tag:blogger.com,1999:blog-60846578859553375132024-03-08T21:58:26.835-05:00And Life Goes On...An Angel and a RainbowJill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.comBlogger616125tag:blogger.com,1999:blog-6084657885955337513.post-15263236899035277082024-03-07T22:15:00.001-05:002024-03-08T21:57:55.834-05:00An award<p> It's been many years since I have written a post. I really don't know what to write anymore. Dan would be 17, a junior in high school. Shelby is nearing the end of 5th grade. Time marches on.</p><p>A couple of months ago, I was nominated for a Founder's Day PTA Award. These awards provide a way for each PTA to recognize a volunteer and a staff person for going above and beyond. Tonight was the award ceremony.</p><p>The friend who nominated me gave a short speech. My acceptance speech was probably the longest speech of the night. I've copied it below - but this isn't what I said. I will update the post with the video once I have it. </p><p>This speech was for Dan. It was for Shelby. It is for every kid who has special needs. Parents - I see you, I support you. </p><p><br /></p><p>Speech:</p><p><br /></p><p>I am honored to receive this honorary membership. My experience was special needs started over 20 years ago with my stepson who was placed in a self-contained middle school special education class. While we knew his academic struggles were behavior related, we were powerless to have him moved into general education classes.</p><p><br /></p><p>5 years later our son was born with significant Medical issues, and we were dropped back into the world of special needs, this time for medical reasons. Over the course of the five years of our son's life, we learned everything we could about his disease and we educated hundreds of physicians, physician assistants, other medical personnel, as well as providers such as occupational therapy, speech therapy, and physical therapy.</p><p><br /></p><p>It was during these 5 years I realized that parents did not have information available to them to support their children in the way they needed to be supported. Information about what resources were available, what departments to contact, how to obtain information, how to access services, who to turn to when you needed help, all of these things were passed down family to family. There was no one repository of all this information, there was no checklist of things to do. Social media didn't exist.</p><p><br /></p><p>So my first goal became to learn everything I could about rare diseases, because that is what we were dealing with with our son. Typical therapies did not help, so we had to advocate well outside the normal box a strategies to access things that we thought would provide him with the best life he could have.</p><p><br /></p><p>My second goal was to connect families of those special needs together, to provide one place where families could share their knowledge with each other. I started a special needs group for parents back on Meetup, many years ago. It started with parents that I had met, locally, in my attempts to obtain services and supports for our son.</p><p><br /></p><p>After he died from his rare disease I poured my heart into this group. I moved it from Meetup to Facebook, right now this group has over a thousand members and covers an area from the Canadian border down to about Poughkeepsie from Massachusetts / Vermont to about Johnstown. And every day there are questions about how to obtain evaluations for children, how to obtain an IEP, how to access services, where to access services, what providers are available for certain needs. There are parents who respond with their experiences and it provides a community of support for all of us.</p><p><br /></p><p>About 5 years ago our daughter entered Charlton Heights. It was quickly evident that she had some special needs as well although not Medical needs. With the assistance of Kathy, who was one of the occupational therapists we had with Dan our son, so we have known her many years, we identified her issues and obtained help to get our daughter the services she needed. Just this week we started planning for her transition to Middle School, and what supports she will have going with her, including what they look like, who will help her, where she can turn for assistance.</p><p><br /></p><p>When most people think of special needs they think of wheelchairs or canes for those who are blind or seeing eye dogs. More and more special needs are the neuro diverse needs of many of the kids. Autism, adhd, trauma responses, obsessive compulsive disorders, speech issues, anxiety, all of these are special needs, and all of them can affect learning.</p><p><br /></p><p>If you have kids in the buildings I bet you there is at least one student that sits next to your child who has some sort of special need or accommodation. Sometimes it's as simple as having a map, or labeled folders, or a touch strip on their computer that they can rub. Or they may be allowed to stand up and stretch and move around. Or they see a social worker for help with social skills or they see someone to help them with organization, keeping things organized in there notebooks in their binders in their lockers.</p><p><br /></p><p>Having a child with special needs is a full-time job on top of the full-time job of being a parent and any sort of employment. It's finding that program that's going to give them a typical experience but that is not with typical kids. It's panicking when the school calls because you don't know if your kids behavior has escalated out of control. It's the small victories, getting a gold star in the agenda for having a good day.</p><p><br /></p><p>When I saw that the district was starting a SEPTA, I knew I had to be there. I knew I had to advocate for all of the kids that are currently in the district that needs support, and for all the kids to follow. I knew I needed to be there to educate others on what it means to have a child with special needs. I knew I needed to be there to ensure that activities were inclusive of all, it's important of his many different challenges as possible.