Look Straight Ahead

It’s been a bit of a rough week. We finished our second back to school week (after a long week & even some Saturday school), with more complaints and lectures than I would like for week 2. We haven’t settled into our schedule for this year yet, and its a rough transition from playing all day at the lake to sitting around doing spelling and math!

Our Summertime Lakeside view

Week one went ok, but week two, ugh! Let’s just say I have high hopes for weeks 3 & 4! I’m looking forward to trying again, getting in the rhythm, and resetting after the bumpy week we just finished.

I am working hard at placing God in the forefront of our school. Beginning our day with Bible study time and stories has helped. We all start with some God time (and Mom gets a little mom time), and we just seem to start with a better frame of mind.

Honestly, we/I missed Bible time on Thursday because we decided to do a homeschool day at the local heritage museum somewhat last minute. Our day began a bit earlier than usual, and since we were in a rush, I didn’t take time to sit with God. Then I didn’t on Friday, or Saturday.

It makes a difference, y’all! 

I have felt a bit out of sorts. A bit lost. A bit unsure of where I was headed & why.

Now, to be fair it’s been a bit of a rough week emotionally. Friends of ours are watching their son fight through the last phase of an aggressive cancer. As a mom who has lost and grieves a child, my heart hurts. Hurts for them, for their other son, for their friends, for their son’s many many online followers. I hurt for their future, short term and long.

And this week, I’ve been led to read through Job, of all books. (Revisiting the themes of: Our days and months are determined, All life is in His hands, How do we even begin to ask for healing, and How does He destroy someone He has created?)  I’ve been a bit of an emotional mess, trying to maintain normalcy. That might have something to do with our rocky school week, I suppose. I guess maybe I need to have some grace days for mommy’s moods. Add in a few ‘Give myself a break and just feel’ days.

I just so miss my child, and hate for any other family to have to endure that burden. It weighs on my soul. This child is about the same age that Cayden would be if he were still with us. But this child was happy, healthy, normal… until the rare form of cancer attached itself to his neck. His parents have been fighting hard to keep his life more or less normal, to fight the good fight, but sometimes, God has other plans. Not that the end has been written for us to see yet, but it unfortunately seems that the cancer is winning.

From my perspective, I see that they have been blessed with time to share with their son. Time to say a long goodbye. Time to make and do a bucket list. Time to enjoy him one more day. Time that we were not given. It’s a two-sided sword, sudden vs. drawn-out ends.

At C’s Balloon release, Miss Jackie shares the meaning of the Heaven Pillow

We were saved the choices, the mess, the seeing our child get sicker; we were given instead a sudden and unexpected end. No chance to say goodbye. No chance for a bucket list. No holding his hand at the end. Just an end.

Yes, read the bitterness in my voice. It plain out sucks. No one wants to outlive their child. To miss them day-to-day, everyday. I feel for them and their journey. It won’t be easy or smooth, that I know.

Still, I have chosen, in these past 8 years, in the day-to-day of missing my son, to make a  perspective change, and to look straight ahead. To look ahead to our Heavenly reunion, one that will last for an eternity. I hope to have a few more years before I get to that golden city, but that short wait will be nothing compared to the blessing of an eternity to spend with Cayden and our other children who are waiting there for us.

Looking straight ahead means keeping God’s words in the midst of my heart, for they are life to those who find them and health to all their body. (Prov. 4: 21-22).

Life and health I need, because grief can overwhelm. I know I still have a job to do here. I’m in the process of figuring it out what exactly it is, but the one thing I know is that I need to keep His Word in the forefront of my days, and in the midst of my heart.

Proverbs 4: 25 – 27 says,

Let your eyes look directly ahead

And let your gaze be fixed straight in front of you. 

Watch the path of your feet

And all your ways will be established;

Do not turn to the right nor to the left; 

Turn your foot from evil. 

Looking straight ahead keeps us on the path God has established for us. To watch the path, to follow His ways, we can’t make a wrong turn.

He tells us in Proverbs 3:21-23 that if we

Keep sound wisdom & discretion, 

They will be life to your soul

And adornment to your neck. 

Then you will walk in your way securely

And your foot will not stumble. 

When you lie down, you will not be afraid;

When you lie down, your sleep will be sweet. 

I’m writing this at 1:20 in the morning. I was not able to have sweet sleep tonight, and felt a pull to come and open my Bible, since I hadn’t this morning. This post is the result. When I’m walking in the way, my feet stay on the path of their own, His own, I should say, and I have a serenity I can’t explain. When I step off the path, I have rocky days, I stumble, I fall, I can’t sleep.

