I did a writing workshop on Wednesday (this actually did not make me cry), went to several panels, picked up some great kernels of information including:
• Quora, an ever-changing collection of questions and answers created, edited and organized by a user community. I am telling you, DO NOT LOOK AT THIS if you have no room for any other time sucks in your life. It is addictive.
• Titles of post should never be more than 70 characters long or search engines won't find them, which means I should not ever title a post Max Is Still Obsessed With Purple Purple Purple Purple Purple Purple Purple Purple Purple Purple Purple Purple Purple Purple and...Purple.
• This YouTube video, A Mom Talks With the Director of Special Education, is funny and too true (thanks to social media genius Kim Moldofsky for sharing).
The conference set up "tribes," to pair up people with common areas of interest. There's a green tribe, a design tribe, a travel tribe, you get the picture. I am the tribe leader for the Sexy Moms tribe. Oh, OK, I am the tribe leader for Special Needs. A group of us got together yesterday and shared stories and some of us cried a little. I think the Fashion tribe was the next table over and, oddly enough, none of them seemed the least bit wrought.
When I hear moms with younger kids talking about their children, it takes me back to that time and I well up. I know where they are, I know the pain they're feeling, I know the anxiety they have. In general, though, I'm at the point where I can talk about what happened to Max without crying...usually. But I lost it at the panel I was on yesterday afternoon, Advocates and Activists: Harnessing Social Media for Social Good In The Face Of Compassion Fatigue.
My co-panelists: Anissa Mayhew from Free Anissa (who's dealt with a child who has cancer and her own stroke and who is one of the funniest women I know), Ellie Schoenberger from One Crafty Mother (who's overcome alcoholism), and Ryan from Pacing The Panic Room (who created a kiddie CD, Do Fun Stuff, to benefit Smith Magenis Syndrome, which his step-son has). The moderator was Megan Jordan of Velveteen Mind, an exceptionally wonderful person.
I was already emotional by the time I started talking. Catherine Connor from Her Bad Mother did an introduction where she spoke of her trip to Lesotho, Africa for the Global Fund's Born HIV-Free program. She met with a group of blind children who had HIV; one of the girls sang a Beyonce song for her (scroll down Catherine's sidebar to see it).
Tears.
Meagan spoke of her home being completely destroyed by Hurricane Katrina and showed a picture of herself and her little boy standing in the footprint of his former room.
Tears.
I so didn't want to cry when I spoke, because part of the message I try to spread is that Max is not a tragedy, and that he shouldn't be pitied. But, damn, when I started talking about the list of stuff the doctors told us could lie in his future (he might never walk or talk, he could have mental retardation, he could have vision and hearing problems), I cried. In front of a roomful of people.
It passed, but once again, I was surprised by how my emotions hijacked me. These days, I can talk matter-of-factly about Max's cerebral palsy and his challenges. But eight years into his life, there's still rawness when I talk about his birth.
How do you react when you talk about what happened to your child or his/her diagnosis?
My niece is two years old and being tested for cerebral palsy and autism this week. We've been chasing a diagnosis for quite awhile. My mom and dad help my brother a great deal in raising her, and I know that one day- the responsibility of taking care of her might fall on my husband and me. Reading your blog has taught me that I can do it too. I can raise a child who has special powers in much the same way you have- with a great deal of compassion, love, advocacy, and humor. Thank you for sharing your story- the good, the bad, the funny- with so much honesty. I know that you have inspired me in unimaginable ways.
ReplyDeleteOh my - that youtube video is so funny, but so very true. It's no wonder we quit early intervention.
ReplyDeleteMy daughter is only six months old and we found out during the pregnancy that all was not as it should be. When she was diagnosed was by FAR the hardest part of our journey so far. When she was born was easier, even the four month NICU stay wasn't as bad. I think that part of the hardness of it all is that when you have a diagnosis, you really have NO idea what to expect and you are thrown in the deep end. Once you start learning to deal with it, it just becomes every day life. Even though it's a year from diagnosis now, I'm sometimes amazed at how I talk about my daughter's medical issues as "everyday life" now, because that's what they are! But at first it was so shocking and life-changing.
