Check Yes or No

•September 30, 2011 • Leave a Comment

Today I had to take Elena to the dentist and I had to fill out a checklist of medical issues because this was her first appointment.  No big deal, right?  That’s what I thought until I was confronted with the box for Mentally Retarded.  I accept this medical terminology, but my heart still caught in my throat because the word retarded makes me crazy.  It is all to often used in such a harmful way that now when I see it, even in its proper use, I get a little upset.  I came home and decided to look up the definition of the word and here is what I found.

From Webster’s Dictionary, “slow or limited in intellectual or emotional development or academic progress”.

No big deal you must be saying, this seems like the correct definition to me.  Well I would agree, but then I dug some more.

From Urban Dictionary, “a waste of time, abandoned, abject, abominable, abortive, absurd, afraid, aimless,  anxious, apprehenaive, arid, arrested, assailable, atomic, awful, baby, babyish, backward, bad, banal, barmy, barren, base, baseless, bastard, beastly, beggarly, behind, beside the question, blah, bland, bogus, bomb, bootless, boyish, brainless, bromidic, bummer, caitiffcapricious, careless, catchpenny, characterless, cheap, checked, cheesy, childish, childlike, clichéd, cloying, coarse, colorless, common, commonplace, confusing, contemptible, cotemptible, controvertible, conventional, cool, corn, cornball, corny, corrupt, counterproductive, cowering, cracked, crap, crappy, craven, crazy, crud, cruddy, daffy, daft, dastardly, dazed, dead, deadpan, deficient, degraded, degrading, dejected, delayed, delusive, dense, dense, deplorable, depraved, despicable, destitute, detestable, devoid, diffident, dim, diminutive, dippy, directionless, dirty, disgraceful, dishonest, dishonorable, dismayed, disposable, disreputable, dizzy, dodo, doltish, dopy, dotterel, down, downtrodden, drab, drifting, drudging, dull, dumb, empty, empty-headed, erratic, evanescent, everyday, evildoer, excessive, exhausted, expendable, expressionless, facetious, failed, failing, faint-hearted, fallacious, false, fanciful, fatuous, fawning, featherbrained….”

Reading that definition made me angry.  Angry that this is the way a majority of people use the word, angry that most people think its okay, and angry that one day my sweet girl, who doesn’t not fit into that definition, will one day be confronted with it.

I can accept the word in its medical place, but I can not and will not accept it in any other form — please, won’t you do the same?  My daughter is loving, determined, a blessing, and so much more.

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Nine Years

•August 3, 2011 • Leave a Comment

Nine years ago I said my vows to the man I love.

I knew that he would be the one who would stand beside me through whatever life brought our way.  I knew that he would catch me when I fell.  And I knew that while we have differing opinions on some things that he would always have my back.  That he would be my voice when I couldn’t find mine.

It was a day of celebration because I knew that he was the one for me, that he would be the father of my children, my best friend, and that one I could always count on….and I was right.

These past nine years haven’t always been the smoothest of journeys, but I think that is typical of any relationship, and I think that it has helped Jason and I to learn and grow as a couple.  We have had our ups and downs but through even the worst of arguments we have always come together.  I know that there will be more arguments, but more importantly there will be love and good times and happy memories.

Summer Happenings

•July 17, 2011 • Leave a Comment

This summer we have done a lot of this –

A little of this –

And just a little of this –

It has been a pretty low-key summer thus far, but still great all the same.  I am doing my best to put the schedule aside and just enjoy the time I get to have with all three of my kids with nowhere to be and nothing that we have to do.

Elena has quite a few appointments coming up over the next couple of weeks but most of them are just check-ups with various specialists – nothing to worry about.  We do have our first appointment at U of M with a speech pathologist and I am hopeful that this will be more productive that the session we had with Early On.  Speech development is high up on my list of concerns so my fingers are crossed that this will be a good appointment.  Worry, however, is not on the list of things to do this summer, so worry I will not.  I’m learning how to just go with the flow, to take the good with the bad, and just take things as they come.

I’m off to enjoy more fun with my kids – Happy Summer!

Reflection

•June 13, 2011 • 2 Comments

My sweet girl is going to be one on Friday.  I have been spending a lot of time reflecting about this past year.

I can still remember the feel of her weight in my arms as I delivered her myself.  I remember the terror I felt as I ripped the cord from her neck, and the relief when I heard her cry.  I remember the hot tears that I cried and the guilt that I felt when I was told she had Down syndrome.  I remember the hushed voices of the doctors as they explained all the tests they had to run and how I felt I wasn’t strong enough to handle our new life.

