With Heavy Heart

The last few weeks have been a little hard. I thought I'd start decorating for Christmas a little early this year. In all reality it takes me weeks just to decorate the Christmas tree as I can't just do it all in a day with tending to all of Noah's needs and watching over a very active little brother. So if I started in December the tree likely wouldn't go up until January! I was doing really well with it all until I stumbled on this silly bear that was stashed away in a rubbermaid container - it was a the build a-bear that Noah was gifted with in the NICU. All the children who were in the NICU during Christmas received a build-a-bear. I picked up that bear and it was like a lightening flash of emotions that just ripped through me. It's the pain that never goes away - you live with it each and everyday - you just tuck it away tight so you can keep going. And that darn bear was the key that just happened to unleash the flood gates of emotion and memory. It still smells of the NICU. That somewhat sterile baby smell. But it's not a comforting smell - not the smell of baby lotions and fresh blankets - it's a haunting smell. Yet it's apart of Noah's early story and I can't rid myself of him. So I stuffed him forcefully back into the container as if I was punishing him for the reminder of where we had been nearly four years ago. I went about decorating the tree - it's still a work-in-progress. It's still rather naked with only lights and ribbon - I hope to have it done around Thanksgiving. But I'm placing no expectations on myself given the boys are still recovering from illness and their daddy has now fallen ill with the same cold. Thankfully thus far I'm holding germ free and being able to care for everyone.

 I've been trying to keep myself busy to erase the fact that I found that bear. I was doing rather well, until I received the news yesterday that another little boy that we've grown to love over the years in our special needs community passed away very suddenly. Little Brayden was born with Hydranencephaly and has defied all odds since his birth. He also has a pretty amazing mother who not only was one of the strongest special needs mothers I know, but also started the Global Hydranencepahly Foundation in honor of Brayden and those like him. His mother created the Journey of the Bees: Believing in the impossible - with the motto: "Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know it so it goes on flying anyway."  She has been one of the most loving mothers I've had the pleasure of connecting with. Little Brayden was only six months older than Noah, and she was so kind in gifting us with Brayden's thumb splints that he didn't need anymore and mailed them to Noah. Of course learning of Brayden's passing sent me to a very difficult place. I cried on and off for hours for a little boy I never had the opportunity to meet in person, but one that touched my heart in more ways than I could ever tell you. You fall in love with their stories, their parents, their journey. You know it well - you know the pain, the joy, the love, the heartache and worry like no one else could until you experience it each and everyday with a child. You celebrate their small achievements and accomplishments and cheer them on. You comfort each other on the difficult days, and you pray hard for each and every one of them. So it's rather devastating when one flies home to Heaven. And of course people bombard you with a million God quotes and tell you it's all God's plan - and you're suppose to not question it, accept it as some divine plan that He has in store. But you can't help but wonder what this plan is - how can you take a precious life from the arms of a mother? How can you leave her in a million broken pieces trying so desperately to resuscitate her child and keep him here on this earth. I don't understand it. I want to, I try everyday to wrap my head around it all - to accept the life we've all been given - to find purpose in it. To find a reason for the struggle. But I still want to know why. I lack the ability to ever make it okay for Brayden's mom. I can't bring her the comfort of ever holding Brayden in her arms again. I want to. I want to make it all better for her - for all of us.

 Sometimes I wonder how different the world would be if everyone knew exactly what it was like to raise a special needs child; if they could feel it - truly appreciate the journey - it would be such a more thankful world, one in which people didn't argue about trivial things, they counted each breath they took as a blessing and gift, they wouldn't worry about the wrong creamer in their coffee, a date that had gone sour, a car that had broken down... you quickly learn the true meaning of "Real Love" and what truly matters.

Love,



Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.