Tag Archives: blogging

The Power of Community in Blogging

In the past few days, I’ve witnessed something truly amazing in light of probably one of the most horrific stories I’ve read to date.  I recently started following Chasing Rainbows after seeing her blog nominated for Parent’s Magazine’s mommy blogger awards.  Her son is also undiagnosed, so I felt an immediate connection.  As I read through her pages and her posts, her writing really drew me in, and I’ve been following ever since. Her blog was nominated for the “Blog Most Likely to Have You Reaching for the Tissues,” and trust me, you’ll want to have tissues (an entire box) handy when you head over there to read her last few posts.

On Wednesday, I noticed a facebook update from Kate (Author of Chasing Rainbows) that said her son, Gavin, was being airlifted to the hospital because he stopped breathing. My heart fell.  Many families of children with special needs spend far too much time in the hospital due to their child’s illness.  I said a prayer for her and hoped everything would be okay and followed closely for more updates.  Fortunately, for us, Braxton *knock on wood* hasn’t given us too many scares.  The last time he did, he had a 4 day hospital stay due to pneumonia and just that short time was extremely difficult for me.  Watching him literally turn blue and being put on Oxygen is something I never want to see again, but that doesn’t even begin to compare to what Kate is going through.

Late Wednesday, errrr early Thursday actually, Kate updated her blog with this post. She had throughout the day posted updates on her son that he had suffered multiple cardiac arrests and was in critical condition.  After reading her post, I could barely breathe.  The day started out with Gavin waking up with terrible allergies. As their morning progressed, Gavin worsened very quickly.  By the time she got him to the local ER he had had a seizure and gone in to cardiac arrest.  They got him “stable” enough to airlift him to a better equipped hospital. I was baffled.  Allergies.  Something we all deal with. Something Braxton himself struggles with.  Poor kid is always so congested.  He is also undiagnosed, just like Gavin.  Although Braxton doesn’t share all of Gavin’s symptoms, in my heart, I feel like this could have been my kid. It could have been any of our kids.  Syndromes, both diagnosed and undiagnosed, compromise a child’s ability to fight off infection the same way a “typical” child can, but for the undiagnosed child it’s even more difficult because doctors don’t know how to help the child.  Some children with particular syndromes respond better to different treatments…sometimes there is not a “one treatment fits all cure” for illnesses, it very much depends on the child’s system as to what will work.  Not knowing the full story on a child makes it extremely difficult to ensure proper treatment.  This is one of those realities that I try so hard not to think about, but I know it’s something that could happen.

Read through each of the posts on her blog for the full story, but sadly, Gavin was pronounced brain dead earlier this evening and Kate and her husband had already made the decision to pull him off life support if that were the case (brain dead) and donate his organs to help other children in need.  The strength and grace with which Kate has been able to write through this tragedy completely baffles me.  With every post, I have heart wrenching sobs, and I want it all to not be true.  This woman has already suffered so much in her life after multiple miscarriages and the birth of her daughter at 5 1/2 months only to lose her shortly after, and now this.  But still, her faith, her courage, her strength….it defies all odds.

The amazing thing from all of this, is the power of community in blogging.  I found her blog the same way I do many others. I seek out the information, read other peoples posts, read the comments, follow the links to the blogs, bookmark them, check in on them every so often, ‘like’ them on Facebook…the same as many others do.  Many of us who blog, write without holding back.  Our entire heart and soul is all there on the screen for you to read.  I feel like I really know so many complete strangers because of their writing.  When they hurt, I hurt for them too, when they are happy, I celebrate too…the community is truly amazing.  The past few days I have really witnessed this from Kate’s story.  I first saw another popular special needs blogger, from Love That Max, share Kate’s update and offer her prayers.  Then I noticed several other bloggers I follow on Facebook also share her updates.  With every share, Kate gained new followers, new readers, new prayers…I saw her facebook ‘likes’ go from under a thousand to over 6,000 in just days.  All of these people whom she’d never met, were pulling for Gavin, praying for a miracle, praying for her strength, praying for his little brother.  We’re all right there with her, and although we can’t even begin to fathom the pain Kate is going through first hand, we are all heartbroken for her yet have hearts full of joy that Gavin is now set free.  Kate said it best,

Today has truly been the worst day of our lives.  But it’s also been an unexpected gift. Our beautiful first born son was set free.  Now he can talk.  He can run.  He is healed.

To have that clarity, completely astounds me.  I’m not sure I could think that if it were me.  Losing my son without answers is one of the things that terrifies me.  But it’s true, all the things he couldn’t do here on Earth, he can now do in “Heaven’s House” (as Brian, Gavin’s little brother calls it).

Kate, Gavin and her husband, Ed. May the Lord continue to bring you strength and peace through the unthinkable. Thank you for sharing your son with us...  Image from Chasing Rainbows

Kate, Gavin and her husband, Ed. May the Lord continue to bring you strength and peace through the unthinkable. Thank you for sharing your son with us…
Image from Chasing Rainbows

The blogging community (and thousands around the world) pulled together for Kate in her hour of need and will continue as her family grieves and heals from this loss.  It is through this tragedy I’ve learned how connected we all are. I’ve realized the gift I have through writing.  I don’t write to become famous. I really don’t. I don’t write for pity. I write for my own therapy.  My own way of expressing myself in a way I never thought I could.  If any one person comes across my blog and through my writing can be inspired or given hope along their own journey, then that’s truly a gift to me.  As a community, we have the power to lift others, to help them along their journey by sharing on our own, and the ability to share others’ stories in their time of need.  In spite of this tragedy, I’m thankful to belong to such a community.

