I was sitting at lunch by myself, in a busy restaurant. I looked around at the faces surounding me, and wondered what each of these individuals were battling at that moment. Cancer, death, loss of a child, broken heart, abuse, and the list goes on. Looking at them in this public setting, you would probably never know if they were facing adversity. But they very well may have been. I wondered, how do they handle it?
That particular day, I decided I wanted to tell some stories, in a different way than I usually do. My stories are typically told through pictures, from the happiest moments of life. But we all have hardships and struggles, and those are milestone moments too, especially how you handle them. Within tragedy, there’s so many incredible achievements to celebrate, both big ones and small ones.
Here is someone’s story. May you smile more at the strangers around you, because you don’t know what they face when they get home.
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It’s been two weeks since you gave birth to your first baby. He’s seriously incredible. You’re in love with this new life, like you could never have imagined. Sure, your sleep has changed, and you’re wiping a lot of poop off an adorable baby butt. And you probably got sprayed a few times with some pee. But what’s a little pee in your hair? It’s worth it, every second, no question.
You carried this life in your belly for nine months. You got to know him so well, considering you haven’t even seen his face yet. You and your husband talked for hours about your travel plans once he arrives. Your new little family is going to explore the world. Nature, other countries, everything. You’re going to encourage him to try everything. To be open to new experiences. To be open-minded.
You’ve texted with your friends who have babies that are close to your son’s age, making plans for future play dates. Smiling about how your kids are going to be BFFs as they grow up together. Maybe they’ll even marry each other. The possibilities are endless!
You’re looking forward to returning to your successful career, since you’ve worked endlessly for years to reach where you are. But that’s months away, so you’ll think about that later (and who’s going to take care of this little guy).
He’s two weeks old today. You’re still settling into the routine of this whole motherhood venture, but you feel good and it’s going well. The clock says 6:15pm as you, your baby’s daddy, and his Nana are relaxing while the little guy eats.
Your pediatrician calls. AT 6:15pm. Crap. This can’t be good. You’re going to let her leave a message, but your husband tells you to pick it up.
That’s when she says it. Your son’s newborn tests came back (you know, the ones they do on every newborn at the hospital, but things don’t usually come up, so you threw away the pamphlet they gave you as you checked out). He has tested positive for two mutations of Cystic Fibrosis.
YOUR SON HAS CYSTIC FIBROSIS.
You. Are. Speechless.
Tears immediately begin to steam down your face. They don’t stop. For the last two weeks, you’ve been getting to know a perfect little baby. You haven’t seen any obvious signs of something being wrong. You can’t fathom how this is even possible.
At that moment, you have no idea how your life will change. Forever. The life you thought about, talked about, planned for, and dreamed of, will not be what you imagined. So you take a minute to pull yourself together. You know absolutely no details about this disease. Why would you? You’ve never had to deal with it.
So you Google it. First thing that comes up is the Cystic Fibrosis Foundation (www.cff.org). This is what they tell you:
“Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
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Clogs the lungs and leads to life-threatening lung infections; and
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Obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.” *
Are they really saying that my son may not live past his 40s?
Yes. They are.
Meet Stephanie. This is her story. This is her son’s story.
You never know what adversity you’ll face in your lifetime. And you certainly don’t know how you’ll choose to handle it. Stephanie has made the choice to handle it with grace and strength, each day of this altered adventure she is on.
This is a story about hope and reacting in the best possible way to life’s curve balls. This story is to let you know that YOU are not alone. Whatever your adversity is today, I hope you choose to walk through it as elegantly as Stephanie does.
Her days are filled with an intensive routine that begins at 4:30am. Every. Day. Without these routines, her son would not be able to function as decently as he does. Without a timed schedule, she would have no way to remember what step of the routine she’s on.
Thirteen medications a day. Breathing treatments. Multiple feedings. Diaper changes that never end. And that’s just the morning routine. Add in the doctors visits, battles with insurance companies, appointment scheduling, and the sleep that is needed. Welcome to this family’s world.
Keeping to these routines doesn’t allow much time outside of their home. Her home is her safe place, and she’s grateful to live in a place that she loves. Because of this, some of her and her son’s sweetest moments happen here. Playtime, nursing, baths, Cat In The Hat readings. Just like any other mama, these are moments that Stephanie smiles about.
