I'm a Carrier

My husband, Jim, and I just took one of the common, mail-in, genealogy DNA tests to learn more about our family backgrounds. In addition to learning I’m 25% Italian and 0.5% Native American, I learned I am a carrier of Cystic Fibrosis (CF). I always knew this was a possibility, but I had never been tested for the Cystic Fibrosis trait. Even when Jim and I decided to have a child almost 30 years ago, neither of us got tested. Why not? There is no reason. We just didn’t. I guess we knew the risk was higher than normal since my older brother, Roger, died from CF when I was a baby. Yet, still, we did not test ourselves.
When I think about things now, we were playing Russian Roulette! We knew that both parents had to carry the gene, just like my parents did. This meant the chances of me having it were even greater than the average person. We knew no one in Jim’s family had CF (at least that we knew of), so I guess we thought his chances were slim of carrying the gene. Still, why?

My parents and Roger in Japan while stationed in the Navy. 1957

No matter how sick he got, Mom said Roger was always smiling.

Roger was born with CF and started showing his symptoms at 6 months. Symptoms progressively got worse and he died from CF complications at the age of 4. In the late 50s and early 60s, very little was known about CF and most children never reached the age of 10. 

I was 4 months when Roger died and sadly don't remember him at all. All I have are photos and stories my parents have told me. Thus one of the reasons I scrapbook; to keep memories of Roger alive! 

I guess it all came down to the fact that we wanted children and would knowing one way or the other if we were both carriers make us decide to not have a family?  Simply, no. Every pregnancy has it’s risks, whether it’s a miscarriage, Down’s syndrome, etc. When it comes to having a child, sometimes the love involved far outweighs the risks. Ask any parent who has had a child with CF, or any other genetic risk-related condition, and they will most likely tell you the same thing. Love is what is important…love is what gets you through the adversities.

---contributed by Jill Worley

De-cluttering, Organizing & Making Room for Joy

Hello friends. Tara, here! We will be trying to increase our blogging pressence for our followers here at Scrapping for a Cure. As always, We will keep you up to date on Kaitlyn, Cystic Fibrosis, as well as info on our annual event. But we also hope to bring you enjoyable & informative content geared towards our crafters!

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      De-cluttering, Organizing & Making Room for Joy

When asked to do our blog post, I was inspired by my desire to get the new year started in organized style as usual! I will admit, I am not a minimalist. However, I do find it vital for my mental health to keep my space as clutter free as possible and to keep only things that I find useful and bring me joy. Life brings ebbs and flows and it is a process that has to be revisited as needed. I love the holiday season and time with family & friends. The holidays have brought so many memories as we approach 2018. I am so very thankful. Often it also brings extra stuff.

As crafters, artists, creators and magic makers, we also have our holiday "handmades" clean up and we are always looking for the most efficient way to keep our tools and supplies organized. So let's get started on the basics of de-cluttering, organizing and making room for more joy!

1. Let go of guilt & acknowledge emotional difficulty

Before you begin, acknowledge the emotions that come with holding onto or letting go of items. It can be hard because we attach emotions in some way to these items. Sometimes there's a lot of guilt attached- items given to you by loved ones or the acknowledgement of how much you spent on the item. It is a challenging process at times for all of us. Take a moment to thank each item for what it provided you. These items fulfilled some purpose when originally obtained. Acknowledging this can allow us to release any feelings of guilt. I can attest that the hardest challenges can sometimes be the most freeing for us. Keep in mind that at the very core of it all, we simplify our things to increase the quality of our lives and to make room for more joy.

2. Don't ruminate on reasons to keep the item but instead quickly assess the following:

• Does it provide great benefit/usefulness to my life on a frequent (daily/weekly) basis?
• Is there anything else I have that can do the same job plus has even more uses?                  Multi-use tools can be our friend.
• Does this item symbolize or tell a special story of my relationship with someone or a life changing experience? Will a photo & journaling about this item suffice for me?
• Does this item give me a profound feeling of love/joy/adventure when I see it?
• Do I love this project and look forward to being able to work on this project each day?
• What is the motivation behind the project? Does working on it  make my heart sing or do I feel a sense of expectation from someone else or personal guilt over "wasted" time?
• If I didn't own this item, would I buy it for myself today?
• Would this item serve a better purpose and bring me more contentment by being sold or donated?

