Tag Archives: cystic fibrosis

Hope and Joy meet on Miracle Street for this CF Mom

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Shelby jumps for joy.

I believe in miracles, I really do.

I know that I’ve been blessed with more than my share in my 47 years. I am beyond excited at the possibility of another miracle touching down in my life. Not even two weeks ago, when Shelby and I ventured to Baltimore for her regular three-month checkup at the Johns’ Hopkins Cystic Fibrosis Center, our family received incredibly good news.

Shelby, our college-bound 18-year-old, is eligible to begin taking Kalydeco, the new FDA-approved CF drug that does something no other CF drug before has done: it targets the CTFR protein (the underlying cause of CF), not just the symptoms of CF. For the six years since her diagnosis, my husband and I have operated on the knowledge that Shelby had the F508Delta mutation, the most common CF mutation. Not until I sat in that office chair, an arm’s length away from our doctor, did I realize the magnitude of his news. No, Shelby has G551D, the rare mutation that Kalydeco targets, the gene that only 4% of 30,000 CF patients have. And Shelby not only has one copy of this rare gene–she has two, something only .0004% of the CF population exhibits.

Two hours ago, our direct-mail pharmacy called to tell us that Shelby’s first 30-day supply of Kalydeco arrives tomorrow. This drug could represent the early stages of a super-sized miracle. Perhaps one day, CF truly will stand for CURE FOUND. Today, for me, it stands for CONSTANT FAITH.

This coming Sunday, May 6, our family will walk in our local Great Strides Walk to Cure Cystic Fibrosis–Megan’s Walk, we call it here locally, in remembrance of a friend and neighbor, Megan, who at 15 lost her battle with CF. If you can support the ever-hopeful search for a cure, please visit my walk page and make a donation. At the very least, keep the faith. Hope and joy are plentiful; miracles happen daily. Open our arms wide and receive them.

Be blessed–and be a blessing,

Martha, LoudounCrazyMom

Help save this woman's life.

Reblogged from Blue Scholar Blog:

Click to visit the original post

We need healthcare reform, but we need to save Lori Jo first.  I ran across this picture on my Facebook news feed and I just had to do something to help, so I'm posting it here on my blog.  D-rock Deeds Originally posted this last night.

LISTEN UP FACEBOOK FAM, I have been trying to raise money for my band to tour cali/germany this year threw a kickstarter program, instead of donating money for that( ILL GET THERE ONE WAY OR ANOTHER) i want every-one to donate what ever they can to help my friend Lori-jo get her lung transplant we are trying to raise 25,000 dollars to save her life,LORI-JO means more to me then my music carreer or tour,so TOO ALL OF MY FAMOUS ROCKER FRIENDS THAT ARE WELL OFF U KNOW WHO U ARE!!!

Read more… 109 more words

I'm sharing this because I have an 18-year-old daughter with cystic fibrosis. Please share this blog if you are so moved. As my pastor says, there is not a shortage of money or people willing to help. We just have to connect the two. I will forever be a CF mom, and am awed by the courage of every person who lives their life battling cystic fibrosis. I have sent an email to the bank, and am waiting for confirmation and direction about where donations can be sent. More info when I hear... Be blessed--and be a blessing, Martha, LoudounCrazyMom

Letters #5 & #6: To the Beautiful People

The King is enthralled by your beauty; honor him for He is your Lord.  Psalm 45:11

Bryan in the recovery room (yes, he gave his approval for this post).

CNN chatters in the background. The elevator doors open and close periodically. There is a constant hum from the nearby vending machine, the sound broken only by the occasional voice.

I am sitting in the surgical center waiting area. My middle child, Bryan, 14, was rolled into the surgical suite about an hour ago. I kissed that handsome kid’s forehead, and let the two surgical nurses whisk him away for two hours of sinus surgery.

It isn’t often that I am given two hours to do nothing more than sit. Most days, I am on my feet from before sunrise to long after sunset. Someone’s schedule—either mine or a child’s—dictates nearly every waking hour. Except for today.

I’ve read People magazine from front to back.

I scrolled leisurely through my emails.

I wrote two handwritten letters—each composed expressly for beautiful people.

And now, I’m typing away on my husband’s MacBook Pro, oblivious to the quiet activity that envelops me.

The pages of People were filled with the world’s beautiful most people. Heidi Klum. Kate Middleton. Angelina Jolie. Emphasis on the world’s, as in the media-hyped, society-defined, PhotoShop-enhanced beautiful people.

