Sunday, May 15, 2011

Calvin update

It has been quite a while since I posted about Calvin and how he is doing. Along with that comes my feelings and how I'm doing with Calvin. Overall things are drastically different than 12 months ago. It was last May 12th that the ultrasound showed Calvin's heart defect. I followed up with the cardiologist on May 20th when I had an amnio, and found out Calvin has Down syndrome on May 27th. One year.
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It is unbelievable at times. I look through books and see pictures and remember how hard it was to "see" Down syndrome, or to read those words or hear things such as "low muscle tone, mental retardation".

I know I have almost completely healed. Calvin is so amazing, how could I not?
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Calvin continues to have weekly Occupational Therapy. I am struggling with some inner guilt, high level feelings of responsibility, and even some frustration in regards to his physical and verbal development.

Sometimes it is hard to be the one who carries around the to-do list: Set up hearing eval follow-up, play with him, time for therapy, provide more stimulation, feed him, love him...you get the idea.

It is different than it was with Evan and Nolan. There was a general assumption those two would learn.

Evan could pic out a giraffe in a pile of toys when he was 9 months old. He could find the purple ball and sign 'more' right around the same time. He's a smart kid. He was HIGH needs, but smart. Nolan; he could make the best motor noise with his little lips at the age of 4 months old. He was also on his hands and knees at that age. He is physically sound, we'll say.

Now, take your typical mom worries and add on Down syndrome. This is not a "poor me" session. It is reality; my reality. I find myself getting defensive to those out there that minimize it. Why am I feeling as though someone is minimizing it? I guess there are still feelings to work on. I take responsibility for that as well. Heck, I'll take responsibility for all that is mine.

I need to end this and get to my book: "Early Communication Skills for Children with Down Syndrome". Don't get me wrong, it's not a bad book AND I should just be grateful I have a book to help. But sometimes I find myself whining inside "I don't want to read a school book, I don't want to learn these things, I just want to live life and feel free of this burden". So, God, I'm turning this one over to You. Afterall, I just want to love Calvin; not feel such a sense of frustration and guilt and responsibility.
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10 comments:

  1. I loved this post! I too remember those feelings in the beginning. All the hurt, the pain I felt when reading about Ds. And somehow over time those feelings have faded.
    I have struggled at times too with all the "stuff" that comes with Ds...At times Russell has felt more like a project, something I have to read about, learn about, work with...Everything came so naturaly with my other children that it has taken time to get use to things with Russell. For the most part I just try to relax a little and just let him be a baby...And I TRY not to feel guilty about the PT and OT stuff we could be doing more of. Its tough though, not to feel responsible for everything he is doing or NOT doing yet...I hear ya! Thanks for sharing your feelings, lets the rest of us know we are not alone!
    Beautiful pictures too :)...Loved the last one!

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  2. Oh how I can relate to your last words. It is SO EASY to feel guilty for all the things I am NOT doing to help Wesley. I have to keep reminding myself that despite the fact that Wesley does need more help to learn things, I also want to give him a fun childhood. I want him to just play with his big brother and explore the world as he is able to, rather than try to incorporate therapy into every second of the day and feel guilty when I haven't (which is always).

    By the way, I just noticed that all your boys have J middle names. I love it!

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  3. Ditto to your sentiments as well as the comments- lots of guilt going on here too at times... I have the communication book as well as several others- they sit and collect dust. Lol I will read through them one of these days...

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  4. Wow. To read all those sentiments, and remember so clearly. I still get worked up over the way some people minimize. I think they are trying to be kind or encouraging. Just isn't the right reaction. It's hard work.

    I think once we got past infancy and Charlie had a good set of skills beneath him, everything started to feel less 'forced' when it came to parenting. We are to the point where we know he is learning. And we can sit back an be more patient--plus he is going to school and that helps it to feel like all the pressure is not on me.

    Anyway, he is so precious. I'm glad you feel you've healed.

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  5. I love your post. I can completely relate as well. It was hard for me to let go and not think about "therapy related play" all the time. I wish I would have enjoyed the stage you are at more because they grow up too fast. So, I am so glad you are enjoying Calvin and feeling so healed! The toughest thing I still even wrestle with now is letting Kristen just be a kid and not forcing every single moment of her day into some "learning, therapy" type of activity. She is older now and has a fierce sense of independence which stops me in my tracks and reminds me to let her play...her own way! :)

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  6. What a gorgeous boy!!! SO beautiful!! I remember those days...I do...the only thing that I can promise you is that, like the previous posters said, it comes more and more easily...After you do all your homework at the beginning, then it's just kinda a check list at the back of your mind instead of a road map dogging your every step...

    I do suggest though, that if it becomes oppressive, take a month off..and just be a "normal" mama...take a vacation from worry and therapy...it is healing... :)

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  7. I love that fuzzy head of hair! So cute. :) And I agree, it is hard some days to get through our own to-do list, much less adding in OT, PT, ST, doctor's appointments, etc etc etc. It is overwhelming. But, it does slow down. I feel like this year, with Coop in preschool, we finally have caught a breath. He gets most of his therapy while in school, so we don't have people coming in and out as often. The doctor's visits are still there, but that is just because of some unlucky health concerns Coop has. It'll get easier! :)

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  8. Oh I could just eat Cal up...what a sweet boy! So stinkin' cute! Great post again, mama...I can relate to many of the feelings described above-You are doing a great job!!

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  9. I think we all go through those feelings and it's completely normal and OK. I hated that Lily had to work so hard and other kids didn't. I never felt like I was doing enough. I can't tell you when all those feelings went away...but they did. HUGS!

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