tag:blogger.com,1999:blog-64278079231200897962024-03-05T02:51:42.332-05:00The Incredible GiftHere you will find rambling memories of my daughter Margret's life, plus other bits of this and that of interest to me.Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.comBlogger88125tag:blogger.com,1999:blog-6427807923120089796.post-83797537481487592062016-12-18T14:41:00.000-05:002016-12-18T14:41:33.760-05:00We're coming up on Christmas again, Number 8 since Margret left us.<br />
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It took me over a year to figure out what to do to honor her memory, her generosity, her love of kids, my love of her; and to make me feel like I was doing something worthwhile in her name. Turns out my love of crochet comes in handy for this. Making hats for Valley Youth House: for kids, something worthwhile, and it would please Margret.<br />
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The first year I made hats for Valley Youth House, there were 16 hats. That was 2010.<br />
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This year there are 132 hats, 8 of them with matching scarves, 2 baby blankets (with matching hats for 0-3 months, 6-12 mos, and toddler sizes, which are not counted in the hat total), a lap robe/snuggle blanket, and I made some earrings this year too. I used making earrings to unwind from the stresses of daily life of a caregiver, and as small gifts for friends and family.<br />
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Have a look to see what I made this year:<br />
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<a href="https://goo.gl/photos/hHcUis714o2qqsNaA" target="_blank">Stack of Crochet Stuff</a><br />
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<a href="https://goo.gl/photos/N2SaVPsPK85mACZN6" target="_blank">Scarves and matching hats</a><br />
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<a href="https://goo.gl/photos/iEqmL6Mcsk1e7J5f9" target="_blank">One of the baby blankets with matching hats</a><br />
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<a href="https://goo.gl/photos/QCoKfQvPSaLq2qBq8" target="_blank">Earrings added this year</a><br />
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Let's see what I can do to make this coming year notable and worthwhile.Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com8tag:blogger.com,1999:blog-6427807923120089796.post-67438443569419162792016-07-16T22:39:00.003-04:002016-07-16T22:40:15.122-04:00Hard to believe that it has been eight years, I think of her so often.<br />
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Several days ago we had a fierce thunderstorm. I stood out on the porch and watched the rain bucket down, watched the lightning flashes and counted to the BOOM! I was also remembering my daughters and me sitting on the porch wrapped in a blanket to keep the wind and rain out, watching another fierce thunderstorm and talking about Margret who had just passed away.<br />
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Sometimes when I come in, the front door doesn't close all the way, and a gust of wind will push it open. I find myself saying, "Come on in, Margret." Yes, I'm silly.Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com3tag:blogger.com,1999:blog-6427807923120089796.post-19705395403188580392014-07-08T23:27:00.001-04:002014-07-08T23:27:39.866-04:00Happy Birthday, Sweetie Pie!Today is Margret's birthday.<br />
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She would be 43 today. On Monday, she'll be gone six years.<br />
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Grief fades into the background, and life takes on a new normal. I don't hurt the way I did when she was first gone. And yet, I still miss her.<br />
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Last night I was sitting on the porch watching the lightning play around and behind the clouds, and listening to the thunder. I was thinking about the last time I sat on the porch watching a thunderstorm with my daughters, snuggled together under a blanket, giggling and enjoying being close. I smiled.<br /><br />
Last month I went to the PHA Convention in Indianapolis with Merle. I
met several more internet friends face to face for the first time.
