Last year I met Megan through a group for parents who have children with the same condition as mine, IDIC 15. I was drawn to Megan as her son Caleb had a few things they'd found on sonograms with my son Mathew. Mathew ended up being born okay. He has hypotonia and a few other minor things, Caleb was not. Caleb had IDIC 15, Dandy Walker, Hydrocephalus, visceral hyperalegesia, and many other things. Megan and I once said we'd wished we'd met in an airport randomly with our healthy children, rather than have met because our children were sick. Sadly, things in life rarely work out the way we wish they would have. Still, through it all I am thankful. I am thankful for the friendship Megan and I formed and I am thankful for the opportunity to get to know her amazing son Caleb. I'm going to get into Caleb's story now that I have given you a little background. Please bare with me as I am sure to shed more than a few tear drops while writing this.
Caleb was born April 28, 2011 ALIVE!! Miracle one happened, he was breathing. Doctors had told his mother to abort, but she wouldn't. She knew God had plans for this little guy. When they told her he would only live a few days she said watch this science and he continued to live. There were many scares in his first months. There were times it truly looked like Caleb's little life was over, but he fought on and so did Megan. She liked to joke Caleb just wanted to go back to the hospital and flirt with his nurses some more, I don't doubt he did. You could see so much in that little boys eyes and one of the biggest things was his joy for life and his playful spirit.
Megan had a facebook page for him called, Caleb's Cribb take that science and through that page she kept hundreds of people up to date on his daily achievements and asked for prayers when needed. The power of prayer is an amazing thing. I have no doubt God heard them and pulled that baby through many times when it seemed like all hope was gone. I think He knew we all needed Caleb as much as his family did. We needed to see those miracles and the hope that can only come from situations like Caleb's. Though Megan and I talked outside of the groups every morning I clicked onto Caleb's page to see what the little man was up to or to check his progress as he battled for life again. Caleb had become more than just a little boy somewhere in Flordia, he became all of the people who read about him daily's son. We loved him, prayed for him, and longed to see that next milestone and boy did he provide. Through his struggles he smiled, laughed, rolled over, formed bonds, and most of all taught the world that even someone so little could change the world.
For just a moment I want to tell you a little something about Megan, Caleb's mom. To understand Caleb's spirit one must know this wonderful woman's spirit. I always say Megan is the poster woman for it couldn't happen to a nicer person. She is so strong, even if she never really knew that. She brought a child into the world and fought for him daily. As long as there was life in him she would fight. Maybe that's part of the reason I chose today to write this, she is a soldier. Megan is one of those people when you meet them you know you'll be friends forever. She has a way of making people feel good about anything. Her love for her children radiated out and taught so many what life is and should be about. I don't know if Megan will ever understand the magnitude of love people from all over the world feel for her and her family, she is honestly the most amazing person I have ever known.
When she and I first started talking we knew our friendship was meant to be. We called the boys brothers from other mothers and dreamed of the day they would run across the beach together. Some may think that an odd dream when they said it would be a miracle if Caleb lived to see his first birthday. To us though, Caleb had already shown us many miracles just by surviving. This was our dream and we clung to it. Whenever Caleb was fighting to survive once more I'd send her dirty jokes and do my best to make her laugh, why, because that's what Megan wanted. She wanted to do what she knew Caleb wanted, smile. If there is one thing I hope Megan will always remember it's how much I love her and always will. When people question how a friendship like that can form without ever meeting a person face to face, well they say that because they have never met Megan.
Now back to Caleb. Caleb had a condition that cause him to go hypothermic so a whole group of us sent him hats when he was hospitalized for it, it wasn't long before the little fighter pulled through that scare. A few months later he had a fever so high they had to ice him, Megan said now I don't go sending me snow so guess what I did, I sent her snow. Once again Caleb pulled through. I will always treasure the pictures of her sons with handfuls of snow in Florida.Caleb showed us through these things tht no matter what life was worth living and fighting for no matter how hard it could get. As soon as he was feeling better he would poke out his tongue and smile the smile that lit up the whole room. It was like he was saying okay I was sick, but now it's time to play. Megan always said when you don't feel good just play. How could one not when that was proven by Caleb to be a cure all!
In March, a month before Caleb's miracle birthday he was once again in the hospital fighting. Things didn't look good. His hundreds of followers began to pray. We needed that birthday as much as Megan did. As always he pulled through and had that look on his face that said what, why were you all worried, look I'm fine.
On April 28th, 2012 Caleb celebrated the one thing all the doctors said would be a miracle and we were all along for the ride, he turned one! His birthday celebration included nearly a hundred people some the family had met some they had not. There were hugs and tears, but most of all fun and laughter. There was a cake with Caleb's favorite person, Elmo. The boy who couldn't eat smashed his cupcake and with one smile showed us all the face of heaven. He'd done it, he'd lived! I cried that day the way I did when I had given birth to my own children. As much as I'd longed to be with him for his party I knew I had been there with every ounce of my spirit.
