Walk for Lupus - 2012

Spring is in the air and May is fast approaching. For our family, this means tons of birthdays, the end of a school year, and our annual Lupus Walk. The piedmont chapter of the Lupus association has made a fun interactive website for the Wards Walkers and we would love for you to leave us a comment or write on our Facebook page and like our page!

In my blog I have shared our personal walk with lupus and how it has affected our family. I am proud of both my sister and my daughter. For me these are the faces I see when I think of lupus. I have watched them persevere and accept what God has given them with grace and dignity. I am blessed to walk for lupus alongside them.

Every year, we have had a great time preparing for this event. The first year three generations of Ward women walked with my daughter as she dealt with the knowledge of this chronic illness. I still get choked up thinking of how special it was to have her surrounded by her friends and embraced by wonderful women. We made a full weekend out of it, including a spa day and cook-out the night before.  We tie-dyed tee shirts and made hats with the butterfly hand drawn on them. The second year was more quiet, with graduation the following weekend, we decided to make our walk just a family event. We made tee shirts with our own Wards Walkers logo.This year we are ready to walk again and do not know what to do!

Do we create a new logo for our walkers? Just wear the same color? Or be boring and have no team spirit. Let me know what you think. Leave a comment on our walk page or on our facebook page!

Walk for Lupus...

Walk for Lupus 2011

It is that time of year again! In May our family will be participating in the Walk for Lupus Now Charlotte. This has become sort of a family tradition as we support our daughter in her journey with Lupus.

When our children are young, we have such huge expectations and desires for them. As they grow up we see the person they were created to be peeking through and we adjust our dreams. Lauryn's first year homeschooled was filled with all the usual adjustment challenges. She was starting sixth grade and I was starting the journey of being a teacher. About half-way through the school year, she began complaining of difficulty breathing and extreme fatigue. She ached all over. The pediatrician suggested we cut out caffeine (which wasn't a huge issue in our home because we hardly bought it) and we complied. He gave her a prescription for an inhaler to help with the attacks that left her gasping for air. We had EKG's and met with a heart specialist. The doctors briefly entertained the thought of lupus but decided that since they didn't see the butterfly rash there was no way possible. Their conclusion was panic attacks. I was not convinced. I remember some kind people at church even suggesting she was suffering from depression because we were homeschooling her. :-)

Then one Sunday afternoon, I saw a sun-kissed patch under her eyes and on the bridge of her nose. I remember asking others if they had noticed it too and they did. She was tired that day, exhausted from a sleepover and the evidence was staring me right in the eyes. Slowly we saw improvement in her energy levels but always found it odd that she would turn down sleepovers and other fun events saying she was just too tired to go.

Life went back to normal for a while but my dreams and prayers for her began to change. I started asking for a name. All of these things sounded like Lupus. After all, we knew of it from my own sister. But how could we be sure? It took four years for her to be diagnosed...four doctors to take a stab at putting all the pieces together with blood work, EKG's, CAT scans, and a couple of MRI's. I have seen how God used every step to continue shaping her and our family. I still have desires for my children but the greatest lesson I have learned is that those desires are not mine, they are HIS.

We are excited to walk this year with friends and family and would love your support!

Congratulations Graduate...

Everyone rose with the sun and the chaos of the day began. There was much to do before heading off to the ceremony. This morning the evidence of the week had left it's mark on her. It was the brightest she had seen in months. There as she stared in the mirror she could see the familiar sun-kissed mark, the butterfly rash. The week had taken its toll. I was reminded of my sister's words as she shared how every big event in her life was bittersweet. The thrill and excitement was accompanied by the underlying fear that fatigue, aches, or even a flair up would rear its ugly head. This would be what living with chronic illness would be like.

This morning I saw a glimpse of something. Maybe God knew that I would need reassuring as I let go of my oldest daughter on this significant day. Maybe He knew that she needed a reminder that He is in control of ALL things! She came in to the kitchen and pointed towards her butterfly rash. "Look, there it is!" she exclaimed.Then I heard something I had not heard before..."Oh well it will just looks like I've been in the sun." she remarked casually.

We filled our day with pictures, food, memories and of course a beautiful tribute to the accomplishment of completing her primary education.

Congratulations to our graduate...Lauryn! We are so so proud of you.

Round 2...

