be his destiny from before he was born. it was just a matter of when.

The why not lies in finally knowing the answer to when.

 

Cayden had a very broken body. His brain was malformed, in my womb, at the earliest stages of pregnancy, due to a genetic translocation. It was not my fault, nor Joey’s, but a design of his Creator. Not only was his brain malformed, but so were his eyes, his ears, his arms, his toes, his digestive system, and what proved fatal, his airway. In other posts, I share all his specific issues, but we knew Cayden was the owner of a perfectly normal soul in a broken, mixed-up body. We knew Cayden was most likely destined to die young, the doctors said he wouldn’t even make it hours past birth if he made it that far, and we were blessed to parent him for 4 1/2 years.

DSCF1307Cayden was the sweetest, most gentle, most happy kid, for having such a non-responsive body. He loved his mama (for food), loved his daddy (for sleep), loved his sister (for giggles), loved his pets (for soft fur), loved his church (for music). He tried so hard to improve and grow and make progress. He wanted to walk, he wanted to eat, he wanted to talk. And he was working his way towards that. Big, big strides were made in January 2007. We were happy. We were so excited for the future, for better days for Cayden.

 

So when, in that instant of discovery, I found him lifeless, I knew it was the wrong thing to do, to revive him.

 

To revive anyone after being without oxygen for a period of time, can cause life-long struggles with brain damage. To revive Cayden, who already had a malfunctioning, partial brain… what would that mean for him?

Regression of all the things he was learning, more frustration, more anger?

Regression of his spirit, trapped even more, in an even more broken body?

Any damage to his fragile brain could have taken away even the most basic skills he was learning, and perhaps truly make him the vegetable the doctors said he would be.

 

I couldn’t do that to Cayden.

In my mama’s heart, in that instant of discovery, I knew.

I knew Cayden my lame child, was dancing with Jesus.

I knew Cayden my mute child, was praising the Lord.

I knew Cayden my wheelchair bound child, had run right up that path to Heaven.

I knew Cayden my broken child, had been fully healed.

I knew God had answered Cayden’s prayer, and our prayers, and the prayers of many faithful prayer warriors.

 

God called his name, and Cayden ran.

 

Shira

 

One more thing…. God has an angel that whispers on my shoulder too. At times of grief, it tells me where to find hope. One such verse I have been given is Psalm 21, for 2/1, the date of Cayden being called home. I’m not sure if I have shared it or not before, but it brings me great comfort from Cayden in times of pain. Sunday, I found it again, and again, it brings me peace. I simply replace the references and pronouns to “the King,” to Cayden.

Psalm 21: 1-6

O Lord, in Your strength Cayden will be glad,

And in Your salvation how greatly Cayden will rejoice!

You have given Cayden his heart’s desire,

And You have not withheld the request of Cayden’s lips. 

For You meet Cayden with the blessings of good things;

You set a crown of fine gold on Cayden’s head. 

Cayden asked life of You,

You gave it to him, 

Length of days forever and ever. 

Cayden’s glory is great through Your salvation,

Splendor and majesty You place upon Cayden. 

For You make Cayden most blessed forever;

You make Cayden joyful with gladness in Your presence. 

 

 

And Sunday at worship, we sang Glorious Day by Passion . In moments like this, I hear Cayden reminding me that he is ok, and he is in the presence of God.

I was buried beneath my shame
Who could carry that kind of weight
It was my tomb
Till I met You
I was breathing, but not alive
All my failures I tried to hide
It was my tomb
Till I met You
You called my name
And I ran out of that grave
Out of the darkness
Into Your glorious day
You called my name
And I ran out of that grave
Out of the darkness
Into Your glorious day
Now Your mercy has saved my soul
Now Your freedom is all I know
The old made new
Jesus, when I met You
You called my name
And I ran out of that grave
Out of the darkness
Into Your glorious day
You called my name
And I ran out of that grave
Out of the darkness
Into Your glorious day
I needed rescue
My sin was heavy
But chains break at the weight of Your glory
I needed shelter
I was an orphan
But You call me a citizen of heaven
When I was broken
You were my healing
Your love is the air that I’m breathing
I have a future
My eyes are open
You called my name
And I ran out of that grave
Out of the darkness
Into Your glorious day
You called my name
And I ran out of that grave
Out of the darkness
Into Your glorious day
Songwriters: Sean Curran / Jason Ingram / Jonathan Smith / Kristian Stanfill
Glorious Day (Radio Version) lyrics © Sony/ATV Music Publishing LLC, Capitol Christian Music Group
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I’m Afraid of Repeating History

Reading Galatians with my kids this morning I was struck at how little our world has changed, or learned, or progressed since the time of Jesus and Paul. All our various subjects seemed to align today with a message that I just feel pushed to share.

Paul writes that we must not allow ourselves to become “enslaved to so-called gods that have nothing of the divine about them….For that is exactly what you do when you are intimidated into scrupulously observing all the traditions, taboos and superstitions associated with special days and seasons and years.”  (Gal. 4:8,10 The Message)

A wide range of religions practiced in the past and today have these “scrupulous observance of traditions” do they not? Many government systems, many cultures, now and in the past have tied their people’s hands with tradition, so much so that they cannot see beyond them to the Christ-based truth.

Paul warns the Galatians that “These heretical teachers go to great lengths to flatter you, but their motives are rotten. They want to shut you out of the free world of God’s grace so that you will always depend on them for approval and direction, making them feel important.”