I spent a few hours with Stephanie to catch a glimpse of what an average day looks like for her. While she describes life as often very isolated, she remains hopeful, and somehow amazingly sane. Honestly, I was mentally a bit tired when I left. I point this out simply to say that Stephanie does this each day, with a smile on her face and a strong, but calm demeanor.
How does she do it? How does she not have a breakdown regularly (because let’s be honest, I probably would). She said it’s futile. It doesn’t get her anywhere. Being stressed and upset does not help her one bit. So she simply gets through it. With the help of her husband, they consistently remain calm and work together to make their son’s life as comfortable and successful as it can be.
What about the everyday things that every stay at home mom does? Playdates. Having friends over. Lunching with other moms. Well, she doesn’t do that. Unfortunately, children with cystic fibrosis must be EXTREMELY cautious around other children. If another child is sick, and her son were exposed, the results could send him to the hospital where he would likely be admitted.
What about daycare or school when he gets older? They have yet to figure that part out. Her son can’t be in a class with 28 other children and endless strains of germs. A minor cold for any other child could turn into a severe health risk for her son.
Date nights for her and her husband are a challenge. Stephanie’s mother and mother-in-law are two of the people that know the details of what it takes to care for her son, and what to do if something happens. Regular babysitters are not an option to take on this responsibility.
Alone time for Stephanie? Few and far between. Friends tell her that she should get out more. And yes, she agrees. But right now, circumstances do not allow that. The most supportive thing people can do is be compassionate, patient, and understanding of their unique situation.
When her friends have healthy babies, is she resentful of them? Absolutely not. She is happy for them, as anyone would be. Does she dream that her baby didn’t have this awful disease? Of course she does. Is she thankful for the little life she gave birth to regardless of his diagnosis? Yes!
Why does her son have Cystic Fibrosis? Unknown to them, both Stephanie and her husband were carriers of the CF gene, that was passed along to their son. It’s common that many people actually have this gene, and that’s fine. But it’s not as common that both parents carry it. And that is the reason why their son was born with Cystic Fibrosis.
Is there a cure for CF? No, as of now there is not. There have been many advances in medicine that have extended the lives of people living with CF. But currently, no cure exists.
Stephanie adores her son. While his diagnosis creates far more obstacles than most children face, it doesn’t change a mother’s love.
When you look at baby Paul, you honestly would not know he is living with Cystic Fibrosis. He is happy, adorable, and full of personality. He’s a fighter just like his mama. While he has no words yet (I mean he’s only seven months old), he proves that he’s one tough cookie as he goes through each obstacle that life has already given him. He smiles and laughs, despite the pricking, the medications, and all of the other things that babies his age shouldn’t have to experience.
What adversity do you face today? How will you choose to handle it? Will you be full of hope, and walk through these challenges with grace? May Stephanie be an inspiration for you to do exactly that. Because at the end of the day, some things in life are worth it, without question.
*Source: Cystic Fibrosis Foundation // www.cff.org
nana says
Jen,
As I read this beautifully written story about my daughter’s little family, and see the light, love and precious moments that you have captured, i am humbly appreciative of you sharing this story about the “everyday” life in the day of a CF mom and her child. As i read this, it took me back to that week 2, and the shocking news of Paul’s diagnosis. Watching my daughter and son in law, forge ahead thru everyday and the challenges each day present, gives me pride, joy, love and a complete gratefullness that our “little champ Paul” chose these two wonderful young people to be his parents. No day is an easy one, but as you said, Stephanie moves ahead with the flow and grace of a young mother madly in love with her son,and her husband, and the new dreams they are creating in a very different/difficult situation. it is with much gratitude that you have shared this story and hope it will help one person understand that you never know what someone else is going thru unless you are in there shoes. Share a smile, offer a helping hand and love each other….We all do!
Thank you for being a part of Stephanie’s life and walking this journey with her.
Jen says
Awwww you’re so sweet “Nana!” Thank you for the lovely words!! <3
Carol Stansbury says
I’m so blessed to have these kids in my life. I’ve known Zach since he was a young boy and its truly humbling to see how he’s become such a wonderful husband and father. His Dad would be so proud of him!
Thank you for writing such a beautiful story of this loving couple and Baby Paul! They’re a blessing in my life and I know God will keep his loving and protective hand around them.
