So Much More

Have I ever told you about the hiatus I took from life when we first found out Chloe had brain damage? Of course I haven't. I don't even think I've told my husband about what went on during those monumental days, so why would I share it on a public blog for all to read? Oh well, here I go....

You may have read Chloe's story. We found out in the ER that Chloe had brain damage and many tests would follow. I was working full-time back then (wow, life really does come full circle, eh?) so I immediately called in "sick." I told them my leave was indefinite, so I filed for FMLA and planned on at least taking two weeks so I had time to get to all the appointments that suddenly filled my calendar.

Time. I suddenly had time that I wasn't used to. Time to take in Chloe's goodness (hooray). Time to research the internet (oye). My search of the internet was so bittersweet. I wanted to understand and be informed about what was wrong with my baby and what could be wrong. I wanted to be prepared with questions so I could get answers. But all the information that kept coming up was doom and gloom about the prognosis of a child with the type of damage in Chloe's brain. It was good to armor myself with knowledge, but it was also very discouraging. So when I got feeling too depressed, I would take a break from all the medical websites and search uplifting/inspiring quotes. One stood out to me in particular:


Courage. That was what I needed. I knew it and I prayed for it because courage wasn't going to come easily to ME. My initial reaction was to think of all Chloe would miss out on and our family would miss out on because of the type of diagnosis I knew was forthcoming. Yet, when I read this quote, something inside of me whispered, 'If you have courage with Chloe's diagnosis, you won't miss out on anything; in fact, your life will be filled with so much more than you can now imagine.' Now, I have quite an imagination, so to think that there could be more in store for us than what I could dream possible..... Wow. And so this became my own personal motto as I soaked it all in.

When Chloe was born and I instinctively believed something to be wrong, that was hard. But to see the actual brain CT scan and know for sure that the road ahead was going to be filled with question marks and difficulties, wow. To read things online about short life spans, children who don't have a personality or smile, children who don't walk or talk.... I just wanted to curl my knees up to my chest and lay in the fetal position.

That's not what I did, though. I prayed for courage. Then I acted. It wasn't easy. It still isn't easy, but I pray, then I go and somehow the courage comes.

I first needed courage to face the doctors, to get answers, to start therapies, to allow Chloe to have tests done. Then it took courage to start a blog and start talking about things that were hard to talk about -- our unexpected life and all that went with it -- the good, the bad, and everything in between.

Then something occurred to me. I was sure others had probably been through something similar as what I went through when I first knew something was wrong with my daughter and started researching the internet. All those discouraging sites and cold, factual information about what life is like with a child who has special needs. And I realized I could do something about it. I could create a site where people who actually lived with a special child could share the positive and inspirational stuff, not just the discouraging stuff. The name came to me almost instantly, kidz -- like most kids, but just a little bit unique!

The thought overwhelmed me. This would take so much courage, more than I thought I had. I was scared to reach out to others and ask them to read my blog and participate in this concept. Believe it or not, shyness is my natural instinct, but with courage, I've learned to reach out. So I started searching blogs, trying to find all my special needs friends. There were more than I ever could have imagined and they gave me more than I knew was possible -- so much more! The more I searched the more I found that there were many amazing people, from all walks of life, living a life very similar to mine. It was comforting. Until then, I thought I was so alone and isolated. But to discover all these incredible people and their incredible stories and perspectives and never-give-up attitudes. Wow. I was so grateful that courage had led me down this path.

But then I thought that there were all these blogs out there about people with children who have special needs.... there didn't need to be a kidz blog. So I put it out of my mind (or tried to, anyway). But something kept nagging at me. It would not leave me alone. The kidz blog had to be.

And so I started it. It started small. It's been through ebbs and flows of popularity, getting many hits a day to only a handful. Initially, I was obsessive about it and it was top priority in my life, second only to Chloe and Oby. But then when I've been busy with things, I've put it on the back burner and even considered deleting the blog altogether a few times. But still, something always nags at me to keep going with it. To connect with people. To be courageous and keep reaching out. And every time I take a courageous step forward with the kidz blog, I get so much more than I was ever looking for.

The friendships I have made because of this blog truly defy description. I have been spiritually edified, my heart uplifted and my soul healed on more occasions than I could name. So often it seems a person shares a post on their blog that was written just for me in that moment and it gets me through. I initially thought I would start the kidz blog to do something good, but I never understood that it would give something so positive to me. I thought I could help other people, but they have helped me. It's been incredible.

Turns out the quote is right. Having courage truly has caused our lives to expand and has brought more blessings and joy than I could have imagined.

It has been quite a few months since we have received any volunteers to share their child's story. The format of kidz is to frequently share kidz stories, we'd like to do this once a week. Of course the blog runs without the kidz stories, but those stories are what infuse life, love, energy and greater purpose into the blog. I think of how much the first story I read about a child who had the same diagnosis as Chloe. It is, without question, the main thing that got me through those first months of shock and sorrow.

I believe that if you are willing to share your child's story, that you will touch the readers of this blog so much more than you could imagine -- and maybe it would help you as well. Please leave a comment or email me (kidzorg.blogspot@gmail.com) if you'd be willing to participate in any way.

We appreciate our readers and supporters so much. Thank you all!!!