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

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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 World of What-If’s… 28 Days of Cayden, Day 27

Look in the sky tomorrow, as we send our birthday balloons to CC. There will be 11 this year. Seven more than the last time we celebrated with him. There will be 11 candles on a pudding cake, that should be all over his face; instead his little brother will get to blow the candles out as we sing to an empty chair.

I hope you hear the regret and sorrow in my voice as I say that. It is loud and clear.

Each year that goes by is another one spent without him. We can be joyful that we were blessed with him, and at peace with the fact that he is in a better place, and still wish we had him here. That is the duality of death in the midst of faith. We have been missing him longer than we enjoyed him, and that cannot be changed.

I don’t often allow myself to go there, but today I do. Go where? You ask. Go to the place of imagination and wonder, a place of what if…

 

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What if Cayden had just been a regular, normal kid?

Cayden would be going into middle school this year, 6th grade already! He would probably be almost the youngest kid in his class, because of his late birthday. (Or maybe we’d have let him wait one more year, and he’d be a big 5th grader. But he’s so smart, so we decided he could handle the work. 6th grade it is!)

He would be not quite a week into his first week of school, where he is the little kid in a big school, rather than the big kid at the elementary school. A transition for most, but Cayden handles it with ease. He’s ready for the challenge of changing classes, getting a locker and trying out for a new sports team. He’s still nervously picking just the right outfit each day, trying to impress the little red-haired girl in his math class.

Last week we spent back-to-school shopping, when we fought over the cost of his new sneakers (adult sizes already! Prices are sky high!) Target jeans aren’t really cutting it anymore, for this style-conscious child. He keeps his hair cut short, the curls aren’t cool, and his shining blue eyes are excited to get to hang out with his friends every day again (we didn’t see nearly enough of them this summer).

This summer was spent running him and his sister to swim team, sitting at the pool all day, and then heading to our neighborhood pool after, because they can never have too much chlorine! They each had a week at scout camp, where they learned all kinds of outdoor skills and hiked, built shelters & did other outdoor games like archery and climbing.

0026This fall, we are juggling his soccer practices with his brother’s, and cheering them on every weekend starting next Saturday. His scout meetings are another night, as are his sister’s, so we have 4 nights a week that we shuttle the kids back and forth. Little brother Devin patiently goes with the flow (not!) this year wanting to do just as much as the big kids.

Mornings start with a flurry, this year being particularly busy, as we have 3 kids in two schools and two different start times & bus routes. Cayden doesn’t really want to get up on time, so we have the morning ritual of groaning and complaining and snooze alarms, until I threaten to roll him and his covers onto the floor. Packing lunches (how much is this kid going to eat?!), eating a quick breakfast & off to the bus stop… don’t forget your lunch! or your backpack!

After school, I try to get the little kids’ homework finished before Cayden gets home, because his workload is dramatically increased now that he is in middle school. A huge backpack of books, and over 2 hours of work a night is hard to fit in with all the activities. Dinner is on the go many nights, with Dad going to soccer with the boys, while Mom goes to scouts and swimming with Skylar. Cayden has to stay up later than normal, to get the homework finished, and then sleeps late in the morning again.

This is the busy, fun life I had imagined for myself when I was younger. Does this sound like yours? It’s somewhat mine now, but not really….

 

What if Cayden were his broken self, and still alive…

Cayden would be going into 5th grade this year, we decided to keep him back when he was 5 so he could have extra time in kindergarten. He goes to a regular public school, where he is included in the regular classroom, and he only has a part-time aide this year. He has worked so hard at communicating his needs using his ECO, that we feel he is ready for a little more independence. He still needs help with class transitions, feeding and toileting, so the aide comes at pre-set times to help Cayden with these things. He has a special water bottle that attaches to his power chair, so he can drink throughout the day. His arm mobility is really improving, but he still can’t get into his backpack that easily, so sometimes he needs help with that. Because writing with a pencil is still really hard for him, with his funny elbows, he completes much of his work on his ECO in computer mode. He also has an ipad on which he does math and some other subjects; this makes all the kids are jealous, and they fight to get to help him.2011-08-28 19.01.15

This year Cayden has a new teacher who forgot to put him in the front of the class. She has him sitting in the back, thinking it would be easier for her to deal with his power wheelchair and setting up the other desks. But because of his hearing needs he needs to be in the front (it’s in his IEP! come on!). She also doesn’t really want to wear the headset and use the sound field system, even though we have explained several times how simple it is, and how it really does help all the students in the class. We also had to remind her that he needed free movement around the class, to get to the white board, and book shelves, but overall the classroom is still much too crowded for him to navigate. I think this might be a challenging year for us already! (At least he is not in the mobile units… pure torture for a child with a cochlear implant, and double for a child in a wheelchair, who doesn’t like the sun!)