We discussed Communist Russia this week. Through our literature reading and culture studies, we again can see the fear mongering that becomes rampant in a society where suspicion is everywhere and one fears to speak against the political flow for fear they too will be arrested, persecuted or killed. We see a leader’s need for a dependent population, making the public feel that what is being done to them is in their own best interests, when clearly it is not.

Today, we often fear standing firm in our beliefs,  standing up for our right to disagree. We allow ourselves to be intimidated, stifled, silenced, shut down for fear of retaliation or retribution of some sort. I rarely post my political thoughts on social media, for fear of being attacked, laughed at, or beginning a heated debate between my liberal and conservative friends.

How is this living in the freedom Christ promises again and again? How is it living in faith that He protects His people?

I am not an overly political person, nor do I typically follow a  lot of current events. But this week has me scared. Scared for the future for my kids. Scared for the future for our country and our freedom. We cannot blind ourselves and think it is just a war across the ocean anymore; it is changing our lives, bit by bit, as fear creeps into our daily activities and actions, and into the actions of our political leaders.

We are afraid. Afraid to let our guards down and share our true thoughts. Afraid of being compassionate and helping a stranger on the street, or a refugee into the country.  Afraid of letting our kids walk to the bus stop without us. Afraid of leaving the house without a phone in case of emergency. Fear rules our daily choices, it governs our lives. They are winning. Like it or not, we are their slaves.

Paul tells the Galatians (Gal 5:1, 2, 4), Christ has set us free to live a free life. So take your stand! Never again let anyone put a harness of slavery (or fear) on you. The moment any one of you submits to… any rule-keeping systems, at that same moment Christ’s hard-won gift of freedom is squandered. I suspect you would never intend this, but this is what happens. When you attempt to live by your own religious plans and projects, you are cut off from Christ, you fall out of grace.”

Time has not changed this eternal, internal battle. Paul reminds us this by repeating the story of Abraham. One small act by a man tired of waiting for his personal promise from God to come true, still has consequences for my children today, as it has for all the generations from then until now.

The question is, while living in this modern age, an age of repeating history, and age of terrorism and fear, are we able to wait patiently in faith for the promises God has given to each of us? To not get impatient and force his hand by making rash choices and quick decisions? To stand firm in the faith that God has promised good to us, and that He will bring that promise to fruition?

Can our leaders, and all the leaders of the world, take time to think, to study, to learn, (to pray?) on what will be the right move? Can they allow themselves to not be harassed by the media into giving a quick sound bite answer, that they then feel bound to, for fear of looking dishonest? Can they make a choice today, and then confidently decide to change it tomorrow without being raked across the media’s coals? This is serious stuff!

We need to support the leaders, and pray for them, not do our best to tear them down. God sets rulers on the throne (or in the Oval Office). Our job is to support, uphold and pray fervently that they make wise decisions for us– both for right now and for future generations.

Fear gets us nowhere. Hate makes us bitter. The evil ones may have success for a time, but remember folks, we know the ending. It’s right there for all to read in Revelation (& Psalms & Isaiah & really, all over the Bible). 

In case you haven’t read it yet…God wins in the end. 

Can you live in faith, not fear, knowing the outcome? Can I? I believe He has promised good to me, but remembering that in the day-to-day decisions and moments of fear is tough. I work daily at living in faith and in the knowledge of His grace.

I encourage you to read Galatians 4 & 5 as a whole. There is much other to be gleaned from Paul’s words, that I cannot put into words. History repeats itself again and again. This is why we study it, or should. But when we are ignorant to the truth, miss the parallels, and refuse to see the comparisons, we only have ourselves to blame for the outcome.

Shira

 

repeating History

 

 

 

A new vision of the son who went ahead…

 

As the years pass slowly by from the time of Cayden’s passing, my grief has begun to take on a different form. Well, perhaps not my grief, but my imaginings of my son.

Instead of imagining him as he was… wheelchair bound, deaf, and communicating with a computer, I now have lost that image in my mind somewhat.

Now, I see a healthy, tall, handsome, almost 12 year old boy, standing at the top of the stair steps that are my living children. Sometimes I feel his presence as we stand at church, and wish oh-so-much that I had a third hand to hold, a third blond head to pat (now almost as tall as me!) I understand now that the image of Cayden as he was… is slowly becoming Cayden as he is.

In Heaven we are promised perfect bodies. Not bodies that don’t work well. Not arms that twist funny because of mis-shapen elbows. Not ears that can’t hear with out cochlear implants, or a mouth that cannot speak because of muscular weakness.

In Heaven, we are promised perfect bodies. Strong healthy bodies. Bodies we cannot even imagine in their perfection. And if Cayden is in Heaven NOW, then NOW he has that perfect body. He IS that tall, handsome almost 12 year old boy. He IS that loving, gracious son I desperately miss. He IS singing praises to our creator, and hearing the angelic voices rise with his, at the actual foot of HIS throne.

Easter 2007So it makes perfect sense that my image of Cayden has changed. Morphed through time. I don’t imagine him at 12, curled in a wheelchair, with back and hip issues, eating through a tube, and possibly breathing through a trach, like so many of his 12 year old HPE friends. I cannot. That is not MY reality, nor is it Cayden’s reality.

I do remember him as he was… a bright, vivacious loving smiling four year old boy, just as I remember my daughter as she was… an adorable totally cute 2 year old girl, signing to her big brother. That is a lovely memory, but it is just that. A memory. A remembrance of how things were… not a reality of what they have become.

Instead, I have a complex daughter, who misses her big brother at times, and desperately wants him back. A daughter who was a sibling to a special needs child, (a tough job for sure), and has a vague recollection of that, but now she gets to see her mother grieve at strange and unexpected times, and feels it is her place to comfort me. I have a middle child, who was thrust into being the oldest against her will & her personality.