Margret would have had a marvelous time. She would have made friends with EVERYBODY, because that was Margret.<br />
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PHA has an early diagnosis campaign, and I plan to keep telling anyone who will listen about PH, just as Margret and I did for years. It's too late to help my daughter, but I want to get out the word about the benefits of early diagnosis so that no one else has to go through the decline she did before getting appropriate treatment.<br />
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Here's a link to the PHAssociation website:<br />
<a href="http://phassociation.org/" target="_blank">http://phassociation.org/</a><br />
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and here's another, to Merle's PH Support Group pages, lots more good info:<br />
<a href="http://www.clevelandareaph.com/" target="_blank">http://www.clevelandareaph.com/</a>Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com3tag:blogger.com,1999:blog-6427807923120089796.post-26897884804870530682012-06-07T17:19:00.002-04:002012-06-07T17:19:36.920-04:00AnniversariesWe are coming up on anniversaries: anniversaries of last doctor visits, hospital entry, transfer to the other hospital, last birthday and death. I find myself contemplative and sad.<br />
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I have lots of memories of times with my daughter, some of them good, and some of them sad. I think of the good memories more often most of the time, but just now I am remembering my daughter being sick, and impatient to get better and back to her normal routine. <br />
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I remember going back to the doctor with her because she wasn't well yet, and her having a chest x-ray to check for pneumonia. The x-ray was clear.<br />
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Some days later I remember her breathing not sounding right, but she didn't want to go back to the doctor again. Then the next day her breathing sounding more not right, and insisting she go.<br />
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I remember the doctor telling my daughter she needed to be in the hospital, and was ordering an ambulance to take her there. My daughter crossed her arms across her chest and said, "I'm going in my mother's car." The doctor said "You'll be more comfortable in the ambulance, they can give you supplementary oxygen." Margret lifted her chin and said, "I'm going in my mother's car." The doctor gave up, and called ahead so they would be expecting us to walk in.<br />
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I remember the difficult night she spent in the hospital, and the stream of people who came to see her the next day, in particular the cardio who asked me what our long term plans for her were, who I told to call her specialist in Philly, who ordered up a helicopter to take her to the hospital where he practiced, and where they had better training and equipment to deal with her unique problems.<br />
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I remember the caring and sympathetic transport crews, the squad who would take her to the helicopter landing site, and the helicopter crew (with a woman pilot!) who transported her the rest of the way.<br />
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I remember going home to pack a bag, and my husband insisting that I eat something before I go. I remember the drive to the other hospital, and the call I got from daughter's nurse wondering where I was (still on the way).<br />
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There's more that I remember, in those last weeks: I especially remember family and friends and the love they gave, and the caring and giving and help even from people we'd never met before.<br />
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I'm missing you sadly today, my dear, tomorrow I expect to remember other things about you and smile.Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com3tag:blogger.com,1999:blog-6427807923120089796.post-22859701043123387822011-12-23T12:08:00.003-05:002011-12-23T12:19:23.579-05:00A Sweet Little Message from the Past<span style="font-size:85%;">I got a Christmas card from Margret. It was signed " with love Margret".<br /><br />How is it possible to get a Christmas card from my daughter, when she died three years ago?<br /><br />I was going through a box of Christmas cards left over from other years, partial sets, a little of this a little of that... and found a few that Margret had signed, but not sent.<br /><br />It made me happy and sad at the same time.<br /><br />The every day stuff gets easier, but this is only the third Christmas I'm spending without her.This year it isn't like the first Christmas with her gone. The pain of her absence was so much worse then. I wasn't sure at the time how a human being could live through that agony, but living through it IS possible.<br /><br />I'm gonna be OK over the long haul. The happy memories predominate, the good times come to mind more easily than the sad. I have my husband and my family and you guys; and I have lots more hats to make before I am finished here.<br /><br />I'm pleased to announce that I donated 17 hat/scarf sets to Valley Youth House in Margret's memory this year. The receptionist admired them, and hoped aloud that I would have time to make them some more for next year.<br /><br /><a href="http://flic.kr/s/aHsjwQubST">Hat photos here.</a><br /></span>Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com4tag:blogger.com,1999:blog-6427807923120089796.post-26843848884096451952010-07-15T02:25:00.002-04:002010-07-15T03:17:55.966-04:00Second AnniversaryThe sun rose today, just as it has every other day over the last two years, but behind clouds. It rained. Thanks universe, I appreciate the sentiment.