Cheers, Carol
Stephanie Scott says
Thank you for your love and support Carol!
kathleen says
Hi – I am the mom of 3 children, 2 of whom have CF. both of my boys – one is 20 and our little guy is 9. I just want you to see that although the dx is terrifying and heartbreaking, there is life out there. We have never treated our boys any differently. I remember being petrified when it was time for our oldest to go to pre-k. I really did think it was the beginning of the end. that he was going to be sick ALL the time from the other kids. BUT I felt he deserved a regular life just like his big sister. Like I said , He is now 20 and he is a college junior living ON campus AND playing college level ice hockey. Our younger guy is 9 and also has a liver disease and life threatening food allergies. He is in 4th grade and plays baseball, foot hockey and LOVES life! It has been without its ups and downs but I guess my only advice is live your life and let him live his. Obviously when folks are sick, try and stay away from them. But go out to lunch with your friends, as he gets a little bigger, go to the mommy and me. Just practice good handwashing and wipes and hand gels will be your best friend. Congratulations on your beautiful baby boy and don’t forget – medical advances are happening right in front of us!
Stephanie Scott says
Thank you Kathleeen. I look forward to being released from the “sick plan” this summer! I have big dreams for our “champ” and I remain optimistic that a CURE is getting closer each day! Very inspiring to hear how well your boys are doing!
Stephanie Scott says
Rarely am I left speechless, but you did just that! I am humbled by your beautiful words and as always, your pictures always tell a story!
Thank you for your support and friendship!
Christine says
Jen,
You have done such a beautiful job of sharing Stephanie’s story. She and her family are absolutely AMAZING and I am inspired by her everyday! I appreciate you getting information out regarding Cystic Fibrosis and I hope that other families who have children with CF will comment on this blog to be a support to Stephanie, as so many questions and concerns will arise as Paul grows up. I am amazed at how well she is able to manage everything, especially as a first time mom. I know that we had both envisioned that I may be able to share with her my own personal experiences of motherhood and be a support to her as she was going through it, but I know that this hasn’t been the case as my experience is NOTHING related to hers (with the exception of us having beautiful babies who we love more than life itself). But even without being surrounded by people who know exactly what they’re going through, she and her husband are doing an amazing job with taking care of their precious son!
Although their face-to-face time together is limited, my daughter feels very emotionally connected to Paul and I know that they will grow up being lifelong friends (and maybe even marry each other one day!). Thank you, again, for sharing their story and your beautiful pictures! You truly capture the love that this family has for one another!
Stephanie Scott says
Thank you Christine! I love this bond that our little ones share, even if it’s mostly been through pictures, videos, and stories! I think it’s the start of a beautiful love story ;)
Tony Maduro says
Jana and I hope to be half of the parents you and your husband are Stephanie. Words cannot express the amount of respect and admiration I feel for you and your husband. I love seeing your daily posts of that little boy smiling. You have taught us all what selfless love truly is.
Stephanie Scott says
Tony,
Thank you for all the support you and Jana give me! I always enjoy the comments you leave on my Daily Paul pictures! I have no doubt when the time comes you two will make amazing parents to one lucky little baby!
Mary Gabriel says
Our daughter is 9. She has fought from day one. She has Cystic Fibrosis. If you ask her, she likes it… She tells us it makes her strong like a super hero… and that she is… Our super hero! We choose to live with CF, it throws us curve balls, but we fight. There is no other option. I look at these beautiful pictures and I think back to those times when she was so tiny and so very sick, there were many times CF nearly stole her from us. Those moments are hard to recall, not from a poor memory, but a fragile heart. Every CF journey is different, each one takes its own path with one major tie that binds them… strength. CF makes our little warriors strong and through that it teaches us mommas to be strong beyond measure. Many times it has been through my little girl that I have learned how to forge on, how to fight, how to live and to laugh and to smile through it all. Fight on momma, breathe on beautiful Paul… our cure is coming and we will all breathe easy soon!
Stephanie Scott says
Mary,
Your post gave me chills and brought tears to my eyes. We have a lot of HOPE but we also got off to a very rough start. (I detailed it a bit in my reply to John below).
Thank you for reading about our journey and taking the time to write such an eloquent reply!
We will never stop fighting for a cure!
John says
Hi Stephanie
I felt inclined to respond to you. I am a 28 year old male CFer. I will leave you with a post that I leave newly diagnosed parents. I think this will help you and show you that you can have a normal life even with CF. I tell people that CF is just a long for the ride in my life. Here it goes. This is from my blog site and I directed it towards a family with a daughter who has cf. It still can be applied to you as well.