Some things are good, the class has a few kids who know Cayden and enjoy helping him, and it’s closer to the library and cafeteria than it was last year. The new principal last year was a bit of a tough one to win over, but in the end, she saw that our complaints were just good advocacy, so she had to accommodate Cayden’s needs.

Last week we went back-to-school shopping, and we whimpered at the cost of his new extra wide sneakers (How hard it was to find adult sizes that accommodate ankle braces! Prices are sky high!) Jeans are really what he wants to wear this year, my style-conscious child, but his aides really prefer it when he wears athletic type pants (they are easier to get off when he needs help with the bathroom.) They already have to deal with his ankle braces, his ECO, CI, and all his other gear, so I try to keep them happy in this regard. I have a special deal with the principal that he is allowed to wear a hat whenever he wants, especially outside, to keep his eyes protected, since we often misplace the special sunglasses he needs. He keeps his hair longer, the curls hide the cochlear implant coil, and his shining blue eyes are excited to get to hang out with his friends every day again (he didn’t see them much at all this summer).

SAMSUNGThis summer was spent running Cayden to all his therapies and his sister to swim team. He had to sit in the shade while she practiced, because the summer sun is too bright for him to handle. Even the special swim goggles we have don’t really help in the early morning sun. The kids complain that they never get enough pool time, and that we always have to do what Cayden needs. Some days Devin sat in the shade with him and they played games on Cayden’s ECO, but other days, D swam & Cayden was left to try to watch a movie in the glare on the screen.

The big kids each had a week at camp, Skylar at scout camp, and Cayden at adapted horse camp where they learned all kinds of outdoor skills, hiked, built shelters, made crafts & did other outdoor games like archery and climbing. (Yes, he would have done that stuff too!) Devin had a couple weeks to himself, because he just wanted time alone at home with mom!

This fall, we are juggling Cayden’s adaptive baseball practice with his brother’s soccer practices, and his sister’s scout meetings. Cayden has therapy one night, and therapeutic riding on yet another, so we have 4 nights a week that we shuttle the kids back and forth. We’d like to do evening church activities, but there just isn’t time. This year Devin wants to do just as much as the big kids, and it adds another sports schedule into the already busy mix. The kids complain about doing homework in the car, or at the practices but that’s how it has to be.

Mornings start with a flurry, but I’m relishing this year, since we have 3 kids in one school, the only time it will ever happen! I have set it up so the other kids can ride the adapted bus with Cayden and help get him on and off at school. If we run late, school is pretty close, so we all pile into our adapted van and drive over there, hoping to miss the drop off line, because no moms like to get stuck behind our van, with our long unloading ritual! Cayden doesn’t really want to get up on time, so we have the morning ritual of groaning and complaining and snooze alarms, until I threaten in sign language to roll him and his covers onto the floor. Flicking the lights and shaking the bed sometime just isn’t good enough. Packing lunches this year is bearable, Cayden finally can eat a regular pb&j, I only hope that he doesn’t have a child in his class with peanut allergies, or I don’t know what he’ll eat for lunch! Soup every day… boring! He has a regular breakfast of oatmeal & applesauce & off to the bus stop… don’t forget your ECO! or your charger! or your ipad!

While the kids are gone, I have some time to deal with insurance, research the new walker we are looking for, and trying to set up another IEP meeting. I have let it slide for now, but Cayden really needs to have set time in his walker and stander, and this just hasn’t happened yet. The aides are not wanting to stay with him that long, and the teacher thinks having him standing will distract the class. I really need to get that wheelchair that can sit and stand and he can drive it standing up through the school. That would be excellent, but we can’t get it for at least another year yet. We have had so many wheelchairs, the insurance company is dragging their feet, even though he is growing like a weed and really could use a better option. Plus the van needs service, the power lift is acting funny, so I have to figure out when we can drive all the way downtown to spend a day or two getting that fixed. Never a quiet moment around here! I also am still working with Families for HoPE, and volunteering at the barn when I can, so time flies when the kids are at school. Before I know it, its time to meet the bus and see how the day went, and deal with the tired and crazy kids.