Truly beautiful people don’t necessarily wear makeup, or a size two. They might wear surgical scrubs and a comforting smile as they wheel a nervous 14-year-old away from his worried mom.

Beautiful people light up a room, usually unbeknownst to them. They pour out their love of life, and of others, with an emotional charge that could power Manhattan.

Beautiful people get in their car and drive three hours—not realizing until two hours into the trip what their exact destination will be–to comfort a disintegrating best friend whose hospitalized daughter has just been diagnosed with cystic fibrosis.

Beautiful people lift you up with praise, challenge you to adjust your point of view, acknowledge your pain, and listen without questioning.  Beautiful people give generously, of their time, their wisdom, their encouragement. Beautiful people know what’s important—faith, hope and love. And they know what isn’t: the superficial fodder that obstructs our vision into the soul of another.

Handwritten letters #5 and #6 go to two beautiful people—my college roommate and beloved friend, Cathy, the one who jumped into her car and found me crumbling in a hospital hallway. And the other is written to my eldest daughter, Shelby, who loves me, organizes me, encourages me, challenges me, and motivates me. My 18-year-old girl is a whirlwind of energy and generosity—in spite of that damned cystic fibrosis diagnosis.

Beautiful people check me out at Wegmans, Kohls, and Rite Aid. They take my drive-thru order at Chick-Fil-A or McDonalds. Beautiful people answer phones, fix cars or furnaces, or teach children. They steal away for a night out to celebrate 27+ years of friendship. Beautiful, gentile, patient, uplifting people are all around me. And today, I see them not in the pages of People or Us, but in the pre-op room. Lynette. And in the recovery room. Erin. And in the neighborhood, getting my youngest son off the bus while I sat in a surgery recovery room. Christina.

Thank God for the beautiful people.

Be blessed—and be a blessing,

Martha, LoudounCrazyMom

Click for this week's inspirational tune:"Beautiful" by Mercy Me.

Day 32. Tender love is the secret.

Words of encouragement. God, do I need those. Especially today, frustrated by the hoops I’m having to jump through to get my daughter, Shelby, in for an endoscopy. Life is already difficult enough when you live and breathe every moment with cystic fibrosis. Why do the insurance companies and doctors’ offices twist the knot in my stomach even tighter? Deep breath, Martha.

So I get home today, and my daily reminder from God is waiting in my inbox. It is perfectly written, and perfectly timed. God knows just how to reach each of us, where we are at any particular moment in time. It’s a song on the radio. A phone call from a friend. A smile from a stranger. The last-minute doctor’s appointment that opens up when you’ve given up all hope. God’s steadfast love rushes in with what we humans call “a God moment.”

Maybe you need a God moment today, and every day from here forward. Sign up for Reminders from God, a little sustenance from heaven to pull you through, encourage you, love you.

Reminders from God

Reminder from God - Day 32 

“Tender Love is the secret. Love those who you are training, Love those who work with you. Love those who serve you.”

Letter #4 of 52: Sweet Child of Mine

We love because He first loved us. 1 John 4:19

Cullen

At three, he spent endless hours on our Naperville, Illinois, basement floor, meticulously constructing elaborate Lego vehicles.

At seven, he collapsed into unexpected tears when his sugar-cube igloo–a first-grade project–refused to take the shape he envisioned.

At ten, he stoically listened as we shared his big sister’s life-altering diagnosis, knowing full well he, too, would have to be tested for cystic fibrosis.

At eleven, he spent 12 consecutive days away from home, having the time of his life at Summer’s Best Two Weeks camp. I limped through, missing him terribly. (This summer, four of our five will head to SB2W--our youngest, Sean, for the first time.)

At fourteen, he evaded human contact, disappearing into his bedroom for hours, his teenage body hijacked by hormones, growth spurts, and mood swings.

Now sixteen, he fascinates me with his computer acumen, the ease in which he navigates the worldwide web and its universe of possibilities. He is bright, witty, artistic, athletic, well-mannered, and is a die-hard fan of Christian rapper, Lecrae. He engages in conversations again, and says “yes” far more often than “no.” My boy has returned, and he is moving closer to manhood with each passing day. That’s heartening, but it tugs at my heartstrings, too.

Letter #4, a store-bought card with my handwritten message, is this mother’s love letter to the eldest of her three amazing, equally adored sons.

