tag:blogger.com,1999:blog-5259855797759786392024-02-02T13:00:36.531-05:00The Retarded MotherOK, I know it's not politically correct to use the word retarded. But, what if it were not a "bad" word? What if you hadn't had a negative reaction when you saw it in my blog title? Search your heart. Rethink this. My son has Down Syndrome. He lives in a world in which everybody treats him like he's "retarded." I'm his mom. My son teaches me so many valuable lessons that I am often too "slow" to get. I'm the Retarded (Loving) Mother.The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.comBlogger142125tag:blogger.com,1999:blog-525985579775978639.post-53467956247304873812016-09-13T20:58:00.002-04:002016-09-13T21:06:18.984-04:00Thank you for the donuts. <div class="separator" style="clear: both; text-align: center;">
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<span style="color: #632035; font-family: "georgia" , serif;">Taylor's precious older brother had to have a heart-to-heart/very
difficult conversation with me last week. He said, "Mom, face
it: people like Taylor are marginalized. You have<i> got </i>to accept
this "<br />
I cried. I do not want this to be true. But if I am honest,
I have to accept that what Cole was telling me is true---in the world in which<i><b> I </b></i>live.<br />
Frankly, for years, I was one of the worst "marginalizers"
around. I did not go out of my way to make folks who were
different feel welcomed and included. What's so weird is that I have
always viewed myself as being so big-hearted and open-minded.
BUT....nope. I was not an "includer" of those who were not like me. <br />
I sat with <i>my</i> group, socialized with <i>my </i>group, and lived
within <i>my </i>normal group boundaries.<br />
Now, I see it all from the flip side. <i>My</i> group has
changed. I hang out with people who ride the "short bus". (Don't laugh. You know what I'm talking about.) </span></div>
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<span style="color: #632035; font-family: "georgia" , serif;"> I am now on the outside looking in.<br />
Honestly, it leaves me feeling vulnerable many days. <span style="font-family: Georgia, serif; font-size: 10.5pt; line-height: 115%;">It</span><span style="font-family: Georgia, serif; line-height: 115%;"> took being a mother to
this <i>marginalized</i> miraculous gift- of- a-son to explode my
heart----upsetting my deeply rooted beliefs about.....well....about everything.</span><br />
Who could <i>not</i> love this boy of mine? I
really do not get it. </span><br />
<span style="color: #632035; font-family: "georgia" , serif;">But, marginalized he is---for real.<br />
I am thankful on both of my knees that I was not allowed in this life to
miss out on learning such profound lessons and truths---about what <i>really </i>matters.<br />
Thank you, God, for the donuts.<br />
And for all of us---whether we're outcasts or in-casts, thank you, as we
learn.<br />
And that's my prayer.<span style="font-size: 10.5pt;"><o:p></o:p></span></span></div>
The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com2tag:blogger.com,1999:blog-525985579775978639.post-45050259249578987102015-10-23T18:08:00.002-04:002015-10-24T08:59:51.585-04:00Music from the Heart<div class="separator" style="clear: both; text-align: center;">
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My brother-in-law, Gary, sings opera, loves opera, and<i> knows</i> opera. Gary has often said that the tenor, Mario Del Monaco had the kind of voice that could awaken the soul and music in anyone who heard him. Yesterday, Taylor heard Del Monaco sing. Right here in our kitchen. Aunt Martha worked the computer. As soon as brother Cole saw Taylor's response to the music, he began filming. Taylor sang from his heart. Unabashedly. Openly. Freely. With gusto.<br />
His soul was talking/connecting/singing back to the tenor who had awakened something inside of him. <br />
This is a rendering of a raw, unfiltered music connection ----straight to the heart/ears/soul of a precious human who has no preconceptions about what "good" music is. Taylor just sang what he heard. Would that we could all sing and dance----as if no one were watching. <br />
Sing on, Taylor. <br />
Sing on---each of us.<br />
The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com2tag:blogger.com,1999:blog-525985579775978639.post-47819320020573904212015-08-10T16:40:00.001-04:002015-08-14T08:05:38.142-04:00Arms and Miracles<iframe allowfullscreen="" frameborder="0" height="344" src="https://www.youtube.com/embed/pXV1ah4h0oQ" width="459"></iframe><br />
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Taylor is 31. Thirty one.<br />
I have had 31 (thirty one) years to do this life with him. I gave birth to Taylor when I was 31 (thirty one.) So, I knew myself and had grown all sorts of beliefs and convictions on my own before this imperfectly perfect child was placed on my chest and on my heart. Now I have spent 31 (thirty one) years undoing or re-doing or redefining or trying to make sense of my life----and my life with Taylor. My life with words like retarded, inclusion, special needs, handicapped, mentally challenged, "suffers from", "debilitated by".....<br />
Don't you think 31 (thirty one!) years should have given me plenty of time to figure this all out?<br />
Spoiler alert: No. There has not been enough time yet to figure out this life. Even given the 31 years. I am such a slooooooow learner evidently.<br />
Yesterday when Taylor was using his arms again in the pool---for the first time in maybe 8 (eight) years----I was struck dumb with the "miracle"---medical, divine, mysterious-- miracle of it all. For years we have gone to this same pool to swim. For the past ten years and though five massive spine surgeries, I have spent most of the time in the water weeping as I have held Taylor's head so he could float on his back. It was the only position in which he seemed to not be in pain. I have prayed a million prayers and sobbed on a hundred Thursdays that my sweet son might feel better---might be able to do something in the water other than just float. And look-a-here.<br />
"Well, darn if it ain't a miracle right here and now on this ordinary Sunday." I heard myself mutter.<br />
Taylor used his arms. Pain free.<br />
I might have missed this miracle because I was thinking about how fat I looked in my bathing suit----how I needed to color my hair---how I can't seem to make intelligent conversation about books or music anymore.(Could I ever?) I might have missed this miracle because I was thinking I needed to go to Lowe's to get some carpet cleaner or had lost myself in counting all the calories I had eaten since lunch. I might have missed this miracle because I get so caught up in the intoxicating myth that everybody else (you) has it all figured out. I let thoughts like that distract me and I fling myself far from my center-----don't barf now....but from that center that is the divine and "whole" place in each of us. Yep, I can go way off course and lay myself out in my own self-made ditch. Ditches sometimes feel safe. I find comfort there. (Another myth)<br />
But then I miss miracles. Extra-ordinary miracles.<br />
Taylor used his arms. He swam without pain.<br />
Maybe this is all I have to know.<br />
Maybe it's all figured out.<br />
Life is just waiting for me to notice.<br />
Mysterious. Miraculous. Divine.<br />
Pay attention, all ye...and me.The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com10tag:blogger.com,1999:blog-525985579775978639.post-54628437188173142102015-04-02T17:36:00.000-04:002015-04-02T17:41:11.792-04:00An Easter Sermon<b style="background-color: white;"><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Driving down Alps Road in Athens last week, Taylor reached over and took my hand. </span></b><br />
<b style="background-color: white;"><span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><br /></span></b>
<b style="background-color: white;"><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">In his gentlest voice, he said to me, "Taylor perfect."</span></b><br />
<b style="background-color: white;"><span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><br /></span></b>
<b style="background-color: white;"><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">A thunder-clash of emotions clutched my insides---and then found a soft resting place deep within. </span></b><br />
<b style="background-color: white;"><span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><br /></span></b>
<b style="background-color: white;"><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">"Yes. Taylor perfect," I vowed. </span></b><br />
<b style="background-color: white;"><span style="font-family: Georgia, Times New Roman, serif; font-size: large;"> Taylor perfect. </span></b><br />
<b style="background-color: white;"><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">And so it is.</span></b><br />
<b style="background-color: white;"><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">And always was. </span></b><br />
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The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com1tag:blogger.com,1999:blog-525985579775978639.post-66208658439646890552014-03-05T19:52:00.002-05:002014-03-08T10:26:00.701-05:00Whatever it takes, for as long as it takes.<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "Baskerville Old Face","serif"; font-size: 14.0pt;"> For
years when Taylor and I have gone to visit my sister in NYC, we forego
Taylor wearing his J.C. Penney pajamas and opt for the T-shirt and sweats that
are always tucked in the guestroom chifferobe. Through four spinal
surgeries in ten years, Taylor has sported this Tee on each of our many trips
to Soho. My sister and I have always noted the slogan, but laughed it
off. "Whatever it takes for as long as it takes." Yeah.