IMG_2090After school, I try to get the little kids’ homework finished and let Cayden’s after school aide help him with his. But as always, she has a problem getting to the right screen on the ECO’s computer so I have to help. Cayden is very agile on his ECO, and has a 32 icon screen now, so surprisingly it goes fairly well. In fact, Cayden often knows how to work it better than I do, and he is beginning to help me program it too. Still, he has a lot of homework, and needs help typing and writing, because even the adapted work takes him a long time. At least she will stay with him tonight so I can bring the other kids to their activities.

I forgot to get dinner in the crockpot, so I am trying to find something to cook quickly before soccer tonight; something that Cayden can chew, Skylar will eat, and Devin won’t complain about. Dinner is on the go many nights, with Dad going to sports and scouts with the boys, while Mom goes to scouts and swimming with Skylar. Cayden still has a hard time falling asleep at night, but sometimes that’s okay because he needs the time to get his homework finished, but then he sleeps late in the morning again!

 

Wow, I sound busy either way. I’m busy now, but adding an 11 year old child, either typical or special needs would definitely add a bit more crazy fun to the mix. Instead of doing either of these imaginary scenarios, I homeschool the two kids I have, drive them to riding, swimming, scouts and soccer & volunteer for a variety of different things when I have time.

Life is unpredictable, except to the Man in charge.

Job too, felt his life was unpredictable, and yet his faith never wavered.

In Job 23:10-14 Job says,

“But He knows where I am going.
    

And when He tests me, I will come out as pure as gold.

For I have stayed on God’s paths;
    

I have followed His ways and not turned aside.

I have not departed from his commands,
    

but have treasured His words more than daily food.

But once He has made His decision, who can change His mind?
    

Whatever He wants to do, He does.

So He will do to me whatever He has planned.
    

He controls my destiny.”

This is my challenge too, my quest. To stay on God’s paths, to not to turn aside, and to treasure his words more than food. He controls my destiny & I’m okay with that. The what-ifs are only imaginary; my life has been blessed beyond compare because Cayden was in it. To wish it differently is to wish away the blessings I’ve been given. To have never met the friends I have made in the world of holoprosencephaly, therapy, and advocacy. To have perhaps been lost to the world of too busy for faith. Would I have written it with a different ending? Maybe so, but I submit my life is His decisions, to ‘do to me whatever He has planned.’

 

Shira

Picturing Heaven… 28 Days of Cayden, Day 26

While I was pregnant with Cayden, I was lucky enough to find a great women’s Bible study, sponsored by MRO. They were very welcoming to me, and as any new friends are, excited to see that I was having a child soon. How difficult it was to say, as my introduction to this group, that ‘Yes, I was expecting, but not it was not exciting or necessarily happy. That instead, it was highly likely that my child was going to die before his birth, or within hours after. By the way, aren’t you glad to meet me?’

Their smiles turned to concern when I voiced my oh-so-desperate prayer request that we be able to greet him alive, and maybe have a few hours to spend with him. And they wrapped their arms and hearts around me, and Cayden, and have stayed with me since.

They were with me at the hospital, during those 9 days in the NICU, bringing food and gifts. They prayed for us, loved on us as much as they could. And as Cayden grew they loved on him so much. They fought over who got to hold him first. They never complained about caring for him so I could go to the study. They treated him like all the other kids, and let him play and sing songs. And they were there for his memorial service, spending hours inflating 250 balloons, so we could have a balloon for each week we had spent with him. IMG_0019.JPG

During the year Cayden was 3, the study was on Heaven. Our wonderful Bible study leader, ‘Miss Jackie’ Pegram, planned this wonderful study on the beauties and wonder of our Eternal Home. I found it riveting, so interesting, to see this place brought into vivid focus and rainbows of color. Looking back, it feels like this study was meant for me. It was preparing my heart for the loss of my son. Without this knowledge, I am sure that Cayden’s passing would have been much more difficult, but knowledge is power. Actually, knowledge is peace in this instance.