All they need is love. Love is all they need.

Tell a child you love them today. Write it down, so when you’re not present to tell them, your handwritten letter will be.

I am a mother of five–so in the weeks ahead, I will compose letters to ALL of my cherished children. (Got that, Cullen, Shelby, Bryan, Cady and Sean? ;) )

Be blessed–and be a blessing!

Martha, Loudoun Crazy Mom

Click for this week's inspirational tune: "This is the Stuff" by Francesca Battistelli

Letter #2 of 52: A Horrendous Day Heads North, Thanks to Compassion

I just set my kitchen timer. 30 minutes.

That’s all I am allowing myself to draft this post. The Stuff of life is calling my name, and the elementary school bus, carrying my eight-year-old Sean and his buddy, Alex, will be here before I know it. So here goes–on with the 52-week letter writing campaign (the handwritten variety).

One of my favorite quotes...which is framed in my entry way.

Letter #2 went out today, one week after my first letter, and I hope my recipient, a kind-hearted, patient registration manager, will find my handwritten words to be at least half as uplifting as I found her actions to be.

When this crazy notion crept into my cranium a few months ago–to write one hand-penned letter once a week for the entire year–I have to admit I thought I would eventually run out of recipients. But what I am realizing is this: The world is filled with people who need to be uplifted, encouraged, and appreciated (me included). One day at a time. One letter at a time. I have a feeling that God will put someone on my heart every week, and this won’t be my work, but rather His.

So here’s the back story. Last Wednesday afternoon, Shelby and I headed to Johns Hopkins in Baltimore, Maryland, about an hour-and-a-half drive from Leesburg, sometimes longer, depending on traffic. Shelby had a 3:30pm appointment with Dr. Cuffari, doctor of Pediatric Gastroenterology and Nutrition. We arrived at 3:00pm, in plenty of time to complete the necessary, new-patient paperwork. So I get a number, am called up to the registration desk, and quickly realize that our appointment was actually yesterday. My face must have turned ashen, as the registration clerk said, “It’s okay, Mom, we all make mistakes. It’ll work out. Don’t worry.”

I am sinking in sudden despair: We are a day late for an appointment we’ve been anticipating for months–Shelby needs to see the GI doctor ASAP.  She is struggling with pain every single day. But while my brain is trying to wrap itself around the possibility of another month or more of waiting for that critical appointment, I ask if there is any chance that the CF team–located in the same building–can see Shelby today, since we’ve driven 1 1/2 hours for an appointment that was actually yesterday.

Thankfully, Wednesdays and Fridays are also the days that Johns Hopkins holds its Cystic Fibrosis clinics, and though we weren’t scheduled until Friday morning, the CF team graciously agreed to see Shelby. But then another wrinkle appeared–our insurance card had expired, as Mike’s company had switched its coverage at the beginning of the year. The CF team couldn’t complete the PFTs, pulmonary function tests, without insurance authorization. So Shelby and I sat there, waiting, waiting, waiting. She was so angry, lashing out at me for screwing up the all-important appointment. I was crumbling internally, blaming myself, running worst-case scenarios through my head nonstop.

And then one Ms. Evelyn Robinson stepped in. The staff in the back had tried to reach the insurance company. They were put on hold indefinitely. I asked Ms. Robinson if I could use the phone and try. She said it wasn’t necessary, but that I could try. So I called. And I sat on hold for 30 minutes, alternating between squatting and standing at the check-in counter. When I finally reached a human being, I was told to call another number. And you guessed it…another ridiculously long hold. Mrs. Robinson kept checking on me, “Mom, you need a chair?”  ”Any luck, Mom?” And dead-end after dead-end, phone call after phone call, Ms. Robinson kept encouraging me, “Mom, don’t worry.”  ”Mom, it’s going to be okay.” She joined in on the phone calls–trying to find the right company, the right phone number, the right person. And while she called, I made another phone call, this time to Dr. Cuffari’s office, to tell them of the appointment mixup, beg forgiveness, and determine the earliest time they could fit Shelby in. God is so good. He gave me Ms. Robinson on one end, and a helpful, accommodating young lady on the other line. They could see Shelby on Friday–in Frederick, Maryland, an hour closer than Hopkins, and she could attend the first half of the school day. Did I mention that God is good?!