Tonight, I held my children a little longer as I put them to bed.  Kissed their cheeks and told them how much I loved them, because tomorrow is never promised.  I thanked God that despite our own struggles, our children are doing well. And I prayed for Kate & her husband, and the countless other parents who won’t get to kiss their kids goodnight tonight.

May you rest in peace, sweet Gavin, and know that your story lives on and continues to inspire us all. ❤


Filed under Family, Kids and Family, Life, Special Needs Child

Farewell 2012!

I cannot believe another year is coming to a close! I seriously think once you have kids it’s like someone presses fast forward on your life.  We’ve also been so busy this year it’s no wonder I have no idea where the time has gone.  Braxton has come so far this year and we’re so excited to see what 2013 has in store for him.  Cruising? Walking? Talking?? Eating?! All of the above??! Only time will tell.  Braxton is doing so well and doing everything in his own time.  With every milestone, we celebrate with him and everyday I’m amazed to witness all that he’s accomplished.

Noteworthy Accomplishments:

  • Oral Feeding – Before we ran into issues, Braxton was able to drink 4-5 ounces from a bottle and eating 4 oz of pureed foods 3 times a day!! We were fairly certain he’d have his G-Tube out by the end of the year…unfortunately, he had a major regression and stopped taking anything orally.  He’s making some progress now and we’re hopeful we can get him back here.
  • Rolling Over – Braxton was about 9 months (March 2012) when he was finally able to roll over from front to back and back to front.
  • Unassisted Sitting – Braxton was finally able to sit up on his own without assistance (pillow, boppy, mommy etc) at about 10 months (April 2012) he was a little wobbly for a while, but by May he had it down pretty well.
  • Up on All Fours – It wasn’t too long after rolling that Braxton started pulling himself up on all fours and rocking getting ready to crawl (even though actual crawling came much later)
  • Getting from a sit to crawling position – Braxton mastered this at about 13 months (July 2012) and was able to get himself from sitting down to his belly and up on all fours getting ready to crawl.
  • Pivoting from all fours – Once Brax was able to get up on all fours he wasn’t able to crawl, but he learned to pivot himself around to get where he wanted to go
  • Scooting Backward – Backward movement is important developmentally, and we were so excited to watch Braxton finally be able to scoot himself backward to get where he wanted to go. He’d scoot a little, sit up, get down and scoot some more until he got where he wanted to go.
  • Crawling – And finally, at 15 months Braxton started crawling.  He is all over the place now!
  • Kneeling – Now that Braxton can crawl he can get himself to a kneeling position to play with toys and back down to crawl to the next toy
  • Pull to stand – Braxton is now pulling up to a standing position on toys and furniture! Getting back down is still a little scary, but he’s getting better.  It won’t be long before he’s cruising along the furniture and then running away from us!
  • FIRST BIRTHDAY! – Braxton turned ONE June 24, 2012 – amazing in and of itself. He wasn’t supposed to make it home from the hospital, so to see ONE was a true blessing. As is every day he is here with us.

Medical Stats: 

  • I wish I’d kept better count, but we’ve had about 3-4 specialist appointments every month this year. Looking at our calendar this year I count about 48 appointments with specialists. [Feels like we were in the pediatrician’s office every 2 weeks due to Braxton’s congestion, so that adds quite a bit]
  • Therapy – I think starting at the beginning of this year we were up to 2 visits weekly for Speech and Physical therapy.  We started Occupational Therapy in August, adding another 2 weekly therapy visits.  That’s 6 therapy sessions per week for Braxton.  Thankfully, we have in-home therapy sessions, so we weren’t driving all over town for therapy.  We also had Vision therapy through the school district that came out twice a month.  She brought out Orientation and mobility services twice a month as well.
  • Next year, I’ll actually tally everything up…this year, I just know it’s been a lot!
  • Braxton had to go under anesthesia twice this year, once in April to have his ear tubes placed and probing & irrigation of his tear ducts.  An ABR to test hearing was also done at this time.  In May, he had a light anesthesia to have the ABR repeated since the first one was not accurate due to fluid draining from his ear.  The second time was in August when he had his hand surgery and another ABR to confirm his hearing results.

So, I started this blog on August 19th this year and we’ve had about 8,700 views in just 4 short months! You guys are awesome for visiting and reading and taking this journey with us!! WordPress put together an awesome little stats page for me to share with you and you can see that below.

Some of my personal favorite posts are:

Some of YOUR favorite posts were: [based on most page views and not listed above]

Some of my favorite pics this year: 🙂 

Stats from WordPress

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

600 people reached the top of Mt. Everest in 2012. This blog got about 8,700 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 15 years to get that many views.

Click here to see the complete report.



Filed under Family, Kids and Family, Life, Special Needs Child