Miss Jackie

Miss Jackie, explaining her Heaven pillow at Cayden’s balloon release. One side tells of what IS in Heaven, the other side tells what IS NOT in Heaven. It is a teaching tool that we used often to share the tough concepts of Heaven with Skylar.

Miss Jackie is such a wonderful teacher and her lessons brought us all over the Bible. She can explain the most difficult subjects in a way that they just make sense. Many of these notes come from her teaching, or are my take on her explanations. I hope they enlighten you some about Heaven, and please allow for grace in your critique.

Why concern ourselves with Heaven? How do we know it is real? The Bible discusses it again and again. I will share a few things I learned about Heaven, and why I feel certain that Cayden is in a better place.

…our citizenship is in Heaven. And we eagerly await a Savior from there, the Lord Jesus Christ, who, by the power that enables him to bring everything under his control, will transform our lowly bodies so that they will be like his glorious body. (Phil. 3: 20-21)

Heaven is where our citizenship is, where we belong, and where we will receive new, glorious bodies. But we will not become angels, we will be at home with the angels.

Therefore, angels are only servants—spirits sent to care for people who will inherit salvation. Hebrews 1:14

 So much of the beauty of the physical Heaven is found in Revelation 21 (NLT)

3 I heard a loud shout from the throne, saying, “Look, God’s home is now among his people! He will live with them, and they will be his people. God himself will be with them.

God himself dwells with man.

4 He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.”

There will be no more death, sorrow, crying or pain.

And the one sitting on the throne (Jesus) said, “Look, I am making everything new!”

We will have new Heavenly bodies!

And then he said to me (John), “Write this down, for what I tell you is trustworthy and true.” And he also said, “It is finished! I am the Alpha and the Omega—the Beginning and the End.

We can have confidence that this is truth, for Christ himself tells us through John.

We also see that anyone who is thirsty, (who seeks Christ), and who prevails in their faith until the end, will be there:

To all who are thirsty I will give freely from the springs of the water of life. All who are victorious will inherit all these blessings, and I will be their God, and they will be my children.

Who will not be able to enter Heaven & instead will find eternity in Hell?

“But cowards, unbelievers, the corrupt, murderers, the immoral, those who practice witchcraft, idol worshipers, and all liars—their fate is in the fiery lake of burning sulfur. This is the second death.”

Lets pause for a moment & refresh. How do we get there?

John 3:16 tells us: For God so loved the world, that He gave His one and only son, that whosoever believes in Him shall not perish, but have eternal life. We need to believe that Jesus is the Son of God.

John 14:6 repeats this: Jesus answered, “I am the way and the truth and the life. No one comes to the Father except through me.” Belief in Christ is the only way to get to Heaven.

 

Now for the description of Heaven, I believe at times it is just too beautiful to put accurately into words:

Then one of the seven angels …said to me, “Come with me! I will show you the bride, the wife of the Lamb.”

10 So he took me in the Spirit to a great, high mountain, and he showed me the holy city, Jerusalem, descending out of heaven from God. 11 It shone with the glory of God and sparkled like a precious stone—like jasper as clear as crystal.

A city of glass! Sparkling like crystals!

12 The city wall was broad and high, with twelve gates guarded by twelve angels. And the names of the twelve tribes of Israel were written on the gates. 13 There were three gates on each side—east, north, south, and west.

The city is laid out in a square, with three angel-guarded gates on each side, each gate made of a single pearl, and named for a tribe of Israel (the tribes were named after the sons of Jacob).

14 The wall of the city had twelve foundation stones, and on them were written the names of the twelve apostles of the Lamb.

15 The angel who talked to me held in his hand a gold measuring stick to measure the city, its gates, and its wall. 16 When he measured it, he found it was a square, as wide as it was long. In fact, its length and width and height were each 1,400 miles.

My teacher said that based on this square footage, (1,400 miles cubed) if every person who ever lived made it to Heaven, we would each have 75 acres! This is no small city! It is a real, measurable, literal, physical place.

17 Then he measured the walls and found them to be 216 feet thick (according to the human standard used by the angel).

18 The wall was made of jasper, and the city was pure gold, as clear as glass.

Walls that are 216 feet thick! That is approximately 2/3 the length of a football field, and that is just the outer wall, made of jasper. The city is made of clear, glass-like gold.

