My Son, Me and IBD: A Mother’s story from across the pond

I recently connected with a woman named Amanda Bate on Twitter. She’s a freelance copywriter, social media marketer, a Crohn’s warrior and a mom from the United Kingdom. Amanda was blindsided by the diagnosis of Crohn’s disease after giving birth to her son, Matthew. She sheds light on what it’s like to raise a child, while battling an invisible, chronic illness. This week, it’s all about Amanda’s story. I know it will inspire you, just like it’s inspired me:

School’s out for summer and we’re busy planning days out, trips to the cinema, walks in the park – you know the usual mum and son stuff.  Fourteen years ago I never imagined life returning to some kind of normal – so this is a big deal to me.

Parenthood is full of the unknown, mostly exciting, sometimes scary.  But the one thing every mum and dad have in common is the change in lifestyle.  We adapt to having a new person in our lives.  We learn new skills, learn we can love more, learn how to teach.  Life is never going to be the same.  It’s going to be wonderful.

Along Came Crohn’s

When Crohn’s came into my life it threw my plans for motherhood left, right and center – just like bowling a strike, only there were no whoops of joy.  During my pregnancy I grew ill, experiencing inexplicable pain. Steroids stabilized me until Matthew was born, then invasive tests confirmed that I was suffering from this chronic disease. I had to adapt to life with a new baby and an illness I knew nothing about.

My body struggled with the pregnancy and Matthew was born six weeks early September 25, 2003.  He spent his first weeks in an incubator in the neonatal department. My symptoms got worse and I was admitted to another ward. I was in the same hospital as Matthew, but to me it seemed I was 100 miles away. Someone else was watching over him – that wasn’t part of my plan.

Talk About Emotional

Crohn’s is stubborn and awkward when it comes to drugs – some work for a while, others don’t work at all. Getting the medication right took time. Oral drugs weren’t doing the trick, so I reluctantly turned into a pin cushion. summer 2006 051My body was being treated, but what about the negative thoughts in my head? It became apparent that I needed counseling, I was spiraling into a dark place… all triggered by guilt.  I wasn’t the mum I wanted to be, I believed I wasn’t going to be good enough.

My amazing counselor lifted me from that dark place and made me understand what really matters. So what if I didn’t have the strength to go to the park, to push the swing, to race to the top of the slide – all a child needs is fun, laughter, joy and love.

Growing 

As Matthew grew so did my understanding of Crohn’s. Matthew has been with me every step of the way. He is my reason to keep going, to fight, to get stronger. He came to every appointment with me, every blood test, visited me when I had to stay in hospital, and kissed my scars after surgery.

My doctor involved Matthew and gave him the same job to do at every appointment; he loved our visits – glad one of us did!  When I started to self-inject medication at home he would help prep the area and watch with fascination. To him, this was normal. I was normal.

On my bad days we’d invite teddies to a picnic on the lounge floor, snuggle and read together. We were incredibly happy.

Stronger

I never hid Crohn’s from Matthew, there was no point. It was important to me that he knew why we were a little different, why some days he had to be gentle with me and let me rest.  I explained as soon as I knew he could understand that my immune system is faulty and thinks my guts don’t belong to me – we make fun of it – silly immune system!

The more we learn about this disease, the less scary it becomes.

 

Together

So here I am 14 years later with a full-time job, hobbies, and lots of time for my family. Matthew, now a tall teenager, has watched me grow stronger. And there was me worrying I wasn’t going to be good enough – I’m a mum he’s proud of!

Matthew has run the Junior Tough Mudder and I’ve ran the Manchester 10k in scorching heat, both to raise money for Crohn’s and Colitis UK.  At the start of our journey we were both finding our feet … just look at us now!

Crohn’s Is Our Teacher

Together Crohn’s has taught us not to judge, to care, to listen, to understand, to be patient. But most of all to enjoy life!

 

Influencing healthcare through your patient journey with WEGO Health

If you had told me 12 years ago, when I was diagnosed with Crohn’s disease, that I would be able to make a living sharing my patient journey and being a patient advocate, I wouldn’t have believed you. That changed in the weeks leading up to delivering my son, Reid. That’s when I came across a website promoting WEGO Health Experts, an on-demand hiring platform. I was immediately intrigued and completed an online profile describing my background and areas of expertise.