3. Start in one designated "zone" and with one item at a time:

Gather your bags for trash and boxes for donation and designate your starting zone. I recommend a specific area of furniture and focus on zones inside of a room. Shop from your zone. Grab the stuff to keep that you would purchase again today. Sort through each item & immediately decide & place into Trash, Donate/Sell, or Keep. Clean the zone and make it feel new!

4. Pace yourself & have reasonable goals:

Most people only have time & energy for about 2-3 hours max to work on de-cluttering and organizing. This is why selecting rooms & zones can help you feel more accomplished. Be reasonable with your self expectations. Remember that this process is about opening up more room for joy & living. Also realize & acknowledge that this is a process that requires repetition. Sadly, our spaces aren't self cleaning and we have a natural tendency to re-accumulate over time. 

5. Organize & have a place for everything you keep.

Make sure you store your items in a way they may be easily accessed and easily put away.

6. Make it good enough & efficient enough for you!

Those magazines and commercials make it look so easy. Well, don't make their advertisements your goal. Instead make your home and space your own. Most of those rooms have had paid stylist that create the "image" specifically made for marketing... NOT for actual use and efficiency of a living and breathing human being. Don't set yourself up for failure by seeking perfection.

Seek Functional. Seek Real. Seek Joy.

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CHRISTMAS WITH THE SMITH FAMILY

Kaitlyn took it upon herself to choreograph a special nativity for her extended family. She selected music, reading parts and costumes. It was a very special moment of joy.

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We hope your family has been blessed this holiday season and we wish you many blessings throughout the new year! 

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***Remember that registration is in full swing for our 

Spring 2018 Scrapbook & crafting event in Memphis, TN!  

                                                        

We are filling up quickly.

Registration details can be found here

FAQ's about our event can be found here.

Want tips for prepping and organizing for the craft retreat? Our customized list can be found here.

Time to Talk of Many Things:

... of  hope & SFAC 2015, of fundraising & tomorrows, and of cabbages & kings

Fundraising for Cystic Fibrosis
You are Making a Difference, Bringing Hope

   I am so excited to have our sixth annual 'Scrapping for a Cure' scrapbooking retreat in the books. It was a lot of fun and very successful. For our 2015 event, we had 48 participants, a dozen various vendors, and dozens of volunteers helping us every step of the way. I am so thankful for everyone that participated in any way and capacity. Because of you, we were able to double our fundraising from last year, raising over $8000 in donations for Cystic Fibrosis Foundation. We plan to present a check for $8400 to CFF on Saturday May 2nd at the annual Great Strides at the Memphis Zoo. With every dollar raised for CFF, we are truly making a difference in finding a cure for Cystic Fibrosis.

   It may not seem much to volunteer an hour of your time or donate a little money, but when putting together a fundraising event, it all adds up to make a huge difference.

   My family and I got the opportunity to participate in a local CF run in April. We do it every year, and it is nice to chat with other CF families that are going through the same trials. This year was a little heartbreaking, though. Two CFers weren't able to make it to the event this year. One has been very sick and was still in the hospital. She is such a fighter and we think and pray for her regularly. The other one passed away shortly after last year's CF run. Both are under 15 yrs of age. It is hard to see the heartache, knowing that with a disease this severe, a simple cold can quickly change into something life threatening.  Though Kaitlyn has had a rough year and a half, I am so thankful for her health and her dedicated medical team. I know we are truly blessed. She is getting stronger with each passing month. With each fundraiser held to help find a cure, it gives each of us CF families hope.
                                           

We are already starting to plan for 2016, the seventh annual Scrapping for a Cure. We hope to have some details within the next month or two. Please be mindful of our Facebook and Website pages, they will have the latest information.

                                                   

To help boost our funds for the 2016 event, we are already starting our mini fundraising projects. 1) Fundraising Yard Sales!!- We will be hosting one in the Shoals Area (May)  and one in the Memphis area (June). If you have anything you wish to donate, we would greatly appreciate it....and feel free to come and shop! Dates, times, and locations will be posted on Facebook soon. 2) Tastefully Simple Fundraiser- If you have never tried Tastefully Simple, you are missing out. If you have tried it, reorder your supplies through me! I LOVE their products. In honor of May being CF awareness month, I am hosting a Tastefully Simple Catalog Party for the Month of May. A portion will be donated back to CF. We were able to raise $200 for CF from our last Tastefully Simple Fundraisers! To place an order, just PM me (Rachael McGuire, Alabama or Scrapping for a Cure) through Facebook. I will get you taken care of!

