Monday, May 28, 2012

Rainbows and teardrops

I wish I returned to my blog with a funny post about raising a large family, but I don't. I return to tell you about a dear friend, a little boy, a lot of miracles, tear drops, and rainbows. There are many things I don't talk about, deep rooted fears, and struggles only a few can understand. I hope you take the time to read through this post and get to know my dear friend Megan and her beautiful angel Caleb through it.

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. 

Friday, March 2, 2012

Yeah, that's right, I got beat up by a two year old

Devony broke me! I knew better than to turn my head when holding a brick headed two year old, who had eaten enough sugar to put a horse on a high for a month, but I messed up. Here I was trying to be one of those there good mama's cuddling my little angel baby when she went into attack mode, the way two year old do. She flung herself back in a way to make any gymnastic champion proud and BAM I saw stars, literally.

As tears streamed down my face and I jumped up to grab an ice pack Devony sat on the floor looking so sad. WTH! I was the one hurt and now I felt guilty. She spoke quietly in her cute, squeaky voice saying, Mommy hurt? You otay? I assured her I was in fact otay, when in fact I was biting back another yelp of pain, swearing my face was broken.

So of course I have to call my friend to see if you can in fact have the bone under your eye broken and she assures me it would take more than Devony smacking me with her head, I think she under estimates the thickness of my children's skulls.

To add insult to injury (Again literally) Every time I blink or smile it hurts so bad I wanna cry again and if I say it hurts Devony again says you otay? Again I assure her I am. Does this count as lying? So I leave to go to Walmart with my husband, wearing gym pants with a formula stain on them (If you see me on people of walmart please let me know) and I notice people looking at my face and then at my husband, yeah I know what they are thinking. This big guy with a five inch long goatee just sucker punched me and now took me to Wally World to buy me one of those $5 DVD's to make it up to me. Maybe I should have listened to my friend when she said she'd stay in the house til it was gone if it was her.

I wish I could say this was the first child induced injury to me in my house, but alas it is not. I need bubble wrap size 8 stat!!!! Oh well at least I only have to go through the terrible twos one....wait maybe two more times.

Wednesday, February 29, 2012

What it's like to be rare

Today is Rare disease day, something close to my heart. Why, you may ask? I have at least two children and a husband effected by a very rare genetic condition. For years we had no idea why Janelle (Now five) was lagging so far behind her peers. I fought and searched for answers no one seemed to have, but I wouldn't give up.  I knew somewhere out there someone knew what caused her to have so many problems and I did find the answer in her chromosomes. Janelle has a rare genetic disorder called IDIC 15 ( I thought by having an answer I would be able to know what her future would be like, what her medical treatments should be, but sadly that's not the case, she is rare. So rare in fact all the answers are not there yet.

I often worry about the unknown. I want so badly to say okay this is what her future holds and she will end up with this condition or that condition. I wish I could just reach inside her sometimes and rip out that little bit of extra that has caused all of this or hold her in my arms and make it all go away, but I know that can't happen. There is no cure, there is no way to change what is.

People often say they understand, but unless they have had a child effected by a rare condition they don't. They have no idea what it's like to go from specialist to specialist and have more therapist than friends. They have no idea what it's like not to live from day to day, but appointment to appointment. Sure some have empathy, but they don't understand. They have no idea what it's like to have a five year old with the tendencies of a two year old. They have not a clue what it feels like to have your life revolve around numbers and letters most would view as alien code, but I can read like an FBI decoder. I don't get mad when people say they understand. I just smile and nod and know what they mean is I'm hear to listen.

When you have a child with a rare condition a lot of people leave your life. I'm sure they don't mean to, but they don't know how to handle the fact your life is all about that child now. I can't talk about the weather when my mind is on an MRI. I can't go out to lunch because we have a physical therapy appointment that day. I'm sure they get sick of hearing about duplication and deletions, but that is my life! That is what it's like to be rare. My life is nothing like my friends, even though some days I wish it was. I wish I could watch as my child did the things others do. I wish she could go places other children can. Heck, I wish she could fit into normal clothes!

There are a lot of tears when one deals with a rare condition. There have been days I have thrown a tantrum like a child and screamed it's not fair. There are nights tears just begin to flow down my face when I look at my children. It's not because I am sad they are effected, but frustrated I can't do more for them. I had dreams once when I was pregnant, dreams I have had to let go and it hurts, it hurts more than anyone could ever imagine, unless they too deal with that same loss.

There are amazing things that come out of being rare too. Lessons only these children can teach. I took for granted my older children's milestones. I have to really think about it to remember their first steps or words, but not Janelle's. I remember the first time she took a step. I even remember the first time she threw a fit. I have often wondered what a baby book would look like if it was designed for a child with a rare condition. Milestones like talking back and asking for a drink would be celebrated sometimes more so than the first tooth or when they crawled. Each milestone for Janelle is met with tears of excitement from me and an internal party because I always knew she could, even when doctors or therapist said she wouldn't.

When Mathew came along and showed signs he too had the same condition I wasn't as afraid, but I was angry. I was angry another child of mine would have to go through the things Janelle had. I was angry with the world that this could happen to me again, but then I looked at Janelle. I remembered she's my heart. She's the child everyone loves and is drawn to. She's the little girl that bases beauty on kindness and love. She's the child who sees people for who they are not what they look like or have. She is rare and beautiful and so is Mathew.

That's what it's like to have a child with a rare condition. It's scary, it's constant worry, it's ll the unknowns, but it's also beautiful, loving, and has shown me one thing beyond anything else, there is a God and He has truly blessed me!

Tuesday, February 28, 2012

90 days

90 days have passed since I posted last. Did you miss me? I wish I could say I disappeared for good reasons, but as usual life has an unexpected way of piling a lot on us all at once. I won't go into details of all that has happened. We'll just say family deaths, medical reasons, and a few other surprises. The biggest of which was the death of my grandmother. It caused a depression that crept up on me and lingered for a while. The fog is finally lifting now and I am able to return my life to the hectic, craziness I am so used to.

Some other big things have happened in 90 days. Janelle learned to talk back! This may be a milestone most parents would like to skip, but for Janelle it means her communication is getting better. I gladly accept the arm crossing, eye rolling, and arguing from her as it reminds me of all the hard work she and I put in to get her to this point. Someone please refer me back to this post when she is 15 please.

Sara's PTS (pre-teen syndrome) is starting to turn to a full blown case of TDSS (Teenage door slamming syndrome). She's lucky she's on honor roll and semi helpful or I'd have broken child labor laws and forced her into finding a **Gasp** job. Yeah, I'm one of those parents who believe in good work ethic someone quick call the labor board and turn me in, I make my kids do laundry and do dishes. If it helps we often have to scratch yesterdays dinner off the "clean" plates so they aren't working too hard.

My girls rooms walls are now plastered with the faces of teen stars with overly large smiles and boys who hair covers half their faces. Seriously, when did I become that parent asking why do kids dress and do their hair like that? I mean come on I was trapped in the suburban baggy cloths and flannel style of the 90's. I hear their music and ask what happened to good bands like Nirvana and Blink 182. At least I brainwashed the oldest into liking good music. It's a reprieve in the day from the I'm sexy and I know it type songs. Someone quick, buy me a wicker chair and hand me a glass of ice tea so I can sit on the porch and yell you blasted kids get off my lawn!

Yes, a lot has happened in 90 days. It's a long time and a lot of changes in a large family. Oh, and the biggest change of all won't be announced for a few more weeks, but it's a big one!