WEGO Health Experts provides me and others with complex health conditions an avenue to participate in freelance consulting opportunities on my own terms. Experts_homeWhile my disease may be a big part of my identity, it does not define who I am or take away from my professional skills and talents. At first, I thought the platform seemed too good to be true.  Then, before Reid had even reached two months, WEGO Health’s director of marketing reached out to me about the possibility of doing media relations to help get the word out about the company’s mission and hiring platform. The opportunity was too good to pass up.

The WEGO Health Experts platform is empowering for all of us who are actively working as patient leaders in the chronic illness community. Since its launch in February, more than 400 patient experts have joined the network. Rather than feel isolated and alone in our experience, we have the ability to bring the patient perspective to healthcare innovators.

We have the added benefit of a flexible and comfortable work environment and the chance to bring our combined professional and patient experience to bear on big challenges in healthcare.

This platform is an enabler. It enables me to take a step back, reflect on everything I’ve encountered since the day I was diagnosed, and use that knowledge to inform and shape the future of healthcare. That’s powerful!

As a member of the chronic illness community, those of us with professional backgrounds are part of an untapped workforce. WEGO Health recognizes this and provides the tools to connect with forward-thinking companies who want to hire freelance consultants.  It does my heart good to know that I’m able to stay home with my son, while still working part-time and utilizing my talents. It’s an emotional and thought-provoking revelation that those dark, difficult days in your journey can help us and our families thrive down the road.

We all have a story to tell. Our insight and our personal connections within our chronic illness communities sets us apart, and it’s incredibly rewarding to know we can help influence research and conversations. image1 (13)We can be a voice for those in our own community and inspire others. Instead of worrying about the unknown and when my next flare up or hospitalization may occur, this platform allows me to hold the reins and take charge. I can decide which projects make the most sense for me given my story, my skills and my busy days as a new mom.

With the uncertainty of healthcare and the expense of high cost medications, tests and hospital visits, this allows me to contribute to my rainy day fund and have confidence that when the going gets tough and I have the burden of getting healthy, I have some additional income to ease the burden of financial concerns.

Prior to Reid’s arrival, I worked full-time as a journalist and writer. I spent nearly 10 years at TV stations in Illinois, Minnesota, and Wisconsin as a news anchor, producer, and reporter. I then spent more than three years doing corporate communications and public relations. This meant countless days of putting a smile on my face, while my pain level escalated on the news desk or in the boardroom. Now, at this point in my life and career, as a new mom, I realize each experience, both at work and at home, brought me to where I am today as an independent freelance Patient Expert.

Interested in learning more? Check out the WEGO Health Expert platform, fill out an application and see where your valuable patient and professional experience takes you.

Bringing your chronic illness story to life through podcasts

Podcasts are powerful in our digital world. According to studies, 57 million Americans now tune in each month to a podcast…that’s up 23 percent from last year. It’s a way to share your valuable patient journey and personal experience with the masses, simply with the click of a button. As someone who’s battled Crohn’s disease for more than 12 years, it’s empowering to be able to share my story not only through the written word…but also verbally. Podcasts literally give people like us a voice and a platform to share our impactful stories. It’s one thing to read someone else’s words… it’s another to hear them relive their diagnosis and talk about their battles.

One podcast in particular has been catching my eye. This summer, Bill Coon launched the “People You Should Know” podcast. PYSK COVER ART GUEST_Natalie HaydenAs a two-time heart transplant and kidney recipient, Bill wanted to create a place for people to share their unique stories with the masses, raise awareness and do it all in an upbeat, fun and informative way. I was just featured on his podcast last week. Click here to check out the interview.

“If the person is interesting or has a great amount of knowledge on a topic that I think listeners will find to be interesting, I am open to exploring their story. To put the wide range of guests into perspective, the show has already featured advocates of three different illnesses, a lovely woman who moved to Sri Lanka to use her veterinarian skills to help the stray dog population and an individual who left his life behind to travel the globe on a bike. Future guests of the podcast will include a finance expert, a well-known sports reporter and a handful of people who are running interesting nonprofits,” said Bill.

Between social media, blogs and podcasts there are so many avenues and ways for those in the chronic illness community to connect and help one another. reid4monthsThis past week I had the opportunity to video chat over Facebook with a young woman while she was in the hospital battling Crohn’s disease in Spain. I was able to start talking with a mom in Michigan who’s four-year-old daughter was recently diagnosed with Crohn’s.