We have come a long way since our family first learned that my daughter had Lupus. I can remember feeling a sense of relief that we could finally give it a name. I know this may sound stange to some but I never prayed that God would relieve her of this burden but rather that He would show us what it was. I never challenged that He was in control, I only prayed for strength and wisdom to get through the difficult days. I wish I could tell you that I handled each day with incredibly beauty most days I think we were all just muddling through. Tears stream down my face as I think of her laying in her bed unable to get up. I pause and reflect upon the many days her knees were so swollen or she would call on the phone scared because she couldn't move her fingers.

Last year we walked to make a statement of support. She walked to tell herself that Lupus would not define her but rather be a part of her. This year we are walking once more to support her but also to celebrate. This time last year we were struggling to get a grip on daily living let alone school. This year we are celebrating the goodness of God, the strength of family, and the perserverance of one young lady. We are excited that all six of us will walk together on May 21st. 

Reflections...

At the end of each year, I put together a photo album of our year. This has become a more recent tradition as the digital age has certainly made this task more simple to complete. While each page is filled with pictures and reminders of our year I try to sum it all up at the end of the album. This past year was hard to write about. I tried so hard not to make the theme "the year my daughter got sick" and yet I felt like I was trying to avoid the elephant in the room by doing so. So here in the virtual world I thought I would put down some lessons that 2010 has taught me.

• I was reminded that I am weak and that my strength lies only with my Heavenly Father.
• I was reminded that while He was using my daughter's lupus to mold her, He was also using it to continue His work in me.
• I was reminded that all things work together for good to those who love God.
• I was reminded that even though I want so much to fix her, it is when she is "broken" that His greatest work lies.
• I was reminded that friendship is a gift from God.
• I was reminded that talking with your children is important, but listening is even more.
• I was reminded that I love being a housewife who homeschools her children and am blessed for the opportunity.
• I was reminded that health is a gift.
• I was reminded that (as a wise woman once shared) we (wives) are the thermometers of our home.
• I was reminded about humility.
• I was reminded that a pot of coffee and an invitation make for great Mondays.
• I was reminded that James is my imagination, Lauryn is my sense of adventure, Kaelyn is my love of homemaking, and Ben is my sense of humor.
• I was reminded that my husband was my helpmate and so thankful that God saw fit to put us together.

There is no doubt that 2010 was a challenging year in our home but I still I am thankful.

10th Annual Lupus Summit

This past weekend several of us attended the 10th Annual Lupus Summit in Charlotte, NC. The keynote speaker was Christine Miserandino, author of the Spoon Theory and Blogger at http://www.youdontlooksick.com/. While all the sessions were informative and helpful, Christine spoke on being a "Professional Patient." This was probably my personal favorite. I think one of my favorite tips from that talk was to give gifts that serve. We all enjoy flowers and cards are always a bright spot to any day but when some one is suffering the gift of service can go a long way.

Several years ago, I had mono (no cracks please) while my kids were still very young. Hurricane Floyd had just hit and my husband was called to serve so I was left extremely tired and no help in sight. Even my sweet son, then 10, offered to clean the bathrooms because the house was getting so messy. If you know him at all you know that he is my neat and tidy boy so he was really at his personal limit when he offered. At the time, we did not know what was going on. All we knew was that I was falling asleep in the carpool lines and had to take numerous naps throughout the day. A neighbor stopped by one day and helped us do laundry and get "caught up." It meant the world to me. We are called to serve one another. What a nice reminder that helping clean, cooking meals, grocery shopping, running errands, etc. can be a way to show that you care!

The Spoon Theory written by Christine Miserandino

The Spoon Theory written by Christine Miserandino

Caption this...

One of my favorite pictures from our Walk for Lupus. My daughter is in the middle surrounded by two very special young ladies. How would you caption it?

“If ever there is tomorrow when we're not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. but the most important thing is, even if we're apart.. I'll always be with you.” -Christopher Robin to Winnie the Pooh

Saturday in the Park...

Check out this blog post on our Walk for Lupus Now 5K walk.

A Walk in the park...

Living Legacy

This weekend we walked our first 5K in honor of my daughter and my sister who have both been diagnosed with Lupus. The Charlotte chapter (as of today) raised over $59,000 and they are still accepting donations through the month of May.