Thank you for your support in helping us find a cure for CF!

-Rachael McGuire

Back 2 Life, Back 2 Reality, Back 2 the Shoals

Back to Life

   Though it was so much fun at the beach, Kaitlyn and I are glad to be home and back into the routine of life. Kaitlyn went to visit her doctor last week and the results were great. Her lung function has leveled off since the previous month, something that hasn't occurred without additional medication help this whole past year. She has gained a pound and grown an inch! (Always great to hear for someone with a medical condition that makes it very hard to gain weight and flourish.) Her lungs sound clear and her lab work came back normal (for her). Was it the beach air? We don't know. She was also using essential oils, sleeping 10-12 hrs a day, swimming daily for exercise, and eating regularly. We are trying to change our lifestyle to include these extra health benefits to see if she continues to improve. Only time will tell. 

  On a positive note, she isn't scheduled to see her doctor until after Christmas. If all goes well, this will be our first year to spend Halloween, Thanksgiving, and Christmas as a family since she was diagnosed in 2007. She is so excited to enjoy Halloween this year. It has been so long, she didn't even know what a Trunk or Treat was and that our church hosts one for Halloween. My creative kids decided to make their costumes this year out of cardboard boxes.....becoming the 'Boxtrolls'. I am so proud of them for working together, helping each other make the costumes. 

We had so much fun this past weekend visiting my family Murry & Tara Smith for their annual Halloween Carnival....definitely a better experience for us than last year. Last year, after traveling the 3 hrs, we arrived at their house with a sick Kaitlyn. She had seemed fine when we left home, but by the time the party started, she was running a low grade fever and couldn't keep her eyes open. She ended up sleeping through the whole party. 36hrs later, she was admitted to Children's Hospital in Huntsville, AL with a collapsed lung, the other lung completely dense with mucus, and put on oxygen for almost two weeks. Since then, this year has been very tough for her. But she is such a fighter, and our personal hero. 

Scrapping for a Cure Update

   Though Scrapping for a Cure is many months away, our committee members are always diligently working to get it ready. Our favorite part??!! Research (by cropping)!! Jill Worley spent over a week traveling to different scrapbook stores and crops, having fun and getting ideas for our event. Tara Smith & I will be heading to Arkansas next week for a huge crop. We love being pampered as croppers!!! We are having early bird registration right now. This runs through December 31st, 2014. All early birds will be entered into our big drawing: Hilton night stay, Breakfast for 2, and $100 Scrapping Bucks to spend at the vendor booths during our 2015 retreat! Don't miss out! You can find more information and a registration form at our website, www.scrappingforacure.com.

  

Stories of the Beach Life: Ch. 3 Lord of the Sand & Homeward Bound

  Lord of the Sand & Homeward Bound

     Each week, we look forward to the weekend, when our whole family can enjoy the beach together. This past weekend was the best. We finally had perfect weather for the full weekend.It was also the Annual National Shrimp Festival, bringing in a lot of vacationers. We went to check out the festivities. The kids loved the spider climb!

 James had the opportunity to brush up on his sandcastle building skills. He even learned how to make trees! The kids enjoyed helping him. I enjoyed basking in the sun, soaking up the rays! I have found that though I think I have patience (when it comes to my kids), I do not have enough patience when it comes to building anything out of sand. 

  Once our boys left to head back home, Kaitlyn developed her second ear ache. Swimmers ear? Ear infection? Don't know, but at least it didn't get as bad has her first ear ache. She did run a slight fever again, but once we administered rubbing alcohol for a few days, it finally cleared up. So, with that in mind, we went out and bought her a swim cap and ear plugs. Hopefully we can prevent another ear ache. 

  As our time here draws to a close,  we share mixed feelings. We will miss the bliss of a paradise existence, but we are very anxious to get back to our family and normal life. Has the beach helped her? I really don't know. She still has CF....she still coughs. She will see her specialist in four days to review the difference. Thanks for following our personal experiment at the beach. We will keep you posted.

