« Tournament Time | Main | TGIF!!!!!!! »



Feed You can follow this conversation by subscribing to the comment feed for this post.

This is so sad and beautiful. I am sorry things are hard. I am sorry that on top of everything else you feel bad when you compare O to E and see more clearly where E is not where you would like him to be. I would like to give you a hug and remind you of how far you have all come, but maybe this is where you feel you blow your lead and you just need to work through it and accept that blowing one lead doesn't mean blowing the next.
And you know those deficits of yours you mention at the end--all I can say is, uh-uh. No deficits. That's called being human and full of love and longing and despair and joy rumpled together like a load of laundry.
Hang in there.
Danielle in Zurich

Danielle your comments often touch me but tonight getting such a quick and thoughtful reply from you, (minutes after publishing) half a world away, its as if you just reached through the screen and put your arm around me. It reminds me that even when I feel lost, I never real am. Thank you.

I love that first photo you posted - I often find your photos beautiful, but that one just has a story that shines out.

I hope it is some comfort hearing that people you don't even know, care about you and pray for your family. And I thank you for helping keep me in touch with the larger world outside my small sphere of contact.

Wishing you extra strength,
Nicole in Paris(continuing on the European theme)

Oh, Christy, I know that ache and sorrow too well. Sending you hugs and a hot cup of coffee from the east coast on a rainy day (here)...and hoping that today is a better one. Full of self-forgiveness, patience, acceptance and celebration of all the richness and love in your home. I know it looks and feels differently than you imagined it should/would, but it is there. And it is rich. Love. xo

Oh my goodness - that first picture of him on the rock that looks like an alert seal is fabulous. I want a big big copy of it framed on my wall :)

It is just so hard and so never-ending at times. My worries re Toby are present and future - he's an awesome and amazing kid, but yes, parenting him is tinged with worry in a way that's it's not re parenting his sister. I have my worries about her too but it's quite different - not as deep and to the "core".

Really there's no way through it without the bitter with the sweet though. And you know full well how awesomely great you do at parenting the both of them, PLUS bonus you add so much to the lives of other parents (like me). I'm so thankful you're out there :)

No words, just virtual comfort. Be kind to yourself when your in the trenches

Thinking of you, Christy. So sorry this is an especially difficult time. Love you and hope we can talk soon. xoxo


Seven has been the roughest age for me so far. Xander seems so knowledgeable and clueless at the same time. I'm amazed at how mean he can be to Jona...and over the littlest things and toys. Ugh. The weekends are the hardest sometimes. There is that feeling of forced relaxation and I never feel like I get enough of it. I don't even know what "enough" would be...

Hugs from here in Chicago too. We all have those days where we truly love our 'special' kids, but need a break at the same time. My personal hardest time was when I realized that his younger brother (by 3yrs) had equalled him intellectually and passed him socially. Within the next year, he will pass his brother intellectually too.

Please don't ponder too much about the difference between 'delay' and 'disability', there is such such a fine line between the 2 words.

On those days where you could just use a break, call me! I will come & take Elias for a playdate. He'll have a blast & I would love to be able to help out anyway I can. I'll try to offer more. Sending love from the Schuberts! Beautiful pictures!

...so this morning Elias received his first office referral for pushing his Aide in the face when she asked him to finish his writing. The other kids were getting ready for recess and he wanted to go out too but instead he spend most of it in the Assistant Principal's office and the rest finishing his work.

Then tonight, after writing an apology letter-- in which he chose the words: "I'm sorry for pushing. Next time I won't push. I'll go out for recess when I'm told,"-- he pushed his sister into his easel to keep her away from his markers causing her to bite her lip and scratch her face.

When I went into his room after his time out he sat on his bed smiling at me.


Frayed beyond belief--thank you all for writing, for letting me know you are out there with virtual hugs, or offers of play dates, or words of compassion and understanding. I need it right now and every comment helps.

Lee, Olive is 15 months, Elias seven, and yet I'm entering that hard zone you mentioned. She's surpassed him in mobility, balance, vision, fine motor, and is creeping up to him in social skills too.

My god how do parents survive into grand-parenthood?

Hugs to all!

Christy I'm so sorry. Evan is just so willing to please and he hates to disappoint. He tends to just go to his room until I can regain my equilibrium.

Christy, I commend you with having Elias write that letter of apology to his Aide. It must have really got him thinking about how to treat her next time. BTW, when you DO find out how the other parents survive these early years...please let us know! LOL!

No great insights here. Just another moved reader sending you virtual support and hugs. Thanks for allowing us on your journey and sharing your highs and lows. Though much of what you experience is very specific to your situation the themes are universal.

I am thinking of you and your boy. My son got sent to the office on his 1st day of kindergarten...and I am a teacher at his school. I understand the frustration of not getting your own child's thinking. Hope better days are headed your way. You're a kind and loving mother to son that will learn from you.

** to a son

I don't know, Christy. I haven't commented much lately, because I just wish I had some answers. I wish I could take you by the hand and pull you into a velvet circus tent where a fortune teller could gaze into a crystal ball and give you all the answers.

