Jan 28, 2009

A Wink From Heaven

A compilation of thoughts written by April Moody from the blog Wink From Heaven, which is about her son Caleb...

"If, therefore, thine eye be single, thy whole body shall be full of light." ~Matthew 6:22

I remember the night I found out that our baby Caleb had significant problems. We were faced with the unbearable possibility that our baby might not be born alive. During our first glimpses of him we were filled with worry and deeper heartache than I had ever felt before. The next day I remember telling my mom, "this isn't how I imagined my family picture." I didn't imagine hanging a family picture on my wall that had someone missing. I also hadn't pictured a child whose time may be limited and whose challenges would be severe. It wasn't that I didn't want a disabled child. I wanted Caleb more than anything in the world. I had the opportunity to voice how much we wanted Caleb in many of those early doctor appointments when they presented our options. I pleaded with Heavenly Father for the opportunity to take care of our baby no matter how big his challenges were. We wanted Caleb with all of our hearts, his circumstances just weren't what I had pictured.

I remember that phrase, 'This isn't how I imagined my family picture' every time I put a new photograph in a frame, add a picture to a scrap book, or hang a portrait on my wall. My heart is filled with so much gratitude every time I look at my sweet little family inside those frames. It wasn't what I had pictured, and it is so much sweeter than I could ever have imagined. I would never have pictured how proud I would feel of Caleb for his courage, faith and patience. I never pictured how full my heart would feel as I watch my other little boys lovingly watch over him. I never pictured how my sweet little boy, whose time may be limited and whose challenges are severe, would touch the deepest parts of our hearts and change our lives forever. Just yesterday Matthew told me, 'I just get such a big loving feeling inside whenever I'm around Caleb- and I just have to hug him!'

I took our little family into the studio for some last minute pictures before Caleb went in for surgery [last November]. The pictures aren't fancy, but nothing could be more beautiful to me. I would never have pictured the exquisite delight I would feel in hanging photographs of theses precious souls on my wall...

When I was pregnant with Caleb, we were so excited to find out what we were having for our third child, so our kind friend offered to do an early ultra sound so that we could meet our new little family member! As we were driving to the clinic, I started to feel extremely uneasy. I asked my friend if he would tell us if anything was wrong. He reassured us that he would and that he would probably say something like, "we'll need to talk to a doctor about this."

As soon as the ultra sound began, our first glimpse was of our baby's' head. I immediately asked "is it supposed to look like that?" Instead of seeing any brain tissue, it was completely black. Our friend said, "We'll need to talk to a doctor about this..."

I started to cry and tried to focus on other information he gave us-- we were having a BOY!!! We were counciled to set up appointments with doctors and specialists so that we could learn more about our special little guy. Our hearts were heavy that night as we worried about our new little boy and the challenges that were likely ahead.

Within a few weeks we decided we wanted to name our little boy so that we could pray for him by name. We named him Caleb Joseph! Caleb was a righteous Israelite in the Old Testament who was always faithful and was known for his fearlessness in the face of overwhelming odds.

October 2004:

Dear Caleb, you are not going to be born for another 3 months, but you are such a special part of our family already. You have such a strong and compassionate spirit. I have felt so close to you during this time as we have been uncertain about what your birth will bring. About a month and a half ago, we discovered that you have a great amount of fluid in your brain. Our hearts have been so tender as we contemplate the possibility of only having you for a short time. Our hearts ache knowing that you may have significant problems throughout your life.

In the midst of the uncertainty, there are some things I know for sure. I know that you are my son for eternity. I know that you have an important role to play in our family and that we are privileged to be a part of it. I know that you love us and that you are aware of the deep love we have for you. I know that the Lord hears our prayers and sees our tears....Although I don't fully understand why you have physical hardships, I know that you have a valiant and loving spirit. I really feel you at times comforting me and that you want me to know everything will be okay....

This past week we had an MRI which confirmed the missing corpus collosum, a blockage causing excess fluid, and that you are missing your right eye. Getting that information broke my heart because I don't want you to have one more physical obstacle....I know that your spirit is not limited and that you have a special mission...I have seen hearts change just when people find out about you...

January 6, 2005:

Caleb was born at around 10:30 AM. His little cry was music to my ears! I got a quick glance before he was passed through a little window into the NICU. I got another glimpse of him as I was wheeled into my recovery room, and he was being prepared for transport to Primary Children's hospital. He was beautiful! In spite of the challenges I knew were ahead, I was just tickled so see my new little boy. His spirit is so big, and he just radiates with love.