</p><p><br /></p><p>You don't know what you don't know, and if you don't have experience with special needs, you don't know the challenges and the joys we have. I am honored to receive this membership and I will continue to advocate for my child and all the other children in the district, to have as normal an experience as possible, to not be identified as someone was special needs, but instead to be identified as a peer, as a friend. Maybe I'll take a moment to recognize the differences we all have, and to think about how we can support each other, as parents as friends as educators. Thank you.</p><p><br /></p><p>Video: about 5 minutes https://youtu.be/zJaY0M2SL0s?si=Bvr3ZoNTl_TYDnjg</p><p><br /></p><p></p><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><p></p>Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com1tag:blogger.com,1999:blog-6084657885955337513.post-550073494182187412019-04-27T20:45:00.001-04:002019-04-27T20:45:44.700-04:00A letter<div dir="ltr" id="docs-internal-guid-a4c915ed-7fff-3408-cb7d-b12a17dfbed0" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Dear Dan,</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">You were an unexpected blessing. I never saw myself as a mom. You made me see the world in a different way. You taught me what it means to love unconditionally. You wrote on my heart. I watched you grow and learn, as only you could. I watched you struggle. I was scared out of my mind every day that I wouldn't be able to say goodbye. </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">You taught me so much. I learned to stand up for myself, stand up for what I believed in. </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">You sent your sister to help me learn more of what you tried teaching me. I see you in her everyday. She sees you and plays with you. </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Patience. Creativity. Fun. Presence. Love. Kindness. </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Your 11’s are a message. A message to follow my instincts and my gut. A message to be the best person I can be to myself, dad and Shelby. A message to believe in myself.</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">I love you Dan. You will always be my baby, no matter how “old” you get.</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Love, Mom</span></div>
<br />Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com0tag:blogger.com,1999:blog-6084657885955337513.post-45025670067865503082019-04-07T18:15:00.000-04:002019-04-07T18:15:25.678-04:00April Showers (in the eyes)Springtime always seems to bring me some tears. It's an odd time of year to get sentimental and teary-eyed, but that's what grief is.<br />
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Unpacking the backyard firepit, cleaning up the yard. These remind me of the fun times that Dan had in the backyard - driving around on his kid quad, chasing after us with sticks - laughing all the time. I can't easily find it, but I remember putting him in snow pants because our backyard is usually soggy for most of April and sometimes into May.<br />
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<br />Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com0tag:blogger.com,1999:blog-6084657885955337513.post-17948818735358034302018-12-07T21:47:00.001-05:002018-12-07T21:50:42.133-05:00December 7This poem was shared with me today, for Dan's 12th birthday.<br />
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<span style="background-color: transparent; color: #4f81bd; font-family: "helvetica neue"; font-size: 9pt; font-weight: 700; vertical-align: baseline; white-space: pre-wrap;">Mom to An Angel</span></div>
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<span style="background-color: transparent; font-family: "helvetica neue"; font-size: 9pt; white-space: pre-wrap;">Mommy, mommy, </span></div>
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<span style="background-color: transparent; font-family: "helvetica neue"; font-size: 9pt; vertical-align: baseline; white-space: pre-wrap;"><span style="background-color: transparent; font-size: 9pt;">I'm in heaven now, </span></span></div>
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<span style="background-color: transparent; font-size: 9pt;">God is keeping me safe and warm, </span></div>
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<span style="background-color: transparent; font-size: 9pt;">just as you did from the day I was born. </span></div>
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<span style="background-color: transparent; font-size: 9pt;">We need to cherish the memories, </span></div>
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<span style="background-color: transparent; font-size: 9pt;">till the day you're here with me. </span></div>
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<span style="background-color: transparent; font-size: 9pt;">Think of all the times you made me laugh, </span></div>
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<span style="background-color: transparent; font-family: "helvetica neue"; font-size: 9pt; white-space: pre-wrap;">and smile.</span></div>
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<span style="background-color: transparent; font-family: "helvetica neue"; font-size: 9pt; vertical-align: baseline; white-space: pre-wrap;"><span style="background-color: transparent; font-size: 9pt;">You made me the little boy I am today, </span></span></div>
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<span style="background-color: transparent; font-size: 9pt;">now let God take over he has his ways. </span></div>
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<span style="background-color: transparent; font-size: 9pt;">I'm an Angel now Mommy, </span></div>
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<span style="background-color: transparent; font-size: 9pt;">watching over you, </span></div>
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<span style="background-color: transparent; font-size: 9pt;">Oh I wanted to let you know I have</span></div>
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<span style="background-color: transparent; font-family: "helvetica neue"; font-size: 9pt; white-space: pre-wrap;">received my wings, </span></div>
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<span style="background-color: transparent; font-family: "helvetica neue"; font-size: 9pt; vertical-align: baseline; white-space: pre-wrap;"><span style="background-color: transparent; font-size: 9pt;">When we see each other again, </span></span></div>