I also have a son, who is mad at the world that he didn’t get to meet his big brother. Who understands the story without a context, without really knowing what life was like back then. Who desperately wants to meet his big brother, but can’t begin to imagine what his life would be like if Cayden were still here.

Last Pics of CAnd I have a memory of a broken boy, who wanted so desperately to walk, to talk, and to run with his sister. Who is now running those fields of grace & streets of gold with the his miscarried siblings he alone gets to enjoy for now.

I look forward to our reunion. To hugging my first born son who is as tall and as strong as sons should be. A young man who is taller than his mom, and who looks after his siblings. God willing, that day will be here someday soon. Until then, I love on the kids I have with me, with so much love it hurts my heart at times.

My burden is sometimes hard to see, yet the image of Cayden is always there. The promise of a better place, a healing we cannot understand, and a future eternal with Christ and those we love.

2 Corinthians 5 :6-10, 17  teaches us that

So we are always of good courage. We know that while we are at home in the body we are away from the Lord,  for we walk by faith, not by sight. Yes, we are of good courage, and we would rather be away from the body and at home with the Lord. So whether we are at home or away, we make it our aim to please him.  For we must all appear before the judgment seat of Christ, so that each one may receive what is due for what he has done in the body, whether good or evil.

Therefore, if anyone is in Christ, he is a new creation. The old has passed away; behold, the new has come.

My imaginings are Biblical and they are real. They are the new reality I live within. That of missing my son daily, while each year changes the grief. It ebbs and fades, only to come crashing back at times like these. Tonight marks 7 years since I kissed him goodnight for the last time.

Shira

 

Cayden’s New Life… 28 Days of Cayden, Day 28

Wow! We made it to Cayden’s birthday, with only a little stress. This normally chaotic and stressful time, was definitely eased by this journey of sharing. I hope I have blessed you with my stories, and helped you to see that ANY life is worth living no matter how short, or how challenged, or how trying.

DSCF1777Without Cayden, I would be a different person. Not sure I know quite how, but I am sure my life would have taken a different turn. Like I shared in yesterday’s post, if he had been born ‘normal’ I might be a working mom, running from place to place, trying to juggle the activities and sports of 3 kids, while I did theatre design work on the side. If he had just died in utero, I might have been changed, but differently than I was by getting the blessing of spending 4 ½ years with Cayden. If he had not died, and still was with us, my life would still be changed, but perhaps not as much as I might imagine. It’s hard to tell.

I try not to think about the ‘What-if’s?’ too often as they can bring despair and unbridled grief. Last night, I had the ‘Why-me?’s along with the ‘What-if?’s and it isn’t a pretty place to be. It’s tearful and heart wrenching, that act of looking backward, and doesn’t really help my soul. So instead, I look forward, as we are commanded by the Lord in Isaiah 43: 18-19: “Forget the former things; do not dwell in the past. See, I am doing  a new thing!”

So I am continuing to walk along this new path that God has set before me, doing my best to follow his lead. Some days I get off into the brambles, and I pay for it with some spiritual ‘poison ivy’ that I might have avoided if only I had been obedient. I strive to use God’s Positioning System for my life, allowing Him to have the stress of leadership, while I am His compliant servant. It is a challenge for me to be compliant, that’s true, but I’m working on it.

So this is our ending place, for now. I need to close the memory banks & photo books, to allow my heart to heal again. It’s been a month of raw emotion, of remembering the pain, the stress and the joy. There is much more to say, but that can wait for another time.

I want to close my series with a poem I wrote many years ago, when the wounds were still raw, and the pain was almost too much to bear. I wrote it for Skylar, to try to ease her pain, and to explain to her why it was okay that Cayden was gone. Ideally, this will someday become a children’s book, perhaps with my own illustrations, but until then, I feel that I am healed enough to share it with the small world of readers I have here on my blog. No eyes but my own have seen this until now.

Enjoy, and know I appreciate your prayers, your praise is humbly accepted but unnecessary, as I know I am doing His work, by sharing Cayden with you.

Shira

37524_415302760973_516870973_5119950_1956258_n

 

Cayden’s New Life

Skylar asks me, “Mommy, why did Cayden have to die?”

I answer, “I don’t know, dear, only God knows really why.

I know only He knows how our lives are going to change,

But it’s Cayden’s life that’s different now, in so many ways.

Here on earth, our Cayden, he couldn’t do a lot.

He couldn’t hear, he couldn’t walk, and he couldn’t really talk.

Cayden spent his days mostly strapped into a chair,

Waiting for us to push him so he could move from here to there.

But now, up there in Heaven, Cayden gets to run and play!

His legs work great and he can sing & dance the day away!

Here on Earth, our Cayden, he couldn’t really eat,

He needed all his food pureed into a mushy meat.

Now he’s tasting Heaven’s food, (I bet it’s oh-so-good!)

Everything is wonderful and he can chew it too!

When he was young, your brother, he saw things pretty bad,

The sunlight hurt his eyes if he forgot to wear a hat.

Now he sees the crystal city and streets of gold — so bright!

There is no sun in Heaven, because Jesus is the Light!

Cayden was born deaf, you know, he couldn’t hear a thing,

But now, in Heaven, he is always hearing angels sing.

Cayden couldn’t speak well, only said a few small words.

He needed a computer to make his thoughts be heard.

In Heaven, Cayden’s voice, I’m sure, rises high above the rest,

Singing praise to Jesus Christ the King in total happiness.