Yeah. We nod and shrug and just sort of breathe in the fact of Taylor
being Taylor---special needs and all. </span></div>
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<span style="font-family: 'Baskerville Old Face', serif; font-size: 14pt;"> Taylor is 29 years old.
The</span><span class="apple-converted-space" style="font-family: 'Baskerville Old Face', serif; font-size: 14pt;"> </span><i style="font-family: 'Baskerville Old Face', serif; font-size: 14pt;">whatever
it takes</i><span class="apple-converted-space" style="font-family: 'Baskerville Old Face', serif; font-size: 14pt;"> </span><span style="font-family: 'Baskerville Old Face', serif; font-size: 14pt;">part
of this t-shirt saying---in real life, some days gets worn and threadbare and
all crumpled up. Some evenings the</span><span class="apple-converted-space" style="font-family: 'Baskerville Old Face', serif; font-size: 14pt;"><i> </i></span><i style="font-family: 'Baskerville Old Face', serif; font-size: 14pt;">for as long as it takes</i><span class="apple-converted-space" style="font-family: 'Baskerville Old Face', serif; font-size: 14pt;"> </span><span style="font-family: 'Baskerville Old Face', serif; font-size: 14pt;">part
seems endless. I don't want to cut up his food or brush his teeth or sit
and watch</span><span class="apple-converted-space" style="font-family: 'Baskerville Old Face', serif; font-size: 14pt;"> </span><i style="font-family: 'Baskerville Old Face', serif; font-size: 14pt;">Bambi
</i><span style="font-family: 'Baskerville Old Face', serif; font-size: 14pt;">again</span><span class="apple-converted-space" style="font-family: 'Baskerville Old Face', serif; font-size: 14pt;"> </span><i style="font-family: 'Baskerville Old Face', serif; font-size: 14pt;"> </i><span style="font-family: 'Baskerville Old Face', serif; font-size: 14pt;">on
another Friday night. </span></div>
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<span style="font-family: "Baskerville Old Face","serif"; font-size: 14.0pt;">But then comes morning. Thank
God. New light. New hope. New ways to see old beliefs. Come morning, the Tee shirt comes
off----but not so much the forever sentiment. <o:p></o:p></span></div>
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<span style="font-family: "Baskerville Old Face","serif"; font-size: 14.0pt;"> Sometimes a line from one of Mary Oliver's poems finds its resounding way into my head: “Tell me, what is it
that you plan to do with your one wild and precious life?"<span style="background: #F7F7F4;"> </span></span><br />
<span style="font-family: "Baskerville Old Face","serif"; font-size: 14.0pt;"><span style="background: #F7F7F4;"> And I pause. And then panic.
I hear myself shouting, "But this is NOT enough! Is this a precious
life I am living?" Let's face it, it is not a wild life at all.