19 The wall of the city was built on foundation stones inlaid with twelve precious stones: the first was jasper, the second sapphire, the third agate, the fourth emerald, 20 the fifth onyx, the sixth carnelian, the seventh chrysolite, the eighth beryl, the ninth topaz, the tenth chrysoprase, the eleventh jacinth, the twelfth amethyst.

Beauty is so abundant here, that what we consider rare and precious, they lay their foundations with. We would use gravel and cement, they use gemstones!

21 The twelve gates were made of pearls—each gate from a single pearl! And the main street was pure gold, as clear as glass.

Again, what we consider precious, in Heaven is commonplace. Heavenly treasure lies not in precious stones or gold, but they see it in the Lord. Perhaps we too should change our perspective to that and not strive for gold and jewels, which are really just Heavenly building materials.

22 I saw no temple in the city, for the Lord God Almighty and the Lamb are its temple. 23 And the city has no need of sun or moon, for the glory of God illuminates the city, and the Lamb is its light. 24 The nations will walk in its light, and the kings of the world will enter the city in all their glory. 25 Its gates will never be closed at the end of day because there is no night there. 26 And all the nations will bring their glory and honor into the city.

Even though there are these glorious pearly gates, they are never closed because there is no fear of night, no fear of evil being allowed to come through the walls. You must be written in the Book of Life (by belief in Christ) in order to enter.

27 Nothing evil will be allowed to enter, nor anyone who practices shameful idolatry and dishonesty—but only those whose names are written in the Lamb’s Book of Life.

The physical description continues in Revelation 22

1 Then the angel showed me a river with the water of life, clear as crystal, flowing from the throne of God and of the Lamb. It flowed down the center of the main street.

There is a beautiful, clear river flowing through the center of the city streets, coming directly from the throne of God. Living Water, perhaps?

On each side of the river grew a tree of life, bearing twelve crops of fruit, with a fresh crop each month. The leaves were used for medicine to heal the nations.

A redeemed Eden, complete and perfect. A tree of life with never ending crops of fruit.

No longer will there be a curse upon anything. For the throne of God and of the Lamb will be there, and his servants will worship him. And they will see his face, and his name will be written on their foreheads. And there will be no night there—no need for lamps or sun—for the Lord God will shine on them. And they will reign forever and ever.

No more curses, no more sin. No night, no darkness, so no need for lamps or the sun. Heaven has the SON instead!

 

If you don’t think this sounds like a better place, than our polluted, crime-filled, sickness filled planet, I’m not sure I can help you. I think it is wonderful, and I’m sure Cayden thinks so too. So if you ask me “Don’t you miss him?” Yes, of course I do! But I firmly believe, based on this study we did years ago, that Cayden IS in a better place. A place so beautiful I, in my creativity cannot begin to fathom it. A place even our wildest dreams cannot comprehend. A place where kids who were earthly bound by handicaps run and dance and sing and play. A place I cannot wait to see.

Not so long ago, at church, our worship team was taking a musical segue between praise songs and began playing “Where the Streets Have No Name.” It had been a rough morning emotionally, and I was missing my kid! Suddenly, I was transported to a mini-visit with Cayden, where he was beaconing me to join him as he showed me around this crystal city with golden streets. As the song lingered, I had this lovely vision of our reunion & Cayden saying “I can’t wait to show you around, Mom!” I can’t wait either!

Shira

 

Heaven Bracelets

My Heaven Bracelets & Companion Bookmark.

While learning about Heaven, I was inspired to make a bracelet I call the ‘Heaven Bracelet.’ It shows a little of the beauty of Heaven, and serves as a reminder to us to look forward to our eternal home. I sold them for a while, and still have some available, if anyone is interested in purchasing any, please let me know. Each part of the bracelet represents a little piece of Heaven, from the 12 Gates of Pearls, the crystal city with the golden streets, and the 12 gemstone foundations.

 

If you are interested in going deeper in study on Heaven, I strongly suggest reading the book “Heaven” by Randy Alcorn. He goes deep into scripture to answer the most common questions about Heaven & it really helps to see what common ideas are myths and what are truths.

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.

C baptism

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!