"Olive has dyslexia," she might say, "but she will become a teacher someday. When gets her college acceptance letter, you will silently cry with relief after she bounces off to her room to call her friends. She is gay, you know. Her future wife is funny as hell and smart as a whip, and Olive will be home for two weeks every Christmas. She will be happy, and she will be able to be married in an America where her marriage is legal in every state. You will live and die by the beta numbers with her wife's every IVF cycle, but you will hold her hand in the moment her child slides into the world with a furious scream. You will celebrate those gorgeous, healthy lungs. Elias will be more famous than Helen Keller and Temple Grandin put together, you know. You will co-author his first book, and be first in line for an autograph for his second. You will walk through Washington D.C. puffed up with pride when he goes to testify before Congress on on disability issues when he's 40. When his luggage gets lost at Dulles, it will be you who rushes disposable adult-sized underwear to him just in time for him to be acknowledged as the gentleman from Alaska. You'll save the day, because you're his mom and that's what moms do. "

We would smile at the fortune teller, you and me. You would thank her and rush out to call Nick with all this new knowledge, and you would be renewed, ready to see your children through every new challenge and fight and struggle that comes between then and now, because you are, above all else, a damn good mom. I wish I could help you see the future, to lay out all the specifics that would give you hope and strength to get through one more difficult day.

Life will hand both your children challenges as time unfolds. But I still believe. I believed in the toddler with the toy cart, taking his first steps. I believed in the pre-schooler in the "school bus suit" and I believe in the young boy who peed standing up, and I believe in this version of Elias, too. I believe he will change his world for the better, and I believe Olive will have an amazing slapshot. I just wish this were easier, and I wish that you had more to go on than faith alone right now.

Wow Angiein NYC can you read my fortune too! That is what we moms all need. Whether your child has disabilities or not!!

One reason I seek refuge in your blog is that you vindicate all the thoughts that I have. It is like you have written out my heart and thoughts with a slightly different context and a change of names. I often tell my husband to come and read your blog and then I relinquish my tears because I know longer feel alone or guilty that these reactions are not just me, but a normal response to the situation. Thank you for the vindication, it truly is therapeutic for me.

And kimberly, its therapeutic for me to write this stuff out of my head, to put it into words and share it so I too feel less swallowed up by the pain and yes, less alone.

Angie, you did it again. Shook me with your wisdom in that creative, intelligent, compassionate way of yours. Thank you for bringing me into that velvet circus tent. I will return here often to read my fortune again, to remember that we can never really know what challenges lay ahead or how we will rise to not just meet them but to invite them inside for some comfort food.

Thank you all for your empathy and support. The last two days have been a bit more peaceful around here.

Sibling stuff is hard even for NT kids. I don't know of any 7 year old who would be happy to see a toddler sibing approaching or who willing shares much of anything. I also can't imagine many kids, again even NT ones, who would be happy to be told to finish their writing while others are getting ready to go outside for recess. Being in group situations is very challenging and provides so many different kinds of stimulus and distraction.
I am not saying that Eli's disabilities or delays should be an excuse for such behaviour but school and siblings provide lots of challenges that would be hard for him to meet even without having to deal with all his physical and neurological challenges.

I just wanted to say something about that delay and disability thing - Years ago it was thought that you only had until a certain age to acquire skills, and past that, forget about it. That is so NOT TRUE. I have seen adults in their 40's with my daughter's syndrome (5p-) learning sign and verbal language that no one thought to teach them or help them with at a younger age. And they had no early intervention. They had risen (or not) to the expectations, maybe had a lot of frustrations in life, but were amazingly capable life-long learners. And I'm talking about severe cognitive impairment. Gave me a lot of hope to see that the "delays" can still be delays, even at an older age.

This post is amazing. You are so honest...you inspire me to be more authentic. Can't wait to see you! Beers on me

Christy, your posts are so vivid and heartfelt - you can put us all right there! We, your readers and friends, react with love and encouragement and empathy and a sense of not being alone in our own situations. We, too, have been overwhelmed and just kept going, as you do. (That may be one of the best life lessons you pass on to your children. They observe it and practice it daily.)

Caring so much makes things hard... I wish there was an easier path for you! It's no doubt hard for you to see it at this point, but you are contributing richly to your children, your readers, and a world that needs more caring in it.

By the way, I'm interested in Elias' fascination with numbers and locations. That may be a strength of his, frustrating as it seems now. (My two sons memorized and recited together all the digits of pi they could cram into their heads - 3.14179 and on and on - for fun!) For Elias, too, numbers may be a source of satisfaction and joy. Wouldn't he make a great architect someday, able to visualize locations and communicate them?

I understand.


It's a beautiful and piercingly painful life.

beautifully written and incredibly photographed. i am so touched by your story.

I know this comment is way late but I am catching up on your posts. I used to follow you on parents. com and am always so moved by your honesty. It is so refreshing to read other moms dealing with the feelings we are to ashamed to admit sometimes. My son has the same little details quirks as Elias. He has memorized the titles, tracks in orders of at least 6 cds at the moment and peppers me with questions pretty much all day about little things I would have no way of answering. It brought a smile to my face to picture Elias asking about the bench, hallways etc, as I just finished answering for the millionth time, "no Travis I dont know how many John Denver Cds there are, or I dont know what track 15 is (when he already knows it :) thanks for your honesty and I am almost caught up, so looking forward to more adventures in parenting!

The comments to this entry are closed.

Become a Fan