As the network grows, we get stronger from one another. While chronic illness can be incredibly isolating, it’s also liberating to be able to find this invaluable network of people who feel what you feel and who understand your current reality. Give it a shot, you won’t be disappointed. Just because what we’re battling is invisible, doesn’t mean we need to be invisible to one another.

Podcast spots for Season 1 of “People You Should Know” are almost filled, but Season 2 is in the works. Reach out to Bill here if you believe you or someone you know is someone he should know.

12 years later: A letter to Crohn’s disease

It’s safe to say the month of July has been my least favorite month for the last 12 years. July 23, 2005 was my own personal “D-day”…the day I was diagnosed with Crohn’s disease. julyI managed to stay out of the hospital and control my disease with oral medication until JULY 2008…fast forward to JULY 2015 and I was hospitalized with my third bowel obstruction in 16 months and told I would need bowel resection surgery. The month of July is just not my friend! When I got engaged my mom and I looked at one another and knew the wedding would not be planned during that month. As August approaches, I always feel a bit of relief.

I can hardly believe yesterday marks 12 years since I was told I had a chronic illness, for which there is no cure and one year since I started this blog. Here’s a letter to my old friend, Crohn’s.

Dear Crohn’s,
You’ve been a part of me for so long now, it’s difficult for me to remember my life before you. You’ve challenged me, shaken me to the core, tested me and taught me. You’ve pushed me to my limits, but grounded me at the same time. You’ve caused me to think about health in a whole different light. The stigma of living with you and the lack of education out there about what you are surprises me to this day. You are so much more than a “bathroom” disease. You are so much more than a bad stomachache. IMG_0077You demand constant attention and don’t care who has plans, because you do things on your own watch.

You perplex me just when I think we’re in a good place and I have you figured out. You love to play hard to get and rarely take my feelings or worries into consideration. You test my patience and have created a constant inner dialogue in my head since the moment the doctor opened up his mouth and uttered the words… “You have Crohn’s disease.”

I will give you credit though, for the most part you’ve responded well to medication and allowed me to keep my drug regimen in check the last nine years. IMG_8476 (1)I’m thankful you’ve enabled me to stay on Humira and that I have yet to build an antibody to the drug, even though I went off of it for three months while healing from my bowel resection surgery.

You obviously love when I’m pregnant…you tempt me to want a huge family! photo by J Elizabeth Photography www.jelizabethphotos.comEven though you’ve stricken me with several hospital stays, surgery, scary ER visits, tests, pokes and prods…you stayed silent on my wedding day and enabled me to become a mom without causing one complication or issue. For that, I am eternally grateful.

You’ve also empowered me and brought clarity to my life about what’s important and how far a compassionate heart can go. While most the time I think of you as my greatest enemy, at times you’re also my greatest ally. You show me people’s true character, and who is a true friend. You shed light on who I can lean on when I’m too weak to stand on my own. You helped me navigate relationships and realize that Bobby was the best person and caretaker a woman could ask for.

When you decided to strike I was a frail 21-year-old girl, fresh out of college, wondering how I was ever going to live a normal life and work full time. image1 (3)In the last dozen years, you’ve been with my every step of the way and witnessed firsthand how I’ve overcome each setback, each flare up, all the scares and all the daily worries. I hope you’re scared of me now.

Here’s to many more years,
Natalie

My response to the bully on Twitter making fun of ostomy bags

Bullying. Think of it however you want. What do you envision? Has it happened to you? This morning while feeding my son I was casually looking at Twitter. I was absolutely flabbergasted and appalled by tweets made by a “journalist” with 46,500 followers about a woman with an ostomy bag. I personally do not have a bag, but I know many people who do. And the hateful, hurtful and shocking words made me feel sick. In my twelve years battling Crohn’s I personally haven’t been targeted by hateful banter, but it’s so sad to think others with chronic illness are targeted. Here are some of the tweets (that have now been taken down-excuse the language)…

“She can’t help but talk shit. She has such a problem w/ shit in her body she has to wear an ostomy. Being full of shit is her actual illness.”

I could care less about her or her illness. She doesn’t deserve my sympathy or respect. Sucks for her.”

“I’m not the one w/ a shitty hole in my stomach virtue signaling about how my stomach hole is cute. Why lie to her & tell her it looks good?”