 

 

To sleep, perchance to dream… 28 Days of Cayden, Day 22

 

Ahh, sleep. Something I didn’t experience very much while Cayden was here. It was a rare and unusual night to have a good night’s rest, and I’m not sure I had too many honest-to-goodness REM sleep dreams. Obviously, when he was a newborn, sleep was uncommon. Particularly then. Since he fed so slowly, it was about a 2 hour process to feed him. I would get up, wake Cayden up, change him, feed him (at least 45 minutes right there), cuddle him and play with him some before he fell back asleep. Then pump for 30+ minutes, clean and put away the pump stuff, preserve the milk. By then at least 2 hours were gone & they wanted him to eat every 3 hours, start to start. So that left 1 hour for me to catch a catnap before it was time to start again.

c bassinette

The bassinet was huge when Cayden first came home. Love his position in this picture!

One benefit to C’s not being able to nurse was that Joey could take a few feedings & usually got the early morning and the late night feedings so I could take a bit longer rest. Add in all the daytime appointments and just daily life stuff… sigh. I was a bit of a zombie for months, that’s for sure.

As Cayden got older, he never really did learn to eat faster. He ate larger quantities, but it pretty much always took him 45 minutes to eat, whether it was 30cc or 8oz or a bowl of pureed food. The only benefit was he ate less often so we had a bit longer between feeds, so a bit longer to rest.

However, it was not usual for Cayden to go to sleep easily. He had a hard time falling asleep, like most kids with HPE, and a hard time staying asleep.  He couldn’t roll himself over in bed, so we had to go re-position him several times during the night. He had sleep apnea, so he would wake himself up from sleep as well. And he had a super hard time getting to sleep.

Joey & CWe had a nightly ritual of him cuddling with Daddy. Mommy was not good for sleep. Eating was for Mommy, sleeping was for Daddy. So he had to fall asleep on Joey, which usually resulted in Joey sleeping too. I would put C to bed & he would sleep for several hours before needing a change or repositioning. Cayden did need to take melatonin nightly, to help fall asleep. We also tried chloral hydrate for a while, but that was a very strong sleep medication and it had some breath suppressing qualities if dosed improperly, so we didn’t like using this one very often.

A bassinet worked well for Cayden for quite some time, because he was so tiny. He then moved to the traditional crib and that was fine for a while too. But as he got older &  more active we had a problem. He would spin himself around somehow and get his legs or arms caught in the crib rails. Having such poor motor skills made it impossible for him to un-do himself once he was caught, so he would cry and carry on until he was saved by one of us. We were afraid he was going to break a leg or something this way, so I had to make a special mesh barrier that covered the crib rails so he couldn’t get tangled up in them.

But this didn’t seem like a good solution anymore. So I started researching beds. Did you know they have so many special needs beds & they are among the hardest piece of equipment to get approved? There are electric beds, large crib-style beds for kids who need restraint or for kids who will fall out, beds with side rails, beds with covers. Again, so many choices, so many things to think about.

Recliner sleeping

Catnaps were popular, as was sleeping in the recliner. It helped his sleeping to keep his head elevated, particularly if he had trouble breathing from a cold or illness.

We decided we needed an electric bed with tilting head & feet, so we could keep his head elevated & his airways open. We also definitely needed bed rails, because he would have easily fallen off. We didn’t need a ‘cage’ style, because climbing out was not our concern, falling out was. But the crib-style beds were even more difficult to get than a regular adult electric bed.

I finally somehow got the right person to say the right thing about medical necessity & we were approved for a rental electric bed. This would come out of his medically fragile allowance (this also helped pay for his diapers & therapies), and could go indefinitely. After a period of time renting, the bed would be his (we would have purchased it) so it was basically a rent-to-buy. It had a special gel mattress top to help prevent bedsores, and electric raise/lower/lift controls as well.

new bed

Cayden’s new bed, in his newly decorated room. I used blankets on the rails, to help keep him in & the tilt feature was like a little ride for the kids! Smiles all around!

We also had a special positioning pillow called the Versa-Form that was a great method of keeping him on his side & in the proper open-airway position. This was a vacu-form pillow, with a hand pump vacuum. It was sort of like a bean-bag filled balloon. We would smoosh it around him as we needed, then suck the extra air out & it would stay in the position we chose. We made a sort of trough for Cayden so sleep on his side in, he couldn’t roll either direction when in this properly.

