Tuesday, May 31, 2011

the day to day

Sometimes I feel that people are drawn to the dramatic aspects of having a child with special needs, but forget the much needed celebrations of day to day.

For example: the diagnosis. Attention is showered on the new baby, some overly positive to compensate for the fact that said congratulator has no clue really what to say, some negative and audaciously full of pity because, once again, no idea how to respond.

Each positive word, no matter how awkwardly worded, is appreciated like the balm that it is to the broken mother's heart.

Pictures are posted- comment after comment pours in about the cuteness of the "different" baby, in hopes of helping the parent still feel as though their baby is loved.

People are encouraging. Positive words are exchanged.

The special needs parent feels uplifted, chosen, thankful.

If the child has perhaps a leukemia scare or a surgery, such outpouring is once again evident. And again, balm-like in its therapeutic powers.

However, inevitably circumstances even out into the humdrum of the day to day.

Comments aren't as plentiful. Observers forget about the drama and return to their own lives, happy that they can turn off their computer and be transported back to the life of parenting normal children.

The day to day is where it can really get you.

Wondering what the function level of your child will be-feeling guilty if you choose another activity over extra therapy time and feeling that perhaps might be the difference between your child growing into a capable adult or dependent on the world for every slightest need.

The day to day leaves you full of tense wonderment for your child's future.

Yes, of course, you accept the diagnosis. That's all part of the drama.

But on those boring days where nothing exciting happens, that's when you're left to doubt your parenting job and drown in the many emotional traps of love versus fear.

You find yourself celebrating even the smallest show of cognitive activity-such as naughtiness. Surely that is your child's way of expressing and exploring the world with the same curious mind of any normal toddler.

Each naughty activity becomes an unbelievably exciting display of your child's genius as you silently encourage different acts of rebellion just so you can once again see them making a decisive choice on their very own, showcasing a true mastermind of intellect hidden behind the almond shaped eyes and distinctively carved chin.

Small shuffling that turns into long paths of furniture cruising leaves you feeling as though your baby will be set to run a full fledged marathon in a couple of months....and you find yourself beaming with ardent pride at the mere thought of your child's chubby leg engaging in the deliberate high step with brow earnestly knit in concentration as each and every muscle works overtime just to accomplish the simplest of motions.

If a small hand accidentally forms a sign that means "eat" that you have been rehearsing for months and months, you shower food down upon your unsuspecting child just in case they were actually asking for a snack, and rejoice in the possible progress regarding their sign language skills and then prepare yourself to eagerly wait weeks more to see the same sign repeated.

The day to day. The smallest of accomplishments. That's where the true drama lies.

And that's where the parent of the special needs child needs the most support, encouragement and love.

Things that are easy for your child to do...are incredibly difficult for mine. Each act of physical prowess or mental understanding that your child could do months ago, mine is just beginning to slowly explore

and I celebrate, post and brag about the slightest expression

of my daughter's true brilliance

hidden to the casual observer, but revealed to me, bit by bit

through the day to day,

occurring just as I'm about to give in to the fear.

I write this to thank you for celebrating with me and for your many kind comments for the day to day activities that I elaborate on in painful detail at times here on my blog.

Thank you. I appreciate it all more than you know.

13 comments:

  1. I hear ya!! Though everything is harder for them, That makes every kiss more meaningful!

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  2. This post is so true...thanks for sharing your "everyday" with us!

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  3. Thank you, Deanna, for this gentle reminder to me as your mother that I need to be diligent and faithful to encourage you more. You are a wonderful mother and I am so proud of you! You are blest to have Addison and she is blest to have you! I love you!

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  4. right on. thanks for your post. rejoicing with you and celebrating your sweet girlie!

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  5. I feel the exact same way. I have been truly blessed to have found a wonderful group of blogging ladies....:) And some other special mommies too, as well as friends and family, who don't miss a chance to celebrate every little thing with me, and encourage me when I am feeling that slump of Liddy's bad days. The days where she screams any time anyone touches her but us. The days every once in a while where it seems like she almost regresses (temporarily thankfully). When she's not her normal bubbly self. There is plenty of support there, and celebration as well for these tiny accomplishments (like Liddy passing her keys from hand to hand!) That's what makes US awesome. :)

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  6. I actually feel sad for the parents of "typical" children who may take each of those teeny tiny (but HUGE!) accomplishments for granted because I feel that they miss out on so much. That naughtiness example is a great one!! I am so thrilled at each and every little thing my daughter does, and get to celebrate something each and every day.

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  7. I love hearing the everyday of your life with Miss Addison.She really is a beautiful baby.:)Thanks for sharing her with us.....

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  8. I read this last night, it made me cry so I turned the computer off and went to bed, lol...I think this was one of your best posts! Or maybe just one that touched me the most.
    I feel the EXACT same way! Whenever I post a status on facebook about some new thing Russell is doing, or a picture or video of him doing a small action or word, a post all about bending his knees or pulling to stand...I wonder if people are rolling their eyes and thinking "big deal" or if they truly "get it"...If they REALLY understand how amazing and exciting it is and how hard the milestone was worked for.
    After raising four "typical" kids, Russell has been a completly different experience and I often find myself thinking about just how much I missed with my other kids...I dont know if or when they stacked blocks, I dont know when they pulled to stand or started cruising...And when they did do it, it was blown over and there was really no excitment at all.
    We are on an amazing journey, and I agree with Becca, parents of typical kids DO miss out on the little things. We are so blessed!

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  9. I loved this post, I feel this post! I am always grabbing my camera and taking pictures or videos of the new "small" thing Sutter is doing and when I tell or share it I wonder if they really get why that small task is a HUGE accomplishment for Sutter?! I also like the naughty, it makes me smile to think he "knows" what he's doing and that he's not suppose to do it!

    I'll be here to celebrate with you - big or small they all count!

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  10. very well said!
    Last night we had a huge celebration for my 5 yr olds first tooth falling out. Took pictures, called grandma, clapped, and had a special treat for dinner. It made me wonder - do typical parents make that big a deal out of such a tiny rite of passage? Am I overly aware of every little thing related to my daughter because we have watched her so closely & celebrate every step, word and logical conclusion? I feel thankful that I notice it all and love it when others seem just as happy for her, every bit of everyday encouragement that we are doing something right make me so much more secure.

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  11. I wish we lived closer so I could see and celebrate Addison's milestones in person! But I am so glad you take the time to blog and FB about her "little" (read: HUGE!) victories. Chris and I are always over here saying to each other, "did you read Addison's latest??" We're really THAT excited when your little one makes new faces, says new words, catapults her milk bottles :) and demonstrates her true personality.... Thank you SO much for publicly celebrating the day-to-day milestones with us all!

    xoxo

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  12. Being the grandmother of a five year old precious girl on the autism spectrum, I relate completely with this post. We DO rejoice with you! We DO see your child as beautiful (she really is!)! We DO understand the struggles snd the joy in the successes! And we WILL continue to pray for you and your family. It is the most we can do.

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