Stories Of The Beach Life: Ch.1 Beauty & the Beach

At the Beach

  As some of you may know, Kaitlyn and I are trialing a month at the beach, in hopes to help her lung condition. We have heard about other CF children experiencing great benefits with breathing in the salty air. With this past year being so hard on her, we decided to try it ourselves. Sept-Nov are always her worst months, making it the best time to try a change in scenery.

  For most people, a month at the beach would sound like paradise. Not for Kaitlyn. When it comes to sand, it was hate at first sight. And what is more abundant down here? SAND! After a few hours of school work, and her mandatory hour (by me) at the beach, Kaitlyn is itching to jump into the pool. Her favorite part of this experiment? the pool with her scuba gear. Her least favorite part of this experiment? missing her brothers and dad. What fun is the beach and pool without her brothers here to enjoy it with her? And most of the vacationers down here do not have kids with them.

After being stuck inside for a few days due to a severe ear infection and stormy weather, Kaitlyn was excited to get back to the beach Tuesday evening. She also found out that she didn't mind the sand so much, especially while she is playing sand monster or hunting for sea shells & sand dollars. 

    I had hoped that with a month at the beach, I could really catch up on some scrapbooking. With this in mind, I printed off hundreds of pictures and packed up tons of crafting supplies. But is reality ever what we expect it to be? After 2-3 hrs of school work, 2-3 hrs of meds and breathing treatments,  2-3 hrs of running with Kaitlyn down to the beach and pools, and our trips into town to visit the library and Publix, who has time for anything else? Well, at least we make time each day for a little craft time, giving me an hour or so to make a dent in my pile of pictures! 

  I am just so proud of Kaitlyn for staying on top of her school work and keeping her spirits up. It's got to be hard stuck with her mother for a whole month and only having extra playmates on the weekends, when family comes to visit us. Once we have returned home, Kaitlyn will see her doctor to see if the ocean breeze has helped her lung function. I can't quite tell if she is doing better or not. She says her chest feels better. Though her cough isn't as bad as it was when we got down here, she is still coughing. But we still have 16 days to go to make a difference. And on the up side, her appetite has been great, which is crucial for CF kids!

Kaitlyn's CF Journey: Gearing up for Fall

                                               

Gearing up for the Fall

Thank you for all of your support through Kaitlyn's trials. She is currently home with us and attending school with her friends. Though her main fight is with Cystic Fibrosis, she has also developed CFLD (Cystic Fibrosis Liver Disease). We found out last month that her Liver Disease is progressing and her platelets continue to decrease. Even a small cut has been a cause of concern for us these last couple of weeks because she isn't clotting well. The thought of wrapping her in bubble wrap runs through my mind often. Luckily she is a cautious kid....unfortunately, accidents still happen. But as we live, we learn. And we hope to get more pointers and ideas from her doctors next week on how to treat small accidents when they occur.

In less than two weeks, Kaitlyn and I will head to the beach for a little personal health research. In search for a better atmosphere for her condition, we are moving to the beach for a month to chart her health progress. The fall is usually her hardest time of the year, always landing her in the hospital for Halloween, Thanksgiving, or Christmas. The salt in the air on the coast has been known to help CF patients breath better and live fuller lives. We have been fortunate enough to find a condo right on the beach to help in our research, which also has great kid amenities to keep her occupied. She will miss her brothers as they stay behind to attend school, but she will be kept busy with her school work as well. We are so blessed to have a wonderful school district which supports us in her schooling, even if she isn't able to attend as often as her peers. We will look forward to our weekend visits with our family as they travel each week to visit us and enjoy the beach with us.

I am so excited I got to sign the contract for next year's event for the Hilton. Our Scrapping for a Cure committee has worked diligently the last four months, trying to find the perfect location in Memphis for our annual event. We wanted a place that will grow with us and will also help us in reaching our fundraising goals. Hilton is such a wonderful facility and I know we will feel so pampered during our event there. They have been working with us and meeting with us the past few month to help us see the potential of next year's event. Over the Memorial Day Weekend, our committee put in over 30 hrs of meetings, organizing registration and brainstorming on how to make next year's crop 'top-notch'. I am so thankful to have wonderful family and friends that have helped me grow Scrapping for a Cure into what it is today. And to help me dream about what it may one day be. For every dollar we raise and every person we are able to help educate about CF, the closer we will be to finding a cure for this disease.


