Quinn was looking at a picture and she said it looked like daddy and it was a beautiful man who was pictured marrying Carrie Underwood. Julian was all like, “Cool. Thanks! So nice! Awwww!”

Then she says, “No..not THAT man, the man whose head is bald…right there on the left.” (it was a guest facing the other direction).

————

A while back we took a trip and we drove. We drove for a long time. We passed through little rural towns with squares and clock towers and small farms and little 1890′s houses.

Sad but true, Quinn says: “When I am older I want to live in the country but I won’t be able to because I won’t be near a hospital.”

————

Gage attended a party for a friend and there were a lot of kids. It was a karate party and he was apprehensive about going because he had a not fun experience with his karate teacher when he got back from his transplant. So…he brought Sally, Ugly Orange Kitty.

A father, bald, beard, friendly biker looking, waiting for his daughter looked at Gage as he came up to me. He noticed Sally. He looks at Gage and says, “Is that yours?”

Gage: “Yeah, you got a problem with that?”

———-

Gage has decided that we needed to replace Sally #2. So Sally #3 came in the mail today and I told him he needed to hug and say goodbye to Sally #2. He repeated after me,

Gage: “Thanks for everything Sally. You’ve seen me through some tough times. And some good times. You were a good cat and you’ve had a good life.”

Although he was reluctant to place her in the memory box.

————

Also, about new Sally. Sally #3.

Gage: “She’s so much fatter.”

Me: “No, she isn’t, her stuffing is just fluffy and fresh.”

Gage: “I’m not taking her anywhere.”

Pause

Gage: “Well, that’s not true. ”

————

Gage’s friend’s mom asked his friend if other kids tease Gage because he sometimes brings his stuffed animals to school.

Friend says: “No. Gage is just Gage.”

That about sums it up.

Over the  weekend I sat in a room with about 100 pediatric nephrologists from around the world. Two from Bulgaria, someone from Italy, Germany.

I was speechless. That doesn’t happen very often as you might guess and it wasn’t because Bulgarians walked by me as I sat in a NYC conference room. It’s because for nearly 9 years there’s been a push to get ARPKD information to doctors and there I sat. I sat with two other moms, Michele and Kirsten as later we spoke about our perspectives on parting a child with ARPKD, or as in my and Michele’s case, two each. The PKD Foundation sponsored this Symposium to run right before the start of their three days of sessions. An ARPKD brochure was put in each attendees bag…and it had Gage’s cute picture on the cover.

Again. Speechless.

This is a long time coming. Nearly the entire time I’ve been co-coordinator for the ARPKD Chapter and offering support to other parents of kids with ARPKD (with Michele and Kirsten) we’ve been wanting a greater flow of information to doctors who may be on the front lines to parents diagnosed with ARPKD. Because, let’s face it, 1:20,000 occurrence is rare and we know that all doctors can’t know about every solitary rare disease. So there we were. Who knows? Maybe next year we’ll be talking to neonatologists.

Anything can happen.

My work with Support for Special Needs.com has brought out the opportunity to meet some fantastic people and Christina, over at Hopeful Parents.org is one of them. At SfSN we are profiling them soon (for a whole week!) and in the discussions she asked if I’d write for the site. I was so honored to be asked and quickly accepted.

Today is my first post that I’ll be doing monthly (on the 25th of each month). Would you mind going there, leaving a comment if you are moved to do so, dig around a bit and see all the wonderful writers’ work. The work is about US, a parent’s perspective. And you know how I love to dive into my feelings about my life. This life.

A pivotal point in Gage’s journey is the day he recognized and verbalized that he could die. It wasn’t the day the surgeon told us he could die from the surgery, even though the risks were low, and it wasn’t the day of his botched surgery for his second catheter placement, it wasn’t even the day a year ago he grabbed a rope, ran to me and put it around his neck.

The summer day two years ago on vacation and we were discussing when he was on dialysis. He simply said, “You mean when I almost died?” Yes, then.

It was the first time that he’d verbalized that he was near death, that he could have died. And if was the day that my Momma Radar when up that he was in great danger. Within weeks he’d begun play therapy, been referred to a psychiatrist for being acutely (and dangerously) depressed. It was also the day we started trying to talk more about his experience because obviously he had many feelings about his illness and treatments and well, it wasn’t going to get better by just pretending it didn’t happen or that he didn’t have these feelings.