In the end, the insurance information didn’t come through until after we’d left the offices. But everyone at the CF center stayed 30 minutes beyond quitting time to see and treat Shelby. Yes, they went ahead and did the PFTs. As the doctor explained, “We’re not going to let red tape get in the way of treating Shelby.”

On our way out, I stopped and told Ms. Robinson how grateful I was for her help and support. And I gave her a huge hug, breaking into tears of thanksgiving in her arms. I think Shelby was a little embarrassed, but she wasn’t mad anymore. She knew that I’d done all I could to repair the mistake. So the anger and frustration dissipated, and we chatted all the way home, stopping briefly for Chick-Fil-A.

That Wednesday afternoon should have gone down as one of the worst days ever. Instead, I walked out feeling whole, extremely blessed by everyone at Hopkins, particularly Ms. Robinson, and realizing exactly to whom I’d be writing my second letter.

Through our words and actions, we all have the power to influence someone’s day–to raise them up, or to knock them down. We can choose to be inpatient, rude, or condescending. Or we can choose to be Ms. Robinson, who saw a mother struggling, and who offered compassion, patience, and encouragement. Another person might have dismissed me–told me to go home, that there was nothing they could do, that it was all my fault.

Wednesday is a day I will never forget, not because of everything that went wrong, but because of everything–and everyone–that went right.

Every day is just ONE day. A reminder to myself (and you) to take one day at a time:

“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own” (Matthew 6:34).

Are you anything like me? I need inspiration and encouragement, to know that I am not ever alone in my trials. That my failures do not make me unlovable or unworthy. God is always with me, but sometimes I forget to be still and listen so I can hear His call. God’s love is second to none…which is just one of the many reasons I love this website:  www.iamsecond.com. Real people. Real stories about the power of God’s faithful love, boundless forgiveness and eternal presence. I invite you to watch and share with those you love.

My husband gets home tonight after four days at the Consumer Electronics Show in Las Vegas. Maybe Letter #3 will be a love letter to my husband of 21 years. Mmmmm….

Thanks for reading–a little or a lot of my blog. Stop by anytime for the ramblings of a mother of five. :)

Be blessed–and be a blessing,

Martha

Robins and Motherhood and Megan’s Walk

Jessica, Hannah and Shelby at last year's Megan's Walk.

I’m most in touch with my insides when I’m outside.

The rain stopped for a while today.  The sun came out. And I did, too. Still in my work clothes, I knelt down beside my weed-infested front bed and began methodically pulling out the evil invaders. They multiple faster than bunnies or rats…green monsters that flourish in rain, in drought, in shade, and in sun. I understand that I’ll never defeat these alien intruders, but for some reason, pulling them out of the damp earth, a far easier process than when the ground is rock hard from drought, is a soothing process. I can feel myself relaxing. And little, formerly imperceptible sounds rise up and serenade me softly.  I begin to hear the world around me, in ways I wouldn’t hear otherwise. Owls, high in the new-growth canopy, calling to one another. Whooo. Whooo. And the trees, rustling slightly with the mild breeze. The hum of our air conditioner, a steady throb in the background. Then the sudden, anxious cheeps of baby robins, alive with anticipation, as their mom comes home.

I stopped the weed pulling and stealthily walked the 10 feet over to investigate, to see the miracle happening just inside my prickly holly bush. There sat Mommy Robin, unfazed by my presence, perched on the edge of her nest and feeding her brood. They were an incredibly demanding bunch, like my own five children. They wanted what they wanted, and expected Mom to deliver. Reflected in Mommy Robin, I saw a little part of me. Rushing here and there with one guiding directive–take care of my kids.

Baby robins awaiting Mommy's return.

Mommy Robin built a beautiful nest and surely the safest location she could find–no feline would dare venture into the holly for fear of being impaled on its razor-sharp leaves. And the worms were plentiful, particularly because I’ve been planting in the front bed, disturbing the worms, teasing them to the surface with every new hole dug. Mommy Robin was doing everything she could to keep her fledglings safe, yet in a moment a storm could rob her of it all. Or a neighborhood cat. Or an overly eager fledgling could fall from the nest rather than fly from it. No matter how much preparation we mommies do, how high we build the barricades, how far we go to bring our children happiness, sometimes life delivers the unexpected, the scary, the tire-blowing pothole along the journey.