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<span style="background-color: transparent; font-size: 9pt;">I will teach you how to use these things. </span></div>
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<span style="background-color: transparent; font-size: 9pt;">I want you to laugh Mommy,</span></div>
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<span style="background-color: transparent; font-size: 9pt;">and I will too.</span></div>
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Some days are tougher than others. Today was one of those days. Even our Elf "Love" knew we needed extra hugs.</div>
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Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com0tag:blogger.com,1999:blog-6084657885955337513.post-39998871091454358052018-05-06T20:46:00.000-04:002018-05-06T20:46:00.078-04:00Bereaved Mother'sThe Mother's Day I was pregnant with Dan, I looked at all the Mother's Day cards and couldn't wait for Dan to pick one out or create one in school. He would be so proud of what he picked out or created. <div>
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I had 5 Mother's Day's with him. 5 glorious days - with the last one just before his diagnosis of Niemann-Pick.</div>
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Then came the Mother's Day after we was gone. One of the worst days I have had. I felt like a failed mom - I couldn't keep my child safe, I couldn't protect him - I had failed as a mother.</div>
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The Mother's Day I was pregnant with Shelby, I started to look forward to those hand picked or hand created cards. I was confident that I would have many years of those cards to look forward too. My job as a mother wasn't complete - I was given a second chance.</div>
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The past couple of years, I have seen posts and articles about International Bereaved Mother's Day. I usually see them the day of, and I never realize when it is coming. I just realized that it is the 1st Sunday in May.</div>
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Anyway, today is that day - International Bereaved Mothers Day (#internationalbereavedmothersday). Yes, it's a real day. Would I say "Happy International Bereaved Mother's Day"? Um, no. But I have seen that phrase today. Must be from someone who just didn't realize what it meant.</div>
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I found a great article on Huffington Post today. Click <a href="https://www.huffingtonpost.com/entry/the-importance-of-international-bereaved-mothers-day_us_590ca647e4b046ea176aea8d" target="_blank">here</a> to read it. You can visit the official page about this day <a href="http://carlymarieprojectheal.com/2016/04/international-bereaved-mothers-day.html" target="_blank">here</a> and some additional "holiday" information <a href="https://www.checkiday.com/d636fd535322245c76bc62ecd9e2cc3b/international-bereaved-mothers-day" target="_blank">here</a>.</div>
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Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com1tag:blogger.com,1999:blog-6084657885955337513.post-20688184985095009562018-05-01T07:00:00.000-04:002018-05-01T07:00:04.047-04:00Book Review: Beauty in the Broken Places<div class="separator" style="clear: both; text-align: center;">
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I have been fortunte to be on several launch teams. I joined this book launch team for <a href="https://amzn.to/2KprBXO" target="_blank">Beauty in the Broken Places</a> because I could relate to Allison's journey into being an unexpected caregiver. When I received my copy to read, I kept putting it off because I didn't know if I wanted to re-experience the emotions what I went through with Dan - the sudden earth-shattering news, the loss of the life you expect to have, and your life being changed unexpectedly.<br />
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I eventually sat down and got completely immersed into Allison's and Davy's life - from the time they met, through his unlikely stroke, and into recovery. In reading the words, it felt like an old friend talking to me. Allison has an amazing way with words, an easy conversational style that sucks the reader into the story.<br />
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There were times I cried, because I had felt the same feelings. There were times I smiled and laughed, because, wellw ell just can't make up what happens in life. It was hard to put the book down, even knowing how it ends.<br />
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But, overall, it's about the strength of two people who fight through the challenges that life throw at them. Their marriage goes through challenges and they, and their marriage, come out stronger in the end.<br />
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If you have had marriage challenges, health challenges, or love to read memoirs, this book is definitely for you!<br />
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Here are just a few quotes from Lee Woodruff's forward and Allison's text:<br />
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<br />Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com0tag:blogger.com,1999:blog-6084657885955337513.post-21790126502364719832018-04-20T21:39:00.000-04:002018-04-20T21:39:23.432-04:00Child loss awareness in an unexpected placeI'm sure almost everyone has heard that Barbara Bush died recently. Have you read her obituary or any stories on her life? I can tell you that I learned something the other day while reading her obituary.<br />
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<b><span style="color: purple;">She lost a daughter at age 3 to leukemia</span></b>.<br />
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Yup. One of the most respected First Lady's experienced child loss. One article I read said that she refused to let anyone cry at her daughter's bedside while she was in the hospital. Another article said they traveled the country looking for treatment. Guess what? Many parents of those affected by rare disease do the same.<br />