Lauryn invited all the women of her family to join her in her walk and what she learned was that friends and family showed up in support of her as she and so many others who battle this disease. Today as we transition from planning to memories we are going through photos and talking. Throughout this week, I thought I would share our incredible weekend...the legacy of family

Be our Guest...

Kaelyn and I love working in our home, cleaning and organizing and preparing meals. With four guests arriving, we had lots to do. Earlier in the week we had planned our menu and run our errands. The house was cleaned but we weren't done yet. With the guests arriving around lunch time, Kaelyn and I began to put the finishing touches on everything.

We wanted to make sure that everyone had a warm welcome so we made guest baskets for each room. In each basket we put fresh towels and wash cloths and for this occasion we made special wine labels to commemorate our Walk for Lupus.


I am big on preparing simple dishes when company is around. All too often I am over-ambitious with cooking and end up in the kitchen when I would rather be sitting with my company enjoying the conversations. So now I keep it delicious but simple. We grilled chicken and corn brushed in olive oil and paprika and complimented it with a spring salad. I also grilled extra chicken to make chicken salad for lunch the following day. I also keep fresh fruit and vegetables on hand for quick snacks.

Almond Trail Mix Recipe
3 cups Almonds
1 cup Dark chocolate chunks or chips
1 cup Craisins

Mix together

Da Da Da Da Da Da...

I think I love Spring most of all the seasons. Maybe it is the way that everything seems to wake up and stretch and reveal its beauty once again. Maybe it is the way our spirits lift as we emerge from the cold darkness of winter. Maybe it is all the chatter and activity of children as they run outside still afraid that the sunny days will be few and far between. Whatever it is I think I love Spring most of all the seasons.

I think this season in particular reflects some things going on in our own family...trying to wake up from a cold darkness of seasons past. This year has been filled with one challenge after another and each challenge continues to reveal that I can do nothing without His help. This winter in particular my oldest daughter was diagnosed with an auto-immune disease known as Lupus. It is truly as unique as individuals. In our home, Lupus is the challenge that makes getting out of bed difficult. It is the pain felt in her joints as she tries to wash her hair. It is pain in her chest and a soreness all over that makes normal activities feel challenging. We have journeyed through the advice of specialists and find ourselves right back where we started. To be honest this journey parallels are experience with school. I trust the "specialists" to know what is best for my children, almost forsaking my God-given right as the parent to make those difficult decisions (but that is a different discussion). Today, for the first time in quite a long time, I am seeing glimpses of the past. A laughter that is not forced, just contagious; a smile that is not for show, just genuine; an energy that is not fleeting, but more steady. It is not perfect. We have a long way to go but today I can hide this season in my heart and draw strength that with each Spring comes renewal and hope and sheer joy as we experience the smallest of blessings!

On May 1st, many from my family as well as friends are walking with us to help raise money for Lupus research.

I would Walk 500 More...

This week my sister, Sharyn was contacted by the Walk for Lupus Now organization to feature her Walk webpage. What an exciting honor! As my daughter learns how to manage her disease, I am thankful that God provided some one in her life who could truly understand what this feels like. Some one that she could talk to and would listen when she thinks no one will understand. I am thankful for the strong example my sister has set before Lauryn. As I share with family about my daughter, those that knew my sister share stories of her never-give up attitude. We all have burdens. We all have struggles. It is what we do with those challenges that define our character. I am excited to see how God continues to use both of these amazing women!

We would love your prayers and support as we prepare for our walk, May 1st. Check out our Team Page or join our Facebook Fan Page.

I Would Walk 500 Miles...

Honestly, I am not sure where to begin. For a while now my 16 year old has been plagued with an array of symptoms that when strung together we now know leads to Lupus. This is not an unfamiliar disease for my family as my older sister also has Lupus. Being the youngest I do not have memories of the beginning of my sister's battle with Lupus but I have heard the stories. For me, she has always been a strong determined woman who chose to embrace the life God has given her than lie in self-pity or defeat. 

Over the past few weeks, we have been dealing with the reality that Lauryn has Lupus. Looking back, it explains so much. Looking ahead, it begs many questions. I pray that I will be the mother she needs. I pray that I will have ears to hear and patience to understand. I pray that the Lord will use this to grow her stronger and closer to Him. I pray that we will keep a sense of humor when things become difficult and the wisdom to make difficult decisions.