One of the last photos of Shane
Today is Shane's 11th angelversary. 11 years since I lost my little boy. I can honestly say that I remember the time he was here more vividly than I do 4 years ago or 5 years ago. It's like my life stopped the day he died and didn't start again until my husband and stepsons. Being Shane's mom was the most magical time of my life.... I held a miracle in my arms. I had him for 6 and a half years and I feel both guilty for that when others weren't so lucky and I feel extremely blessed. He was the best little boy a mom could ever hope for. He was perfect. CDH, CP and all.... he was perfect.
The last 11 years have been an adventure.... lots and lots of lows and ending with highs. Life is nothing like it was when he was here. 11 years ago, my live fell apart when my only child died. Followed by a divorce, 2 more deaths in my immediate family, losing my house in the divorce, losing all self-confidence and ending up in 2 bad relationships and losing myself. CHERUBS took a break because I as overrun and no one offered to help and we had to deal with an unstable woman trying to break the charity down at the same time. Life was hitting me on all angles. I can tell what it's like to be completely alone and devastated and to have no one to turn to. I was at the bottom.
But there was good too. My faith got so much stronger. I found God and Jesus in the darkness. I helped my sister find God before her death. I found myself. I found an amazing man and 2 more sons. CHERUBS is now thriving and doing more for the CDH community than ever. All of this because of Shane.
Since his last angelversary, my family and I have moved into a new house, my boys are in 10th grade and C and I have been married almost 2 years now. Life is good! :)
For CHERUBS in the past year, we've gone to 3 medical conferences, held a CDH conference in Orlando, several local events, many fundraisers, almost done with the CDH Research Site, continue to work with amazing researchers, found 4 sponsors for our CDH Research Bill, have the Angel Ball next month, won 2nd place in a national contest and $30,000, got 5 projects in Pepsi Refresh, had 3 celebrities endorse us, posted dozens of educational CDH videos from our conferences, released a CDH song, been in the media several times, won the fight againt the CDH Awareness Trademark, have our new site almost finished and now help over 3200 families. It's been the best year for CHERUBS so far and it just keeps getting better. God clearly watches over our charity and I know Shane does too.
I got this message this morning from an old friend, another CDH mom who I've known through Shane's life and death and all the trauma the CDH community has endured the past 8 years. A former founding board member of Breath of Hope who left shortly after she realized it's true mission.... I say that because my point is she knows what she's talking about....
just wanted to say i am thinking of shane today. i still think of shane first on this day before all the 9/11 stuff comes into my mind.
if it wasn't for shane.....NONE of us would know each other.
to me, that is truly amazing.
That meant the world to me to read this morning. That she remembers that. That someone sees that.
And she is right. If Shane hadn't been born with CDH, Without my son there would be no CHERUBS. 1000's of CDH moms wouldn't know each other because they never would've met in our charity. There would be no CHERUBS UK or CDH Australia (formerly CHERUBS Australia) as we helped them get started and sent members to them for a decade each. There would be no Breath of Hope as all the original members there came from CHERUBS, the founder was a volunteer at our charity before she had to be banned. All the members at BOH for the first year or two came from CHERUBS, and our charity continues to inspire their services, set-up, projects, etc. Project Sweet Pea started at CHERUBS. The Olivia Raine Foundation, Jack Ryan Gillham Foundation and Parker Reese Foundation..... all in memory of specific cherubs but all members of our charity or recipients of our support services and attendees of our events before they went on to start their own charities. The members of CPNTWO came from CHERUBS and BOH. (Let me be clear before the mean girls say something nasty about my son - I am NOT taking credit for these charities). But all of these women met at CHERUBS or indirectly through CHERUBS. They made friends for life on our forums, at our events. Some conveniently forget that and all the good we did for them and help they received.... but it's true. And in the past few years, even more charities have popped up, inspired by the success our charity has had and our mission to help CDH families or working with other charities that we inspired. A whole generation of CDH families helped by CHERUBS. 1000's of families who found support through each other and the origins of most of that can be traced back to CHERUBS, which can be traced back to one little boy.....
I love this photo. I love how he's looking at me... like he's saying "ok Mom, he's the deal. This is CDH. Your job is to help me, protect me, love me AND help the other babies too. That's what God sent me here for!". Such a serious face and so full of love too.
I continue to volunteer at CHERUBS in his memory. No one knows how much time, work and money I put into CHERUBS in memory of Shane. How many sleepless nights, how emotionally draining it can be to live CDH every day. In the past 3 years I've stuck my neck out to defend the charity and CDH moms a lot. I've endured a lot. When someone attacks CHERUBS, they attack my son. My little boy. What mom is going to roll over and not defend her child? I could say all this bad stuff is happening because of CDH, because of Shane too.... but it's not. He's the rainbow in it all. He's my strength. I could give up, move on, live out my life with my new family and turn my back on all the drama.... but I can't walk away from these babies and I can't leave these families with no support or accurate info. Too much more work still needs to be done. We still don't know what causes CDH or how to best help these babies. Too many babies are still dying. CHERUBS is my ministry... to help CDH families. It was a calling, not a choice I ever had. God gave me Shane and he gave me and Shane a purpose. I know He has my back, He sees all, He gives me strength and He knows all the amazing things we are doing for families. No ministry or act of goodness happens on this earth without the devil trying to tear it down. But God is with us through it all and he won't let me give in or give up. God was there when Shane was born, when he died, through all the many miracles he gave us. He was there for me when I was alone, when all this charity stuff happens (good and bad), when I cry because I miss my son, when I married the love of my life and became a mom to 2 more wonderful boys. God was there. And Shane was there. God gave me Shane and Shane gave me God.
One of the members tells me that Shane is looking down on me, watching it all and saying "that's MY mom!!!!". I love that, I hope that's true. Everything I do in this life, I want him to be proud of me. Just as I'm the proudest mom in the world because of him. He did more and has helped more and continues to help more people than most people who live to be 100 years old ever do. He never committed a single sin in his whole life - never lied, stole a toy, talked back to his parents, killed a bug, hit anyone or hurt anyone (how many moms of 6 yr old boys can say that?). He was sweet, generous, kind, loving, gentle and funny. He was perfect and he was 100% nothing but goodness. I am the luckiest mom in the world.
I was going through photos to post on here today and I found a photo I took of Shane for Father's Day, just 3 months before he died. CHERUBS members have been submitting photos of cherubs holding signs for the contests. Secretly, it's bugged me that I don't have a photo of my cherub in this campaign too. I had forgotten about this photo and then found it this morning. I know Shane sent me this today of all days. I edited it and now he's in the campaign too. Thank you baby. Mommy needed this.
I uploaded a lot of photos of you to Facebook today too. I'm always telling other CDH parents that I understand.... now they can see that I truly do. I know what it's like to take care of a cherub and deal with CDH for years and I know what it's like to lose a cherub and grieve. But mostly, I know what it's like to be a mom. Your mom. I miss you and I love you, Shane. You will always be my hero.