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April 18, 2007

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Tara

Your post has me in tears, too. You are stronger than you think. I consider you and Elias heros - you are both incredible people. I wish I could take away your fears and worries. I am sorry that it hurts when you see other toodlers running through the mall. I suffered a bad pregnancy loss and have been battling with infertility for years so i can relate (I think) to some of your feelings: Why not me? Why can't I have a healthy pregnancy/child? Why can't I get to experience all those joys that others get to experience with their children? Etc..
Please try to remember the reasons why you are lucky, and you are so lucky in many ways. I can imagine it is so hard on you and some days it must be hard to keep going but keep going - you have a beautiful child who needs you and hopefully as time passes he will be able to communicate with you. I pray for you both.

JenniferB

Oh, Christy -- I have been whining about having to have a hysterectomy at a young age, and "only" having my 2 children, when really I should be rejoicing for them and continually expressing my gratitude. I am so sorry your pain and struggle will not end with a textbook happy ending, but I am believe that you and Nick and Elias have a beautiful kind of happy that no one I know has ever experienced. That perfect gratitude and enduring hope in the future. Wow. Cry, you deserve to, and then please smile when you read this, knowing that you are not alone.

Deidre

I love you Christy, and I'll be sending lots of love your way today.
D

Mom and Dad

Christy, You and Nick have so much love to give to Elias that he can't help but become an independent young man. Elias is just taking his time. Remember in your profile you said "Elias who continually teaches us about patience and limitless love." Heed those words - they are so true. Children born with no disabilities can be trying - more so than kids with disabilities. Start smiling and give Elias a big hug and no more dwelling on the past - look to the future with optimism. There will be many obstacles yet to come but look what you have overcome so far!!

Tracy

I read your words and hear the echo of my thoughts. the ones that I haven't been brave enough to post. The ones that say - what if what if what if. And I have to stop again and tell myself to stop saying what if. To focus on now. To focus on doing the best I can for my little guy.

But that echo is still there in the back of my mind. Mine says - what if he never ever talks. what if he never even communicates well. what if we never figure out what to do. what if no matter what we do, nothing helps.

and again I say to the what ifs - stop. what if doesn't help me, it doesn't fix anything, it doesn't even have a purpose other than to disquiet my soul.

sending hugs and prayers from someone who is in a similiar but different spot.

Kris H.

Sending love and joy your way...

moreena

I know this anger, too, even though mine is not exactly the same as yours. It spurts out in all sorts of unpredictable directions. I'm glad you're speaking it, allowing it a voice, and then watching it ease away back to the place we send our troubling thoughts, once we've allowed them their due space.

Wishing you strength and peace.

Deidre

I've been thinking about your post all day and had to come back. My brother is now 15 and my parents are fighting to get him into a second grade class, which would be a huge stretch for him. He doesn't talk, he doesn't hug, he doesn't make eye contact, he likes to go around the house without clothes on, he doesn't do all the things that 15 year old boys "should" do. Last time I was home I asked one of my younger sisters if she ever thought about what we were going to do with Phil when our parents die or get too old to care for him. She just looked at me and started crying and shaking her head so I dropped it, knowing the "what if" will eventually be a "now what?". All these years I have really missed out on seeing my brother for who he is and instead I have focused on what I wish he was, or what I wish he wasn't. I know that isn't your situation with Elias but your words made me think about how I have defined my brother all of these years. I've never said any of this, but I thought I should let you know you aren't alone, even though your situation is so different than mine. I think all the guilt, anger, and sadness deserve air and acknowledgment and they may never disappear but hopefully they lessen. Love you and sorry for the long comment.

Kyla

Oh, Christy. Its okay to feel this way. Your worries and fears and disappointments are valid. The past has been difficult and the future is unknown. It is hard.

Imagine that KayTar and I are there with you guys...KayTar and Elias can parrot to each other and you and I can take a little break as we watch with wonder at our special kids whose habits (that sometimes drives us crazy) complement each other perfectly. And most of all, we could know that we aren't alone.

I wonder about the future sometimes, too.

Christy

D, not too long a comment at all, it helps to know that these feeling are understood. So thank you--thanks to all of you for sharing. As Moreena said, I need to give words to my fears, give them space, so that they don't keep knocking around inside. I won't stay in this ugly place for long but i need to recognize it in order to deal with it. And writing is my way of working things through, not a permanent fixture of who i am.

Jodi

I just wanted you to feel my support Christy.

paige

Lord, honey! Of course you're angry and sad and bitter sometimes. You won't be in this bad place long, though you'll revisit it.

