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).
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. ❤