<br /><br />I have been thinking of my daughter Margret today, and remembering her fondly.<br /><br />I've been remembering good things, fun things, happy things like what a great giggle she had, how much she liked ice cream, how we would sit together and watch Dancing with the Stars - especially the season Billy Ray Cyrus was on. She would clap her hands in delight, sometimes giggling at the same time. She cast ALL her votes for Billy Ray that season. Until he had to leave.<br /><br />Did I cry today? Yes, a bit. I cried as I was remembering my feelings when the doctor said "end stage," how I was shocked, yet at the same time, not really surprised at all. Then the scramble to let people know it was time to say goodbye. I'm grateful to each and every one who came to tell her, one last time, how much loved she was. Her passing was peaceful, and quick. I held her hand, and tears rolled down my face. The feeling as I let go of hope I didn't know I was still clutching was like water pouring from a pitcher, vanishing as it streamed from the pitcher's lip. Not a very good explanation, I don't think, but the best I can manage. Then numbness set in, and the numbness let me function in those sad first days after.<br /><br />Margret belongs to the past. Never again will I track doctors appointments for her, make sure she has all her prescriptions refilled in good time, check to see that she's up with her alarm clock in the morning, help her change an oxygen tank. Lots of things in the Never Again list.<br /><br />Margret also belongs to the present because I think of her every day. Some days I smile, remembering, while I put the silverware away, what an amazingly consistent and neat job she made of it doing the same thing. Other moments are less happy. I still miss tucking her in, the good night hug and kiss, little interchanges like our "Good night, Margret, sweet dreams." "Good night Mama, I love you."<br /><br />She also belongs to the future. My newest granddaughter, according to her mother, makes some of the same faces that Margret did, some of the same gestures, and sometimes doesn't close her eyes all the way when she is asleep, another Margret trait. That is comforting in a way I can't explain. It just is.<br /><br />Yes, I'm still here. I'll never forget my sorrows, but I know I'm not finished with my joys. I'll go on living and loving and doing fun things.<br /><br />I'll rise again tomorrow. Just like the sun.Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com5tag:blogger.com,1999:blog-6427807923120089796.post-89707449948896178082010-07-08T16:12:00.003-04:002010-07-08T16:22:34.663-04:00Happy Birthday, Margret!It's Margret's birthday today. She would be 39 this year.<br /><br />Margret would approve my day's activities. I got a TDaP booster since I can't remember the last update I had, and am planning some travel. I'm catching up on some paperwork (a chore, ick, but chores gotta be done). I'm making some earrings (Yay, a FUN activity!). And I'm eating sensibly.<br /><br />She would also be happy that on Monday I called the church number to talk to the pastor who came to visit her in hospital. He was away on vacation, so I left a message with the secretary thanking him for his visits, thanking the membership for their prayers because that meant a lot to Margret. He had asked if there was anything else, anything at all, that they could do for Margret, and I responded it would be a help if anyone willing would donate blood in Margret's name to replace the blood products she used. I've been told that as a cancer survivor I should not donate. And I said thank you to those who donated.<br /><br />Happy Birthday, Sweetie! We still miss you, and we remember you with love and fondness.Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com2tag:blogger.com,1999:blog-6427807923120089796.post-24594195510431046102010-05-13T10:33:00.002-04:002010-05-13T14:43:26.598-04:00For Mother's DayA bit late, but still apropos, I found something to share with you, by someone who says it better than I can. I found myself in it *, and so might you.<br /><br />You may want to keep tissues handy while you read.<br /><br /><span class="Apple-style-span" style="font-size: x-large;"><b>To You, My Sisters</b></span><br />By Maureen K. Higgins<br /><br />Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores.<br /><br />I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."<br /><br />Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.<br /><br />We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds.<br /><br />We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.<br /><br />All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.<br /><br />Something wasn't quite right. Then we found ourselves mothers of children with special needs.<br /><br />We are united, we sisters, regardless of the diversity of our children's special needs.Some of our children ungergo chemotherapy.Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.<br /><br />We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. Weknow "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them.<br /><br />Without formal education, we could become board certified in neurology, endocrinology, and physiatry. We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish.<br /><br />We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy.<br /><br />We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.<br /><br />We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.<br /><br />We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.<br /><br />We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.<br /><br />We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.<br /><br />We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.<br /><br />We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.<br /><br />But we, sisters, we keep the faith always. We never stop believing.