                                               

Registration for 2015 Scrapping for a Cure is officially open! Our goal was to have it in place by November, but with great dedication, we were able to get it done by Memorial Day Weekend.  Early Bird registration will run through December 31st, 2014. One lucky winner will receive a one night stay at the Hilton, Breakfast for two, and a $100 shopping spree to be spent at our vendor booths during the event! Do not procrastinate signing up. We do have limited seating. Once the seats are filled, we will start a waiting list, but can not guarantee a spot. To be entered into the drawing, we need to receive your registration and full payment by the first week of January. Anything postmarked after December 31st, will not be entered into the drawing. Regular registration will run through March 13th.  We have so much in store for this year's event, I don't even know what to say my favorite part is. But I am very proud to say that we will have our dinners catered by Hilton and that all croppers will have the opportunity to have a 6ft cropping space. You can find the registration information on our website, www.scrappingforacure.com. Registration for classes will open January 1st.


                                    


A month ago, Tara Smith held a Fundraising yard sale in the Memphis Area to help raise money for our cause. This last weekend, Anna Steinke, Lisa Flannagin, and I also held a Fundraising yard sale, but in Russellville, Alabama. Between the two yard sales, we were able to raise over $2500!! We have such great community support! Thank you for helping us.

Kaitlyn's CF Journey: An Update On My Little CF-er

As a parent of a little 'CF-er', I know more about what Cystic Fibrosis is capable of doing than I wish I did. Yet, I still feel like I don't know enough to keep her well at all times. Cystic Fibrosis affects the health of over 70,000 people worldwide, and yet each case is a little different. CF causes mucus to build up in various parts of the patients body and causes them to not function properly. Usually it targets the lungs, digestive organs, and/or liver, but it can also affect growth, glucose levels, bone density, and fertility. Children and adults with CF can look completely healthily, and yet it is a deadly fight they are battling each day from within. Before decades of research, the life expectancy for children with CF only averaged 5-10 years of age. We are so blessed to have dedicated organizations such as CFF to help in research that has raised the life expectancy to 40 years of age. And yet, this disease still takes the lives of many children. 

Kaitlyn's disease first started affecting her lungs and digestion when she was barely a year old. Her first hospital visit coming at 18 months old, and reoccurring every 7-12 months. At age 3, we found out that CF attacks the liver and Kaitlyn was no exception. With added medications, we and the doctors hoped to slow down the damage that CF does to the liver. In 2012, we found out that Kaitlyn's platelets are slowly dropping due to another CF induced health condition called portal hypertension. Not only is her CF taking a toll on her lungs, digestive organs, and liver, but now this includes her spleen. Since then, Kaitlyn has been in and out of the hospital regularly. 

Most hospital visits last 10-14 days due to IV antibiotics that are given for that duration of time. This past 10 months, Kaitlyn has been hospitized 5 times....getting multiple IVs with each visit. She has even started to help the nurses with her care. She loves to watch them take care of her in hopes to one day be a nurse or veterinarian. She helps them take care of her IV and has even helped them get the IV out at discharge. Hospital visits are no fun, but Kaitlyn is never shy to show off her smile as she tries to stay cheerful.

I am so proud of my little 'CF-er'. She is such an inspiration and faces her challenges with  such bravado. See, she just went through a surgery this week and scared us all to death. Though her condition wasn't life threatening, a two hour surgery for three separate procedures can wear down anyone's nerves.  As they prepped her for surgery, she had us all in smiles as she entertained us with witty jokes and laughter. Through prayers and support of friends and family, and comfort from a loving Heavenly Father, we were able to find strength to get through our trials. Though we are still in the hospital, Kaitlyn is doing so much better and is wearing a smile. This trial in life has taught me to appreciate the good times and trust in our Heavenly Father's love. 

I am so thankful for Scrapping For A Cure and the difference we can make by raising money for CFF. This is a disease that needs the support of our communities to help all that suffer from it. Our event committee is so excited about next year's crop!

-Rachael McGuire, director of Scrapping for a Cure