We had contemplated many times about getting overnight nursing care for Cayden, but really his needs were not that severe, other then the re-positioning. By the time he was 3 or so, he was not wetting his diaper at night, so that wasn’t an issue. He just needed the rolling over like anyone would. His apnea was a concern, but we felt we had it under control by the positioning.

As I’ve mentioned before, Cayden unexpectedly passed away in his sleep on Feb 1, 2008. Nothing abnormal had happened in the weeks preceding his death, he had been making outstanding progress. We didn’t know what happened to cause it. We did not ask for an autopsy, but left his body alone to not make him endure another time of being ‘under the knife.’ Our belief is that he had a bad apnea episode that shut his breathing down too long and he couldn’t recover. Perhaps it caused a grand mal seizure. We don’t know. We are okay not knowing. We can wonder and guess, but truthfully we believe his pre-determined time had come.

We go back to Psalm 139 to re-enforce this concept:

Oh yes, you shaped me first inside, then out;
    you formed me in my mother’s womb.
I thank you, High God—you’re breathtaking!
    Body and soul, I am marvelously made!
    I worship in adoration—what a creation!
You know me inside and out,
    you know every bone in my body;
You know exactly how I was made, bit by bit,
    how I was sculpted from nothing into something.
Like an open book, you watched me grow from conception to birth;
    all the stages of my life were spread out before you,
The days of my life all prepared
    before I’d even lived one day.

And this is where I say… be careful what you pray for. I had been praying regularly for peace, for a better sleep solution, for rest. I had been running ragged and was tired. I wanted Cayden to make progress and to be healed. I was asking for the chaos (that our last few months had been) to slow down, and to find more time to just be. I needed progress on the DME we had been trying to get approved because he was outgrowing his stander, he needed a power chair & a bath chair. We were really considering getting night-time nursing, I actually had already spoken with the care agency to try to find someone for us. But adding a person into the house while we were sleeping was frightening to us. We had not had the best luck with caregivers recently, and this was a whole new level of trust. God took care of that, and so many other worries we had with one quick move.

Sleep was now a commodity I had no desire for, but could somewhat easily obtain. We did still have 2 year old, now a confused, traumatized child, who needed cuddling now more than ever. She spent many years in our bed or on our floor, needing the close companionship for her security. Bedtimes became a bit of a challenge, as she didn’t understand, nor could we fully explain how sometimes you just don’t wake up. I think she had & still has fear from that, and that’s something I cannot fix.

For months after his passing, I would wake up at his 4:30 “Roll me over, mom!” time & feel lost & empty, grieving the what-if’s. It took a long, long time to break that unconscious habit. Now a good night’s sleep can be found most nights, but still, it’s a bit of a guilty pleasure. Grief changes you in many small, incomprehensible and unpredictable ways. It’s different for everyone and you can’t fathom how it will be before it happens. My prayer is that you can find the peace I find in Christ, the giver of all good things… including a good night’s sleep.

Clean living and potty talk! 28 Days of Cayden, Day 21

Cayden needed full support to sit. & that meant everywhere. Can you think of places I haven’t mentioned yet that sitting might be a challenge?

For those not in the realm of Special needs kids, there are special things for EVERYTHING! the ones you don’t even think about are often the hardest. Bathtime, toilet time, bedtime.

duck tubYes, we had a special devices for bathing. I had a super find of a blow-up baby bath tub that fit right into the big tub. It was soft, had a high back & actually worked very well for our floppy kid. Until his legs got too long.

Once he outgrew that, it became something else to research and learn, and unfortunately I picked (or was steered) wrong on this one. We got the Manatee bath chair, which was a fully adjustable fully supportive bathing seat. It had straps, lateral supports, a tilt-able back & leg supports, and  adjustable height legs.

The main problems with this chair was that you had to fill the tub super high in order to cover his body when he was in the chair. And you still had to kneel or get down to bathe him. And it took almost the whole length of the tub. This wasn’t a big problem, but he was 3 and his sister was 1 and we usually tried to bathe them together so they could play. She didn’t have a lot of room.

Manatee

C in his bath chair. He really enjoyed playing in the water or swimming.