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What really caught my eye this morning was an image of Ms. Bush greeting her daughter Robin in heaven, with both of them running to each other. Have you seen it? You can see it in <a href="https://www.today.com/parents/cartoon-barbara-bush-reuniting-late-daughter-brings-great-comfort-t127340" target="_blank">this article</a>. There are many other articles with the same image. I chose this one because of the 2 videos in it - one of Mrs. Bush talking about her daughter and the other a letter.<br />
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Although many years have passed, talking about child loss and grief is still a difficult subject. How many more years will it take to be an acceptable topic of conversation?Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com0tag:blogger.com,1999:blog-6084657885955337513.post-31347775447545128432018-03-01T06:01:00.000-05:002018-03-01T06:01:37.911-05:00Another Rare Disease Day is doneUsually I post quite a few items related to Rare Disease Day, held on the last day of February.<br />
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I obviously didn't this year. It wasn't for lack of wanting, it was for lack of knowing what to write.<br />
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One year I focused on those with <a href="http://immovingalong.blogspot.com/2014/03/rare-disease-month-2014-recap.html" target="_blank">Niemann-Pick Disease</a>. Another year, I focused on a bunch of <a href="http://immovingalong.blogspot.com/2013/02/rare-disease-posts.html" target="_blank">rare diseases</a>. I've even included a list of some of the <a href="http://immovingalong.blogspot.com/2016/02/rare-disease-month.html" target="_blank">rare disease statistics</a>. Some of these articles are still some of my most popular.<br />
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Other than losing quite a few of the people I featured, not much has changed in the rare disease world. <b>I've been blogging for about 6 years, and not much has changed.</b> Yes, there are now some treatments and some clinical trials for some of these rare diseases. Yes, awareness has increased.<br />
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Rare Disease isn't just an awareness campaign once a year - it is a daily struggle for so many. And so many are dealing with ultra rare conditions, they don't have a name yet.<br />
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The <a href="https://www.rarediseaseday.org/" target="_blank">2018 theme</a> was Show Your Rare, Show You Care. We all need to be a bit more caring to others, no matter if they have a rate disease or not.<br />
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<br />Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com0tag:blogger.com,1999:blog-6084657885955337513.post-57748920603794278062018-02-18T16:09:00.000-05:002018-02-18T16:09:06.037-05:00I've Been Thinking bookI've been fortunate to be asked to be part of a book launch team for Maria Shriver's new book, <i>I've Been Thinking</i>, due out February 27, 2018.<br />
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In one section she talks about grief and grieving.<br />
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Grief is not linear or time bound. Sometimes the unexpected causes grief to bubble to the surface. It never goes away, it is always under the surface.<br />
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And it is a subject that needs some talking about.Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com0tag:blogger.com,1999:blog-6084657885955337513.post-13998072236964343492018-01-21T10:15:00.000-05:002018-01-21T10:17:04.348-05:00Get Over ItThankfully I have never actually heard the words "Get over it". There have been many people, by their actions, who have made me feel like I should be "over it".<br />
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Well, here's the news flash - there is no "getting over" the loss of a child.<br />
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I read a great article about "getting over it" the other day. I encourage everyone, especially those who have never lost someone close to them, to read <a href="https://abedformyheart.com/why-we-will-never-get-over-it/" target="_blank">this article</a>.<br />
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The loss of a parent is similar to the loss of a child. There is one significant difference - a parent had a lifetime of experiences - including going to school, getting married, having kids, etc. Losing a child also means losing all those experiences. It's a very different grief process, one that you never "get over".Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com0tag:blogger.com,1999:blog-6084657885955337513.post-16989249131685187482017-12-14T16:33:00.000-05:002017-12-14T16:34:30.506-05:00MelancholyThis time of year always makes me think about the past year and I always get a bit melancholy.<br />
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This year it's hitting a bit harder. I was going through some "On This Day" posts this week. I think I realize why.<br />
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2011: I spent almost 24 hours editing videos and saving them to CDs to bring to Dan's doctors.<br />
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2014: Dan's urn arrived and we were finally able to give him is permanent resting place. I remember ordering it as soon as my Jamberry bonus arrived and Shelby kissing the bag of ashes (at 16 months) and saying "I love you".<br />
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This meteor shower last night also didn't help with the emotional balance. Plus the frigid weather is keeping me huddled up with comfort clothes and food.<br />
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Shelby doesn't quite understand why mommy locks herself in the bathroom at times. Sometimes a deep cry is healing.<br />
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<br />Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com0tag:blogger.com,1999:blog-6084657885955337513.post-5472033221307285632017-12-09T22:08:00.000-05:002017-12-09T22:09:43.244-05:00Time to slow downHave you ever looked at your day or week and said "where did the week go?" and your to-do list was never touched?<br />
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Yeah, well I did that today. And I realized that most of that busyness was created by others and we were just reacting to it. <br />