Dear Caleb, you are here my precious boy! I am so full of love for you, my heart can't contain it all. I thought my heart would burst when I heard you cry after you were born. When they held you up for me to see, it was like looking at an angel! I knew today would be a life changing day for all of us - and it was. My life has been forever changed for the better because you are in it. I only got to see you for a few moments, but those moments will be treasured for my whole life.

January 7, 2005:

Dear Caleb, Today we spoke with your doctor and he explained many things to us. Your brain has not formed. It appears there is little they can do but stabilize you and prepare you to come home with us.... they don't expect you to live for more than a few weeks....at this moment I don't think my heart can bear the thought of letting you go. How can I look into that precious face knowing that my time is limited? I just want to stop this moment in time and hang on to it forever.... I wish I could choose the outcome, but I know your eternal outcome is already known. I pray that your spirit knows how much you are cherished. Each day I have with you is a treasured blessing....

This morning I got to hold you for the first time! It was like being in Heaven! I couldn't hold back the tears as I held your sweet body in my arms. I just rocked you back and forth and tried to memorize every bit of you. Your sweet spirit just seems to heal my soul. It saddens me so much to know that I may spend much of my life missing you. Do you know how dear you are to me?...Do you understand that the hardest thing I will ever do is let you go?

Today was your blessing day. We were able to gather in a hospice room with Dad and I, your grandparents, one of my aunts and our bishop.

Your blessing outfit was huge on you but you still looked like an angel....there was such a special spirit in the room and your Daddy gave you a beautiful blessing....Each of us had a chance to hold you. It was such a special afternoon. That night you weren't breathing very well and we thought you were going to be put on the ventilator again. We were told to be prepared to decide whether or not we would want to do that or just let you go. My heart was in agony as I contemplated letting you go before I was ready. Fortunately, the doctors were able to reposition you and get you breathing again.

...as I was alone in my hospital room that night I was overcome with sadness. I just can't bear the thought of losing you...I want you to know how much I treasure you and although I don't understand why things need to be this way, I know that the Lord knows our needs and will comfort my breaking heart...

January 13, 2005:

One of my favorite days was Tuesday. Our doctor let Dallan, the boys and I take Caleb into a hospice room, and Josh and Matthew were able to see Caleb for the first time!

Normally no children under age 18 are allowed, but our sweet doctor has been so kind to consider the needs of our little family during this time. Josh and Matthew were so excited and I was so touched as I watched them hold and interact with their little brother. Josh was so tender with Caleb and just couldn't stop hugging him and rubbing his face against Caleb's face. His little spirit was so full of Joy to be with his baby brother. He didn't want to put him down. Matthew was so excited not to be "the littlest" anymore and just loved holding Caleb! He couldn't wipe the smile off of his face, and he loved playing with Caleb's little fingers. The boys were able to hold and snuggle their baby for two whole hours. As parents, our hearts were so touched to have such a special time together, because even when he's home, Caleb will have to spend most of his time under an oxygen mask.

The past few days have been really full as we've been learning how to use all of the hospice equipment so that we can take care of Caleb at our home.... We are so excited to get to be near Caleb everyday! We know that even though we are overwhelmed with how we will be able to keep up with 24 hour care, our family is so blessed to have this little miracle in our lives.

Caleb was in the NICU at primary children's hospital for 8 days. He was so sweet and patient with all of us. He only needed a ventilator for a few days, then was able to breathe with supplemental oxygen. It became apparent to all of us that there was nothing more that could be done for him in the hospital, so we prepared to take him home.

It was overwhelming at first to bring Caleb home. We were surrounded by a host of hospice helpers, learned how to use a kangaroo pump, run the oxygen equipment, and tried to keep Caleb as comfortable as we could. We were counciled to pick out a burial spot, and we did. We worried if each day would be our last.... We had a birthday party for Caleb every week to celebrate his time with us, and we realized we wanted our time with Caleb to be JOYFUL. We decided not to let the medical community take our hope away. We decided that we could celebrate each day and have hope for the future instead of grieving.

January 18, 2005:

Josh loves to hold Caleb's hands and we often find him just quietly watching over him. Matty likes to sing Caleb the ABC's over and over again. We're trying not to look too far into the future and are just enjoying each day with our little miracle - even diaper changes are just sweet and fun!