Keep the path. Look ahead, straight ahead. Eternity is not that far away. Make each day count, because you never know when will be the last day you have with someone you love. Make each day count for eternity’s sake.

Keep your eyes lifted to Him, straight ahead, to His heart.

Shira

 

 

As I wrote this post, my iTunes  was playing in the background. Somehow it was left on from when the kids were watching apple tv this afternoon. I couldn’t figure out how to turn it off, so I just left it playing. As I was typing Proverbs 4:25-27, this song began to play… Amy Grant, Straight Ahead

Straight ahead, I can see your light

Straight ahead, through the dark

Straight ahead, there’s no left or right

Straight ahead, to Your heart. 

Straight ahead. 

I think this is something God wants me to say!

 

 

A new vision of the son who went ahead…

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Shira

 

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

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

Without 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

 

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

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. 

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, 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.

5 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.” 6 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. 7 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?

8 “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. 2 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.

3 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. 4 And they will see his face, and his name will be written on their foreheads. 5 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

 

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.

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.

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.

We 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.

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.

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.

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.

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.

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.

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.

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.

I 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 6^th 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

 

28 Days of Cayden: Day 1

I have been feeling led to blog more, and while pondering what I should write about, the first thing that came to mind is to really share Cayden’s story. Not the story of his death this time, but the story of his LIFE. His miraculous, much-too-short but oh-so-amazing life. 

So I am going to do my best to do a daily series this month, as time counts towards his birthday on the 28th. Cayden will be 11, and spending another birthday dancing in Heaven’s fields of grace, while we celebrate here on earth with oreo pudding pie and balloons in his honor.

My plan is to share a little bit each day about what Cayden’s specific needs and challenges were, to more fully explain what it was like to be his parent, his caregiver and his friend.

Cayden’s needs were expensive. There were many medical expenses from before he was born, until the time of his death. (Thank God for the blessing of good health insurance).

Cayden’s needs were complex. His list of issues is so so long. Many of which are hard to read and harder to pronounce.

Cayden’s needs were time-consuming… almost all-consuming… in a way that parents of typical children just cannot begin to fathom.

Cayden’s needs were simple. He asked for very little besides love and attention, gentle caregiving, and he was usually happy and content unless he was in pain.

Cayden’s needs were what Cayden needed. NO more, no less. Just as any parent would feed and bathe and clothe their child, we fed and bathed and clothed Cayden. It was just a longer and more complicated process because he couldn’t sit up, couldn’t hold a spoon, couldn’t tell us what was going on with words. But we did our best to give him what he needed on a daily basis, just as we do with our other kids.

People often said “I don’t know how you do/did it.” Well, neither do I. We just woke up each morning and did what needed to be done. I worked on researching one of Cayden’s issues at a time, whatever was the most pressing, and tried my best to figure out what to do to make improve his life in that area. I just loved my child, I wanted the best for him, and I did what I could to make things easier for him and for us as a family.

I’d like to say I prayed daily for strength and wisdom, but I didn’t. I often didn’t have time or energy to be dedicated to prayer or bible study. But we did lean on Him, lean on each other and our faith community when things were hard. We were faithfully attending church, daytime and evening Bible studies and many of those lessons learned then pulled me through those first few years like nothing else could.

One of those lessons was learning this passage by heart, holding it so close it could not get away. It answered the questions we didn’t dare ask.

God knew exactly how Cayden was formed without needing an ultrasound device. How amazing is that?!!

Psalm 139:13-16 (from The Message) tells us: 

Oh yes, you shaped me first inside, then out;

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. 

Cayden was made by God, and for God. He was made exactly the way God planned. From his conception to his death, his days were numbered and prepared. God knew him inside and out, it took us a while longer to figure out all the details of his magnificent little one-of-a-kind body. But as we got to know him, we learned more and more about just how marvelously made Cayden was!

Cayden was one-of-a-kind, his genetic make-up was unique. Not the regular “every person is unique,” unique, but the “this genetic translocation has never been recorded before” unique. He was a clean slate, with an unknown outcome.  The doctors really didn’t know what to tell us about his prognosis, so we just stopped asking. It didn’t matter anyway, we were going to love him no matter how long we had him.

This week I will share all about Cayden’s specific diagnoses. He had many… from his microcephalic head to his extra curled little 4th toes. Put them all together & you’ve got Cayden! Our sweet special firstborn son. Tune in tomorrow for more about Cayden’s unique little magnificent brain!

See you tomorrow!

Shira

Perseverance brings HoPE!

I’m a little behind for Holoprosencephaly awareness week, so I share this image today. These kids are rare, special & interesting.