“I’m not making fun of her. I am making a factual statement. She is actually full of shit. Ppl who are walking toilets shouldn’t throw shit.”

“Your friends are lying to you. It isn’t attractive. When you post pics like that you’re just asking for a confidence boost.”

I think you get the idea. I’m not one to instigate or enjoy confrontation. As a journalist…and just a decent person, I’ve always done my best to steer clear of putting anything out on social media or my blog that could create anger, seem biased or one-sided. But, as a member of the inflammatory bowel community, as a voice for the millions who suffer in silence and as a new mom…I just can’t let this go.

I commend each and every IBD patient who proudly shows their ostomy bag like a badge of honor. You know what, you deserve to. What you have endured to get to that point and what you experience physically, mentally and emotionally each day is difficult for someone like me to comprehend.

When I scroll through social media and see men, women and kids in bathing suits or work out clothes and not hiding their bag in shame, it’s empowering. It makes me smile to know these people aren’t letting their disease or their personal situations hold them back from living a full life. Rather than hiding their bag or being embarrased, they are showing people all over the world that your quality of life doesn’t have to be destroyed or hindered because you go to the bathroom differently than everyone else.

Is having a bag ideal? No. Is choosing to rise above your struggle and not let it hold you down incredibly inspiring. Yes. So when you see tweets like the ones above, brush your shoulder off…drown out that noise and know there are millions of others who look to you as a hero. Shame on anybody who thinks otherwise and shame on the keyboard warriors who can spew such hate.

The power of sharing: Managing Crohn’s with Humira

Today I will give myself my 236th Humira injection. This past week marked nine years since I began giving myself the biologic drug to help manage and control my Crohn’s disease. Ironically, this past week I also had the opportunity to give two speeches in Chicago about my patient journey and what it’s like to be on Humira.

During my speeches, I explained why I chose the injections vs. getting an IV infusion of a different biologic. I chose Humira because at the time I was a morning news anchor and I was private about my disease battle. IMG_2642I didn’t want to be sitting in a public place, hooked up to an IV in front of my viewers for hours at a time. I also chose Humira because of the convenience and the ability to give myself the medication in the comfort of my home. It’s a discreet way of treating my disease. A plain Styrofoam cooler box arrives to my doorstep, I put the injection pens right in the fridge and every other Monday night I go through the motions of administering the injection.

During the question and answer portion a man in the crowd asked me a question that perplexed me a bit…and still has me thinking. I had explained how painful the injection was, how the medication feels like liquid fire running through your leg for those 10 seconds you need to hold it in. It’s not like a typical vaccination or shot you receive at the doctor’s office. IMG_0234Humira sets the bar for me when it comes to pain. To give you an idea I thought my Humira was wayyy more painful than my epidural and spinal block before my scheduled C-section.

Knowing that—he wondered if God forbid my son was ever diagnosed with inflammatory bowel disease if I would prefer for him to go with Humira or one of the IV infusion drugs. I paused for a moment…the thought hadn’t even crossed my mind yet. It made me wince even thinking about my son having to endure such pain.

I told him if it was necessary I would much rather have my kids do the Humira injections, because rather than having to go to a hospital or doctor’s office and sit amongst others who are battling illnesses, I would be able to sit on the couch next to them and we could do our shots together. IMG_0983After that 10 seconds of pain Reid would be able to go back outside and play with his friends, he would be able to go back to playing with Legos on the floor. His medication wouldn’t need to be such a big part of his life. It would be our normal routine and we would face the disease head on together.

After the question and answer portion a young lady came up to me…she was probably about 20 years old. She said her mom has battled an auto immune disease her entire life and that she’s always been her hero and that I’ll be the same for my son. Another audience member took the elevator with me during the break. He told me that when he was 13 years old, his dad was diagnosed with Crohn’s disease and that he’d been in tears throughout my entire speech.

Having the chance to hear from young adults and people who are familiar with what inflammatory bowel disease does to loved ones once again provided great perspective. It gave me newfound hope that whatever flare ups or hiccups I have with my disease journey as a mom, will only make my children stronger.

Seeing Crohn’s disease through the eyes of others

People cross paths in our lives—whether in person or virtually, for a reason. I honestly believe this. Each relationship, friendship and interaction has meaning. In the past week, I’ve been intrigued and almost taken aback by a few interactions that I just had to share with you.