Raising a child with special needs isn’t always easy, but sometimes I find it to be more gratifying.  I loved when Caden and Ava learned new milestones, and I celebrated them excitedly.  With Elena, and the expectation of those same milestones being delayed, I find myself celebrating more vigorously.  I don’t want to take away from Caden or Ava’s growth from infants to the kids they are now, but I know that Elena has to work harder to learn the things that came so easily for my other two, so I will rejoice in these developments for a little longer.  I will cherish her determination and wilfulness to get what she sets her mind to.

I spent a lot of this past year living in fear, but my baby girl has shown me that I don’t need to be there.  She will never have to prove anything to me, but her shear determination already has.  She will hit her milestones, delay or not, and we will celebrate them.

My baby girl has helped me to find my voice.  I will not stand down when she needs something.  I will not be backed into a corner.  I have always been the one to try to smooth things over and compromise just to defuse a situation.  I will not tolerate ignorance and I won’t stand idly by and listen to people say things that are wrong and hurtful.  I know that going in guns blazin’ isn’t going to solve issues either, but I know that I won’t accept less that what she needs either.  I am learning the fine art of advocating to ensure she gets what she needs.

We have come a long way, and I am looking forward to the next year and all the triumphs we will have along the way.

Hiatus

•June 2, 2011 • 1 Comment

I needed a break.  A break from everything, which meant I wasn’t even going to write.  Writing is therapeutic for me, but often in therapy we have to talk (or write) about the emotions that are weighing heavily on us, and I needed a break from those too.  So instead of writing, I focused on my kids and how happy they make me.

I have been reflecting a lot about this past year as we get ready to celebrate Elena’s first birthday.  It has been a hard year, but a good year.  I have learned a lot about myself and that I won’t settle for anything.  And my kids are proving to me everyday that I shouldn’t.

I have spent a majority of this past year living in fear, and I am choosing to not live in that place anymore.  I have a beautiful family and as long as I hold that belief in my heart, I know that we will move forward with broad shoulders ready to tackle any obstacle that comes our way.  I have learned over this past year that I am not in this on my own and I have people I can depend on for help and support.  My family is happy and loved, what more could I ask for?

 

Hot Mess

•May 10, 2011 • Leave a Comment

I suppose that set-backs are a normal part of all of our lives, but I am having what feels like a major set-back.  I am truly so very happy that Elena’s medical issues have been dealt with for the time being, but it has left me with some extra time to worry about issues that I really thought I had dealt with.  I truly have a type-A personality and have a difficult time relinquishing any control.  I like lists.  I like schedules.  I like having answers.  I don’t like to feel as if I am spiraling out of control and just waiting for the next bomb to drop, and that is how I have felt this past week.  The fact that we have been insanely busy hasn’t helped me to have a quiet moment to sit down and try to decipher all of this emotion.

Along with these worries for Elena that I thought I had put to rest, I am still worrying that Caden and Ava will feel over-shadowed by Elena’s extra needs.  Because I have started to irrationally have these thoughts as well, I think I am starting to over-compensate and go against my typical parenting style.  While I have never really started in a place of “no”, I’m not the kind of mom who feels like I have to say “yes” to everything my kids want or I will be depriving them.  I think that kids need structure and to know that they won’t always get their own way.  I also think that I need to give my kids the benefit of the doubt, because I know that below all my fears lies a peace in knowing that I have three great kids.  A peace in my soul knowing that my biggest two will always be there for my littlest one and I just need to find a way to clear out the rubble that it littering my inner sanctity.

“Don’t be afraid to weep – it will free your mind from sad thoughts.”

Easter

•April 26, 2011 • Leave a Comment

I love holidays.  I love getting my kids dressed up just because I can, in the name of holiday.  I love the anticipation of getting ready to go spend a day with our family, and for some reason the title of Easter or Christmas or Thanksgiving just seem to make it more special than any other visit.  I love that my kids stuff themselves with candy, bite after bite, because they know I will be stopping them and they have to get in as much as possible before that time comes.  I do not love the sugar crash that is soon to follow.

Please note, my grandma is not too happy here because she doesn’t coordinate with the rest of us — but I think it is a great picture anyway.

Sometimes holidays are a little rough for us because we can’t be everywhere, and I, of course, want to see all of our family.  We do our best to rotate so that we spend an equal amount of time with everyone, but the scheduling can get a bit tricky.  We spent this Easter with Jason’s mom and sisters and had a very nice afternoon, Easter egg hunt and all.

I was exhausted after this sugar-fueled day, as I am after all sugar-fueled holidays, but it is always worth it to have a day with family.  I have said it before, and I will continue to say it, I would be nowhere without the support of our family.

We are back to our busy schedules this week with school, PT, infant group, dance, baseball, and soccer.  Some days we find a way to coordinate everything and some days I just want to throw my hands up and give in.  I think it is important to keep the kids busy and active but I think next year we may have to limit our activities to one at a time.  As my kids get older, the scheduling gets more complicated and I need to figure out a solution so that everyone is happy and I’m not running in 50 different directions.