<br /><br />Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes.<br /><br />We never, never stop believing in all they will accomplish as they pass through this world.<br /><br />But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.<br /><br />Here is <a href="http://www.sneakpeekatme.com/2010/05/to-you-my-sisters-special-needs-moms.html">a link to the post</a> where I found it on Janis' blog, and <a href="http://www.livingwithtrisomy13.org/inspirations.htm">a link to the original source</a>. Go read. There's more inspiration to be found there, too.<br /><br />*"Without formal education, we could become board certified in neurology, endocrinology, and physiatry."<br />Yes, this. In particular, I can recall being asked where I took my medical studies. The first time I was asked, I replied that I was not a medical professional. Other times I replied the library, books, the internet. Simply being Margret's mother was an education.<br /><br />Simply being the mother of a special needs child is an education. Sometimes we can turn the tables and educate the doctors,Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com0tag:blogger.com,1999:blog-6427807923120089796.post-26521376571640334882010-03-03T13:53:00.003-05:002010-03-03T14:21:29.210-05:00Grief Support GroupI joined a Grief Support Group.<br /><br />... and found myself surrounded by people who totally get it.<br /><br />Which is not at all strange, as each of them has someone very dear to them who is not sharing this life of ours any more.<br /><br />Each of us has chances to tell our story, and to talk about our dear one. We are encouraged to talk about what we are feeling, share "ah-HA!" moments, and tell how hard the holidays, and anniversaries, were, and what changes or accommodations our friends and family have made.<br /><br />At the last meeting in each series, the group members bring photos of their dear one, and pass the photos around the circle while we talk.<br /><br />In addition to pictures, I brought an audio snippet of Margret's voice, and her giggle.<br />Here, I'll let you listen, too. <a href="http://margretfan.homestead.com/MargretMomRocks.mp3">Clicky</a>Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com4tag:blogger.com,1999:blog-6427807923120089796.post-48861680821976525132009-12-05T15:57:00.003-05:002009-12-05T16:07:42.716-05:00That photo of Margret and Santa?The photo of Margret and Santa in the post below was from the year she wanted to give photos to friends and family for Christmas presents. She insisted that she didn't want Fred (what she called her portable oxygen setup) in the picture. It made Santa very nervous. Even though I assured him (and the camera gal) that her doctor had okayed 15 minutes off the oxygen, he kept reminding the camera gal that she needed to hurry.<br /><br />It was a long line, a long wait, and I was more concerned whether her tank was going to run out before we got home. It did run out, on our way to the mall door. I had her wait at the door while I got the car. She climbed in, and settled down to relax on the way home. She was very happy with her photos, and not at all worried about her oxygen running out.<br /><br />When we got home, I hooked her up to another tank, and had her sit in the car for a few minutes to let her oxygen saturation rise before she came in. She was fine. She was happy, and the <span style="font-style: italic;">happy</span> was what was important that day.Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com1tag:blogger.com,1999:blog-6427807923120089796.post-17851144510393138262009-12-02T15:04:00.002-05:002009-12-02T15:07:18.358-05:00Thanksgiving and Cranberry RelishThanksgiving this year was not nearly as hard for me as last year was.<br /><br />I even made the cranberry-orange relish that my girls remembered from when they were growing up. One of them asked if I would make it, and I did. I use a meat grinder to chop the cranberries and oranges, and she asked if she could have the grinder. I said "Sure!"<br /><br />To make my relish, you need:<br />3 12 oz bags of fresh cranberries<br />2 medium navel oranges<br />1 cup of sugar (possibly a little more sugar if the berries and oranges are very very tart)<br />a bowl large enough to hold all the berries and oranges, a saucer and a wooden spoon<br />1 slice of bread (for pushing out the rest of the oranges from the grinder)<br /><br />Wash and quarter the oranges<br />Wash the cranberries; pick out and discard stems, leaves and mushy berries<br /><br />Run the cranberries through the grinder, alternating with orange quarters, and making sure the friskier berries don't jump out.<br />As the grinder stops producing ground fruit, put the slice of bread into the grinder.<br />When bread appears at the grinder plate, remove the bowl, and place the saucer to catch the bread.<br />Clean the grinder, dry and put away.<br /><br />Add the sugar to the bowl of cranberry orange stuff, and mix thoroughly with a wooden spoon (or equivalent).<br /><br />Let the relish sit overnight to blend the tastes.<br /><br />...<br /><br />And the lovely lady who made the large blue tag with Margret for me, well, she made one especially for this Christmas, and here it is:<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjerAYFeG98C3sFhcvHcgAw0-SNThpNrFz3_WqXExEU8f_TE6h4syGy6D0txyHBAekJNHp4KxHtI-4Acqr7QF90oVECev7S7n65yD1w6VScSGlFPcUoX6Tb7AhzFwpBGn1M9tJkawAFhRtR/s1600-h/JezChristmas.png"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 262px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjerAYFeG98C3sFhcvHcgAw0-SNThpNrFz3_WqXExEU8f_TE6h4syGy6D0txyHBAekJNHp4KxHtI-4Acqr7QF90oVECev7S7n65yD1w6VScSGlFPcUoX6Tb7AhzFwpBGn1M9tJkawAFhRtR/s320/JezChristmas.png" alt="" id="BLOGGER_PHOTO_ID_5410732572861393170" border="0" /></a>Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com0tag:blogger.com,1999:blog-6427807923120089796.post-47903837491122792452009-11-22T15:16:00.002-05:002009-11-22T15:39:56.151-05:00October can be the Cruelest MonthYes, Margret's birthday was in July, and the anniversary of her passing is also in July. July was cruel all on its own.