On Earth, your brother Cayden often had a lot of pain.

We did a lot to help him but he often cried in vain.

In Heaven, Cayden cries no more and he feels no more pain.

He never has to die again, or face any more strain.

I know you miss your big brother, we all miss him too.

I miss his smile, his giggle and his sloppy kisses –ew!

Now Cayden is with Jesus, and his body is brand new!

He finally gets to do the things he never got to do:

He gets to sing, he gets to dance — in freedom and in praise

And we will get to see him soon and forever spend our days,

With Cayden and with Jesus, our Holy Savior, Christ,

If only we believe in Him and ask Him in our lives.

Then we can go to Heaven too — for all eternity,

And we can live forever there — a happy family.”

By Shira Arnold

C. 2008

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…

 

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Why I’m writing… 28 Days of Cayden, Day 24

Sorry for the late post, I apologize. I was busy getting ready to start school with the kids tomorrow, trying desperately to complete the re-finishing of Skylar’s new/old desk. This is what happens these days… when I am deep in the recesses of my mind, remembering all the good and bad times that came with Cayden, my two living kids find me & demand my attention. Life goes on, doesn’t it?

I was talking with a friend this morning at church and she said how inspiring my posts are, how they make her want to do more for her son who has some special needs of his own. Another mom said how she is a little awed by me and my advocacy and persistence for Cayden. Others have commented on how great a mom I was/am. I feel very humbled by these comments & truly appreciate them, ladies & men (you know who you are). But this praise is not the reason I am sharing my heart and soul.

So why am I writing all this? Why am I putting myself to this challenge?

Spread-Say square w blue fltI write to raise awareness. I’m sure many of you reading have not heard of holoprosencephaly before reading these posts. Its a challenging word, with a challenging life, as long or short it may be. Maybe this little bit of information can bring some curiosity, for you to learn what it all means, how to help, and how not to judge a child who has severe disabilities and possibly facial malformations. Their soul is the same as yours and mine, and worthy of respect and honor. They are not vegetables, they are people! They are not necessary abortions, they are children of God.

For you, fellow HPE parents, I write to show you the HoPE that can be found in the diagnosis. If your child is still alive, you know all too well the struggles and joys that go along with raising one of these special children. If your child is unborn, or perhaps playing in Heaven with Cayden, maybe I can ease your journey a little as you glean something from Cayden’s story. To see that the doctors are not always correct, and that miracles do still happen. Maybe you see a bit of your child in Cayden, and a bit of me in you. I hope so, and if not, I hope you can see that it doesn’t take a supermom to make things happen, it just takes a vocal, passionate mom to speak up for their child’s needs.

family hike in the rainI write to share the journey with my friends who know me now, but didn’t know me then. As time passes, and 6+ years have gone by since Cayden went to be with Jesus, friends change. New friends come into our lives, and old friends sometimes fade into the background as the seasons of life go by. Some of my new friends never knew Cayden, never knew that part of my story, they don’t see me as a special needs mom. They may wonder why I empathize so much with the challenges of special needs kids, but I get it. I get it on so many counts, as you now can see. My kid didn’t struggle with reading, instead he struggled with the simplest things in life (like breathing, swallowing and holding up his head!). He had so many issues, I feel that I can empathize with almost any struggle a child may have. (and if Cayden didn’t have it, one of his friends probably did or does!) I know what IEPs are & how hard those meetings can be (his first IEP/transition meeting had at least 13 people at it. 13!) Cayden had a check mark in almost every area that a child can get qualified for in school special services. He didn’t stand a chance, by many accounts, but he persevered and progressed. His progress was in tiny, little, itty-bitty improvements, but it was progress. Inchstones, my fellow HPE moms call them, milestones are much too big steps for these special kids to take.

kids reading in cribI write to share a big brother with younger siblings. Skylar doesn’t really remember her brother, she was only 2 1/2 when Cayden died. She has inklings of memories, but they are more memories of stories I have told her over and over. Devin was not born when Cayden died, so he needs us to share whatever we can remember so that he has a picture of a big brother in his mind. He used to say how he was mad at Cayden that he died before he could meet him. Devin is such a sweet soul, a family-oriented kid, & it hurts his heart that he could not love on and know this brother that sounds so fun, and had all this cool gear.

I miss those gorgeous perfect curls!

I write to share my heart and my inspiration. People say to me, then and now, “I don’t know where you come up with these ideas!” I don’t either. It is just who I am. I am a creative minded, out-of-the-box thinker. My training is in Theatre Design.  I spent years of my life researching, creating, problem solving and implementing ideas to put onstage, to create interesting and unique sets, lights & costumes. This was not really that much different in my mind. Instead of reading a play & brainstorming an appropriate solution for the scenic or lighting design, I was reading my precious child, seeing what his needs were, and trying to find a workable solution. It’s what I did. It’s what I do. I love researching things, learning things, finding new and creative ideas. This was just a new outlet for my creativity, since I didn’t have time to work with all the appointments, feedings and caregiving. Now, I feed that passion by researching, learning and discovering things to teach my children while we homeschool. It’s just a new way to use the skills I learned in my education, and in my pre-kid career.