Caleb has brought an overpowering spirit of love into our home. We feel so honored to be with him. Every time we change his diaper, rock him in the rocking chair, kiss his soft little cheeks, or even just stare at him through tear filled eyes -- we are reminded how much Heavenly Father must love us to bless us with this time with our little miracle. Our hearts are wrapped so tightly around our little baby. We are just so in love with him!

He responds so much to love

and as we hug him, sing to him, or stroke his little face - his oxygen levels and heart rate always seem to improve.

Caleb has taught us what perfect love feels like. I have watched the way people linger at his crib side and didn't want to leave his presence...

April 2008:

If I knew I had to say goodbye to any of my sweet boys, what words would I want them to hear from their mom? I've asked myself that question numerous times especially during tender times with Caleb. It seems like there should be a bigger way to say "I love you"- Where are right words to say that I love them so much that it takes my breath away- that I love them so much that sometimes it even hurts- that I love them so much that my heart wants to beat for them? I know that before they were born just the "hope" of them filled my heart with joy- that when I was expecting I loved knowing that they were growing right next to my heart- and now that they are here, my heart is wrapped so tightly around them that I can't breathe.

I took Caleb to the doctor today and spent the afternoon having chest x rays. He did aspirate and as a result has Pneumonia. He isn't moving air through his lungs very well. He is on a big dose of antibiotics and is in need of a lot of supplemental oxygen. My heart has been tender as I've wondered what I should say to Caleb today. How do I tell him how dear he is to me and how proud I am of him?

But then when I wrap my arms around him, and when I'm really still, I can feel his heart telling me that he knows- and that...

"I love you" is enough.

January 2009:

I have sweet moments with Caleb when I know that I live with an angel. Even when Caleb is so sick that he can hardly move...he still has a miraculous effect on people. During his last hospital stay, I was so touched by the visitors Caleb had...visitors from within the hospital. Many doctors, residents and nurses who have met Caleb before, would come by day after day to check on him, stand by his bed for a moment, and feel his sweet little spirit. Caleb couldn't walk or talk with them - He touched their hearts... and they felt it. I felt it. One told me she had never been so touched and inspired before. I know. Me too.

This last visit was 13 days long. Nine IV's later...and Caleb still shines. I live with an angel, whose feet have never left the ground.

My 2nd little boy, Matthew, would often tell us that Jesus peeked in our windows...I know that the Lord has kept a close watch on our little family as we have been on this journey together...

Caleb is currently 4 years old!

He continues to remind us to find JOY in our journey every day!
We aren't sure how much he can see out of his eye, but we know he responds to light. We are also unsure of his hearing abilities, but I see him respond to my voice, to music, and sometimes to loud sounds. Caleb has a trach to help him breath. He also has a shunt to help drain the fluid from his brain.

Caleb is currently on Phenobarbital (seizures), Levothyroxine (thyroid) Previcid (reflux) Baclofen (muscle relaxant) and atrovent (airway) We have had him on topamax, zantac, and erythromycin, but have since weaned him off of them. We also tried Helmet therapy to help with the shape of his skull, but decided it wasn't worth making him uncomfortable when only minimal results were expected. We have also opted not to have surgeries for his cleft palate at this time.

Caleb is a peaceful and patient little boy. His whole countenance shines! He loves to be LOVED. He loves it when I rub his feet, sing to him, and snuggle him. He is so patient with us and he is patient with the challenges he faces in his little body. Even when he has hard days with his respiratory system, seizures or feedings, his little spirit still shines through. He loves to be surrounded by his family and he loves to hear our voices. He also loves it when he is well enough to be outside to feel the sunshine on his face.

For Caleb, touch is largely how he experiences the world. I've helped him splash the water in the bath tub. I've put fall leaves in his hands and helped him crunch them. I've brought snow inside and helped him build a little snowman on a cookie sheet....I've wrapped his arms around my neck and held them there when we've needed a hug...I've put his hands on my cheeks and let them melt to my skin. He loves it when I rub his feet, rub my face in his hair, and rub his chubby tummy. Caleb loves to be touched!

Our biggest goal is to simply surround Caleb with our love...

We have a vision specialist/preschool teacher who visits him twice a week. I have a consult with a physical therapist and Occupational therapist once a month so that I can continue to keep his body stretched and comfortable. Overall, though, I know that Caleb grows and responds the most to LOVE! I know that he has a happy spirit and that he wants our time with him to be joyful!

