I’ve been looking for a way to do this for sometime now. I just didn’t now how, what or fully the Why. I try my hardest to be as transparent as I possibly can. But the truth of it all is, I did name the blog “Not so bright and shiny” not “happy happy joy joy”. so yes. I am glad to do this q & a and I truly hope it helps people understand it all.. Thank you Josh. Your friendship was so meaningful to Conner, you two have a love for those furry guys that not many others share. That is what drew him to you, and knowing you and meeting you this past summer with your wonderful wife, I can say that our LOVE for you (and your wifey) is what keeps us drawn to you.
From the bottom of my heart, thank you my friend.
( I will post my answers in RED of course!)
Hello Readers of "Not so bright and shiny" - an intimate look at one families journey through a double whammy diagnosis of Prune Belly Syndrome and Cystic Fibrosis.
This blog is filled with small moments of joyful light that breakthrough the thick clouds of sadness, pain, and ultimately the passing of their eldest son, Conner. These moments are shared through the eyes of Sarah - a brutally honest and loving mother who now uses this journal as a place to grieve and a place to educate people about the realities of two very serious illnesses.
The Jones Family and I met via my puppet, Moganko, who Conner adored and communicated with via videos and silly notes. Moganko gave Conner joy because - next to Grover - he was a confidant that understood his life. I am proud to say I've built a strong friendship with this family. I am astounded by their poise and, like so many, inspired by their will to live. Yet, something troubles me...
In the blogging world, people tend to think of the writers as one dimensional. That the way they write or the theme of their blog gives the impression that those words represent every minute of their life. I'm as guilty as anyone else of this. When I read things about public figures, I tend to imagine the words on the page as their final thought on the matter. Sometimes that is the case. In this instance, however,...with this family, it's different. Yes, what Sarah writes is real. Her heartache for herself and her family, particularly her sons, is very real. But it is not all that encapsulates their lives.
A few weeks ago Sarah and I discussed a Q & A blog post for her to provide explanation and answers to many of the thousands of questions she's received. She wanted people to understand that this sadness is one side of her life right now. A HUGE SIDE...but just one side. I declined at first because I didn't think it necessary for her to justify who she was to anyone. She knows who she is and so do the people who support her without fail. No one else needs the info. But then, when I go to her blog and read her posts and I continually see these heartfelt pleas for her and her family from concerned readers.
"Are they getting all the help they need?"
"Is she seeking help herself?"
I bet there are some people out there who have even thought (but never chose to write it):
"Geez, Sarah...time to get over it. You have two other children and a husband who need you. Suck it up and move on."
You know why I know this last one is true? Because I had a sister pass away from CF 17 years ago and occasionally, I still get that comment from people.
So I changed my mind. I've decided that if Sarah wants to let people know more and she is asking for my help, then damn it, I am here to help because that is what a good friend does. So......here are my questions for the "Mama Bear":
Your posts are very emotional and somewhat distressing for your readers to read sometimes, you know. When you write your blog posts, is that how you feel every single day? Are you getting help with your grieving besides writing this blog? Wonderful question. I have spoken a couple times and even drew that fantastic diagram about how grief changes almost instantaneously. Your up one second, then the blink of an eye your way down, there are constant reminders of the loss that compounds the grief even farther. Most of the time it catches you off guard. Example. Today I spent the day with Hunter at his school with him. At his outdoor play time, I was running with him and SMACK!!! A child was wearing the same EXACT pj’s that Conner passed away in. it took my breath away. It is unpredictable, and the reason I started this blog was to get it all out. We had/have a caringbridge site for Conner, but I just didn’t feel I could tell my full emotions on it. I used it as a place for family and friends to stay up to date with all his medical stuff. I write in this blog on days and in moments where I’m kinda about to explode emotionally. Some people may handle their grief by running, or alcohol, or not getting out of bed, I chose to write.
As well as that, our family has been in counseling for nearly a year, each week, some occasions more than once a week. I am a HUGE reader so I have a libraries collection of books on grief, and we also are part of The Dougy Center childs bereavement program that is biweekly. I feel at this time that is adequate.
Are you able to be there for your husband and children? You seem so heartbroken and grief-stricken by Conner's death...how are you able to function for them? For yourself? Make NO mistake, my heart is shattered. Nobody whose ever or will ever lose a child will walk away from it unscathed. It changes perspective, beliefs, and leaves a HUGE hole that will never be fixed or filled. Yet from day one I’ve been keenly aware that my other two boys and my husband need me more than ever. People who are in the trenches of this with me will attest, from day one I’ve been doing many things without help. I realize the importance of receiving help from loved ones, and I also appreciate and value my own ability to remain a very functional part of the Jones house. So not functioning, has never, nor will ever be an option. Family first. Our house is filled with the sounds of laughter, and there is a lot of hugging, snuggling, kissing and words of appreciation shared. We know the value of making each moment count.