May brought with it more challenges, Caleb was sick again. He had gone so quickly from celebrating to fighting. I guess so many of us hadn't expected it to happen. We'd seen him pull through so many times. Yet, on May 12. 2012 Caleb went to laugh in the clouds. I suppose God had given us all the greatest gift and that was a year with this amazing boy, but it still seemed so unfair. We wanted more, we wanted to see all the things people want to see in children. We wanted to watch him go off the school, grow up, get married, and live a long happy life, but God had other plans. He needed him too. Hey, someone has to paint the sky with rainbows.
I'm going to get personal here for a moment. When it was learned Caleb had passed on I wasn't home. I received a phone call from a mutual fiend who knew how much I loved Megan and her family. I don't remember what I said when she told me. I only remember saying I had to go and I sobbed. I sobbed for two days. I wondered what the right thing was to say to my dear friend Megan. I had no clue what the right thing was. I wanted to take away her pain, but knew I couldn't. I wanted to hug her, but knew the money wasn't here to get to her. All I could do was text her and say simply, I love you and I am with you. I have texted her everyday since with a similar message. Sometimes fewer words are more.
I hope Megan won't mind me sharing what she later said to everyone who had been following Caleb's story for so long. It's the only right way to end this blog post. Here are Caleb's moms words:
I know I do not have to tell you how sad I am. I don't need to mention that I feel as if I am barely breathing... you know.... I know you know....... So.... it has been a week.... and while he is everywhere and nowhere all at once... I know that Caleb would want us to celebrate him and to help one another heal..... so..... it was mentioned earlier today by a friend of mine that we should take his lessons.... live them.... and then share when we see him, feel him or listen to his words.... I am asking you to do this for me, for you, but most especially for Caleb and God.... in praise and thanksgiving for the person, the soul... the INCREDIBLE GIFT that he was..... ♥ He lived a year..... I would like to keep the Cribb open until next year on May 12 sharing the wondrous things that Caleb has taught..... (see his eulogy for reminders) ♥ Feel free to start a new thread at any time.... and post..... I will be.... His light is too bright and beautiful to go out....
And now Caleb's words:
Caleb came
into this world with a twinkle in his eye, a giggle in his voice and a smile on
his face. Some people may have seen him
as an incredibly broken child with a world of handicaps, but for those of us
who knew him, we only saw God, light, and the promise of another world.
Michael and
I have pondered what on earth we could say to you about our sweet boy. He has touched so many lives, And no matter
how hard we tried, we came up empty with words . There was nothing we could say
that would adequately sum up who Caleb is.
Then a voice came from the depths of both of our hearts and we knew….
Caleb, it was Caleb who had something to say all along. So pause with us as we share what Caleb has taught
us.
·
The
Sun is bright. So, close your eyes and squint tight, and allow the light to
warm your soul.
·
The
wind is funny. When it sweeps across
your face, it tickles, so every chance you can… enjoy it.
·
Hair.
It’s meant to be played with.
·
Faces
are meant to be touched.
·
Smiles
are contagious. Give it a try.
·
Eyes
are really windows to the soul.
·
Mouths
are interesting…especially, Elmo’s.
·
Shaking
your head no, with a great big smile can cause laughter.
·
Sometimes
when you are face down, a little cry can get some help.
·
Life
does not have to be long to be perfect.
·
Surprises
are around every corner.
·
Generosity
is abounding.
·
New
friends are always waiting to be made.
·
Family
is everything…and sometimes family is so much more than just blood.
·
Balloons:
fun to look at but even better to play with
·
Live
life on purpose.
·
Do
things with meaning.
·
Hospice
is NOT an evil word. People who work
there are ANGELS.
·
Wake
up each day ready to welcome the beauty
·
Tubes,
machines, cords… they all look scary… but brothers never see them.
·
Kisses
are best given with the tongue in the air.
·
You
can really turn a building of cement, filled with strangers and procedural
rooms into a warm, healing sanctuary where families grow bigger.
·
Laugh.
Long. And hard. And as often as possible.
·
Play.
Play. PLAY. And it you don’t feel good… play some more.
·
When
all else fails …… (gesture) this really does work.
·
Mommy’s
are soft, Daddy’s are silly, brothers are best when noisy and boisterous.
·
Nothing
beats a good cuddle.
·
A
diagnosis is NOT who you are.
·
And
a diagnosis should NOT stop your life….go… do….. enjoy.
·
Just
because it could be a short life does not mean that it was not everything that
God intended for it to be.
·
Love
is so easy. Really. It is.
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