Or is it? </span><o:p></o:p></span></div>
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<span style="background: #F7F7F4; font-family: "Baskerville Old Face","serif"; font-size: 14.0pt;">
Taylor's "imperfections" are so glaringly obvious (and
oftentimes offensive) to the outside world. So many of us are so constricted by our own compulsive need to be perfect that it becomes
uncomfortable to see him without that needling reminder of our very own flaws/weaknesses/holes---or what we see as such. It is just more comfortable to look away. I am you. I do this too. <o:p></o:p></span></div>
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<span style="background: #F7F7F4; font-family: "Baskerville Old Face","serif"; font-size: 14.0pt;"> We---most
of us---have such a hard time loving the parts of ourselves that just don't
measure up. It is almost not-bearable to accept and then love those
parts of ourselves that are IMperfect. You<i> know</i> this is hard. We
give lots of lip service to, "Nobody's perfect," and yet
we all spend our days moving Heaven and Earth trying to be. Trying to
be....needing to be...perfect. You know it's true. Be
honest. </span><span style="font-family: "Baskerville Old Face","serif"; font-size: 14.0pt;"><o:p></o:p></span></div>
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<span style="background: #F7F7F4; font-family: "Baskerville Old Face","serif"; font-size: 14.0pt;">
And so.....and so.....the wild and precious part of our lives---of
my life-- must be to love this life----sinkholed, , scabby kneed, broken hearted,
non-liposuction-ed, Bambi- watching life. </span><br />
<span style="background: #F7F7F4; font-family: "Baskerville Old Face","serif"; font-size: 14.0pt;"><o:p></o:p></span><span style="background-color: #f7f7f4; font-family: 'Baskerville Old Face', serif; font-size: 19px;">Taylor's Tee shirt is a reminder for <i>me---about my own life. </i></span><br />
<span style="background-color: #f7f7f4; font-family: 'Baskerville Old Face', serif; font-size: 14pt;">Any life lived
deeply and real </span><i style="font-family: 'Baskerville Old Face', serif; font-size: 14pt;"><b>is</b></i><span style="background-color: #f7f7f4; font-family: 'Baskerville Old Face', serif; font-size: 14pt;"> what we all crave. Isn't that so? </span><br />
<span style="background-color: #f7f7f4; font-family: 'Baskerville Old Face', serif; font-size: 14pt;"><br /></span></div>
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<span style="background: #F7F7F4; font-family: "Baskerville Old Face","serif"; font-size: 14.0pt;"> I will continue to see my journey with Taylor as deep and wild ----however long it takes <i>me.</i></span><br />
<span style="background: #F7F7F4; font-family: "Baskerville Old Face","serif"; font-size: 14.0pt;"> Whatever it takes... my lesson is to learn to embrace and </span><span style="background-color: #f7f7f4; font-family: 'Baskerville Old Face', serif; font-size: 14pt;">kiss the </span><span style="background-color: #f7f7f4; font-family: 'Baskerville Old Face', serif; font-size: 14pt;">precious-ness of this life ---the life that has my name on it. </span></div>
The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com1tag:blogger.com,1999:blog-525985579775978639.post-22882784025187598992014-01-24T16:33:00.003-05:002014-01-24T18:11:00.777-05:00Loss, Grieving, Wandering<div class="separator" style="clear: both; text-align: center;">
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Taylor lost his daddy six months ago. I lost my best friend and Taylor's other parent. Taylor stopped saying words on the day Joe died. I still say words but they seem meaningless most of the time. My boy and I are wandering in the desert looking for what went missing. <br />
Today I knew that it was time to write again. I heard myself say, "Just put something down. Start. Just begin."<br />
So here I am ....back again. The old me but the new me. The me that feels like a piece of corn that has had its husk stripped/ripped off. Shucked corn---with silky fibers still stuck in the kernels---all messy. I think some people say things like, "She's a hot mess. Do hot messes grieve and fall to their knees in the darkest part of the night? How does loss carve such a deep trench in our hearts?<br />
I used to think I was a pretty good mom. Now I am not so sure. My compass for leading Taylor is all whacked out. The true north magnet is going hay-wire. Wavering off course. And I feel guilty about it. That's irrational---but yes, guilty. <br />
<i>Where</i> is the promise? Remind me<i> about </i> the promise? It is hard to be so vulnerable. I liked having my mask--my husk. It was safer that way.<br />
Way down deep in my tiny little cells lives hope. Who in the heck knows how hope got planted inside of me---but it did and IS. I just need hope's flame to stay lit. <br />
I pray for a kind wind to breathe gently into the lungs of our hope. <br />
And for Taylor to find his words again.<br />
Wind and words.<br />
Those are my healing prayers.<br />
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<br />The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com5tag:blogger.com,1999:blog-525985579775978639.post-84349992702927743302013-04-07T20:44:00.000-04:002013-04-07T20:44:17.299-04:00Role Reversal.....or Is It? <div class="separator" style="clear: both; text-align: center;">
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Taylor's father has lung cancer. Hopefully all of the slash and burn modern medicines are shrinking a very large tumor. In the midst of this, Joe (Taylor's dad) has a hip that is giving him fits. A year ago, we were living in angst just watching Taylor live with so much pain. Now, as Taylor is healing, it is he, Taylor, who is caring for his dad. Isn't it so interesting and amazing in life how ebb and flow keeps a constant cycle in motion in all of our lives? Sometimes we get to be the person serving others. Other days/hours/weeks, we are humbled into receiving the care and compassion of others. To the naked, untrained eye, it might appear that Taylor has been on the "taking" end of things for most of his life. But, when all of the silt settles----and when we are still and taking serious stock in what's what in our lives, it is clear that this sweet and innocent little guy has been giving to us all along. I so often forget to see with <em>new eyes</em>. The landscape is so amazing through a lens of pure love. <br />
The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com1tag:blogger.com,1999:blog-525985579775978639.post-75599936924165684252013-04-01T18:34:00.002-04:002013-04-01T21:41:28.404-04:00Making New....Making Room<div class="separator" style="clear: both; text-align: center;">
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<span style="color: black;">Another Easter has come and gone. I can't even tell you how happy I am that it is not this time last year. One year ago, we were headed into a long spine surgery stay in Chicago. Healing has been S-l-o-w, but incrementally moving forward. I think we thought it would be a zip-zam-boom sort of straight-up recovery, but the reality did not match those expectations. And so, we wait. And watch. And hope. </span><br />
Taylor's daddy, Joe, was diagnosed with lung cancer two months ago. This has up-ended our lives. Even though Joe and I are divorced, we are close friends. He has moved in with us. If you take me out for drinks ( I don't drink...but I NEED to!), I will fill you in on details that I am saving for Oprah's new show on OWN. Joe is stable at this point---chemo, radiation and LOTS of rest. <br />