Cayden had MIH-V variant of HPE in which he had very little frontal lobe (the part of the brain that gives us cognizant thoughts). In his case, it also meant he was missing most of his corpus callosum (which allows the sides of his brain to talk to each other, making physical movement very hard to coordinate). We were told he would never be able to comprehend anything, including the thought that we were his parents (a vegetable they actually said). Yet he was always alert, aware & on par intellectually, EVEN though he was profoundly deaf & had cortical visual impairments & was considered legally blind until age 2.

One of C’s masterpieces

He understood sign language, spoken words & the fact that he was different & that he didn’t like that. He colored, drew, did schoolwork & more therapy than a kid should have to endure. He was a miracle & a blessing & I miss him immensely, even 6 years after his death.

He was the essence of perseverance, which (as we discussed in church today) brings HoPE. Hope in the resurrection, through Christ, and hope for the future. And as I see it, HoPE for an eternity I can spend with ALL my children, those with me now, those I have yet to meet, & my sweet Cayden who I will see & hold again someday.

He was my living example for this verse, and I know how true it is for me and our family.

Romans 5: 3-9

And we rejoice in the HoPE of the glory of God. 

3 Not only so, but we also rejoice in our SUFFERINGS, 

because we know that SUFFERING produces PERSEVERANCE; 

4 PERSEVERANCE, character;

and character, HoPE. 

5 And HoPE does not disappoint us, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

6 You see, at just the right time… While we were still sinners, Christ died for us.

Christ’s death and resurrection promises us eternal life, if only we believe. And why not believe, if it means an eternity to spend not only with Christ, worshipping and glorifying him, but an eternity to love those who have gone before us to Heaven. Who we will see made perfect in Christ.

Holoprosencephaly, by its very nature, (and in its very name!), gives children and their parents struggles. It is inevitable. It is a challenge and a blessing all the same. It creates perseverance in us as parents, to push through the sleepless nights, the doctor’s visits, the hospital stays. It creates perseverance in the children to push through the pokes, and prods and difficulty walking, talking, eating, and sometimes even breathing. It causes suffering in the all-too-common early loss of these precious children. That suffering creates character, and as a result HoPE blooms eternal.

As Cayden’s parents, we chose HoPE when the prenatal diagnosis was grim. We chose HoPE, that a cochlear implant would bring hearing. We chose HoPE that Cayden would talk and run and learn, even with his tiny frontal lobe and MIH-V HPE. And even in his death, we choose HoPE that we will have a glorious reunion with our firstborn son someday soon.

Remembering Cayden’s Last Day

It was five years ago today that I was blessed to spend my last day with Cayden. I never imagined it would be his last, because it truly was one of his best days. It is hard for me to fully re-imagine it now, but it was just a normal day.

Cayden had finally become more ‘verbal’ with his communication device, and that day he was actually able to tell me what he wanted to eat for each meal using his ECO-13. Not only had his communication recently taken a dramatic step forward, but his eating had too. So his meal selections were unusual for him. Rice Krispies in milk for breakfast, macaroni and cheese for lunch and chicken nuggets for dinner.

This menu alone was absolutely amazing! Parents of typical kids just can’t understand what a milestone this was.

Cayden had struggled to eat since his birth. It was a slow and tedious process. When he was a newborn, it would take him over 45 minutes to finish a bottle. I would feed him, change & let him sleep for a bit, then go pump for 30 minutes. I’d get about an hour break, and do it all again. It was a tiresome, tedious process when he needed to eat every 3 hours. This lasted for quite some time until he started to eat pureed baby foods.

Cayden never became a fast eater. At 4 years old, he would need to eat 5 small meals a day, rather than 3 big ones, or he would vomit most of the meal back up. We spent a lot of time preparing his food and making sure he got enough in! Pureed foods were his staple for years, since chewing and swallowing was so hard for him to coordinate, as a result of his brain malformation.

So for almost a year preceding his death, we had been driving to Charlotte 2x a week  for a specialized intensive feeding therapy called Vital-Stim. This was electronic stimulation of his throat and cheek muscles, trying to train them to be stronger and safer. In mid-December, Cayden had finally gotten a clean swallow study, and was cleared to eat all soft foods. This was amazing. He was so excited to finally be able to eat most things (casseroles, soups, potatoes, pasta) and to not cough and gag with each bite. And it was a great thing for our family to be able to eat a meal together and not have to prepare special food just for him.

So on his last day, we celebrated a big milestone. Cayden’s communication was good enough for him to tell me what he wanted, and he could eat it safely. It was actually the first time he had eaten chicken nuggets and french fries for dinner. I sometimes joke that he said to himself  after dinner, “I can die happy, I ate chicken nuggets for dinner!” It really was a day of celebration!