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It wasn't due to things that we were planning on doing, it was all the extras that everyone else decided were important for us.<br />
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Well, after this realization, it's time to make what my daughter and husband and I want to do the priority. We get so little time together as a family, we need to make the most of it.<br />
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So last night we went to a kids Polar Express party where Shelby created ornaments and a mug. Today was breakfast with Santa (to benefit a local non profit) with a bounce house and putting our own tree up. Tomorrow is a kids Christmas party for most of the afternoon.<br />
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Yes, we are busy. To see the joy on her face as she experiences new things, and remembers things from past years, is priceless.<br />
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<br />Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com0tag:blogger.com,1999:blog-6084657885955337513.post-75890250165938318162017-10-31T19:16:00.000-04:002017-11-06T07:18:58.841-05:00The end of OctoberThe end of October Awareness Month is here. That doesn't mean that I stop talking about Niemann-Pick Disease or my experience or asking for financial support for the families being helped by the NNPDF like we were. Here are the final quick facts for this year:<br />
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<br />Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com0tag:blogger.com,1999:blog-6084657885955337513.post-80289069792655991432017-10-21T10:57:00.001-04:002017-10-21T10:57:43.804-04:00October Awareness continues<div dir="ltr">
If you have followed this blog enough, you know that October has a push for Niemann-Pick Disease Awareness.</div>
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If you are new, you can read the <a href="http://immovingalong.blogspot.com/p/about-me.html">detailed story</a> as to why this is so important to me.</div>
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For the short version, grab a tissue. My son was diagnosed with Niemann-Pick Type C at age 4 1/2. He died from disease complications before he turned 5.</div>
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Well before I knew this rare disease existed, and well before we were personally affected, October was designated as Niemann-Pick Disease Awareness Month. We have an uphill battle each year, against some other more well known diseases. </div>
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But the underdog has continued to rise - with your help. By sharing my blog posts, sharing from the National Niemann-Pick Disease Foundation <a href="https://www.facebook.com/NNPDF/">Facebook page</a>, and <a href="http://nnpdf.org/vision-of-hope-campaign/"><u>donating</u></a>, the disease is being identified earlier and treatments are becoming available.</div>
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So thank you. If you are an affected family, please reach out to me. I am happy to listen, talk, share my experience, and help you find resources to support you.</div>
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Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com0tag:blogger.com,1999:blog-6084657885955337513.post-88243307507205698242017-10-16T07:11:00.000-04:002017-10-16T07:11:57.110-04:00October Awareness - Vision of HopeThe National Niemann-Pick Disease Foundation has been around for 25 years, providing support to families and funding promising research.<br />
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In recognition of that, the <a href="http://nnpdf.org/vision-of-hope-campaign/" target="_blank">Vision of Hope Campaign</a> is encouraging donations of $25 in recognition of the 25 years.<br />
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In addition, I am giving 25% of all <a href="http://jillflinton.jamberry.com/" target="_blank">Jamberry</a> sales during October to the NNPDF.<br />
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And I can't forget about the information squares for this week:<br />
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Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com0tag:blogger.com,1999:blog-6084657885955337513.post-84719103177895693622017-10-08T09:34:00.000-04:002017-10-08T09:36:58.296-04:00October Awareness has begunEvery October I post information about Niemann-Pick Disease. October is the month selected to share Awareness. Yes, we are in an uphill battle against some other awareness months. But we persevere.<br />
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This month, I am donating 25% of all sales from my <a href="http://jillflinton.jamberry.com/" target="_blank">Jamberry</a> business to the NNPDF. In addition, my entire commission is donated for my Niemann-Pick <a href="https://www.jamberry.com/us/en/shop/products/nas-41921" target="_blank">nail wrap</a> and a coordinating lacquer, <a href="https://jillflinton.jamberry.com/us/en/shop/products/so-presh" target="_blank">So Presh</a>. Go check them out.<br />
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Here are the first 5 facts for October. Share them from new new NNPDF <a href="http://www.facebook.com/nnpdf" target="_blank">Facebook page</a><br />
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<br />Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com0tag:blogger.com,1999:blog-6084657885955337513.post-6066987871231526032017-09-21T19:58:00.000-04:002017-09-21T19:58:01.288-04:00Diapers<div dir="ltr">
Dan was in diapers from the day he was born (premmie) to the day he died (size 5/6). I was fortunate to have family help pay for them for many years and then NYS Medicaid reimbursed me for some as well. </div>
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Those families with children who have special needs have to find a way to pay for them until at least age 3, sometimes longer. </div>
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The need is there for more than just those with special needs. Can you believe that 1 in 3 families have to make a choice between buying diapers and buying necessities like food or electricity.</div>
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Let's make sure all babies have enough diapers. Order some holiday gifts at <a href="http://jillflinton.jamberry.com/">http://jillflinton.jamberry.com</a> and help support No Bottom Left Behind Diaper Bank!</div>
Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com0tag:blogger.com,1999:blog-6084657885955337513.post-35674083155231107852017-09-05T08:40:00.001-04:002017-09-05T08:45:55.725-04:00School days<p dir="ltr">Well, it's happening again. It's the first day of school. Something we never had a chance to experience with Dan. And every year, it hurts seeing all the kids going back to school. I feel my heart break when I see pictures of kids that are Dan's age - knowing what grade he would be in, what he would be doing.</p>
<p dir="ltr">For some reason, the start of the school year is a trigger point for me. Maybe it is seeing the kids get a year older. Maybe it is seeing what they are going. It makes me realize how much I have missed. Don't get me wrong, I love seeing the pictures. It's just something we never had the chance to experience.</p>
<p dir="ltr">Shelby is starting Kindergarten next year. I wonder if some of these feelings will ease. </p>
Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com0tag:blogger.com,1999:blog-6084657885955337513.post-59547612345851553432017-09-02T18:31:00.001-04:002017-09-02T18:33:01.851-04:00Conference is over... Our work is just beginningDuring May, June, July and early August, I spent countless hours organizing materials, helping with Conference logistics and making sure families were well supported.<br />
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One major aspect of the conference is our memorial table. This year there were 9 frames. Still 9 too many.<br />
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Progress is being made, slowly. In the 5 years we have been going to the NNPDF Conferences, we have gone from 0 clinical trials to 4. There is still much that needs to be done.<br />
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The other big highlight of the weekend is the Gala dance. And a little girl enjoyed every minute of it!<br />
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October is coming. That means awareness and a campaign: $25 for 25 years of support to families. Please watch for ways to contribute.<br />
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Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com0tag:blogger.com,1999:blog-6084657885955337513.post-638144863308647232017-08-06T12:39:00.001-04:002017-08-06T12:40:52.757-04:00A celebrationI am so blessed to have a beautiful, healthy girl. And this weekend we celebrated her 4th birthday.<br />
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As I sat down to write this blog entry, I realized how different the 4th birthday parties were for Dan and for Shelby.<br />
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First, there is the obvious: winter and summer. And the other obvious: boy and girl. These don't bother me.<br />
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The not so obvious things are what made me pause while writing. A request for toys made for 2 year olds vs. toys made for 4 year olds.<br />
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And 4 was the last birthday Dan had. We didn't know it at the time, though. His birthday always felt rushed - wedged between Thanksgiving and Christmas, and usually the same weekend as the firehouse kids Christmas party where we would get Santa pictures every year.<br />
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Shelby keeps me so busy, I usually don't have time to dwell on the differences between them. I do know that some of what we do is a reaction to losing Dan so early, and some things we were never able to do for and with him.<br />
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So we celebrate. We celebrate 4 wonderful years. We celebrate life. We celebrate a healthy, beautiful princess.<br />
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Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com0tag:blogger.com,1999:blog-6084657885955337513.post-45724893928630344002017-06-30T07:25:00.000-04:002017-06-30T07:25:42.332-04:00Random musingsLife and death. It's a cycle for us all. We don't know how long that cycle is. So we live our lives doing stuff. And then something happens to make you realize that the cycle is shorter than you think. What do you do then?<br />
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We are all born for some reason. There is some "job" that each one of us is responsible for. You may never know what it is, or it could be something spectacular. <br />
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So where am I going with this?<br />
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The past few years, I have really been thinking about who I am, what I want to do is with my life, how I want to live my life.<br />
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I've realized a few things:<br />
1. Dan was here to help me give back after he was gone and to help me start this introspection. Dan led me to the NNPDF. While it hasn't been an easy road for the past couple of years, the NNPDF is now in a different place and is moving in a good direction.<br />
2. Shelby is here to make me slow down and smell the roses. She loves spending time with me doing silly things. Her desire to be with me as much as possible has made me look at where my life is and where I want it to be.<br />
3. Finding Jamberry and joining the company appeared to be completely "out of character" for me. But it came along at the right time to help me with understanding who I really am and why I am involved in the things I'm involved in.<br />
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Taken separately, each can seem unrelated. Taken together, I am seeing a different picture of who I am and what I want in and from my life.<br />
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Some people may call it a "mid life crisis" and maybe it is. I call it discovering who I am.Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com0tag:blogger.com,1999:blog-6084657885955337513.post-69835096816302163942017-06-19T07:22:00.000-04:002017-06-19T07:22:07.810-04:00Father's DayThis past weekend was Father's Day. We went camping in Lake George (less than an hour away). <br />
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While there I was struck by the way our life is "normal" now and just how far we have come in 6 years.<br />