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Cayden’s baptism & dedication ceremony

I write to share my faith. Faith was always a part of my life, but until Cayden’s diagnosis, I didn’t really understand what it meant to RELY on God. To need to know Him, in order to make it through the day, through the pregnancy, through the fear. I needed faith to make it make sense. To make it bearable when we lost him. To know that one day, a reunion will happen as Cayden shows me all around Heaven and it’s streets of gold. And to know that this earthly life is but a mere breath compared to the eternity we will spend together. If I can inspire someone else to see that even though we don’t understand why Cayden and other kids are differently made, we can accept that, love them just the same, and not need to question the whys or wherefores. They just need love, but don’t we all?

hospitals

I had never spent time in a hospital until I gave birth to Cayden. By the time he was 4, we were familiar with 5 of the major hospitals in the state, and could even find our way around them without getting lost! If you know hospitals, that says a lot!

I write to share the struggles. We had a lot of ups and downs. I can’t begin to write about them all in 28 days. We struggled with a lot of things, and always it was something. Medical equipment, insurance, funding, special services, IEPs, school stuff. Pain, sleep, positioning, comfort. Sleeping. Eating. Breathing. Struggles were commonplace, but through them we always felt Christ sustaining us for the day, through the night, and into the next day. Even the day Cayden died, Christ was there, putting things in place, putting people in place to make the transition as peaceful as possible for us. We still cannot clearly see the purpose in Cayden’s sudden death, cutting short such a promising life, but we have faith that HE knows the plan and will make it work out.

family

Our first family picture at home with Cayden, 10 days old.

Romans 8:28 became our family verse while Cayden was a tiny baby.

And we know that in all things God works for the good of those who love him, who have been called according to His purpose.

We didn’t understand why Cayden was made the way he was, but GOD works ALL things for OUR good, and WE have been CALLED for HIS purpose. It is not for us to question, we just have to have faith that it is for OUR good, because we love HIM and are called to live for HIS purpose.

Verse 29-30 says,

For those God foreknew he also predestined to be conformed to the image of his Son, that He might be the firstborn among many brothers and sisters. And those He predestined, He also called; those He called, He also justified; those He justified, He also glorified.

WOW! Do you see that? God FOREKNEW (Cayden), whom he PREDESTINED to be conformed to the image of CHRIST. and Cayden, the predestined, was CALLED, justified, and GLORIFIED. Cayden is now perfectly healed, justified, and Glorified in heaven where he was Called to be.

Maybe it’s not as interesting to you as to me, but I dwell in the fact that God had and HAS a plan for Cayden, for me and for each of us. HE loves us and wants the best for us. And sometimes the best is hard to take, or hard to see amidst the grief and the pain. But it will all be clear in the end.

You see, even though we loved this verse from the time Cayden was very small, we didn’t fully SEE this verse until his memorial service. As we were planning his service and writing what we wanted to share, we had the “A-HA!” moment. Romans 8:28 was Cayden’s verse. He was born on 8/28.

I write to share the awe I feel at the little discoveries we continue to see in Cayden’s story.

Shira

 

Heart in my  hand

A prayer heart I placed at the chapel at Levine Children’s Hospital last year on Cayden’s Birthday.

 

 

 

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.

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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

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

 

 

Riding on the wings of the wind… 28 Days of Cayden, Day 20

C @ party

A good picture of Cayden in the red chair.

Cayden’s first wheelchair didn’t last very long. After we had been using it for a short time, I realized just what a blessing it was, and saw the true need for a well-fitting wheelchair. This bargain one was fine for the time being, but it was not ideal in several ways. After some time we did get approved for one specially fitted for him. It was very similar to the one we got on e-bay, but with a few small differences. We saw the need for full armrests, rather than the round swing away ones on the red chair. We also needed a tray for activities and eating. Better positioned brakes, to lock the chair down more easily (the red chair had individual brakes on each wheel, the new chair had one bar brake in the center of the back which would lock both wheels with a step of the foot.) It also had a quick release seat belt & chest strap, gently curved lateral supports & swing away foot rests.

C July 4

The new blue chair fit him better & was better suited to our needs.

I added on a single bar push feature, since I needed to be able to maneuver him with one hand, while pushing a stroller or holding Skylar’s hand with the other. We also ordered a folding canopy to keep him out of the sun. The new chair was equipped for the ezlock system for future use on the school bus or an adapted van. This would allow him to ride well supported in his locked down wheelchair, rather than needing to transfer him from chair to carseat, put the wheelchair in the back of the van, and repeat, several times a day.

The other features of the new blue wheelchair were a good tilt-in-space, lateral supports, nice curved head support (after the ordeal with the activity chair headrest, this was one feature I was quite particular about). Cayden picked a lovely royal blue color for the frame, and it had his name embroidered on the seat. It also had pneumatic back wheels for a more comfortable ride & anti-tilt safety features. This Quickie Zippie should have lasted for at least 3-5 years.

We did really like the new wheelchair & so did Cayden. He enjoyed sitting in it and never really complained about it. We used it for most things, eating, school, playing, shopping. It was so natural for me to rock & push him around; he went everywhere with me. When he passed, it really was a longing in my body, to have that chair to push. I actually kept his chair around the house for quite a while after he died, because I needed to see it, to push it, to rock it, to feel Cayden’s memory close to me & to gradually ease out of the habit of always having him at my side.

After we got his custom chair, we really enjoyed it. It was definitely well suited for him. But still, Cayden’s quick progress made it clear that he might be able to learn to use a power wheelchair. Once again, it was a case of us saying “Yes, he can!” while the therapists & teachers said “No, he can’t.”

In order for a child or adult to qualify for funding for a power wheelchair they have a list of qualifying factors that must be passed. These include the ability to stop and start on command. The ability to steer accurately. The ability to see where they are going, completing an obstacle course of sorts. The motor skills to steer the chair using some form of steering device: joystick, head tilt switch, 2-3 switches (for stop/start/turn). Cayden had several of these mastered but he still had to work on a few more. We practiced stop & start, green light/red light. We practiced with switches, driving his remote control cars with his SuperTalker. We tried head-tilt switches (a complete failure, this made no sense to him because of his poor head control, he would hit it randomly & we could not be sure he meant to do it.)