No one knows how their kids will turn out, just remember that there are no absolutes with the human brain.

If I were closer, I'd come over with a big batch of homemade soup and biscuits...simple carbs are GREAT mood enhancers.

Hang in there, you'll find your balance again.

Mae Ann

Christy, I am listening to you, and feeling for you. Writing your words, your thoughts, your fears, your loves, will continue to empower you and ground you. You are entitled to all those feelings. You are a very special person, a wonderful mommy and a very talented writer.

Angie

I'm here, listening and reading. I'm here. That is all.

Mel

It's okay to have these feelings. We all have our ups and downs and you will get through this one. ((HUGS))

Jen

I'm here too Christy, no smart words except to say I admire you so. Many hugs.

Nelba Vercuil

Even the most courageous and most positive of us can only take so much and no more. Thanks for this post. It echos so many of my own thoughts. The one thing I want more than anything else for Loren (17 months), is being able to communicate.

And Christy, my own healthy full-term three-year old (birthday also Feb)also repeat rather than answer. It is only the last couple of weeks that he even answers "yes" in response to a question. Hang in there.

Sara

Just a quick few comments - first, the "up and down" (down for now) is totally normal and to be expected. It just is. Second - in our experience - we have infinite patience at times for Toby reaching milestones at his own pace - but there are a number of times where he has taken so long to get there that we start to grapple with "well, he may not get there". That's when he gets there ROFL. Like talking - we had just starting thinking about him not having productive language - then out popped his first word - at 26 months of age.

This is a long way of saying - yes, Elias has "issues". But try to take it a day at a time - he still has SO much time ahead of him and his little brain is still sorting stuff out. Mama worries are to be expected - but know that he has years ahead of him before you know what he'll have on his plate as an adult.

Hugs -

laura

i will make a confession....as heinous as i believe this tormented man's final acts were, my heart ached a little for him, especially when people talked about his whispery, quiet voice...a thread of fear made a groove in my heart as i looked at my little boy with his quiet, whispery voice. i don't dare voice these out loud in real life because people will look at me cross-eyed...what you sympathize with this monster???!!!
we are in pain for people thousands of miles away and to make it real i think we find ourselves projecting onto those that help us identify, no matter how remotely, with this tragedy.
i am looking at these events and resolving that wherever we end up down as my son grows i will continue to watch closely ever ready to seek help, ask for help, demand help and i will continue to pray just as i have done everyday as i have been doing for over 5 years....pray A LOT!!!
hugs, christy.

RAS

Don't have much to say, but if it's not too weird coming from a complete stranger, consider yourself hugged.

Anno

Hi buddy, I hope that you are at peace today. I love you and am thinking of you and missing you as always. Lots of love and hugs from the other coast!

Kristin

I can only try to imagine what it is like... despite all the time I spend with ¨my¨ kids, they are not mine. I am not ¨mom¨... they are not reliant on me.

You try to envision what life for Elias might be like, but it is IMPOSSIBLE to know. I think of all the things that happen in my life, the progress of ¨my kids¨ & the events occurring in the live´s of other people I know. Things I never would have dreamed...and the reality is most often far better than anything I could have imagined.
(definitely not every detail, but the big picture)

You are so strong. You are such a good Momma to Elias. You are entitled to you ¨moments¨ (or days, weeks, months) of question.

If only we could predict the future?! But what fun would that be? We couldn´t spend our days asking a million questions or searching for another ounce of patience.

I wish I was there to give you a big hug!

See you soon!

Bon

i've been slow to comment but i just wanted to say that no, it's not fair that one little boy should have to be burdened with so many challenges, and i hope, for both your sakes, that in the long run communication doesn't turn out to be one of them. and i feel the deep pain and fear in your words and i know you don't live in that place but i think it's good and honest that you honour it, too, by giving it voice.

peace.

Bon

i've been slow to comment but i just wanted to say that no, it's not fair that one little boy should have to be burdened with so many challenges, and i hope, for both your sakes, that in the long run communication doesn't turn out to be one of them. and i feel the deep pain and fear in your words and i know you don't live in that place but i think it's good and honest that you honour it, too, by giving it voice.

peace.

Bon

crap, Christy, sorry about the double comment. i'm having typepad issues.

i also wanted to add that, for no particular reason except i guess how primary verbal and written communication are to me, your fear that Elias will not communicate, that you will never fully reach him, breaks my heart in a particular way that goes deeper than all the others, because i think i recognize that fear.

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