So, this Easter has been a time during which I have looked at renewal and rebirth--- just thinking about shedding old thoughts, patterns, beliefs and old feelings to make room for new---<em>more better</em> ones. I believe that we each have to enter into our own personal resurrections on a daily--sometimes hourly basis if we are going to be the people we were meant to be. This is HARD work. And constant work. And, it is a process---not an event ( Like in, "Oh yeah, I already did that once.") Well....do it again---forgive, enjoy, confess, enter in, make amends, be honest, take care, show love, show up, be accountable, be intimate----yeah, do those more than once. Renew. Re-born. <br />
This photo: Taylor and I were riding to Wendy's on Easter around noon. (No "real" Easter lunch for us.) I turned on the radio to hear the end of a worship service at a local church. The moment Taylor heard the music, he folded his hands and said, "Pray." <br />
Taylor gets it. <br />
Music is prayer.<br />
Life is prayer. <br />
We are our own prayers. <br />
Our lives <em>are </em>our prayers. <br />
Taylor reminds me. <br />
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<br />The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com2tag:blogger.com,1999:blog-525985579775978639.post-32969128758555701842013-01-12T18:29:00.003-05:002013-01-12T18:31:54.676-05:00Here, my prayer. Hear my prayer.I was working in my study today when in walked Taylor. He manuervered himself about until he had fitted himself onto the prayer kneeler. I just had to take a picture; it is so sweet. <br />
Would you----if you will---share with me what you think Taylor might be saying?<br />
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<br />The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com5tag:blogger.com,1999:blog-525985579775978639.post-87701522369759787462012-12-23T10:14:00.002-05:002012-12-23T10:14:07.770-05:00A Tribute to our family Hero!<div class="separator" style="clear: both; text-align: center;">
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One year ago at Christmas, our household was pretty sad. Taylor was in constant pain. It looked like we were at the end of hope. It was a dark time. <br />
Months earlier, I had been given the name of a world-class neurosurgeon at Rush University Hospital: Dr. Vincent Traynelis. I actually had his photo and contact information on my desktop for months before my desperation over-took me and prompted my call to his Chicago practice. <br />
The incredible Haley M. answered my call-----in more ways than one. I sobbed on the telephone with her while she waited patiently for me to overwhelm her with information about Taylor and his long medical history. Oh what an angel she has turned out to be for our family! Within a few days, Dr. Vincent Traynelis called me at home---way after a long day of surgery for him---and he talked, questioned and listened for more than an hour. So ....our journey to Chicago and Rush Medical Center...and to Dr. Traynelis began. It was a long, circuitous, emotionally-ladened journey, but as you all know, Taylor had his full fusion in May. We were in Chicago for 48 days. It was a time of ups and downs, intense fright and of tremendously deep joy. <br />
Dr. Vincent Traynelis is our hero this Christmas. As Taylor heals more and more, as he participates in his regular activities---as he is returning to the Taylor he used to be....We give thanks to Dr. Traynelis. <br />
Thank you, Haley, for hearing the pleas of a mama. Thank you, Dr. Traynelis for being so gifted, skilled, brilliant...and kind. <br />
Merry Christmas from Taylor! We love you!<br />
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The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com0tag:blogger.com,1999:blog-525985579775978639.post-3149146458959060792012-12-20T19:55:00.002-05:002012-12-20T21:43:50.757-05:00Miracle Knees <br />
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<img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpTz4lRr64vhmrfFSU2LxTbY2289SC-Sn0q2LEbIN3jX85F7hzbYcH3qOd0sgTM8HT0Vp-y7kgzbjKo-UdGu6aX-ITJ1-GQU5SAzRzLziZzkKPRBP0vah85OcdqvRmHIC66g7iI7cl-Aqg/s320/text+for+blog.png" width="209" /><span style="color: black;">For all of the years that I taught middle school, my "kids" always made fun of my bountiful knees! Undoubtedly when I wore skirts that showed my knees, one of them would call out, "Ms. Causey! You gots THREE sets of knees!" I always bristled at these words because, well....."don't no woman want three sets of knees!"</span><br />
I have always seen this part of myself as something wrong or flawed or bad. <br />
(I inherited them from my mother. Thanks, Mattie May!)<br />
But....Today when Taylor went and found his scooter after a year of ignoring it completely..I was overcome with awe and joy and complete and utter thanksgiving!<br />
I fell on my knees (which is risky because then I have to get back up.) <br />
I quickly whipped out my phone, took a little video and texted it to my sisters. <br />
Within a few minutes, I received such a perfect reply: "I hope your knees get all calloused from all of the miracles that you going to see!" <br />
Because I am true believe that ALL things come to us as gifts and in the service of healing, it occurred to me that it IS a great thing that I DO have three sets of knees. <br />
I am going to need them. <br />
Miracle Knees---Bring on the callouses!<br />
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The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com0tag:blogger.com,1999:blog-525985579775978639.post-55706859877102079232012-11-29T20:54:00.001-05:002012-11-30T13:45:54.425-05:00Unconditional Love?<div class="separator" style="clear: both; text-align: center;">
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Taylor's older brother, Cole, stopped by the house early this morning to collect something from his old room. Taylor stood like a sentinel at the bottom of the stairs calling up to him, "My brudder. My brudder. Hey my brudder! My brudder, hey!" He must have called for his only---and his beloved--brother at least a dozen times before his voice was strong enough for Cole's reply to make its way downstairs. "Good morning, my brudder," Cole chimed---probably for the 200th time time this week that he had been summoned (with love) by Taylor. <br />
I heard it all from the bathroom sink. It was so sweet. But for the first time this morning, it dawned on me---like really woke me up kind of dawning---that <em>Cole</em> has a person in his life who loves him unconditionally. See, I have be aware for many years that I have had this very unusual kind of unconditional acceptance/regard/love from Taylor. It had just never occurred to me that Cole also shares this rare blessing.<br />
If you are reading this (and I guess you are if you're reading this), you must already know how completely remarkable it is for another person to have this sort of "I love you for who you are---<em>Because</em> you are---no matter what you do or think or believe. I just love you". It is...well, it's what all of those self-help books are written about---but that <em>very </em>few of us can achieve: loving another person unconditionally. Pretty dam(n) rare!<br />
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No matter how much Cole (or I) might beat up on himself for his perceived imperfections, Taylor's view of him is, “Nothing you become will disappoint me; I have no preconception that I'd like to see you be or do." Whew. It's just that plain. It's just that simple. It's just that profound. <br />