<br /><br />October is the month Margret and I packed our clothes, our supplies and our courage and set out on a road trip half way across the USA. This year was supposed to have another road trip across the country to visit Margret's little sister and her family.<br /><br />I have been mourning the loss of the road trip. I have my memories of the previous ones, but those memories don't help much right now. I remember, cherish, and still miss, all the little details of our travels together:<br />the companionable silences<br />the friendly chatter about anything, everything and nothing at all when we discussed and solved the problems of the universe in general and our little bit of it in particular<br />"Is it time for dinner yet?"<br />her desire to eat healthy, but still to eat what she wanted<br />requests for unscheduled pit stops<br />her delight to meet and chat with my leathercraft friends at the IFOLG show in Butler<br />her patience with me when I missed an off ramp and got us headed in the wrong direction just outside Chicago<br />how thrilled she was to hug, play and talk with her niece and nephews<br />shopping with her sister<br />how the route home seemed longer than the outbound routeAnn of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com0tag:blogger.com,1999:blog-6427807923120089796.post-13493214543996547392009-09-13T12:25:00.002-04:002009-09-13T12:50:12.345-04:00Not Done with TearsI had thought I'd be mostly done with tears by now. It is, after all, more than a year since Margret died. But no. I have moments when some small thing brings the tears welling in my eyes.<br /><br />I've signed up for a grief support group. First meeting is tomorrow.Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com5tag:blogger.com,1999:blog-6427807923120089796.post-6654366982928322282009-08-15T11:40:00.002-04:002009-08-15T12:32:31.450-04:00That's no Revelation!It's no revelation that Margret had extremely good care and good medical support in the years after her diagnosis with pulmonary hypertension.<br /><br />There's a new doctor in my family group, and I met her on Thursday. After we discussed my knee, and what to do about it (an x-ray which showed nothing amiss and a visit to the orthopedic doc next week) I said, "it's a shame you didn't get to meet my daughter Margret." She said, "I'll get to see her next time," and I had to stop her and explain that Margret died last year. Then I explained about the heart defect, and the pulmonary hypertension.<br /><br />What put me in such a mood that I had to mention Margret? I was sitting in the Mom chair, gazing out the window over the exam table where Margret would sit, and thinking how she sat there every three months, waiting to see her doctor, chattering about something fun, and expecting a good report. I thought about the times she sat there feeling less than perfectly well, and how she sometimes thought I was overcautious. It made me sad to think we'll never be doing either again.<br /><br />On my way out, I stopped at the nurses' station to get my ortho appointment, and the lady helping me was the same one (named after a lovely purple flower - I shall call her P, for Petunia, which isn't her flower but does come in a lovely purple) who handles referrals. I thanked her for the extra miles she'd gone to make sure Margret had all her referrals when she needed them, and for the time she'd sent one that vanished, and had to be sent again on the instant while we were waiting in that particular doctor's office to be seen.<br /><br />"That's what we're here for," she said, and she remembered the mysterious vanishing referral. "I still have no idea where it went."<br /><br />We chatted about Margret, and another doctor dropping papers off at the station said, "You're talking about Margret, aren't you? Everybody loved Margret."<br /><br />I told him I very much appreciated the uniformly good care Margret got from the group.<br /><br />He asked how old she was when she died; he said thirty seven was a very good age for someone with her unrepaired heart defect. He said, "she had very good care, and not just here."<br /><br />The new doctor stepping up with her next paperwork heard, and added that she had cared for a number of patients with similar problems who had died in their late twenties; that Margret had done very well.<br /><br />Margret had the best care that I could arrange, balanced with something like a normal life. Perhaps she would not have caught that awful bug if I had kept her in a bubble, kept her away from other people, kept her out of places with sniffling, sneezing human beings, but what fun would that have been? Margret lived for interaction with her friends. She loved to meet new people. She loved eating out, and she loved when we traveled.<br /><br />A lot of things come down to luck, I suppose, and that bug she caught was one of them. Her good care was not luck, neither was how much she was loved. That was us loving her back for how loving she was. That was us doing our best to see that she had a long and happy life.<br /><br />You did a great job, kiddo.Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com5tag:blogger.com,1999:blog-6427807923120089796.post-28525170715438711592009-07-17T15:13:00.001-04:002009-07-17T15:52:34.959-04:00My Mom and MeMy Mom and I have been at odds over something or other most of my life. It seemed to me that I could never do anything right. Or not right enough for her. No gift I gave her as an adult suited her, either, it seems, (she often gave them back telling me she didn't want them, maybe she just meant she had no use for them? or place to display them?) but when we were clearing out her house so it could be sold, we discovered a collection of the things I made for her in kindergarden and the early grades.