Can you talk about Conner? Do you like to talk about Conner? Should I ask you "How are you doing?" anymore? Sometimes we don't know what to say to you. We just want you to be okay and we have no idea how to help that happen. Our family talks of Conner as if he’s just in the other room. He’s still a very real and important part of our days. He’s not here visibly, but conversationally we talk of him all day long. I love when people say his name, I don’t want his name to ever represent sadness, he was a wonderfully happy child full of love and life, and that’s how he will remain to us forever. I’ve never been a big fan of “how are you doing” it’s pretty general, truly. Even long before Conners death I kinda felt it was a question posed out of necessity, to get that punch on your friendship card, you know? “well I asked” kinda thing. never felt it as a genuine question. But beyond that…right now whats most important is SIMPLY TO BE TALKED TO…AND NOT IGNORED…a child dyeing is taboo to say the least…but how are we supposed to ever fully move on if nobody can even talk to us about it? I’m ready for the elephant in the room to be gone. Our son died. We know that and will never forget it, trust me…so you can talk about him, just as we do…and even if a tear is shed IT’S OK, tears are full of healing…
How are Brad, Hunter, and "Baby B" doing?" Do they like to be asked about Conner? As I mentioned above we talk of Conner as if he’s still here. That’s something I’m sure may fade over time, when life changes and the kids grow past his dyeing age…but for the most part, our talk of Conner is not ONE bit about his disease…but about the real HIM. Bradyn unfortunately will kinda miss having Conner memories…he does point Conner out in pictures and includes him in his “blessings” at the dinner table each night…but that’s another reason we talk so much about Conner…we want Bradyn to know all about his older brother who loved him so much. Hunter is handling it all pretty well. He is in bereavement groups with kids his age who’ve lost a brother or sister and that helps. He talks of Conner much more now and how much he misses him, and even cries. so hes able to now put words to his intense emotions instead of physically acting on them. I’m very proud of him. Brad is the same as me…good days and bad days. there truly is no timetable on grief and it’s unacceptable to try to put one on someone.
Is there anything about you that people might be surprised to hear? Things outside of raising CF Awareness or Prune Belly Syndrome Awareness? HHhmmm…this one made me think a bit. First thing that popped into my head was that I betcha didn’t know my favorite meal on this earth would be Salt and Vinegar chips and a cold pepsi… he he he. Took me awhile to get past that cus then my mouth started watering. So I’d say one thing that people may be surprised to hear is that I feel I’ve become a much stronger person having to face all that we’ve faced this past year. I think I’ve become a person that I can look in the mirror and be proud of. That I’ve pushed past the anger that once weighed me down and realized that everyone will fail you. because we’re human. I feel I would’ve stayed the old me my entire life, satisfied, never knowing there was so much more to myself, and to life had I not been pushed to face change and learn from it. I hate so much that it had to involve losing something so precious to me…but I am so grateful and thankful now that I know what life is truly about and what it absolutely is not.
Do you ever laugh anymore? Every single day. Many times a day. I laugh far more than I cry. I’ve never been a big crier. I’m more vocally emotional, this blog is what helps me get it out. I cant just sit down and make myself cry…never have been able to. SO I write whats on my heart, and it usually leads to tears…and when I click POST I almost always feel so much relief and release. At a womens conference a few weeks back, each woman got a key that had a character trait on it…how fitting that mine said Laughter.
Is your marriage okay? THis is a very important question. We all know the statistics on marriage these days. Double that for a child whose died. It shatters your trust in everything. It robs you of security, that really you never should’ve had anyway. Life isnt guaranteed and not one thing is promised or owed to us. We see that now. I’ve heard many rumbelings about my marriage to Brad and I have to just shake my head. People never know what its like truly behind that closed front door. Nobody’s marriage is “wedded bliss” it takes work. It takes soooo much more patience and understanding for us having lost a child. when I have an up day sometimes that’s his really bad day…so we take each other with a grain of salt if we speak out in anger or impatience…we are very communicative now. we touch bases most days to see how it’s been. We respect each others need to grieve in ways that are best for each of us, men and women grieve very differently. My family has been devestated by Conners passing, I’m not about to steal away anymore of their joy…we work hard on our marriage and I can safely say that we are doing good. we’ll find the way one step at a time to navigate thru this…family is everything to each of us.
You have readers from all walks of life, but respect your strength and devotion to your beliefs. Your love and faith in God clearly grounds you, but since your son passed away does that make you question things? Is your faith still in tact? More than that, it’s grown a thousand times over. You have two choices in pain…face it with God or walk away from it, and walk away from God. You can say “woe is me, god DID that to me” or you can say “why me, and how will God deliver me thru this”. I believe that He is for us and not against us. That he has plans for hope and to prosper us and not to harm us. I believe it. I believe that all pain has purpose…not one tear of ours falls from our face in vain, nor without a price…afterall who else knows what its like to lose a son better than God himself? In saying that, I do at times question his plan for sure, or I get angry with him because the pain is so intense. but hes a big enough God to handle that, and He carries me thru it. I think God respects peoples honesty. He doesn’t want some uniform christianity. He wants authenticity and character. that’s why He created us each so individually…and knowing that I can go to him upset with the way things are right now, and he’ll love me thru it makes me lean on him and trust him even more…
Will you ever stop writing "Not so bright and shiny"? Your readers love your way with words and would certainly miss your wisdom and "love, love, love". Will there ever be a right time to walk away from this blog?
Yes I do feel that this blog is meant for a season in my life. to help me thru Conners last year on this earth and thru the grief of his passing. I never started this blog for anyone but me, infact I never gave the URL out for a long while…nor made it public for awhile as well. there is a season for all things…and this one day will end in it’s perfect timing…who knows when…I love to see how God is using this to minister to so many different people all over the world, and I’ve met some amazing people thru this outlet, many whom, like Josh, I never would’ve met otherwise, so to me it’s still a blessing…one day when life is so bright and shiny that you need sunglasses just to see me…then this too will fade away… ;)
Thank you, Sarah. On behalf of your readers, we treasure this blog, your words, and your message however long it lasts. Love, Love, Love. Always, Always, Always.
Peaceful Things and Lots of LOVE, LOVE, LOVE,