I have to say that it is pretty disarming to witness such a pure love by someone who never tries to influence his brother; he does not set out to limit Cole's potential, nor does Taylor manipulate in order to persuade or change his only brother. There is none of that usual family business that often goes, "I love you. You're perfect. Now Change!"<br />
I guess that is why this morning, I went bounding after Cole shouting, "OMG! You have somebody who loves you unconditionally! Do you know how lucky you are???" <br />
Lessons are being taught in my house and not by me. <br />
Love is not something we must earn (I am learning). <br />
Love is something we both give and if we're lucky... that we are able to receive.<br />
Taylor is doing his best to show us that love is infinite, boundless and sometimes.....unconditional. <br />
I am a slow learner. <br />
But, either way, Taylor's brudder is loved.<br />
Completely.<br />
And I get to see it as it happens.<br />
Win/Win for sure. <br />
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<br />The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com0tag:blogger.com,1999:blog-525985579775978639.post-30868590367644348972012-09-28T16:59:00.003-04:002012-09-28T16:59:55.409-04:00One little profound thought<div class="separator" style="clear: both; text-align: center;">
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<br />The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com0tag:blogger.com,1999:blog-525985579775978639.post-2225701065330324102012-09-14T13:05:00.000-04:002012-09-14T18:41:56.171-04:00How We Travel<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSj8CzCfLqdWtArb_gYBb00YItOSRQLV2U7n1qrqNabNeUDILTVtDLR6aFBf8aREDXnHWTi9FXsx1dVcnO-v7uO1Nl3F0Jgx4WANABWprIolesAoaRVi1I3CDr9VSPbttnUz0-NGKl2o25/s1600/taylor+august+2012+008.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSj8CzCfLqdWtArb_gYBb00YItOSRQLV2U7n1qrqNabNeUDILTVtDLR6aFBf8aREDXnHWTi9FXsx1dVcnO-v7uO1Nl3F0Jgx4WANABWprIolesAoaRVi1I3CDr9VSPbttnUz0-NGKl2o25/s320/taylor+august+2012+008.JPG" width="291" /></a><span style="background-color: white; color: black;">What keeps coming up in my mind---sort of like a mantra but more like a persistent thought of some kind is this: <span style="color: red;">It is the <em><strong>journey</strong></em> and not the destination that</span> <span style="color: red;">matters.</span> How we travel in this world--how we make our way---how we go---defines us, frees us, restricts us---can clog us up or gives us wings. I am so "destination" fixated, that I really do so often forget that the "trip" begins....what?.......When we get in the car? When we've got our shoes on? Once the airline ticket is booked? After the first 100 miles? </span><span style="background-color: white; color: black;">The day we were born? </span></div>
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I have had so many intense longings and dreams and wishes and hopes that my sweet Taylor was going to just jump right back on his bike after these several years of avoiding it. For SO long, his bike was the way he traveled in this world. People knew him (and still know him) by his bike sailing up and down Milledge Avenue---orange flag just a-wavin'. He was set free on that bike. </div>
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For now...for how long now??? Taylor has a new way of going. That means that I , too, have a new way of going---of moving---of traveling through these days. </div>
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I am doing my best to "lean into it" and let it be. Change is not a bad thing. He's on a journey. I'm on my own journey. Two paths. Two ways (at least two) of finding our way. </div>
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The destination is not clear exactly. What I'm seeing, though, is a road map that leads to a more expansive heart and hopefully to a place of kindness ----with <em>success<strong> </strong></em>being redefined. </div>
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And, so we walk or ride electric scooters or hobble---our soles walking on kindness' soil. </div>
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My shoes are buckled. My feet are moving forward. </div>
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We're well into the midst of the journey. </div>
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<br />The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com0tag:blogger.com,1999:blog-525985579775978639.post-76389466707944836092012-08-27T21:14:00.001-04:002012-08-28T16:47:45.953-04:00It Is What It Is<div class="separator" style="clear: both; text-align: center;">
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Honestly I am not really sure how I'm doing these days. The best thing I can come up with is that I am having post traumatic stress something or other. I know it has been three months since surgery, but I am still not connected to my body. It's weird. I think I'm just going to go with it for a while until I meet myself coming in from the outside.<br />
So... we were at Coney Island last week as part of our visit to New York. My sweet sister thought Taylor might enjoy some of the rides. We walked along the boardwalk, he rode four rides and boom...we had "done" Coney Island. Bam. <br />
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Taylor is 28. Taylor is 28 years old. I have been his mama for 28 years now. You'd think I'd be getting used to things. Sometimes I am gripped with emotion from out of nowhere. I gulp. <br />
Watching my precious son walk up to entrance to "The Flying Whales" just about did me in. It was early Sunday morning; he was the only rider on this ride. Taylor was taller than the "You Must be THIS tall to ride this ride." But the nice ticket-taker man let him on anyway. <br />
Taylor's face was one of pure delight. He was thrilled. No scream machine could have evoked the same look of "I've Got This!" than those flying whales. He ruled that ride. And for about 7 seconds I cried---deep, riveting, internal sobs. "IS THIS MY LIFE???" <br />
Yep, sure is. <br />
He was SO happy. <br />
What else is there really? <br />
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The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com3tag:blogger.com,1999:blog-525985579775978639.post-87296068447955563882012-07-15T12:19:00.002-04:002012-07-15T12:19:27.368-04:00What Brenda Said<div class="separator" style="clear: both; text-align: center;">
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We're home. We were in Chicago at Rush Hospital for 48 nights. I know that's how many nights because I counted. Taylor is healing. Slowly. Very slowly. I watch every single little bitty nuance of a sign that his body makes to see if he is really getting better. And then I hold my breath and say all kinds of "Please" prayers. Basically, in very crasse non-medical-ese, the neurosurgeon built a cage around Taylor's spine. I can't even stand to look at the x-rays yet. It is all too much. <br />
But anyway, during a welcome home dinner the other night, my friend Brenda said, "You know, Marianne, you just have to let God be God." Yes, that sentence: Let God be God. Thank goodness that none of us can see <em><u>inside</u></em> each other's minds/bodies or my friends would have witnessed a tighening, a clutching, a white-knuckling of, "Why that's impossible..... he can't do anything without MY help." <br />