<br /><br />I've heard it suggested that we butted heads so often because we are very much alike. I don't know if that's true. I'd rather it weren't, thank you very much. I do not want to make my daughters feel the way she made me feel.<br /><br />I'm sure she loved me. She read to me when I was sick, she came to the hospital and stayed at my side when I had my tonsils out. When I was in kindergarden, we were supposed to tell our parents that we could come in costume for Halloween. I forgot. Mom walked me to school, and when I saw all the costumed kids, I refused to go in. She asked what the matter was. I must have explained, because we walked back home, cobbled together a costume from a kitchen apron and the headpiece with bunny ears from another costume, and I went as Mrs. Rabbit, Peter Cottontail's mother.<br /><br />I was a disappointment to her in many ways. I was only one child, when she wanted a gaggle of younglings at her feet. As I grew up, I turned into someone who wasn't the daughter she wanted. I didn't follow her plan of college, graduate school, a career in science, and then a family. I rebelled. I fell in love with the guy who sat down next to me in Latin class, and told such interesting stories. I married him and dropped out of college. We had kids together. He left me. I have to hand it to Mom that she never said, "I told you so," when I called to let her know he was gone.<br /><br />As adults, we got along better living far apart. Any time my parents visited for more than three days, my Dad had to referee. I remember one visit when, after my parents left, I couldn't find the can opener. My daughters told me Mom had found it where I kept it, and muttered that it didn't belong there, it belonged in the OTHER drawer, and they watched while she rearranged a variety of things in my kitchen to suit herself.Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com3tag:blogger.com,1999:blog-6427807923120089796.post-28333339357928817822009-07-15T13:08:00.002-04:002009-07-15T13:30:28.987-04:00Margret Would Love this ArticleMargret would have smiled, chirped with glee, bounced and clapped her hands to have this article read to her.<br /><br />She had a boyfriend or three, but her relationships never reached the point of seriously contemplating marriage. Contemplating marriage was something she did on a regular basis, though, even marriage with guys she had only seen walking down the street, or heard about from some friend. It's the <span style="font-style: italic;">seriously</span> part that didn't happen.<br /><br />Thanks to Jess on Raising Joey for this link:<br /><br /><a href="http://www.mlive.com/news/citpat/index.ssf?/base/news-28/1240740321256200.xml&coll=3">http://www.mlive.com/news/citpat/index.ssf?/base/news-28/1240740321256200.xml&coll=3</a><br /><br />Sunday, April 26, 2009<br />By Monetta Harr, For the Citizen Patriot <p><em>A school-age snapshot of Alex and Alexis sharing a hug clearly shows the affection between the two when they were classmates at Columbia’s Miller Elementary School. </em></p> <p><em>Flash forward to high school. Alex’s family had moved to the Napoleon school district, and the friends lost contact until his photo appeared with a Citizen Patriot story about him serving as manager of the boys basketball team. </em></p> <p><em>Alexis’ mother saw it and suggested her daughter give him a call and invite him to prom. </em></p> <p><em>Today they celebrate their first wedding anniversary. It is a love story made even more so because the couple have Down syndrome. </em></p> <p><em>“I can’t even put into words how wonderful that feels, that Alexis found someone to love and be happy with. It’s what every parent wants for their child, and it’s wonderful,” said Laura Smith of Clark Lake, Alexis’ mother. </em></p> <p><em>On April 26, 2008, Alex DeNato, 27, and Alexis Smith, 25, were married in Queen of the Miraculous Medal Catholic Church, vowing to love one another as husband and wife. </em></p> <p><em>They have a two-bedroom apartment in Alpine Lake Apartments, chosen because it is on the Jackson Transit System line and they use its Reserve-A-Ride service to get to work. </em></p> <p><em>Alex washes dishes and peels potatoes at the Napoleon Café, and Alexis bags groceries at Polly’s Country Market in Brooklyn. They walk to Citizens Bank on Fourth Street and often walk to visit his parents, Mark and Chris DeNato, in Summit Township. </em></p> <p><em>Alexis handles their money and checkbook, and Mark DeNato tracks it online, but rarely does Alexis make a mistake. </em></p> <p><em>Laura Smith drives them to Polly’s Country Market at Ferguson Corners one weeknight each week. </em></p> <em>“I usually sit in the car and talk to my sister,” said Smith, an X-ray technologist at Columbia Medical Center in Brooklyn. “They do their own shopping, have a list, and they don’t need me.”</em>Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com1tag:blogger.com,1999:blog-6427807923120089796.post-48720010320468000322009-07-14T13:45:00.002-04:002009-07-15T00:49:52.576-04:00I Still Miss You, MargretOne year ago today, we said goodbye to Margret, and let her go home.<br /><br />She was ready to go.<br /><br />Wouldn't it be lovely if she could write from where she is, and tell me she's happy, healthy and has plenty of interesting things to do?Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com4tag:blogger.com,1999:blog-6427807923120089796.post-70337148308228761872009-07-10T19:48:00.002-04:002009-07-10T19:52:34.357-04:00Wednesday was Margret's BirthdayWe celebrated.<br /><br />We went out for dinner, and had cheesecake for dessert. Margret liked cheese cake a LOT.