I was at a bridal shower with 15 women. Ironically, out of that group two of us battle Crohn’s disease and one woman’s husband has it. First off, scary how prevalent inflammatory bowel disease is becoming. Second, I was enamored by my lunchtime conversation with a woman who was diagnosed with the disease more than 40 years ago. She had heard about my blog and brought up the fact that she too has Crohn’s disease, and was diagnosed when she was only 17 years old. Now in her 60s, having raised four healthy children, I had a million questions I wanted to ask her.

Her attitude about Crohn’s inspired me. She acted almost flippant about the whole thing. She can’t remember how many bowel resection surgeries she had, she is on no medication, eats whatever she wants, didn’t pass on inflammatory bowel disease to any of her children and had a successful career in nursing. Damn, this woman is my new hero! Hearing her perspective and how casual and comfortable she was with sharing her story gave me hope that as I grow with my illness and get to be her age that I too can be like her someday.

IMG_0512A few days passed and I noticed on Instagram that I had four “unapproved” messages in my inbox. I hadn’t seen the notifications and just happened to come across them. Each of them was from a female with Crohn’s…each pulled at my heartstrings. Teens, prospective moms, pregnant women and newly diagnosed girls in their 20s…all asking ME for help. I was holding my son when I came across these messages. My eyes filled with tears. I felt a sense of accomplishment and heartache at the same time. I want to share one message with you from a 24 year old named Emma, from Spain:

“Hello…I don’t really know how to start or even if I will ever get a reply, but here it goes! I have just been diagnosed with Crohn’s disease and it’s turned me upside down and I’m really struggling to get my head around it all…24 years old with a lifelong illness.

 

IMG_0550

Emma, recently diagnosed with Crohn’s

How did you cope? What is everyday life now actually going to be like? How long did it take before you started feeling normal again? I just can’t seem to stop crying at the moment, I know I need to be strong…but, I don’t feel like I can. Anyways, sorry to bother you! I really do hope you reply. XX”

 

When I read that message. It brought me back. It brought me back to the day I heard the words “you have Crohn’s disease” at age 21 while in the ER at my hometown hospital. My mind raced back to being a young 20-something now carrying the burden of knowing that for the rest of my days, I would be fighting an invisible, chronic illness that would bring about a great deal of pain. Pain I had previously experienced without any answers, but pain that was only the tip of the iceberg.

I immediately wrote back to her and let her know that the diagnosis is the hardest part of the journey. When you’re told you have a disease—for which there is no cure, and you are so young…it feels like you are suffocating. You can’t even begin to gather your thoughts because there are so many unknowns. You feel so sick and so weak, the thought of having enough stamina to fight for feel good days seems nearly impossible.

While the disease will always be a part of you—who YOU are, changes. You will find an inner strength that is ignited. You will be able to gather perspective and find comfort in helping others. You will come to realize that while you have Crohn’s, it’s not your identity. It doesn’t need to dominate all your thoughts and all your being. Yes, it’s going to be a part of you for the rest of your life, but it’s in your hands to take all the good and all the bad and make it your own story.

I’m here to tell you—you can get married, you can have babies. IMG_0443You can travel. You can do it all. While the disease will hold you back at times, you don’t have to limit yourself from enjoying all the beauty that life has to offer. Ask anyone with inflammatory bowel disease and they will say the same thing. It’s an awful, debilitating disease that’s hard to handle—but, at the same time you will learn so much about yourself, those around you and how to overcome all of life’s hurdles. Having IBD isn’t a death sentence. Nobody wants it, it’s not fun…but you can live with it. You can thrive and be whoever you want to be, and do whatever you want to do.

The flare-ups, hospitalizations, pokes and prods, tests, side effects of medication, surgeries, etc. are going to be tough…but, in time those moments start to blur in your memory…and each time the disease brings you down, it’s nothing new. You learn what you can tolerate, when you’ve pushed too hard and when you need to take a break and slow down. You will be comfortable communicating with those around you and explaining how you are feeling and what can’t be seen with the naked eye.

And someday…maybe we all can be like that amazing woman I met at the bridal shower.

 

The power of patient advocates and why your voice matters

Hey there. I see you. Do you battle chronic illness in silence…and maybe even with a bit of shame? I feel your pain. I kept quiet about my fight with Crohn’s disease for 9.5 years. It wasn’t easy, but I just didn’t feel ready to share my story and be labeled as “Natalie… the girl with Crohn’s disease.” I know it’s overwhelming, I know what a burden it is to be in a crowd and have a secret that no one knows about. I was that person fighting an invisible illness and only sharing with those close to me from age 21-30.