Five years ago, I thought my nest was soundly constructed, that every branch was neatly placed. I remember telling God “thank you for my five healthy children.” And then the storm came. And my nest didn’t keep away the unwanted diagnosis…the news that my first-born daughter, 12 at the time, had been living her entire life with Cystic Fibrosis. We thought it was another sinus infection. It was a storm so big that we all needed God to hold us up as everything around us came crashing down. Driving home from the hospital, I remember hearing Casting Crown’s “Praise You in this Storm” for the first time. It steadied me, and reminded me that wherever I am in life–in warm sunshine listening to the world around me or in the throes of a pitch-black crisis, God has our family in the palm of His hands.

Our eldest daughter Shelby is 17 now, a rising senior with great aspirations. She’s a varsity runner so passionate about her sport that she’ll take the street-lit neighborhood roads at 10pm to “get in her run.” Yes, a mighty storm roared into our lives, and here it remains. But we’ve learned to dance in the rain, watch the thunder and lightning in awe, to laugh because there’s so much joy in this world.

Meet me at Megan’s Walk on Sunday, May 22 at 9am @ Loudoun County High School, Leesburg

This Sunday, May 22, we’ll be at Megan’s Walk in Leesburg–one of hundreds of Great Strides walks around the country raising money to invest in a cure for Cystic Fibrosis. Fifteen-year-old Megan Stewart, for whom the walk is named, lost her life four years ago to complications related to CF. For 10 years before that, Megan was the unofficial mistress of ceremonies at her namesake walk.  At her last walk, she and friends served as greeters at the beginning of the W & OD Trail, handing out maps and smiles to passing walkers. Megan had a smile that could light up a room. She had friends and tennis teammates that adored her. And parents and a brother Ben who loved her beyond comprehension. And despite everything, all the planning, the nest-building, Megan left this world far too early.

Every life is precious. Every moment is irreplaceable. I forget that sometimes. I waste time sinking in the unimportant worldly details. And that’s why pulling weeds is vital to keeping my perspective. I needed to hear the owls. And watch Mommy Robin do everything in her power to care for her babies. And to remind myself that this is the beautiful stuff. The little stuff. The moments spent with my kids, and my husband, not doing chores or rushing to the next game or concert, but rather simply loving one another. Taking care of each other. I love you, Shelby, Cullen, Bryan, Cady, Sean and hubby Mike.

Shelby

This Sunday, I will watch Shelby cut the ribbon to start the walk. I’ll watch her silly self race off, refusing to walk, refusing to slow down, refusing to let CF take one minute more than it should. Come join us for the walk, Megan’s Walk. Registration begins at 9am, followed by a jazzy warm-up session, and a few miles of walking along the scenic W & OD Trail. There’s free food before and after. T-shirts for every walker who raises or donates at least $100. There’s music and a silent auction. Face painting and plenty of free eats from an amazingly generous group of community donors–including Moe’s and Deli South. But most of all, there’s hope for a future when the storm of a devastating CF diagnosis stops charging into parents’ lives. You can be part of the cure–by coming out and experiencing an emotionally moving day under the Loudoun County sun.  Maybe you’ll spot a robin along the route, in mommy mode, doing everything she can to protect her babies. Just like us.

To donate to the Cystic Fibrosis Foundation and support our walk campaign, kindly visit: http://www.cff.org/Great_Strides/MarthaRombach7087

May your Friday be perfectly wonderful!

–Martha

Here are ten facts about CF that I bet y’all didn’t even know…

1. Nearly 1,000 new cases of CF are diagnosed each year.

2. Everyday a baby is born with CF and everyday someone dies from CF.

3. 1 in 31 Americans is a symptomless carrier of the CF gene and doesn’t know it.

4. In 1 out of 400 American couples, both are carriers of the CF gene and usually, neither one knows it.

5. If both parents are carriers of the CF gene, there is a 25% that each child they have will have CF.

6. CF related diabetes is a third type of diabetes that no one talks about. It is similar to type 1 and 50% of those with CF will develop it. There are no medications to help.

7. Doctors advise people with CF not to spend time together and must keep their friendships to an online status.

8. The main “problem” in CF is that chloride (salt) cannot pass properly through the cell wall. This is what makes the normally thin mucus in our bodies thick and sticky, trapping bacteria and clogging the lungs and pancreas.

9. Salty ocean air has been shown to be beneficial to those with CF, helping them to breathe better.

10. The CF Foundation was created in the 1960s by concerned parents. Because of their dedication and hard work, treatments have been created to raise life expectancy from age 8 in the 1960s to age 37 today.