You see, my DNA was rewired when I was very very young. I became a care-taker--not by choice. My brain chemistry was forged; I somewhere got the message that nothing happens in my my life---or close-by life without me helping out God---and all of the spirits of the holy universe. I just don't know how to let it BE. So, Brenda was suggesting something that, for me, is huge---and hard---nearly impossible. But I listened. And was still. And yearned. <br />
Metaphorically, I live my life leaving sticky notes for God all over the place. "Ah-hem, while you were sleeping, you may have missed...," or, "I am not sure if you're aware of this but..." <br />
Holy Cow! As my mother used to shout at me, "WHO DO YOU THINK YOU ARE??" Yes, I guess I am really giving myself a whole bunch of power, right? Oh lordy me. <br />
And so this week, I got a message from Taylor----actually he had been giving it to me for a long long time, but I finally noticed it. And for me, it goes right along with what Brenda said---at least, for me, they go hand-in-hand. When Taylor wants my attention, he does not say, "Listen." No, Taylor says to me, "Mama, Wake up." I can be driving or eating a sandwich or washing dishes and if he wants me to know something or be aware of something , he says, "Wake up!" <br />
This really has intrigued me this week. Wow! My very own sticky note---from whom? <br />
And are there other sticky notes just for me out there if I just pay attention.....I mean if I just "Wake up"? I thought I was the only one leaving messages/signs/notes/prayers/pleadings in this life. <br />
Wow oh wow. <br />
Let God be God. <br />
There are sticky notes all around---signs---that have been posted. <br />
And, they have gifts and messages for our lives.<br />
Wake up. <br />
I think I will.<br />
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</div>The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com4tag:blogger.com,1999:blog-525985579775978639.post-37421586443142711632012-06-22T07:45:00.000-04:002012-06-22T07:47:39.304-04:0040 Days, 40 Nights<div class="separator" style="clear: both; text-align: center;">
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Just so you know, this is not the blog I was going to write. I have a "really good one" in my head, but I can't manage to get it written. <br />
This is just an update for those who do not follow Facebook. <br />
We have now been in Chicago Rush Medical Center for 40 days. Actually, Taylor is in the rehab section of the hospital at this point. <br />
After having a full posterior and anterior spinal fusion, healing has been slow. Taylor has gone from being on a vent for 14 days, then to a trach and all the while on a feeding tube (NG tube---goes through his nose, down his throat, into his stomach.) <br />
The really really good news is that the trach is out.. Now we are waiting and working with him on swallowing. The photo is of Father Stephen, a Chicago priest, who was sent to the hospital room to do a blessing/healing for Taylor's throat. Two of my friends in Athens who are Catholic (and who know ALL of the patron saints) contacted him and asked him to come. It was a sweet blessing---as all blessings are. <br />
So......we wait and hope and cajole. So much of how this is going to work is based totally on Taylor's body doing its own work. There are no pills, no exercises, no magic medicine to make the swelling in this throat go down so he can swallow. It's one of those things over which we have no control---and you can imagine how that puts me in a tail-spin. <br />
Those are the facts. I hate that darn NG tube but on the other hand, I am grateful that he has gotten nourishment. This little guy has been an amazing trooper. And let the record state that I will NOT be finding any more neurosurgeons for him---ever. This is it. If this surgery does not make his pain better, then well, we'll just......we'll just ....handle it. <br />
I don't know when we will be going home to Athens. We left there on May 13. I have forgotten what my kitchen looks like---but not how it makes me feel. <br />
So many lessons. So many stories. So much learning. So much growing.. So much grace. So much mercy. So much gratitude and deep thanksgiving. The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com3tag:blogger.com,1999:blog-525985579775978639.post-76296280173444190472012-06-01T13:17:00.000-04:002012-06-01T20:31:08.733-04:00Being Here Now<div class="separator" style="clear: both; text-align: center;">
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Taylor is in a regular room at Rush Hospital. I actually cried when we left ICU late last night because the nurses were all hugging us goodbye. Oddly enough, it had begun to feel like home. We had heard one another's stories about sisters and vacations and parents in role-reversals. It was probably time to leave. Right? <br />
Mr. Tay-man still has oxygen feeding into his trach. His has a feeding tube (which actually just came out accidentally). Darn it all.......another procedure to put that dang thing back in. Oh, how we wish he could swallow and have his food/drink go down the right way---and not go into his lungs. I am surprised that Joe and I are still speaking. Divorced though we already are, we still function like friends----as we should. But this situation taps into every stress button imaginable. Is it human nature to need somebody else to blame? I love that bumper sticker that reads, "I am NOT saying it's your fault; I am just saying I blame you." That pretty much sums up a lot of how I am feeling. Ok, saying it out loud and "owning it" is the first giant step towards changing it. (I could probably use a good weekend retreat along about now----maybe Outward Bound or something that would involve tight-rope walking across a huge gorge---you know...."to build character". )<br />
So, here is how I am handling the stress today: I am going to go to State Street in Chicago, find a Nordstrom's and buy some new Mac lipstick. Is that called lipstick therapy or just denial therapy? Either way, it's about $20.00 worth of good self-care. AND! I have found a hair salon in Lincoln Park from one of the ICU nurses. So, Monday, I am going to have my hair cut. Let me just say that this feels mighty frivolous given the gravity of what is really going on in this room, but I MUST balance this out somehow. You get me, don't you? <br />
That's it from the 12th floor of Rush Hospital. I am typing and Taylor is watching <em>Homeward Bound</em> for the 100th time. I am mother of son who had a trach in his neck so he can breathe. <br />
Where is that lipstick I think I so desperately need???The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com0tag:blogger.com,1999:blog-525985579775978639.post-70597145374109704292012-05-26T11:04:00.000-04:002012-05-27T10:29:18.649-04:00Guest Blogger<div class="separator" style="clear: both; text-align: center;">
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Oh lordy me. Where am I??? I don't even know what day it is. I know we're in Chicago because I can see the Sears Tower. We're definitely in ICU because, well.....just look at the picture. <br />
Eleven days here. I never thought we would STILL be in ICU. Imagine that. <br />
Yesterday I was so upset because Taylor's nurse told me that every time I went into the room that Taylor's blood pressure went up. It is true. When he saw my face, he would fiercely try to talk through his trach and tell on the nurses for the shots and the blood-drawings and the caths and the restraints. He SO wanted me to help him; he became agitated and desperate. It was awful to watch. I felt completely helpless and defeated. <br />
But, because I was the one face that stirred him up, the nurse asked that I not go into his room for most of the day. I fell apart. What??? Who would take care of him if not me?? <br />