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You see, 6 years ago we were sitting in a hospital room waiting for a diagnosis. We had fun plans for the weekend, which we cancelled. Instead, we spent it in a Garden reading the history of the hospital.<br />
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I had started to make a "bucket list" for Dan - things to do and places to go - so we would always have fun memories. Well, not one thing was crossed off that list.<br />
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I found that list about a year or so ago and posted it on our pegboard. I'm not sure if this past weekend, with playing in the Lake and riding the rides at Magic Forest, were on the list. <br />
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But one thing I did realize - you don't need a bucket list to make memories.<br />
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<br />Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com0tag:blogger.com,1999:blog-6084657885955337513.post-36433081623610699172017-05-22T07:33:00.000-04:002017-05-22T07:33:35.871-04:00How We Keep Sane (sort of)Sometimes it's the random things that have an impact.<br />
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Maybe a month ago I casually posted on my personal Facebook page something about cooking is done for the next 6 weeks and how I spent under $300. Immediately, the had people asking how I did it. So I answered them and then someone suggested a blog post, so here it is.<br />
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As a preface to this: it's really just 2 of us, as Shelby doesn't eat enough in any one sitting to have an impact as a "serving". And we primarily focus on dinner - and I usually take any leftovers to work.<br />
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<b>Step 1</b>: I look in the freezer for what we still have from the last cooking session, plus random packages of meat or chicken that we picked up along the way. I make a list of these two types of items.<br />
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<b>Step 2</b>: I review the stack of recipes we have (or cookbooks or Internet searches). I have several different meal plans from <a href="http://www.laurengreutman.com/" target="_blank">Lauren Greutman</a>. Her plans are based on Aldi shopping, so coupons are not needed. From the stack of recipes we have I pick out 10 to 15 recipes and make a list of ingredients. I total the amount of each ingredient (for example: 8 pounds of chicken, or 2 beef roasts, each 1 1/2 pounds or 6 apples).<br />
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I write down side dishes and spices too, not just the main ingredients.<br />
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I write a list of recipe names on a separate sheet of paper, or tab them in a cookbook so I can find them when I get home. As I use multiple cookbooks, I also write down the name of the book it came from, as there are similar recipes in multiple cookbooks.<br />
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<b>Step 3</b>: I go through my cabinets crossing of everything I already have. Most times I'm crossing off spices, as we have quite a few. It also serves as a double check to make sure we have cooking broth or condiments that we will need.<br />
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<i>Tip</i>: I try to stock up on cooking broth and cooking wines, spices, etc. Having them in the house at all times makes a quick meal easy to prepare.<br />
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<b>Step 4</b>: I clean up my list and rewrite it, with the totals I need per item. I try to group like items together - so meat is in one section, canned goods in another, produce in another, etc. You can see some of the organization in this photo, although this isn't a great example.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwkLFaSwRuSQ_mkn61Zv6znHDtUzqr3XT4IDg4DVvuetfQBLByprhyVpqBlHmB3eOvzoyUhEr6QR5cnyoJju1mcDPEHzG14RhErzUlr2YHTssktcmtDeEt9nEb_0Q9s0q_1M5nuFxnMrHF/s1600/FB_IMG_1492915494233.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwkLFaSwRuSQ_mkn61Zv6znHDtUzqr3XT4IDg4DVvuetfQBLByprhyVpqBlHmB3eOvzoyUhEr6QR5cnyoJju1mcDPEHzG14RhErzUlr2YHTssktcmtDeEt9nEb_0Q9s0q_1M5nuFxnMrHF/s320/FB_IMG_1492915494233.jpg" width="192" /></a></div>
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<i>Tip</i>: As you get more comfortable doing this, the list in step 4 will be how you start your list in step 2. Don't fret - it takes quite a few months to get to that point.<br />
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<b>Step 5</b>: Go to the store. My first stop is Aldi for the bulk of my needs. I get what I can, which is usually most items. From the picture above, the only items I couldn't get at Aldi were the circled items. I go to another store depending on what I still need and how much time I have.<br />
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<i>Tip</i>: I always pick up more chicken breasts than we need, as well as a few pounds of ground beef, and meats that are price reduced. I also try to pick up speciality meats when they are on sale - so corned beef in March/April (sometimes the discount in April is better than the sale price in March because they have too many); turkey and ham in November/December. These freeze well for quite a few months (if you have the space).<br />
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For those who don't know, Aldi is a grocery store. It is no frills, and usually only has 1 or 2 sizes per item - the sizes commonly used. For example, spaghetti sauce is 16 oz, not 32. Frozen chicken breast is in 3 pound bags. You need to bring your own bags, and pack them. Products are in display boxes, which helps keep the items organized. There are very few "name brands". There is quite a large gluten free selection. Also, bring a quarter to use a shopping cart (returned to you when you return the cart).<br />
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<b>Step 6</b>: Come home and start organizing. For me, this is the longest part, so hubby and I usually work together. Most of the meals we cook can be frozen before cooking, which saves time. Even if the entire recipe can't be prepared ahead of time, sometimes a portion can be - like marinading meat.<br />