Because you know what? He was near death. He was barely alive when we had the catheter emergency placed and we smiled along side him during that first dialysis treatment, knowing we’d likely be able to keep him alive until we could give him a kidney. Something happened on that botched surgery day, too. I just don’t know what. It was enough of something that makes the memory of the surgery keep coming up. Maybe he was awake for some of the surgery? Or he heard something the surgeons say?  Just recently he talked about that surgery and the pain from it. He said something about it be different than his first surgery and he didn’t know why. I asked him if he remembered the dialysis session that the nurses sang happy birthday, gave him a cake and then he threw up. He said, “yeah, that hurt a lot.”

Gone are the days of him wanting to die and wanting us to kill him. Occasionally he will still say, “It would be easier if I were dead” when something is particularly frustrating and difficult. It’s not everyday, several times a day that we’d grown accustomed to back in the early days of his depression.

My son is doing well. For him. That’s what we look at; Gage is in his own group of one. When we look at how far he’s come, we’re grateful. When are focused too much on how bad it was instead of how much better he is doing it sends us into a place we don’t want to be so we’re learning how to remember, how to look back. Remembering how sad he was helps us see how far he’s come and how far he can go.

Two smiling children and a mother stare back at the camera.

Giggling, arms intertwined and legs flying because of tickles.

Time after time the scene is photographed,

Yet elusive to the mother who longs to embrace a willing child

Who cannot be hugged because he believes he is not lovable.

Over two years since the child willingly leaned against his mother

And wrapped her arm around his neck,

Held her hand.

She is surprised to have proof of holding both children

Who are genuinely happy.

So, couple of weeks ago Gage had a meltdown. It was a biggie. Not as bad as pre-mental hospitalization but not as good as the honeymoon period of time when he was newly stable.

Something set him off – an incident with Quinny – and it was over. He said, she reacted, he did, then she did and it all happened before we could intervene. Because that’s what we usually do, is intervene. We’re able to catch them in the act of being knuckleheads with each other and calm the sibling storm.

The evening ended up with him weeping. Weeping that involved screaming and saying things I hope he didn’t mean like about being dead or hurting Quinn. That night after they were asleep I talked to Julian about what our next steps should be; because whatever we were doing wasn’t working. There was virtually no progress forward.

So the idea was born to chill on the cognitive therapy and try something else. Well, the idea was mine and not all the well-received by the J-man. Not to say he wouldn’t have gotten up to speed, but occasionally I have to speed by him and this was one of those times.

I decided to do some therapy with him. I’d loosely read this book (meaning I flipped through, spoke with the author at Support for Special Needs (link to the interview). And the most important thing is that I know my son. He’s no longer getting anything out of cognitive therapy. He might be getting something out of play therapy so we may or may not keep it. I want to leave the option in case he needs someone else to share with – you know, in case it gets really bad.

I’d let Gage know we were going to start some art time together. I told him over a week ago we were going to start having time, 30 minutes, and we’d explore art and maybe we’d also get to talk about our feelings. “Okay.”

In the meantime at night we’ve been doing some deep breathing (recommended in the book) and much to my surprise he was receptive. Three deep breaths in and out. Nighttime is especially nice because he is calmer when ready for bed and the weighted blanket to help settle him in. Last night he had a hard time settling down and said he didn’t want to play legos before bed again because they were too much fun and he couldn’t get to sleep. So I was able to use Fluffy (the imaginary dog I named when I used to make up stories for the kids about a dog who miraculously live with a family and kids named Gage and Quinn, he’s very adventurous, this Fluffy is) in a story about the two of them walking down a river.

He shut his eyes. I rubbed his back while I spoke about a river they were walking along and he was listening to the sounds and seeing the clouds and they rested and had a snack and before you knew it they were in a field away from the river walking through tall grass on the way to their campsite.

He loved it. He even said it helped.

I have no idea if this is the right way to go for Gage, but it feels right for right now. I hope we can continue the imagery work and that I can weave in some coping skills that involve him not going from fine to mental in a few seconds.

Today we started our first art project and it involved his stuff animals. He wants to do a family tree with his animals and maybe a 3d book. So we took photos of all his stuffed animals in groups that he arranged. He has maybe 40?  That in of itself isn’t remarkable, really. But through it we were able to talk about some of the animals and how they felt. Which ones were sad, happy and angry. We talked about which ones wanted to die sometimes. He focused on one in particular, a striped tabby cat. He said he was the saddest of all of them because he was “different” and that he got angry sometimes. We talked a little bit more about why he gets angry and then I brought it up.

