If you have been following me on the Chasing Rainbows Facebook Page, you've been watching me share photos and memories of Gavin's life. I started the day he was born... and I'm up to his 3 1/2 year birthday. I'm not planning on stopping until I reach the day he died. I'm not sure how long it will take me - but I don't care. You should know, though, that it could take me a while! I took photos nearly every day of his life!!
I'm sure from the outside looking in, one might think I am a grieving Mom trying to share memories of my deceased son. This is true.
Maybe others might think that I want to ensure that Gavin is not forgotten. Well, this is also true.
One of the big reasons I'm sharing is to pass on all the things we learned along the way - ideas, tips, advice - in the hopes that it will help someone help the special needs child in their own lives.
But that's not all.
There is a bigger reason why I'm sharing Gavin's journey. And I think that, in doing so, I am helping fulfill his mission of spreading positivity, hope and inspiration.
I really don't think it was a coincidence that we were completely unprepared for a special needs child (there were no prenatal indicators)... and then completely unprepared for his death (which came as a shock to everyone - including doctors). I'm not sure we needed to know... or were even meant to know.
We all are here on this Earth for a reason. Each one of us. Some of us are lucky to know just what that reason is... and we make the most of it. And some of us trudge through life just surviving - and miss the point. Early on in Gavin's life, I felt like I understood his purpose - and it helped me understand my own. He had a message. And I was to be his messenger.
It all sounds so silly, I'm sure. He was a child. On top of that, he never spoke. How could I possibly know what his purpose in life was?! But it all just seemed so clear.
In my life leading up to becoming a Mother, I faced obstacle after obstacle. And, truly, I didn't handle them well. I turned to self abuse - eating disorders - and alcohol over the years. I even attempted suicide at one point. You can read more about my wild and wooly history HERE.
I got married and got myself together and we got pregnant. I really thought - all my troubles are over. I paid my dues in life and from now on it's smooth sailing. I have my 'stuff' together and we're going to have a beautiful life.
My pregnancy with Gavin was a bit rocky - but we didn't have any indicators that told us he'd have anything different or "wrong" with him. I had a moment in the NICU where I lost my mind - and truly thought I couldn't handle it - but something came over me that I can't explain. This baby needed us and we needed to just pull it together and adjust. I don't think people talk about these feelings. But I do. Know why? Because someone out there is sitting, right now, next to their newborn child in the NICU and freaking out... disappointed... scared... and wondering what happened... if they can handle it. Or a couple has been given pre-natal indicators that they won't have the child they dreamed of and are weighing their options. I wrote a letter to that very person and people like him or her in the post "Dear You,". We got through that difficult time - and Gavin helped us. By telling his story from that time, we can spread hope. Hope that things will be alright. Hope that you can survive the unexpected. Hope that your marriage will survive.
And me? The one with the unstable history that proved time and again that I couldn't handle things well? I am 1000% sure that was why I was chosen to be Gavin's mother. He was my greatest teacher, this child. And he showed me that I could, indeed, handle things - and get through difficult times. He inspired me to stay positive and focused and not wallow in self pity.
As Gavin grew, his problems also grew. He was hospitalized for months with RSV and Botulism. He had therapists coming to the house nearly every day. We had to learn how to use oxygen, insert feeding tubes, manage feeding pumps and more. We had to navigate the crazy insurance world and fight for things. And it became my personal mission to research and find ways to heal Gavin - and heal ourselves. Through all of these years, Gavin smiled. And smiled. And it made it easy for us to smile through everything, too. And through all of those years, Gavin slowly busted down every negative prediction or diagnosis. He held his head up... he sat up... he pulled to kneel... he crawled... his permanent hearing loss was restored... he avoided a permanent feeding tube and ate orally... and he even started taking steps - just four months before he died. By telling these stories and showing the photos and videos of these milestones, we can spread inspiration. We never believed anything - any diagnosis, any prediction - because it was Gavin's journey... not theirs. I truly believed that he would be the one to show us what he was capable of. And no diagnosis or label was going to get in the way. That would just keep him stuck - and us stuck. "Oh, he'll probably not sit up? Okay - then why try." "Oh, he won't eat? Okay." We refused to give up because Gavin showed us that he refused to give up.
And through all those years with Gavin, we faced even more obstacles. Miscarriage after miscarriage - and the birth and death of our daughter, Darcy. My diagnosis with Rheumatoid Arthritis and Fibromyalgia. Gavin's crisis with a corneal abrasion that nearly cost him his eye. The death of my beloved Father. But we got through it all. We are proof that you really can survive anything. And we want to share the good, the bad and the ugly so we can show others that they, too, can survive.
Gavin endured much in his short life. Sure, we were there - but it was HIM that went through it and did the hard work. It was such an honor, as his parents, to witness his sweet nature... his persistence... his positive spirit. When he died, that is one of the big reasons why it was an easy decision for us to donate his organs. Why wouldn't we want to share this child with others? And, regardless of how the organ donation turned out in the end, why wouldn't we want to share his inspiring life's journey as a way to encourage others to become organ donors?
Ed and I have grieved greatly for our son. But we have also made a pact. The two of us have a shared experience in Gavin. We watched him come into the world - we watched him struggle - we watched him overcome - we watched him get snatched from us in a second. There is no way that one of us would leave the other - literally or figuratively - to be alone with the memories of experiences that were meant to be shared. It's just not happening.
Gavin had a story to tell when he was here. And Gavin has a story to tell still. The story is different for each person who reads about him... and that's how it's supposed to be. His life is filled with lessons and wisdom and hope. It has been my honor, truly, to share all of him with the world. And I have sat and read the comments and the emails and the posts about how touched people are by this little boy they've never met... how his story has inspired them in one way or another... how people have decided to change majors or careers because of Gavin's life... how parents have learned new ways to help their child... how parents have been given the energy boost they had needed to "keep on keeping on" with their child... and so, many more beautiful thoughts. It has been humbling to watch our sweet little boy touch hearts and change perceptions and prove to people that every life matters.
Imagine... this little boy who never spoke touching lives all over the world. Inspiring positivity and generosity and understanding. Spreading a message - just with his life story - that you should never... ever... lose hope.
That is why I'm sharing. Gavin's voice deserves to be heard. And I am blessed - beyond blessed - to have been his Mommy... and his loudest mouthpiece.