Remember in those old-timey movies when a woman gets hysterical and somebody slaps her---in an effort to "bring her to her senses"? (I think in the year 2012 they might even call this b***ch slapping if I know my common street vernacular.) WELL, my sister basically did this to me. And then she said, "You should blog about how this makes you feel." <br />
My immediate response, "NO! Martha, YOU need to be my guest blogger. I am too upset! They have fired me from being his mother. I have never been fired before from anything, so if you think I should talk about this, then <em>you</em> will have to do it." <br />
That was yesterday and this is now today. <br />
What I am learning: I knew that Taylor would be going through drastic changes this week. I had not prepared myself for my own need to grow, expand and learn---about myself---not about him. <br />
Wow, this balancing act of being a mama, a woman, a professional person, a sister, a friend---someone who has got <em>a life</em> of her own ---all of it---straight up learning curve these days. <br />
I'm glad they kicked me out of the room. I'm thankful that my sister forced me to unclinch my white care-giving knuckles. I have a lot of healing to do myself. Anybody want to get in that line with me?The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com5tag:blogger.com,1999:blog-525985579775978639.post-86267609078788744192012-05-23T22:05:00.000-04:002012-05-23T22:05:54.871-04:00Left turns and Rugged Roads<div class="separator" style="clear: both; text-align: center;">
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I never ever in my whole life thought I would be praying for my son to have a tracheotomy. But today, that was exactly my prayer. Sweet Taylor has been on the vent for eight days now. The tube in his trachea is keeping him swollen and very agitated. If, by any chance, you have just found your way to this story of Taylor, he had a full anterior and posterior fusion one week ago-----seems like a lifetime ago. I know we've been here at Rush Medical Center for a year now---ok, maybe just a week of years. <br />
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We were told this morning that he would be given a trach today at 2:30. As much as we had dreaded ever hearing those words, it was evident that a trach would be an improvement over what we have now. <br />
At the very last minute, a critical emergency came up for another patient and Taylor was put on hold. I fell apart. I am a big baby. I forget that sometimes---but I am. I just start crying and calling people names. I say bad words. It takes me a while to process disappointment. Thank goodness there were no 12--packs of Reese's peanut butter cups hidden under pillows or pocket books. I would have swallowed them whole. As it was, I just cried. <br />
In this past week I have learned what Propopol is. I have seen a Picc line inserted. I have learned to read monitors and know what oxygenation numbers mean----all the while being able to gaze out of the hospital window at The Sears Tower. Two worlds slammed up against each other that seem to not know one another even living side-by-side. <br />
This has been a rough and rugged road. We have had to make left turns when we wanted to keep going straight. I have lied/lay/lain on the intensive care "bed" asking myself how on earth we got to this place with our son. And then........AND THEN.....there are glimmers of light that come bursting through---and I remember. Darkness and light----light and darkness. <br />
I am terrible with Bible verses, but somewhere in my head, I hear these words from the Psalms that I memorized years ago. I think I will sing them to myself tonight: <br />
"Even the darkness will not be dark to you; the night will shine like the day, for
darkness is as light to you."<br />
And tomorrow will be better. I know it.The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com3tag:blogger.com,1999:blog-525985579775978639.post-20326446617338128042012-05-22T10:32:00.001-04:002021-01-14T13:22:09.416-05:00Sister Act: The Reality Show<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Martha and Deanie have been constant givers of care</td></tr>
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This might be a mushy (mushy-er) post. I know I can get pretty maudlin and navel-gazing, but those of you who know me, get this. My sisters, Deanie and Martha have been in Chicago with me this week. This next sentence is a hackneyed sentiment ; I don't know what I would have done without them here. (See? Powerful sentiment, flimsy sentence.)<br />
I have fallen into both of their arms in a massive puddle of tears as the doctor(s) have found "no breath leaking through the tube." I mean, really, HOW does a mama hear something like that and still stand up? <br />
They have listened non-stop to my detailed accounting of what each nurse or resident said and how I tried to read between the lines (always filling the space in with some worse case scenario self talk.) Even at dinner, as I sat paralyzed with exhaustion and fear, they humored me and told me that I had 52 more seconds to complain about the way the chicken was cooked. (Who else can talk this straight with you?)<br />
And, most importantly, even though I do not have a picture of Deanie holding Taylor's hand, both she and Martha have stood by Taylor's bed for long stretches soothing and loving on <u>my</u> very own son.<br />
And they have brought me tea and Vita-muffins and toothpaste and fingernail files. And they have continued to listen intensely and carefully alongside me to the words of every resident--hoping to squeak out hidden messages of hope and healing. <br />
To my sisters, Martha and Deanie, I love you. I love you.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5Un2wRhffmbyRj8cotkdDR3opPcO6v9hCpQ04nf-0vCLF2RyZ8hKQ-SHGJY_NeNjBVrNB8cZCbaP_6rkFFp_PijEiD8aIgaD4S2NRmSNexlELTsMYxpfhubudzsypwnkPzI7us1aXIEkQ/s1600/deanie+003.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5Un2wRhffmbyRj8cotkdDR3opPcO6v9hCpQ04nf-0vCLF2RyZ8hKQ-SHGJY_NeNjBVrNB8cZCbaP_6rkFFp_PijEiD8aIgaD4S2NRmSNexlELTsMYxpfhubudzsypwnkPzI7us1aXIEkQ/s320/deanie+003.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Deanie was thankfully able to take a few hours each day to see Chicago. <br />
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</tbody></table>The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com1tag:blogger.com,1999:blog-525985579775978639.post-76152262471407580872012-05-18T13:23:00.000-04:002012-05-18T13:25:44.094-04:00Surgery---Our Reality Summit<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR2quS4djmtzqX6hMliXPPCJckd-OVsKS3asuxeg6ji9g0d05I5JPjgZMIMC4hBmeoLJLa8Ha6hTTTEhaI31uW0-iofsJvfhb9zg_FF8Mh-t0jiO9L4rMpHbdagU_2IE1LZOCFqTzztlav/s1600/hospital+007.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR2quS4djmtzqX6hMliXPPCJckd-OVsKS3asuxeg6ji9g0d05I5JPjgZMIMC4hBmeoLJLa8Ha6hTTTEhaI31uW0-iofsJvfhb9zg_FF8Mh-t0jiO9L4rMpHbdagU_2IE1LZOCFqTzztlav/s320/hospital+007.JPG" width="200" /></a></div>
Sitting here in ICU with my beloved son (with ONE of my beloved sons!). I have never hada child who needed a breathing tube, feeding tube and a catheter. I have cried a lot and lost my cool at times. I have not been brave when I wanted to be. But, I know that Taylor is in good hands any way you want to see that. <br />
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I am thankful for insurance, for a skilled neurosurgeon, and for the many miracles that got us to this place. We have met other families here in the ICU with poignant and riveting stories. This is where the fragile side of life shows up bare naked. It's amazing to me what families go through. <br />