Surgeries. I asked him what was the worst surgery and he said his dialysis (meant catheter). He said, “I almost died, you know.” Yes, I did know that and I was very scared for him. And I bet with all the hospital stuff that might make him about as angry as his tabby cat was, maybe even more.

He said, “Yeah, probably.” He moved on from “probably” to fixing his stuffed animals back onto their shelf, paying extra attention to tabby cat.

So, he talked. And that was our first homespun therapy session.

Life with him is different everyday.

Heartbreaking some and surprisingly joyful.

When the sun is breaking, what type of day it will be is unknown.

Reaching for him constantly to help him see himself

As I see him.

Smart, funny, absolutely enjoyable

When he lets his light shine through.

The darkness comes

Making the reach for him harder and intense

But necessary.

Because the world deserves to see his light.

I’ve been writing this post for two days, worried if I am offending someone for leaving them off these links, but I have to get it posted some how, some day, right.

I returned a day after everyone else left NYC and BlogHer I’m so glad I did. I admittedly felt a little guilty because the kids went back to school on the day I was traveling home. Cecily of Uppercase Woman hooked me up when she knew I was searching for a roomie! She set me up with Liza, who was extremely fabulous. I had some weird connections to be bloggers she knew. She kept me up late, but was gracious when she said my snoring didn’t bother her. I would room with her again in a second, if she would have me. I won the lotto of roomies! You should all be jealous that you didn’t get her through Cecily. I loved hearing her and her wife’s love story…and it turns out they lived not to far from me when when she lived in my state.

I enjoyed hanging out with Janis from Sneak Peek at Me on Sunday while we strolled through Central Park, found pizza and my favorite lipstick. She was mightily surprised I relied heavily on her for all directions. She was my personal tour guide. I had a hard time not calling her Sneak Peek, instead of her completely lovely, easily pronounced name.

Through Twitter and at the conference I met the fabulous self-described advocate and troublemaker, Catherine, or how I’ve been referring to her lately, SuperCat, since that is a part of her Twitter handle. She blogs about Rare Disease (yeah, I can identify with that). She’s a fierce advocate and I loved, loved talking to her. She indulged me and let me go on about Support for Special Needs, as she was already a community member and an terrific spokesperson. I just spoke on the phone to her yesterday, so we really are In Real Life Friends. Super lucky me.

Here, Janis and Catherine are nearly pushing me out of the picture…

The attendance (2400) was overwhelming. There were times when I thought it would swallow me up. But I persevered when I was feeling very unconnected on Friday night. Hundreds of people were out at private brand parties and I was feeling out of my element and so I walked up to The Happiest Mom blogger I’ve read and Dawn knows, who was gracious and kind when I told her BlogHer was swallowing me up whole and she introduced me to several bloggers (known and unknown) and that helped me tremendously. Thanks Meagan.

Friday and Saturday were filled with sessions that I attended and mostly found helpful for Support for Special Needs.com. I’m glad I took advantage of those. For nearly three days I’d been trying to meet an online friend, famous blogger, Cecily of Uppercase Woman, and she couldn’t move 10 feet without being surrounded, so she direct messaged me that she was in the lobby so I joined her and Sarah (a wildly talented photographer) for a bit with another blogger (Jackie, below). What I noticed about both of them is that even though they were surrounded all weekend by people, people everywhere, they were smiling and gracious. We enjoyed bagels at a smelly deli on Sunday together. Cecily tried to talk me into going to Type A Mom Conference. Seriously may go. She still had glow sticks in her hair in the photo below. A little known fact? She keeps her phone in her bra like I do. We have room there, she and I.

Ellen from Love That Max shared this picture of the Birds of a Feather lunch for special needs mommas (because, apparently I forgot I had my camera with me that day?) and together, she and I gave out some gift cards that were excitedly snapped up by winners! Catherine was especially excited about the Starbucks cards, as caffeine seemed to be a mainstay over the weekend. There were about 25 women at that lunch so I know I am not listing them all…but here are a few:

Also? I had my business cards paired with Silly Bands thingies (NY ones and generic ones) that people loved! Plus, I handed out a few SfSN bags and pouches. Saturday night I went to a reading for My Baby Rides The Short Bus, which we’re also featuring all this week on the site. That was wonderful (but hot) to be at and I’m so glad I went.

Verda at The Squashed Bologna (a slice of life in the sandwich generation) who smiles every time she greets you!