The problem was that I saw his desire to be more free. To have more independence as any typically developing 3 year old would want. And he was always at my side. He couldn’t run to the other room to grab a book. I had to see his need, interpret his desire & get it for him, then sit with him and read it to him, turning the pages with him. If I was busy cooking or cleaning or doing something else, he had to wait. I could see this was beginning to frustrate him.

I also could see from his cognitive progress that the ability to drive the power chair was there. But it would take a while for him to learn it, because of his poor brain-motor pathways. But until he learned it, he would not be able to even demo a power chair. Quite the Catch 22, isn’t it? I didn’t like this idea, because I felt that given the proper time and space to practice, he would be able to learn to manipulate the controls to be independent, that his desire would push through the difficulty and make it work.

DSCF1376So what did we do? Can you guess by now? …. Yup, I spent some time on e-bay. ; )  I think I actually found the power chair for C on the special needs exchange website. (not sure it exists anymore, but it was a great group to buy/sell/trade equipment that kids have outgrown). We found a used power chair a few states away at a cost that we felt was more than fair, & decided to go for it. Joey took a road trip one weekend & brought it home.

This chair was not as perfect a fit as the red chair, we knew that. But we are both crafty people & we worked on it, adapted it some and made it work, more-or-less for the time being. It was a trial, to see if we could make it work, and to see if our guess was correct that Cayden had the desire and ability to drive it safely. (We always felt our purchases were well worth it, knowing we could sell them again someday, if they didn’t work).

Power-wheels!

C trying out his new power chair. It was late when Daddy arrived home with it, but he had to try it out!

 

If you think the smiles on Cayden’s face from the first wheelchair were big, take a look at these! This was his first taste of freedom, of feeling the wind in his hair, of moving on his own desire and control. We threw a chest strap on the chair, strapped him in & let him ride. He LOVED it!

This was a great night. He was driving like a little whirling dervish, all over the place, no real direction, just enjoying making it GO! (remember that was one of his favorite words!) & trying to teach this boy to STOP!>>> well, that was not really happening. He had had enough of sitting still, waiting on someone else to move him. He wanted to GO!

This chair was a little big for him, and much too heavy to lift in and out of the van, so it was a stay-at-home, learn-to-drive-it-outside chair for a while. We needed to work on direction, aim and control before it came in the house, or before he was allowed out in public with it. I was afraid he would take off someone’s toe! This chair was HEAVY!

I also needed a way to make the steering work with his arms. He couldn’t really grasp this ball-shaped joystick, so I experimented with a variety of different options. Tennis ball, straight stick. Left Hand, Right hand. Finally I made a T-bar out of pvc pipe that worked really well for him. This was the way he was going to drive.

We got this chair for him in August 2007. Like I said earlier, we got his ECO in October 2007. So I put the power chair learning on the back burner for a bit, while we worked to get him communicating. Plus, it was getting cold, so the driveway was not a great place to practice, with his tendency to get sick. I was trying to find a place to leave the chair (like a school or church) where we could go and practice in the warmth, but hadn’t solved that problem before he died. We did do more work on it in the following months, but I am not able to find any more still pictures of his progress. (I was too busy helping him stay on the driveway!) I do have a great video of him driving the chair in January, that shows his progress & how close he was to being able to go for his evaluation.

I was actually contemplating bringing the chair inside very soon, when Cayden died. I felt he was almost ready to start learning the more subtle steering it would take in the house. The new T-bar steering method really  helped him control the chair in smaller movements (rather than a hurkey-jerkey: go fast & stop, go FAST & stop, he had with the ball).

These memories are so bittersweet to me. I see and remember just how far he had come, and how much progress he was making those last few month. He was progressing so well in so many areas & our hopes & spirits were so high. That made his sudden death all the more tragic to me, and I spent the first few months thinking about what he would be doing now, how great he would be driving, or talking, or listening with all of his technology.

Maybe technically this lame child never did fully walk. But he certainly felt the wind in his hair, of his own accord. He saw this chair and fully understood what it meant for his future. One day I was reading my bible, trying to find some peace with missing my precious son. I read these words in Psalm 104 & felt that they were mean to tell me that Cayden (the He) was okay, & it gave me peace. I will close with this, and encourage you to picture his golden curls, shining in the heavenly sonlight, with a smile from ear to ear, as he rides on the wings of the wind.

Shira

Psalm 104: 1-4

Praise the Lord, my soul.

O Lord my God, you are very great;
    you are clothed with splendor and majesty.

He wraps himself in light as with a garment;
    he stretches out the heavens like a tent
    and lays the beams of his upper chambers on their waters.
He makes the clouds his chariot
    and rides on the wings of the wind.

He makes winds his messengers,
    flames of fire his servants.

 

When Skylar was little, she used to ask us where Cayden was. We just told her, “He is in the clouds in Heaven.” This eased her 2 year old heart. She then would tell us sometimes she saw him up in the sky. So together we would imagine him up there, sitting on the edge of the clouds, just kicking his feet like kids do, watching us & saying hello. We still send him balloons every birthday, & watch until he snags them up to heaven.