And then I can look out this window at the city of Chicago. The NATO summit is gearing up---but I don't care. Maybe I should. Do any of those delegates have a son in ICU today? I wonder. My world seems so small and yet I am being carried by an expansive network of loving friends from all over the world. We are holding our own summit. <br />
I KNOW you are out there because we feel you IN HERE with us. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPYJOkAKyoZS4gj-pEekFSce1n6FdfiimovVjZUGi0vNsQMoQF454MTHsoYR0MwhR8QiBRMkxbtvpjBXAepFjFWOVrCIVQ7TgfVg0a3jp_-rynboSgHYqVGlGX08x3JdQ83TJulO2MmEm_/s1600/chicago+002.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPYJOkAKyoZS4gj-pEekFSce1n6FdfiimovVjZUGi0vNsQMoQF454MTHsoYR0MwhR8QiBRMkxbtvpjBXAepFjFWOVrCIVQ7TgfVg0a3jp_-rynboSgHYqVGlGX08x3JdQ83TJulO2MmEm_/s320/chicago+002.JPG" width="274" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOlVjmwykd3g2j-8y7DeOKVV5e5CvPNzBnEaL7V74YgoDuGXH0gpZjlDyd1pK1YES_26pQmZN62tFBDDZ00ejO7sVFCuZwCXoCvCbz1x-J3tt73iv68KnE2LtbWBXvAxmrfkSoUHXMl5zH/s1600/chicago+001.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="202" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOlVjmwykd3g2j-8y7DeOKVV5e5CvPNzBnEaL7V74YgoDuGXH0gpZjlDyd1pK1YES_26pQmZN62tFBDDZ00ejO7sVFCuZwCXoCvCbz1x-J3tt73iv68KnE2LtbWBXvAxmrfkSoUHXMl5zH/s320/chicago+001.JPG" width="320" /></a></div>The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com5tag:blogger.com,1999:blog-525985579775978639.post-13838385785254767532012-05-18T13:03:00.001-04:002012-05-18T13:03:25.580-04:00The Day Before Surgery<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dyKaEDcTluNsmpDPDrSUnVwCNzjX81XHFZkFdFGecIUsoZVO5Gfdj74K-eP1g3-p38bMGbqVmMUuRn-SN2o' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com0tag:blogger.com,1999:blog-525985579775978639.post-43092783670586645722012-05-08T21:49:00.000-04:002012-05-09T07:11:02.005-04:00Inside Out<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrRFlhdZkqmV6o4qrkJ_Zrzzp_tGPsGoS_rr02OfHAX66SDefkPRm-9fIhdV6dSd74NNKsii_oJfRWQVP85SNE2MdqOhmeoNmxHs9ZoHrBH9hrjDdpICW21kZP-0xCY675XAU0ggF8SXow/s1600/shoes+001.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="268" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrRFlhdZkqmV6o4qrkJ_Zrzzp_tGPsGoS_rr02OfHAX66SDefkPRm-9fIhdV6dSd74NNKsii_oJfRWQVP85SNE2MdqOhmeoNmxHs9ZoHrBH9hrjDdpICW21kZP-0xCY675XAU0ggF8SXow/s320/shoes+001.JPG" width="320" /></a></div>
I looked down at Taylor's feet yesterday and realized that he had worn his Crocs on the wrong feet all day long. They just looked so weird and ill-fitting. I'm going to say, "Bless his heart" now. Bless his heart; he didn't even notice. Gulp. I know. I know. There are worse things to worry about. But seeing those shoes so lopsided and on the wrong feet----pointing the wrong way---just struck me at a very delicate place on my insides. <br />
Taylor is facing major---bigger than major surgery a week from tomorrow. That means, of course, that my whole family is facing major surgery along with him. Right about now, my life feels like I am wearing my shoes on the wrong feet. Nothing fits right. Things are awkward. My clothes are inside-out. Tags are showing. Seams are ripped and visible. Zippers are off their tracks. Buttons are hanging by a thread----this is how my life appears from my own inner eye. <br />
Bless his heart----again. Taylor thinks we are going to the beach next week. He thinks he will be on a float in the Gulf. Even with his very limited understanding and ability to comprehend, he picks up on my fear(s). He senses that something is askew; When Taylor wants to know more about what I'm talking about, interestingly he asks, "Where?" When he asks "Where?" he wants more details about what's coming up. And he persists, "Where?" Where means, "Where are we going? Who will be there? What movies will we take? Will we spend the night?" Where means, can he get a hamburger?<br />
So, here's what I know. My life is NOT normal. Shock! I am actually not just coming to terms with this, although in all honesty, every single day, I get a new glimmer of how I must adjust. Seems like I would have had it all figured out by now. Nope---still grappling with what "should have been". <br />
Today on my walk what hit me as I was trying to figure out why I was so weepy.....what hit me is that I realized that in this life I have been given a gift---a very precious and rare gift. Having been given Taylor, I have to be even more careful with my decisions and plans because I am taking care of two lives in essence----my own---and his. That's a pretty daunting task I'd say. Some days I can barely manage my own life, but I never get a reprieve from being asked to handle Taylor's life with absolute care. Making the decision---on Taylor's behalf---to have the trauma of another surgery is almost too big a decision for a mother to make. But I have. And I am taking care of this precious gift of a son. It's my job. Pure and simple. And it's hard. But there are many hidden treasures in hiding along the way. I'm not sure I'd notice them so readily if his shoes were on straight. It really does force me to learn from my "double takes" to realize that that which is not perfect offers so many rich lessons and blessings. <em><strong>If</strong></em> I'm willing to see them. <br />
I am scared for myself----for Taylor. But I have hope and faith and courage (well, my courage comes and goes.) If you are reading this, would you please say Taylor's name on May 16 early in the morning? And then say it again as often as you can for the next 12 hours until I can hold his hand again. My sweet gift. <br />
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The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com5tag:blogger.com,1999:blog-525985579775978639.post-1501682257950776732012-04-08T08:52:00.004-04:002012-04-08T14:42:09.514-04:00Easter Morning without patent leather shoes<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwQPJ32yowWceSGtl2ru8iXipOlOKypL6Id7_1GiG3eRkPVXcuPTQUe0qKnnVNjVVO2PBYnSsVlMvmKz8rAyQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><div class="separator" style="clear: both; text-align: left;">Taylor and I delivered an over-flowing Easter basket to Cole and Sarah this morning.</div><div class="separator" style="clear: both; text-align: left;">We knocked on the door (although Easter bunnies don't generally knock) so we could hand deliver the chocolate and goodies. When Taylor saw his brother, he said, "Happy Easter! Trick-or-Treat!" </div><div class="separator" style="clear: both; text-align: left;"> I guess he sort of lets all holidays run together---especially those that involve knocking on a door and candy being exchanged in one way or another. I, too, get confused about holidays. What Taylor said actually sounded pretty good. So, to all of my (wonderful) readers: </div><div class="separator" style="clear: both; text-align: left;">Happy Easter! And, Trick-or-Treat! </div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDe3AoAlxLcd1NZiSKvWFNEdzcSjvf5hj7HTID2dsZXpnFCGX62I_VgwyDjKf8Wc2ozNyT4-PVWF7hfpQLlas-FcNMaFvVv2YE5O8sl624vRyTKe2sKA4F6Oqo6xw-uzTiIm8LgdslaAPt/s1600/For+blog.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDe3AoAlxLcd1NZiSKvWFNEdzcSjvf5hj7HTID2dsZXpnFCGX62I_VgwyDjKf8Wc2ozNyT4-PVWF7hfpQLlas-FcNMaFvVv2YE5O8sl624vRyTKe2sKA4F6Oqo6xw-uzTiIm8LgdslaAPt/s320/For+blog.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div>The Retarded Motherhttp://www.blogger.com/profile/09157223871852109919noreply@blogger.com1