Pic below: Jo-Ann at Punky Mama (who kind of made me cry when she realized who I was because she made me feel all warm and fuzzy about Support for Special Needs.com) is a former rocker turned special needs parent and right now in the hospital with her little one after the death of her father last week. She is one strong woman! Her friend, Jacquie of After Words is in this picture with Punky! This picture was taken at the Wear Black Brand Party! (not really)

MFA Mama…who is funny. Go read her right now. Especially a recent convo she had with her ex.

Two awesome women, Linda and Cara who run Baby Bunching (having your kids close in age…in our neck we call those kids Irish Twins). They were awesome and Cara gave me the name/number of someone in Atlanta I maybe be able to interview.

I didn’t get to spend enough time with Momo Fali’s. I know! I was bummed, but she was very busily going to and fro. Who else didn’t I get to spend enough time with? Jackie Taylor and Ms. Cotta, who blogs anonymously – so I do have a picture of us together, but I can’t show you! And the person I ran into most on the elevator is Tracy of Tiny Mantras. Her and her cute boy!

Mom to The Screaming Masses, Carmen was delightful even though we only met for like two seconds. She has 6 kids. No         longer wonder why that blog name. Same limited time with Pixie Mama, Jean of Stimeyland and Shannon Des Roches Rosa, Jennifer Byde Myers, and (all on autism panel), Beth of MaternalInstincts, Esther Crawford of She Posts (hey! I contribute to her site!). On the autism panel as well, was Carol, who is funny and fascinating, she is also known on Twitter as Aspie Advocate.

Loved Juliette Terzieff who by far was the most specialized writer I met that weekend, check her out! She has a light about her. Also, her roomie, Pauline of Aspiring Mama, who was also sweet and has the most beautiful hair I’ve ever seen. Here they are with Janis. This picture was taken on Thursday night and look how happy they all look! I know! The cleavage!

I have about 10 other people that I need to link to but I’ve been working on this post for two days and can’t seem to finish it so I’m going to have to leave with this for now and circle back for more.

I will say is that I’ve always found it easy to find or build a community for  myself with people, mostly women and the internet is no exception. The one thing social media does is link you to people who understand what the internet and blogs and social networking sites means to people in a different way. I have friends and family who laugh and joke about me being connected all the time by phone, iPad, laptop so I’m not around many people who understand. People who get it at BlogHer?  That part was refreshing beyond words for I have found another group I consider my people.

My girl.
Always desires to be near enough to be touching me.
She watches the space between us carefully.
Always maintaining a distance that is comfortable for her. Until.
Until she must be in my space.
Except she rarely sees it as my space.
Instead, it’s our space.
She often says, “I’ll always want to snuggle this way, Mommy.”
And I know she believes it to be true.
But one day she will have her own space.
And I will desire to be near enough to touch her.

Tomorrow I’m leaving for BlogHer. I have my business cards, trinkets, a new SupportforSpecialNeeds.com bag I had printed with our logo and I’m buffed and puffed. I’m excited and I’m overwhelmed reading the official Conference Guide. I know no one in real life (you know what I mean), but I’m looking forward to meeting some of my online friends. A couple of very popular bloggers and a few less well-know bloggers.

I’m not really nervous about meeting them though I am nervous about the possibility of sitting in the corner with no one to talk to or have a cocktail with but I’m trying to remember that everyone was new to this experience at one time, right? I mean, Julian says it will be fine because I’m presentable and mostly I don’t have food in my teeth and I shower.

I’m going to meet people, learn more about blogging and promoting the new SfSN site. Also, I want to embrace social media in a new way and I think being around other people who “get it” will be freeing for me.

It’s not that people in my real life don’t get it – they completely support my blogging and the new site, but I can’t run to them and scream about the excitement and have them understand when something really cool happens in this world (like yesterday SfSN site was listed among a group of special needs blogs to read and I was squealing) that I’ve found a home. If I could figure out how to do links on this iPad, I would…

It’s like a second home to me. Where I’ve found support and laughter and insight. And I’ve found friends. I’m looking forward to meeting them in person and being able to update Twitter and them not think it’s a big deal to check my phone or email or write a blog post while in the midst of a cocktail.

I wish Dawn would have been persuaded by me to attend with me, but she’s an introvert she says and this just isn’t her thing. But I’m going to represent my friend, my online one and it turns out my real life friend, we just have never met in person. What I’ve found in Dawn over the last few years as we’ve been in each other lives through blogging is understanding, encouragement, shared rage and shared joy. I’m honored to be with her working on SfSN. I’m just so lucky she is a part of my life.

That’s the world of Social Media.