<br /><br />Then we had a fire to sit around. When it was going nicely we put gifts for Margret on it. The gifts are symbolic - empty boxes wrapped as gifts. <br /><br />We thought of all the wonderful things Margret did in her life, and told each other stories.<br /><br />Celebrating her birthday without her hurts, but it hurts less than not celebrating her birthday at all.Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com2tag:blogger.com,1999:blog-6427807923120089796.post-52209464422245952002009-06-28T17:16:00.003-04:002009-06-28T17:37:00.136-04:00High School GraduateWhen Margret was in High School, and getting ready to graduate, her teacher suggested she compose a speech for the commencement ceremony. She asked me to write the speech for her; I refused and had a little chat with her teacher. So, she and her teacher worked on the speech together. I asked how the speech was coming. She told me "It's a surprise," and gave me a bright smile.<br /><br />On the big day, dignified in her bright gold cap and gown, she stepped up on the box placed behind the podium to bring her four foot eight inches high enough to see over it, surveyed the auditorium and began.<br /><br />I wish I had a transcript of her speech. I remember it as being thoughtful and moving, but I cannot remember exactly what she said.<br /><br />Her choice of a graduation present wasn't what the average graduate would choose, either. She wanted a photograph of everyone who came to her graduation. After the ceremony ended, we piled in the cars and headed over to the photographer. Two of the party members had to go, delivering papers and baby sitting, if I remember right, and I might not, so they didn't make it into the photo. Sorry. But there we all were, the rest of us: Margret, her father, her sisters, B's boyfriend, me, my husband, one of the girls who lived across the street.<br /><br />Yes, she invited her father to come to her graduation. She is the only one of his daughters who did so. He came by bus. When I mentioned he was going to ask the bus drivers where would be a good place for him to stay, another daughter suggested I let him stay in our house. I was surprised, but checked with the other siblings, and with my husband, and it was agreed. He stayed with us.<br /><br />As I drove to the bus station for him to head back home, he said he was glad I'd married my husband, calling him "someone the girls can look up to". Upon my return, my husband said nice things about how fascinating the father was, and how well he spoke. Yes, I was pleasantly surprised that they got on well with each other.Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com2tag:blogger.com,1999:blog-6427807923120089796.post-71663767842619017912009-06-27T09:24:00.001-04:002009-06-27T09:25:38.531-04:00A Year Ago This DayA year ago today, I woke to the music of Margret's voice. She was talking with her sisters, and sitting up in bed.<br /><br />She came back to be with us for such a brief time. Although it was only to be for a few more weeks, I am grateful for every minute we were able to share.Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com0tag:blogger.com,1999:blog-6427807923120089796.post-18611507423192936152009-06-26T22:18:00.002-04:002009-06-26T23:00:19.610-04:00A Year AgoA year ago yesterday was the date Margret got her first (and last) helicopter ride as she was transferred from the local hospital to the hospital in Philadelphia where she could be cared for by her specialist.<br /><br />A year ago yesterday was the day she said, with fear in her face, "I'm not ready to die!"<br /><br />A year ago today, she had enough with the pain and the hard time breathing that she said, "I quit!", threw everyone out of her room and then lay unresponsive until her sisters came to see her. While the sisters and I were discussing possible birthday party plans, she wiggled her toes. The next morning I woke to the sound of her voice. I was so very very happy.Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com0tag:blogger.com,1999:blog-6427807923120089796.post-58704181679221538972009-06-05T15:25:00.002-04:002009-07-11T12:28:33.117-04:00Margret's Pill Learning Hint<span style="color:#4d4d4d;"><span style="font-family:'Franklin Gothic Medium', sans-serif;">We all need a nudge in our memories from time to time. In my search through assorted saved papers, I came across a page with the following written out by hand. I can always recognize Margret's printing when I see it.<br /><br /><span style="color: rgb(0, 0, 102);">I make lists to help remember everything I'm planning to do in a day. I have a pen and a square note block by my bed, because I often think what I need to do in the next day as I'm getting ready to sleep. - Margret's mom</span><br /><br /><br /><span style="color: rgb(51, 0, 153);">I take pills in the morning and in the evening, plus one in the late afternoon. Mom thought it would be a really good thing if I knew what I am taking. My mom took a photo of my morning pills and labeled the picture in photo software with what each pill is. She took another picture of my evening pills, and labeled them, too. That's how I learned exactly what I'm taking. - Margret M.</span><br /><br />As it happens, I remember an occasion when I handed the pill cup to Margret, and she said, "Mom, should there be two of these?" I looked, and replied, "No. Good catch!"<br /><br />There was another time when the pharmacy changed suppliers for one of the generic medications. The pill changed shape and color. I got them home, opened the bottle to start setup for the next week and freaked out. I called the pharmacy and spoke to the pharmacist, who apologized. I wasn't notified about the change because it happened right after I had picked up the last month's supply. The pharmacist thought I already knew.<br /><br />That night, Margret picked out the new pill and asked, "What is this?"<br /><br />"Good catch," I said, then told her the change story.