In addition to his recent burst of communication and eating progress, Cayden was also making strides in his mobility. He was getting much better at driving his power chair, and I had just that week told him that in a few weeks, we would probably let him drive his chair in the house.

            We had been practicing outside on the driveway, so he could learn to steer his chair better. It was a used power chair we had found on the internet, and it was not custom for him, but it worked to see that he was indeed, going to be able to figure that out. The equipment techs really didn’t see just how smart Cayden was, and doubted that he could see well enough, and be coordinated enough to drive straight, stop and start on command (the criteria for getting approved for a power chair).  We were working towards those goals, with a little difficulty. It was not that he couldn’t obey the commands, but that he didn’t WANT to obey them! He had finally found his legs/wheels, and wanted to feel the wind in his curly hair! Cayden drove that chair full speed ahead whenever he got into it. He didn’t want to go slow and stop. He wanted to MOVE!

And I couldn’t blame him. For a boy whose legs didn’t work at all, the chance to be mobile on his own was empowering. I will never forget the giggles and fun we had that week in January when he started really driving that chair. It was a beautiful sound for a momma’s heart.

I’m sure there are more milestones he met that month, it really was a good month for us all. Hope was re-ignited in our hearts for Cayden’s future, and so it made his death all the more shocking and heartbreaking.

But I have a thankful heart for the last part of the story. That evening my parents watched the kids, as Joey and I had plans. They put the kids to bed and read them a Bible story, as was the tradition. The story chosen that night was the story of the paralyzed man, whose friends brought him to Jesus. Jesus told him to pick up his mat and walk, and he did.

The plain fact that this was the last story Cayden heard in his earthly life, tells me enough. I know in my heart that Cayden prayed that night to ask Jesus to heal him, and to let him truly walk, just like the man in the story. And I know that Jesus answered that prayer, and called Cayden to walk, not here on earth, but in Heaven, at His side.

Cayden was healed. He is now whole. He is walking the streets of gold, enjoying the songs of angels and dancing in fields of grace whenever he can. As the song says “He traded his sickness, he traded his pain, he’s laid it all down, for the Joy of the Lord. “

I miss you terribly Mr. C. I miss seeing your progress, and watching you grin when you learned a new skill. I miss your spirit… how sweet and loving it was, how joyous, even with your trials, and how patient you were for everything. You were so determined to just be a normal kid.

I love you Cayden, and I can’t wait to see you again. I know you will joyously greet me in Heaven, saying “Mom! Mom! Come here, I’ve GOT to show you something!” and you grab my hand, leading me down that street of gold to show me all around the place you (and I) now call our eternal home.

Shira

We have empty chairs, and that’s okay…

At church last night we were given the opportunity to light a candle in Honor of our Loved Ones, basically telling us we should be having a hard time with grief this season. Then church this morning was about how God is good and faithful, even in tough times. Thus a simple statement from me, trying to summarize my emotions and thoughts in response.

I love my kids, the ones here and the ones not. I miss them. I know I will see them and share eternity with them. With that clear truth in mind, is it bad to enjoy the time I have here with those He has left in my care, without guilt and without tears?  Yes, I wish we had them here, but God knows what He is doing. I have faith in that. He is good all the time, all the time He is good.

Here is the thing…Christmas is NO easier or harder than ANY day spent without our loved ones. That is the truth.
EVERY day is hard, because every day we remember the simple fact that their chair at the table is empty. Every single day.

I don’t begrudge people their happy healthy kids or big families. I’m happy that they are happy. I’m just a tiny bit jealous, that their happy reality is not MY life.

But don’t quit being happy because I am sometimes sad. That is not my point. Be happy, I am happy. I am happy because of the Hope that begins at Christmas with Christ’s birth. That Hope is fulfilled in His death at Easter. Where Hope becomes Faith in a resurrected body that will become eternal through Christ.

I am happy with my life, most of the time. I just have empty chairs at my table that will one day be filled. I’ll see my children again, those blonde curls, those shining blue eyes & they will be all the more perfect in Heaven.

Life is not for the here & now but for the eternal. Without the birth of our Savior, there would be no death. Without His death, there could be no resurrection. Without resurrection, there can be no eternal life.

Read more in John 3:16-18 (MSG)

“This is how much God loved the world: He gave his Son, his one and only Son. And this is why: so that no one need be destroyed; by believing in him, anyone can have a whole and lasting life.”

There was a plan. There IS a plan, that is still being enacted. We should all have the faith that it WILL work out. Someday we’ll see the reasons why, until then, I choose happiness for myself and for my family, and for yours too, knowing God loves the world, and He loves all of us in it too.

Merry Christmas, friends! God bless us everyone!