TV interview on KSDK about Crohns

Nobody wants pity or sympathy or to be thought of as different. But, let me tell you what it feels like when you finally make it known that a disease is part of your being. It’s freeing. It’s cathartic. It’s empowering and it’s powerful. Your experience as a patient and as a person is like no one else’s. You have the ability to inspire others by sharing your struggles and your triumphs. Just because you battle chronic illness doesn’t mean you can’t accomplish all you want to. The only person holding you back…is you.

By sharing your story you open yourself up to a network of online strangers on social media who quickly become friends and your most trusted cheerleaders. We lift each other up. WALK4Because even though we may be hundreds or even thousands of miles away, we can fathom what it’s like to battle a flare and face the unknown every hour of our lives. It takes some courage to spread the word and be an advocate, but once you do, you’ll wonder why you ever held it all back.

When it comes to motherhood, please know that you are not alone in your worries and concerns. There is a whole mama tribe online and in your community that gets what it’s like to have chronic illness as a parent. I find it so beneficial to reach out and talk to fellow moms and prospective moms on social media. It’s amazing how quickly you connect and how easy it is to relate to one another. meandreidHaving a chronic illness like Crohn’s and having a baby pretty much makes you a bad ass (no pun intended). 😉 You got this! And when you look at that amazing miracle YOU created each day, you’ll feel an inner strength to push through the hard days that much more.

During my pregnancy and in the three months since delivering my son, I’ve quickly come to realize the power of patient expertise. If you’re reading this wondering if you should share your story, the answer is YES!!! Please do, because everyone…including myself, can benefit from your experiences, viewpoints and perspective.

I have some exciting projects, speeches, podcasts, and articles in the works that I can’t wait to share with you guys. This month marks my 12th anniversary with the disease…I’m amazed at where the journey has taken me thus far, and I look forward to candidly sharing it all with you.

 

How my friends’ experience with child loss continues to inspire others

This weekend my friend’s daughter celebrated her 4th birthday. Her brother and sister celebrated from above in heaven. Peyton, Parker and Abigail were born on June 23, 2013. It’s a phone call I’ll always remember—that my dear friend went into labor with her triplets at only 22.5 weeks gestation. pandpIn that moment, prior to meeting my husband and prior to becoming a mom myself, I thought I understood their pain, suffering and disbelief. Even four years later, those moments in the NICU, seeing Abby’s memory box in the hospital the first time I visited, saying goodbye to Parker, attending two baby funerals in two months…all seems so fresh.

Peyton has been a pillar of sunshine, sass and all that’s beautiful in the world since she decided to make her grand entrance. While living in Springfield, Illinois her mom and I bonded over our TV careers and love for watching the Bachelor with a glass of wine and some homemade brownies.

Week after week I watched Peyton surpass expectations and reach unthinkable milestones. One of my last nights in Springfield, prior to moving to St. Louis I went over to Stacey, Ryan and Peyton’s house to bid them farewell. Peyton crawled to the door. photo by J Elizabeth Photography www.jelizabethphotos.com I thought THAT was amazing. Little did I know what this darling little girl would be capable of four years down the road. I watched in amazement last summer as she walked down the aisle as my flower girl. To say she’s special to me, is an understatement.

I found it eerily ironic that Stacey and Peyton paid us a visit to meet Reid on May 27. Reid was 60 days old at that point. IMG_8254Stacey and Ryan’s son Parker only lived til he was 55 days old. Around that time, I would look at my son and think how unimaginable it would be to have to say goodbye at that point. How heart wrenching it would be to know that your little boy never got to experience fresh air on his cheeks or leave the hospital as most babies get to after a couple of days. The list goes on and on. While the visit with my dear friend and Peyton was sweet, Stacey and I shed some tears thinking about sweet Parker.

As my friends celebrate and honor Peyton, Parker and Abby’s 4th birthday, they are also celebrating a year of their non-profit charity, Triple Heart Foundation. The foundation provides peace of mind to families who are in the trenches with little ones in the NICU. They just launched “55 Days of Summer.” 55 days of summerIt’s more than just a fundraiser, it’s a chance to see how random acts of kindness can help make our world a better place.