ReplyDeleteI'll admit it I can't talk about certain parts of Jake and Chris' issues without get angry. At least 85% of the challanges my babies face are because their bio-mother chose to drink and use drugs during gestation.
ReplyDeleteBecause I know that taking about 'Why are they like this?' makes me mad I focus mainly on all they have overcome. We were told that Jake had moderate to sever mental retardaion and would never progress much past the mental age of 2. He's now 6 1/2yrs old, and attending mainstream classes. Like most FAE and FDE kiddos he has little in the way of social copping skills, and an endless list of health issues but we're working on it more and more every day.
Tracy
Someone told me about Quora and I wil NOT go there. I am in touch with my addictions and I have no time to feed another :)
ReplyDeleteI'm glad you're havin' a good ol' time !!
The way I deal is to talk about it. And the more I talk about it, the easier it gets.
ReplyDeleteI also try to remember that my daughter's diagnoses don't define her. If I allow her to reach for the stars, she can.
I well up whenever I share what the Tongginator's condition (physical and developmental) was during our first days and months together as a family. Because I know it was primarily due to situational neglect. I rarely share that information, because it's not really necessary now, but each time I do, I find myself holding back the tears.
ReplyDeleteDon't use post titles that are over 70 characters. I wish I knew that before my last one went up. I couldn't decide on a title, so I gave it 3.
ReplyDeleteMy oldest was no surprise--he was my husband's nephew, he came that way and we knew what was up with him before we adopted him. My youngest had a diagnosis that was revealed in dribs and drabs over time, is fairly mild, and while he has challenges (particularly with his arm and hand), he can and does work around them. Plus, both kids weren't "planned" -- I thought I was on the cusp of menopause. Bottom line--we were accidental parents, so we didn't have a whole store of "hopes and dreams" and invested ideas about how our kids should look, act or be. We weren't looking to create better versions of ourself. What sucked was losing the pack leader in a stupid accident. That's a tear-inducer to this day.
ReplyDeleteI cry every single time! Jailen is 5. Reading your blog usually has me telling myself "this too shall pass", but it never does. No matter what the subject, good or bad, milestones accomplished or farfetched, it doesn't matter. If we're talking about Jailen, I'm crying. Someone told me just a few days ago to stop mourning him & enjoy him. Funny thing is, I don't mourn him at all. I love him just the way he is. His "different" is so much better than anyone else's "normal" (recent facebook status)to me. Why I cry so much,no clue.
ReplyDeleteIt's been 12 years since my son's near drowning (25 minutes under water at a camp.) You never get closure; you always think catastrophically; you never get on with your life. At some point, the wound which never heals, begins to ease in intensity. It is always there and we all go to very many dark places...these events should not happen to kids; that's why the wound is so deep.
ReplyDeleteEllen,
ReplyDeleteI know it's not the same, but I felt for everything you were saying yet again. (And even shed a few tears just reading!) My emotions surprise me on pretty much a daily basis. Though I consider myself pretty "well-adjusted" to having CP, anyone who knows anything about CP knows that you can never really be fully adjusted. There are some days where I cry or just feel extremely emotionally "touchy". I've gotten better at talking about my experiences, partly because of my blogging, but I still choke up every single time I do talk about it with anyone. At least emotions keep us reminded we're alive and present right?! Or something :)...
Molly
If any readers skipped by the video Ellen linked, go look at it right now! I laughed myself silly. And I prayed that never happens to me, because I will cry.
ReplyDeleteI've become able to talk to some people (mostly strangers) without crying about Hannah's issues, and quite frankly it surprised me that I could. Initially I certainly could not. Now I can explain a constraint cast or kinesiotape on my daughter's hand without crying. But when I talk to someone I know/really care about, my eyes get leakier. I leak when I have to tell someone I haven't seen for a while. I cry at many doctor's appointments and therapy sessions. I do a lot of public speaking for work and it really does not intimidate me but I think if I were on that panel, with those other amazing storytellers and stories, I would have lost control of my emotions, no question at all. Today I cried when the PT I am not as close with was talking to me about calf tightness and what could happen and what kind of brace he wants to switch to and surgery/botox/casting options, even while Hannah is running about and looking great. He just had to tell me that Hannah could change, and I think he expects she will change. I didn't stand a chance. Like your commenter PrincessJenn said, Hannah's diagnoses don't define her and that is a mantra I am trying to adopt, because that is what I really want Hannah to believe, so everyone else has to see that too. Not easy but worth fighting for. We love you, Ellen!