<br /><br />I think all our kids should know what they take, and what it's for, to the best of their ability. And if there are medications that they should NOT have, they ought to know about those, too. Good reason to have a MedicAlert bracelet or necklace as a backup.<br /></span></span>Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com0tag:blogger.com,1999:blog-6427807923120089796.post-37508425390916044092009-06-02T13:28:00.003-04:002009-06-02T13:52:24.130-04:00Craft It ForwardI've seen this on a few blogs I've been reading recently. Those posts were mostly back in March, and it has suddenly become June... where did the time go?<br /><br />Here are the rules:<br />The first five people to respond to this post will get something made by me! This offer does have some limitations:<br /><br />1. You will not know what it's going to be, and there are no guarantees that you will like what I make! It may be something simple and small or I may go crazy and do something amazing.<br /><br />2. It’ll be done this year. Translation: you may be waiting a little while.<br /><br />3. Most importantly, you must offer the same deal on your blog - the first 5 people to comment on your blog (or <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Facebook</span> or whatever, if you don't have a blog) get something made by YOU!<br /><br />My variation on this meme (I think that's the word that means these things that get passed around from blog to blog) is that if you've done it already, you don't have to do it again to get something crafted by me.Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com6tag:blogger.com,1999:blog-6427807923120089796.post-76858061266850465762009-05-31T12:03:00.006-04:002009-05-31T14:31:27.875-04:00Place Memories of MargretMargret first lived in a RecV, a converted bread truck. Then she lived in a travel trailer with her parents, and her sisters as they arrived. Her dad left while she lived there.<br /><br />The trailer was too small, so she moved with her mom and sisters to a second floor apartment. She and her sisters thought it was enormous. For the first few weeks, she and her sisters would follow her mom from room to room, not sure they wanted to let her get that far away. (or out of sight?) She went to school, made friends, and did normal kid things while she lived there. She went often to a nearby state park with her family, followed the paths, watched animals (Look! A chipmunk!), learned to identify some common plants and skipped stones in the creek.<br /><br />She and her sisters spent a year with her dad in Arizona, over two thousand miles away. She went to school, made friends, went to the rim of the Grand Canyon. She participated in Special Olympics and brought home three medals. Cross country skiing is just not something I would have thought of, back here in Pennsylvania, but she enjoyed it, and was good at it.<br /><br />She came back to a two story house with attic bedrooms for her two younger sisters. She started horseback riding lessons while she lived there, and started aquacize lessons with her mom. She hung out with her sisters and the girls from across the street. She walked places.<br /><br />She moved with us to another two story house with finished attic. She went to the Prom, had a job, took ceramic painting classes and made lovely stuff, was diagnosed with depression, stopped taking riding lessons, diagnosed with Eisenmenger's, lost the job, started volunteering, and started to use supplemental oxygen while she lived there. Her sisters went off to college and moved away. She learned to knit, got a knitting machine, and made scarves for everyone in the family one Christmas.<br /><br />She moved to a one story house with her mom and mom's husband. Although her mom hates moving she liked the one story house. Margret liked the one story house better than the two story house, too. For one thing, it had whole house air conditioning, and that helped keep her comfortable. Her bedroom was on the first floor so she didn't have to do a flight of stairs when she was weary. Even though a few stairs go down from the main part of the house to the TV room, it wasn't the effort it was for her to go up and down stairs in the two story. She volunteered, saw her doctor regularly, went on a couple road trips to see her little sister and her family, went to a live concert in New York City, no, make that THREE concerts. She made latchhook squares from kits, and planned to which sister, niece or nephew she would give them.<br /><br />Her last room, for a tad longer than two weeks, was in a hospital, with doctors, nurses, IV pumps, cards, visitors, phone calls, family, a ventilator mask, complete with ventilator, monitors and alarms, misery, and in the end, peace.<br /><br />Margret is a believer, so she has moved to Heaven. She often told me she was an angel. I didn't want her to say that, because I know angels can't stay here very long.Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com3tag:blogger.com,1999:blog-6427807923120089796.post-79978879965990012802009-05-28T15:30:00.003-04:002009-05-28T18:30:54.862-04:00Remembering a Moment of Margret PrideWe are coming around to a year from when Margret was first sick. We didn't know then, she and I, the journey we were on. We didn't know the destination. We were living life as we knew it, coping in ways we had figured out along the way.<br /><br />Margret was at home because she was coughing and not feeling great, when my new computer arrived. The driver needed a signature to leave it, and Margret signed for it. I was out making a run for yummies and supplies.<br /><br /> When I got home, she was very proud of herself for figuring out what needed to be done, and doing it. I was very proud of her, too. We hugged. She beamed. Her grin lit up the whole room.Ann of the Incredible Gifthttp://www.blogger.com/profile/15386825471705879253noreply@blogger.com0