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We start with one type of meat (let's say chicken). I find all the chicken recipes and we start separating chicken breasts into freezer bags. It's probably a good idea to invest in a small kitchen scale so you can weigh meat. As he is separating chicken breasts, and cutting them up as needed, I am labeling the bags and putting in the other ingredients that can be frozen. <br />
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We do the same with any other type of meat we will be eating. Always work with one type of meat at a time. We put a paper plate on the scale to weigh the meat for each recipe. That way we can discard the plate before moving on to the next meat. <br />
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Same thing with cutting boards. Keep them separate for veggies and meat. Either wash well between uses or invest in a few.<br />
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<b>Step 7</b>: Make sure all the recipes are labeled on the bag. If something needs to be added to the bag when it is cooking, I usually write that on there too. Place in freezer.<br />
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<b>Step 8</b>: I make a calendar of meals. The calendar includes the meals I found in the freezer plus what we just put together. I usually schedule 4 or 5 meals a week and mix up the meat flavors. As most of our meals are frozen Crock-Pot or frozen grilling recipes, we can pull out a recipe the night before (or morning of) to let it thaw. Putting only 4 or 5 meals on for the week leaves room for leftovers or for a simple meal like spaghetti or tacos. <br />
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I also try to schedule meals early in the month that need ingredients that are "fresh" like peppers or apples, since I probably just purchased them.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzxVRRDKgVd_hupzhvpxqJuKWtiHojel-jWcJDlwK2ZUdE_r5xZUOI5Nz8Fa6hbOCv2PwhrZ8189uWZ6gtJk_9Pc6CDxyymo6vrywok738v-j_Nogn4RanfBSXIhHH_hLCg8hN2HopMQWY/s1600/FB_IMG_1492915805653.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzxVRRDKgVd_hupzhvpxqJuKWtiHojel-jWcJDlwK2ZUdE_r5xZUOI5Nz8Fa6hbOCv2PwhrZ8189uWZ6gtJk_9Pc6CDxyymo6vrywok738v-j_Nogn4RanfBSXIhHH_hLCg8hN2HopMQWY/s320/FB_IMG_1492915805653.jpg" width="192" /></a></div>
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The calendar has really made the difference for us. We can look at it and know what is planned. It's taken the "what's for dinner question out of our daily lives"<br />
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One thing I really should mention here, I am blessed that hubby is home with Shelby during the day, so he can start cooking these meals in the Crock-Pot mid-morning. <br />
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This pre-planning has eliminated MOST trips to the grocery store. Milk, bread, eggs are still frequent trips. And sometimes I'll stop on my way home from work to pick up a bag of salad greens or some fresh fruit or veggies for dinner that night or the next.<br />
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We do try new recipes - usually a few a month. We obviously keep going back to our favorites. And if you have a list of 20 or 30 favorite recipes you cycle through, the list prep, shopping, and meal prep, get easier each time.<br />
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I can say, this entire process does take 8-10 hours. If I can I do the first 4 steps at night while watching TV - a bit at a time.<br />
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I would love to know if this has helped you! Please leave a comment below and let me know.<br />
<br />Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com1tag:blogger.com,1999:blog-6084657885955337513.post-42834284483094091842017-05-10T23:27:00.001-04:002017-05-10T23:33:57.695-04:00Middle of May means....<p dir="ltr">For many, it means Mother's Day, celebrated on the second Sunday in May.</p>
<p dir="ltr">Did you know the first Sunday in May is International Bereaved Mother's Day?</p>
<p dir="ltr">I saw this article the other day, <a href="https://www.compassionatefriends.org/blog/grieving-moms-want-mothers-day/">What Grieving Mother's Want For Mother's Day</a>. Mother's Day is recognized as a celebration of being a mother. But what about those who don't have their children to celebrate? Are they any less than mother?</p>
<p dir="ltr">So between last Sunday and this Sunday, please reach out to a mother who has lost their child.</p>
Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com0tag:blogger.com,1999:blog-6084657885955337513.post-65795480809949745032017-04-17T17:49:00.000-04:002017-04-17T17:49:23.859-04:00It's never easy....I know I vowed to write more. Living with a preschooler, working, and spending time with family have a way of making the time fly.<br />
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Until recently. The first few weeks of April have been hard. Really hard.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFJAMwkgKussAH6LE363AMhlDMlplgfU7mRdXvudvcUK5s1K1Z-shFrgMUPxQAPMzRHV71huNB6UCCY4DDhwklWWx_2kaiWQu19_Uzv6QTXt8yzwftr23x2dJvwyhc9JBsnk_JjuKJCe5-/s1600/FB_IMG_1492465052189.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="272" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFJAMwkgKussAH6LE363AMhlDMlplgfU7mRdXvudvcUK5s1K1Z-shFrgMUPxQAPMzRHV71huNB6UCCY4DDhwklWWx_2kaiWQu19_Uzv6QTXt8yzwftr23x2dJvwyhc9JBsnk_JjuKJCe5-/s320/FB_IMG_1492465052189.jpg" width="320" /></a></div>
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5 children, 1 week</div>
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Life is difficult, seeing this cluster reminded me of how difficult life can be and know much we need to just live it.</div>
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Five families need to move forward without someone. It's times like these I am happy to be a part of the Niemann-Pick community. We all "get it" and many of us have been where these families now are.</div>
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So I ask all of you to please hold these families in your thoughts, as they will need support to get through some of the hardest days they will ever know. </div>
Jill Flintonhttp://www.blogger.com/profile/07654761993901288072noreply@blogger.com0