Charlie's diagnosis has never been tough and that list of this that might happen--I've viewed them as challenges. But those early hours of talking about funerals, having his baptized and thinking I'd never see him again-- well, that makes me well up just to talk about it.
ReplyDeleteI don't cry when I talk about Ashley's condition. We have learned to live with it and Ashley simply ignores it and simply defies all the gloomy predictions and achieves and achieves and achieves.
ReplyDeleteHis medical condition is just a list of permanent physical malformations and a delayed global development.
His achievements stun us and those, my friends, are the things that bring me to tears.
I come home from work with the normal drudge of the day on my shoulders. He drags himself to his feet (sideways) looks me in the eye with his Nystagmia and his tunnel vision and says "Hiya Daddy" forcing his mouth to make the sounds intelligible.
Then I cry.
I cry every time i tell the story of her accident. Every time.
ReplyDeleteI say keep making the titles however long and humorous you want. It makes it more interesting for the reader. Your blog is already doing quite well in the search engines. That's how I found you searching for something about the iPad's use. If you really care about the SEO end of things, you can change the "title tag" to be different than the actual title. Search engines are paying attention to title tags which as a default come from your title, but you can change them.
ReplyDeleteFunny, I went to a similar session at Blissdom Canada and BAWLED my face off! I guess since we're only 1.5 years into diagnosis, it's still kinda fresh for me. Although, I usually can get through it ok, except at blissdom, that Catherine made me sob!
ReplyDeletejust went to quora despite your warning it is a time suck - and i so do not need another one - and my goodness. it's good.
ReplyDelete"Emotions hijacking"
ReplyDeleteLOVE that. I always think I have it together. And the times when I probably SHOULD cry...I'm cool. Then...waterworks.
You did great. You didn't even smudge mascara. Plus, you bought me breakfast, which might earn you a Get Out of Jail Free card for a while. So, it works out. ;)
Oh boy! I can't even express what this conference and our talk did for me! I have been bottling up a lot and putting on the "brave" face for a long time. I feel like the burden was lifted. I have to say it is the first time I really cried about my situation with Lily. I have been talking about Lily's situation for a long time very matter of factly and removed from the feelings. I don't think I really wanted to admit what I felt, because I am never sad about Lily! I would never do anything differently, I wish she didn't have to deal with the struggles. Many times I find myself thankful for being her mother and I have what it takes to make her life GREAT! I love her differences, even enjoy watching her doing things her own way, and I admire her ability to overcome her challenges. Focusing on these are the most important parts, I know, but sometimes I feel that deep sadness that I expressed at Blissdom. I realize now I can't deny it! It is nice to know that I don't ALWAYS have to be strong. Thank you for being you and for the gift of knowing I am not alone. Your blog gives me and I am sure many others that relief.
ReplyDeletemy son was born at 24 weeks, the cusp of viability, and the events that led to his birth and our meeting as mother and son, can be regarded as tragic, something to be pitied, something miraculous, something heroic. But I bristle at some of it. I am in awe of my son, the amazing human that he is because I see the obstacles he overcame everyday in what I do for a living. But as a mom I am in awe, moved to tears of fear, pain, joy and admiration when I recall the events of his birth and pour meeting.
ReplyDeleteHe is truly extraordinary and has made me a little less than ordinary just by being on his life's journey with him. god only knows where this will take him but I will be along for the ride and if I can't I will be there with the rest of his family, his Daddy and his 4 sisters and niece who all love him so.
The one piece of advice I offer to families who raise children with special needs is a;ways, before anything else, celebrate the normal. I never knew that a temper tantrum could be so delightful until I was Daniel's mom.