Don’t judge a kid by his wheelchair! 28 Days of Cayden, Day 19

Getting a wheelchair is somewhat of a major step to take. It is saying to the public, “Yes, my child is handicapped. Yes, my child is different.” It also feels like you might be saying, “I am giving up on the hope that my child will walk.” It is a hard hard step to take, and a hard hard choice to make.

We had hopes that Cayden would be able to walk. His leg strength seemed to be there, but his body was so floppy the hopes began to fade away the older he got. And the sitting challenges became harder the taller he grew, so it became necessary to take that final difficult step. Yes, we needed a wheelchair.

C's red chair

This was the night we got his first wheelchair. I thought we did a pretty good job sizing it from e-bay!.

Because we had originally gotten the activity chair when Cayden was 2, we were ‘supposed’ to wait until he was around 5 for the wheelchair. (Insurance usually won’t buy a second seating device within 3 years). But by age 3, we saw that it was not going to be possible to wait that long. The double stroller wasn’t working anymore because his legs were just too long. The sit & stand wasn’t a good option for him because he didn’t fit. I needed something that he was secure in and was tall enough for his long legs.

I have said before that surfing the special needs websites like vendor sites and, http://www.adaptivemall.com became a bit of a habit for me. I would just spend time looking around, familiarizing myself with the different devices and equipment, and think about ways to try to make it myself or to make it work for us. If I found things I liked, I was known to spend some quality time on ebay, looking for a used version or similar product, saving searches & trying to find a bargain.

That is where Cayden’s first wheelchair came from. I admit, this is an unconventional way to get a child’s wheelchair, but we were feeling desperate. A good deal came up, it seemed to be a good size, and it was under $100. We grabbed it up.

C new chair

Giddy guy! Squealing with delight.

The day the wheelchair came was so exciting. Cayden couldn’t wait for us to put it together & try to figure out how to make it fit him. Joey is very mechanically inclined so we didn’t really have a problem setting it up. And thankfully, it fit Cayden perfectly. You can see from the pictures, he was so excited! He was just laughing and giggling. All over a used wheelchair.

His giddy response made us realize that the issue we had as adults with the wheelchair and what it symbolized to the world was not an issue for Cayden. He didn’t care what it meant or what it said to the world. He felt secure. He felt safe. He was comfortable and sitting properly for the first time in a long while.

new wheels!

People often make quick judgements based on appearance, or what things seem to be. Not just adults, but kids easily do it as well. We could see how people looked at Cayden and would feel pity, or sorrow or maybe disgust, but what Cayden always gave back was joy, peace and love. He was an open book, a mostly happy, smart, interactive kid, who was a joy to be around.

Lake N

A simple clip on umbrella made a great sunshade for photophobic Cayden, during a day at the lake.

I never minded when strangers or friends would ask me “What’s wrong with him?” or “Why is he in a wheelchair?” at least they were brave enough to ask and learn a little about him. What drove me nuts was when people would just look & stare and wonder, but not ask, and not say hi to him. Just obviously look & talk about him, three tables over. I urge you to remember (and to teach your children) that many kids in wheelchairs can think and talk just like you and I. They can say hi and respond back in their way, and to greet them with a smile and a “How are you?” will make their day (rather than stare, a point and a whisper). They thrive on interaction and want to be acknowledged as much as you would.

Matthew 7: 1-2 (NIV)

Jesus says

“Do not judge, or you too will be judged. For in the same way you judge others, you will be judged, and with the measure you use, it will be measured to you.”

Don’t judge a book by it’s cover is the common phrase we use today.

Judging others without knowledge can cause undeniable pain. It brings misunderstanding, pain and possibly ruined relationships. Jesus warned us to not judge, or jump to conclusions, because it will most likely come back to haunt us later. It’s so hard to make the choice to put your child in a wheelchair, not only because it can feel like there is a lack of hope, but because you don’t want your child to face the inevitable judgement our society so freely hands out.

Family HikingI still feel judged sometimes. I feel like people look at our ‘perfect’ one boy, one girl family and think “Oh, how nice. 2 cute kids, a mini van, and a yellow lab. What a perfect family.” But what they don’t see from the outside is the hole in my heart from missing and grieving my first born child. They don’t see how some days I think what our family would be like if Cayden had been typical. We’d be doing soccer and scouts with him, he’d be going into 6th grade, and I’d have my 3 stairstep blond kids all around me. Or even better, if he were just him, broken and beautiful and driving all over in his fabulous power chair, talking like crazy to his siblings on his ECO-13.

Instead, I have a partially broken heart, a few hundred pictures, and slowly fading memories of a boy born with a malformed brain, a fighting spirit, and a disabled body that needed a whole lot of equipment just to be safe.

Everyone has a hidden burden. Don’t judge. Some burdens are more obvious than others. But the burden of missing a handicapped child is far worse than the blessing it is to love and to raise them.

Shira

 

A SuperTalker for A SuperListener… 28 Days of Cayden, Day 15

 

Cayden switches on chair

You can see here we have 2 micro switches on each arm of his wheelchair. We used velcro cable ties to attach them, and later the terry hairbands worked even better on the arms. You can see all the wires feeding from the switches up his chair into the backpack to attach to his SuperTalker. That was cranked up very loud so he could clearly hear it, but he had to know which page was in the talker so he could communicate correctly. Lots to process and remember.

As I shared in yesterday’s post, (Day 14) Cayden quickly progressed through the switches, and it became obvious to me that we needed a better system. The constant switching of the papers in the SuperTalker was tiresome & really didn’t happen when it needed to. Instead we ended up using the pages on their own as an eye-gaze choice selector system.