We are so thankful for our little miracle. The overwhelming love we feel for him gives us just a glimpse of the way that our Heavenly Father loves us. The tenderness of knowing our time with him will be limited is also surrounded by so much sweetness. I wish there were a "heart language" that could portray the sweetness that surrounds us as we watch our 3 boys love each other, as we feel Caleb's sweet little body in our arms, and as we feel the love that has filled our home to overflowing.

My biggest sources of inspiration are prayer, other parents, the scriptures, and music.

Two of my favorites songs are:

"I Feel My Savior's Love"

and "Consider the Lillies."

The lyrics:
Consider the lilies of the field,
How they grow, how they grow.
Consider the birds in the sky,
How they fly, how they fly.

He clothes the lilies of the field.
He feeds the birds in the sky.
And He will feed those who trust Him,
And guide them with His eye.

Consider the sheep of His fold,
How they follow where He leads.
Though the path may wind across the mountains,
He knows the meadows where they feed.

He clothes the lilies of the field.
He feeds the birds in the sky,
And He will feed those who trust Him,
And guide them with His eye.

Consider the sweet, tender children
Who must suffer on this earth.
The pains of all of them He carried
From the day of His birth.

He clothes the lilies of the field,
He feeds the lambs in His fold,
And He will heal those who trust Him,
And make their hearts as gold.

Some talks that have recently inspired me are: The Ministry of Angels by Jeffrey R. Holland, Come What May, and Love It by Joseph B. Wirthlin, and The Infinite Power of Hope by Dieter F. Uchtdorf.

***Caleb is having surgery today to get a G-tube to help him eat, and a nissin to help with reflux. Please keep your thoughts and prayers with Caleb and his family. Visit their blog, Wink From Heaven, to send them well-wishes and to thank them for sharing their special story.


tam said...

What a beautiful family! I am so thankful that you could share their story! My kids would tell me that I was a special Mom and that Heavenly Father choose me to be their Mom! They always inspire me and bless my life beyond measure. Best wishes to Caleb my thoughts and prayers are with you and your family!
Have a wonderful Wednesday!~Smiles~Tam!

Devon said...

THank you so much for sharing this story. Caleb is beautiful!!!

Colleen said...

What a strong loving and beautiful family! Thank you for sharing their story!

Becky said...

I am privileged to call April my friend. She is an amazing woman with a remarkable son. You did a great job telling their story.

Lacey said...

What a sweet little boy, and such a fighter. Thanks for sharing him with us. We are praying for you

Amanda said...

He will be in my thoughts and prayers today!

Nana said...

What a sweet little angel!!

Tink said...

What an amazing story! What incredible people there are out there who give their whole life and soul and bring such love and joy to such sweet angels! Thanks for sharing!

rubberbandgirl said...

This is the first time I have ever visited your site. What a special place!
It also happens that I went to school with April. She was the nicest and most genuine of people...seems like nothing has changed.

TimsMomMom said...

What a special wonderful family! Thank you for finding them and sharing their story with us!

Jen said...

Thank you for sharing their story- their love and faith is truly inspirational. I put a post and prayer request on God's Shining Stars for Caleb.


Stephanie said...

Thanks so much for sharing this! Caleb and his wonderful family are very much in my prayers today. He looks like an angel...


Becky said...

What an incredible story. It really shows us how much our Heavenly Father loves each and every one of us and that there are some very special angels in this world.

WheresMyAngels said...

Oh mygosh, what a remarkable story. I love to hear stories of children that are defying the odds. He is so beautiful and perfect, as is the whole family.

Prayers that his surgery went well.

Kalei said...

Heres to Caleb. A lucky beautiful perfect child that has such wonderful brothers to look after him, a mother and father that show no lack of love and no lack of patience to handle the hard times ahead & would do anything for him. Finally, Cheers to all of Caleb's Supporters.

Karabeth said...

Scriptures tell us that God is a caring Father who looks upon His imperfect children (us) with love and compassion but it isn't until we ourselves are either afflicted or someone we love is that we gain any understanding of the love in God's heart.

Thank you for sharing Caleb's story. What a beautiful little boy. That adjective describes the rest of your family, too. :)

BPOTW said...

Such an amazing story and what a sweet boy. Happy 4th!!!

Rady Family said...

You mom, are an amazing gift to Caleb! As you know you are closer to the Savior because of him and what an amazing gift! Your pictures and stories are inspiring! Thank you for sharing and showing us true compassion!! I pray the Lord will continue to bless you and strengthen you through your journey!


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