“While being a parent to children on earth and in heaven is difficult, all three of our children gave us new purpose in life. We were helped tremendously during the summer and fall of 2013. Strangers sent us gifts, cards and lifted us up in prayers. So, we want to pay it forward through Triple Heart Foundation,” said Stacey.

They have a huge goal—but, I know they will reach it…because that’s what this family does. They continue to beat the odds and inspire others. They are looking to raise $5,500 this summer. Donations can be sent through their website, you can send books, or simply spread the word. Every heartfelt effort counts. For a list of book suggestions or to donate, click here

IMG_0132At Peyton’s birthday party yesterday, as I held my son Reid…I looked at Stacey and Ryan with an even greater sense of respect and love. This family is the perfect example of overcoming obstacles, taking hardship and finding ways to turn that sadness and perspective around to help others. The flashbacks of Peyton fighting for her life in the NICU were overshadowed by watching her struct around with her friends in the backyard and laugh as she went down the bounce house water slide without a care in the world.

Why a trip to Target is something I’m celebrating with my son

Going to Target. Not a big deal, right? For me, it took 11 weeks until I felt confident bringing my son to the store with me. That may sIMG_9368ound crazy. But, I have my reasons. Throughout my entire pregnancy, in order to keep my Crohn’s disease in remission, I chose to follow doctor’s orders and continue taking my biologic drug, Humira…along with a pill called Lialda.

I’ve been giving myself Humira injections since 2008. Since I started the shots I’ve known that the drug suppresses your immune system. If someone is sick around me, I am much more susceptible to catching their illness.

So, as a first-time mom…you can imagine why I was a bit apprehensive to take my son out in public or allow just anybody to hold him. My pediatrician let me know at his 2-month appointment, that his immune system will be suppressed until he’s about 6 months old since Humira passes through the placenta. My gastroenterologist team agreed with my pediatrician that Reid should not receive live vaccines (aka the Rotovirus) and that until he was vaccinated at 2 months, he needed to keep a low profile for his own protection.

Humira is “safe” for pregnancy …that’s the hope anyway, which is why I chose to only breastfeed Reid for three days. Gave him the colostrum (aka liquid gold) and then, as hard as it was (and much more emotional than I thought)… we started him on a bottle since there are no long-term pregnancy studies associated with the injection and breastfeeding.

This week, I decided to take Reid to Target on a whim. I was driving home from my mother in law’s house after a nice visit. image1 (1)Reid was asleep in the backseat. His next feeding wasn’t for an hour. I figured this was a good time to try this out. The experience of putting my son in the cart and bringing him into a store for the first time was empowering and exhilarating. I kept checking on him and smiled to myself as my new little shopping buddy had sweet dreams as I filled the cart around his car seat.

I know keeping him “in a bubble” isn’t going to be healthy for either of us. Staying out of public stores—whether it was a grocery store, the mall…or Target…for 11 weeks hasn’t been easy. But, my husband has been incredibly helpful and we take turns running errands when need be and leave Reid at home.

For those who haven’t walked in the shoes of someone with a chronic illness or someone whose child is immune suppressed (no matter what the reason), it may be difficult to understand the importance of this decision. When you live with an illness every day of your life for nearly 12 years (whether you’re in remission or not) it’s part of your daily life and you learn to make sacrifices to protect the healthy days you have. FullSizeRender (1)I know I’ll be on Humira for my future pregnancies and no matter how big my family is, we’ll find a way to keep a low profile when it matters most.

I’m inspired by my Godmother who raised three kids four doors down the street from me and spent YEARS without going in public since her middle son was the eighth newborn heart transplant in the United States. The slightest cold or infection could have taken his life. As cousins who grew up more like siblings, we entertained ourselves at home or outside in the backyard. We took every precaution to keep him healthy and safe. I wore masks for years as a little girl playing alongside them.

You make your situation doable and do what it takes, because nothing is more important than health and family. My cousin Bill was FIVE years old before he went to a movie theater. Him and his siblings saw Pocahontas with my siblings and it’s a moment we all remember to this day.

I’m glad my husband and I have waited as long as we have to bring Reid out in public. It will do my heart good to know when Reid’s 6 months, that his immune system will be like most other babies on the block.

Just like with chronic illness, with motherhood, it’s imperative to celebrate every small victory and accomplishment along the way, no matter how big or small it is. Now, for that first trip to the grocery store…