We used these frequently for choosing toys, clothing or food. I would have a page with 4 options on it with icons for different toys (or shirts or lunch foods). I would hold it up to him & he would look at the page, then select one with his eyes & smile. I learned to easily see which one he was choosing by where he was looking. If none of the choices were acceptable to Sir Cayden, then he would look away without smiling & a “Seriously, these are my only choices?” look on his face.

SuperTalker-2009

This is the Super Talker, we usually used the 4 choice page for hands-on, and 8 icon page for eye gaze.

 

We learned that this system worked for any number of things & instead of using pre-printed pages, I moved on to small individually laminated icon cards (about 2”x2”). These were stored in a binder in business card holder sheets. This way, I could position them on his tray in any combination, & separate them enough to see his eye gaze selection easily. It worked wonders.

 

We used this method with his hearing impaired specialists to start to test his comprehension and vocabulary. He went from being able to select from 3 items, with one descriptor, to five items with 3 descriptors in just a few months, once we learned his selection method.

Imagine a table with 3 differently colored balls. We would say, “Cayden, show me the blue ball.” He would look at each of the balls in turn, and then… wait for it… wait… look and hold his gaze on the one he was choosing, usually with a smile, meaning “Yes, that’s it.” Then we would do it again, this time saying, “Show me the red ball,” or “Show me the big ball.” (in auditory training they suggest you not use the W question words, because children can become confused by the question words, and forget the real question. So you would always phrase the question in a command. (Show, point, pick, choose, grab, move).

As he progressed we would then have 5 balls, of different sizes, textures & colors. So we would say “Show me the big blue ball.” or “Show me the small, bumpy red ball.” You could say Touch the green ball,” or “Grab the fuzzy ball,” but these involved motor skills that were too complicated for C to do when working on this task. He COULD do it, but then the wait time for him to find the fright one, then force his brain to make his arm move to grab the ball, WOW! Waiting for the answer was so long he would sometimes forget the question & so would we!

I won’t forget the day when he did 3 descriptors with 5 objects. It was a collection of yellow vehicles. (all yellow). Dump trucks, crane, car, truck, bus. Some had things on them. So we would say, “Show me the dump truck with the blue duck. “ Usually you do this trying to trick the child, so we had a dump truck with a yellow duck as well. And a pick up truck with a blue duck. He selected easily. Then we upped the ante. After re-arranging the cars & animals we said, “Push the dump truck with the big yellow duck.” & he did. “Pull the dump truck with the small green duck” & he did. “Dump the duck in the little yellow truck,” & he did. He had mastered this skill. We couldn’t trick him! AND he was so motivated that he even moved his hands to make selections. Oh what a day!

Cayden understood this skill & it showed that he had really mastered hearing the differences between duck and truck, push and pull and dump. He could do it with objects & he could do it with pictures as well. This was a BIG accomplishment for Cayden, as a hearing impaired child,  as a visual impaired child, and as a child with holoprosencephaly.

I have two funny stories to share. It was summer so we had a summer school hearing impaired teacher coming to work with Cayden who was not his usual teacher. She didn’t know him very well, but was working hard to keep him moving forward on his skills. We began working on the selection game. We were working on position words (under/over/on/in/between, etc). The teacher had brought a set of small plastic dolls & furniture to work with, which seemed fine and useful for the task. But Cayden did NOT want to participate. We tried him in a different room. We tried him in a different chair. No go. Wasn’t going to play. Finally, I said, “I think he doesn’t want to work with these because they are DOLLS & he is a BOY and he wants to play with cars or balls or dinosaurs.” As soon as we got his ball bin out, he did his assignment without a mistake. What a stubborn & smart BOY!

books

The other major memory I have of him ‘showing his smarts,’ was when we were reading a new book called “Red Light, Green Light,” by Marjorie Wise Brown. It is a lovely book about animals, people & vehicles & where these things ‘live’ at night. The car goes in the garage. The cat sleeps in the tree. The mouse sleeps in the hole. There were at least 12 items that we read about, first they come out of their home, drive around, hit the red light ‘Stop!’ & the green light ‘Go!” & go home at night. So after one reading, I showed him some matching cards I had made. He had to pick the pairs for the things, matching the item to the home. After one reading, he correctly placed all the items in their home. This was huge to me & really gave me hope on his long-term progress. He got it. He was definitely NOT a vegetable, & by this point I really believed he was not even somewhat learning impaired.

He was hitting his achievement goals, passing all expectations. We started to tease about needing to start saving for college for him, he was so smart. I really had high hopes for his future!

C big brother!Don’t give up on your kids. If my deaf, blind, mute, lame, brain challenged son could do this… yours can too. All kids have potential, you just have to keep searching to find their gifts, find their communication method, find their passion. Even the most challenged kids have a reason for living & a passion that ignites their curiosity. Cayden’s was cars, dinosaurs & trains, NOT dolls & furniture. It wasn’t that he couldn’t do the task, he just flat out didn’t want to with those particular items. Find their interests. Even if it means reading books about legos every night for a year, read them. Buy the legos. Buy the toys. Watch the movies. Find ways to learn that ties into that interest. Find the entry way into their brain by finding the entry to their heart and interests.

No matter how hard we worked or all the progress Cayden made, college was not meant to be. Turning 5 was not even meant to be. We humans keep brainstorming options and plans, but God’s purpose prevails. (Proverbs 19: 21 MSG) I had Cayden figured out. I had options & big plans, but they were not part of God’s plan for Cayden’s life, or for mine. I was meant to be a mom without this child, and he was meant to spend a little while waiting for us in Heaven.

I can’t wait until I get to see him & his great smile again!

Shira