This chair also had other major issues… when it got wet it was very difficult to adjust. Yes, you read that correctly. A bath chair, didn’t work properly when wet. I actually had to bring this chair to the distributor to have them try to adjust it for us, and they had a hard time, acknowledging that it was a poor design. But did that matter? NO! because just like a wheelchair, the timeline you have to get a new piece of DME of the same category is 3-5 years. So we were stuck with a poorly designed, hardly adjustable, but supposed to be adjustable bath chair for 3 years. And the material it was made of, had a tendency to get smelly if left to dry. HMMM… it gets wet almost daily. It smelled a lot. I washed the fabric, but it was so hard to put on and off, it didn’t happen very often. Just a rookie mistake on this one folks! If you are in the market for a bath chair, I truly don’t recommend the Manatee!

DSCF0855There are other better chairs out there, and we were looking. Some suggestions:  Go for low profile if you want your child to stay warm. Plastic ‘fabric’ that will not hold moisture or smells. Easy to adjust, even when wet. No leg supports if you want another child in the tub at the same time. Shower chairs are smaller, but they don’t allow the child to stay warm, and Cayden really didn’t like the shower sensation on his body, so it was out for us. The kids are higher, so easier to wash, but seems a little unsafe in the end. Personal preference, of course, but just don’t let yourself be taken by that lovely blue (expensive) fabric chair!

high back toilet seat

I don’t have a picture of C in the potty chair (some things I guess you just don’t take photos of!) but this is the one we had.

We also had a specialized toilet chair. This one took me months of looking, and months of proving that indeed, Cayden was capable of learning to toilet on his own, in order to get it approved through funding and insurance. We discovered a Rifton potty chair. I liked this device. It had a variety of options for use including: clip onto the toilet, on it’s own with a catch bucket, as a full unit rolled over the toilet, or just as a step. We had the fully loaded model, of course, tilting high back, straps, seat belt, laterals, armrests, foot rest, tray. Yes, they even make an activity tray for the toilet seat. & we had it because of C’s need to push with his arms gave him stability in sitting (& doing those toilet duties).

over toilet seat

The seat could also sit over the toilet to use, and the small part of the chair with back could just clip on by itself with out the stand.

Cayden was actually making progress in this area. It was a challenge, yes, because of his constipation and digestive issues. Often he had a hard time getting the job done. But he was starting to indicate when he was ready to try & was making good steps towards being trained. That was a big deal! He hated being diapered & really wanted to be independent in that area. The work on transferring was paying off, and we were beginning to see positive outcomes!

The thing most people don’t think about is this: these were excellent devices for using at home. But what happens when you travel? or go to the hospital? How do you give your child a bath, or help them use the toilet? Do you take all this stuff with you? As much as things are foldable or portable, there is still too much to take on a trip. Along with the necessities like the wheelchair, the bed positioning pillow, the nebulizer, diapers, wipes, meds, etc. Packing was a pain!  So you just usually tried not to go places because inevitably you would forget something important, the kid would get sick, and end up needing to go to a doctor. Sigh. Just not worth the effort.

We didn’t often get away for fun with Cayden, we did enough driving to doctors, therapists & hospitals that fun was a weekend staying home. I drove all the time and packed for the day usually, for at least Cayden, and then Skylar too. We would sometimes stay with friends on our trips to Raleigh, which called for an overnight, but a pack & play and a stroller worked okay back then. The older Cayden got and the more gear he had, the less we seemed to get out.

But really, staying home, then and now, is a blessing. We spend so much time, running from thing to thing that it is difficult to just be calm and sit. Our society is so go-go-go that a day of rest is really hard to come by. Jesus gives us the answer in Matthew 11:28-30, as he is talking to the public.

“Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you’ll recover your life. I’ll show you how to take a real rest. Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.”

We can learn much from his words, as we realize that true rest only comes when we walk with Christ, rest in Him, and live in His company daily. He teaches us what is important and what should be released. What we need to stress about, and what we need to let Him conquer. So much of Cayden’s life was out of our control, so we learned that we needed to rest in Him, for Cayden, and trust that His plan was great, and it would be for good. We learned that little things are what matter, the cuddling, the reading, the playing together. And we learned to lay our cares on Him. I hope you too can find the real rest that Jesus brings, because we know that while the kids are young, sleep is hard to come by.

Shira

 

More about sleep (or our lack thereof) tomorrow.

 

 

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.

IMG_0545

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