Parents Accepting CF! My Response!!
I see a lot of new families dealing with the harsh reality of accepting these two letters, CF. There are a good amount I find on forums that start out with this statement “We just found out our son/daughter has CF!!! We are so scared and we feel like this is a death sentence. We are crying our eyes out. How will we ever deal with this disease” The sentences go on and on with sadness and worry.
There are many new diagnosed families who have never even heard these two letters “CF”. So I can understand that it’s going to be scary and full of the unknown. Sometimes I really wish when people are given the CF diagnosis it would come with not here our your sons’/daughter’s gene mutations and hang up the phone. I have honestly heard that this is how some people are informed of the diagnosis and this is AWFUL. I want there to be a better way of sharing this diagnosis to new families because that is not the correct way at all to reveal this disease. There needs to be the “correct” people to reveal this diagnosis. I believe the correct way to do this is through a pulmonary specialist and also a counselor of some sort. These individuals can share the knowledge they have through their profession to give some guidance on what to expect next and to reassure them that their son/daughter will be fine.
But until these things start happening I will be trying to put a positive spin on this disease as much as I can. So I come to forums to help these newly diagnosed families. Eventually, I will be branching this out even further of ways to help newly diagnosed families. I am not sure of how I will be doing this but I have a few ideas. The first one is I want to hold a “CF education day” at my clinic and have CFers come and share their journeys with anyone who wants to listen. This hopefully will paint a picture to some newly diagnosed families. But until then I will try to help as much as I can on forums and social media.
So here is one of my latest replies to a newly diagnosed CF family.
My husband and I just found out our little girl of 6 weeks has CF. We are trying to deal with it. I feel so angry and so heart broken for her. People keep sayin “don’t worry she will grow out of it” or “just drink aloe juice, it cured my friends CF”. How do you guys deal with ppls ignorance?? I know they mean well… but it takes all my strength not to scream at them.
Hi momma!
CONGRATULATIONS on that little baby girl!! I think the feelings that you are dealing with are very normal when it comes to newly diagnosed CF parents. I assume you have never heard the two letters “CF”? Most parents of newly diagnosed children have never ever heard those two letters. This can be scary but the world of CF that we live in doesn’t have to be that way at all.
Let me ask you did you Google CF like any other person would? I assume you found a bunch of negative information about how awful this disease is and how devastating it can be. The key here is yes it can be this and it can be that but it really doesn’t have to be all that bad and negative.
The world is full of ignorant people and not just to CF so always keep that in the back of your mind. Most people have never even heard of CF and they make assumptions of what is. I was once told oh is CF that disease that impacts your muscles and nerves? Uhm no that is a totally different disease. So what did I do I started to educate this person on CF. This really allowed me to share my disease and the person that it has made me become.
But when these people come along who are being ignorant it is your opportunity to educate them about CF. WE need to take advantage of these opportunities to spread awareness and put the correct information out there to the public. Try to put a POSITIVE spin on this disease. Tell them how amazing your daughter truly is and how this disease has shaped you and her for the better. The more people who know about CF and have a general idea of what CF is, the better our world will be for everyone with this disease.
I also want you to understand that putting your daughter’s health first is the main priority right now. You are setting the FOUNDATION for your daughter at an early age with this disease. Try to be as compliant as possible when it comes to airway clearance, taking all the medicines, and attending doctor appointments. This will pay dividends for her health in the years to come. She will thank you not right away but when she is older and can understand how much of a POSITIVE influence you have been in her life.
But you have to also remember she is a “normal” child. She will go to school, she will have a bunch of friends, she will be just as active as any other child who doesn’t have a disease. Your daughter will view CF as you view CF. If you paint CF as a dark and scary picture she will as well. You have to try and show her that CF is a part of her life and your life but paint a picture that things will be ok and she will follow this lead as well.
There are so many POSITVE stories out there momma about people who are living out their dreams with this disease. Those are the people you need to find in this community. The more POSITIVE people you surround yourself and your daughter with the better you will feel about this disease. You will find that the people who truly care about you and your daughter will show the greatest support for you.
I know many fibros and cysters who are living normal “healthy”lives with this disease. I for one feel I am in that boat. I have had many dreams come true. I have a loving wife, I have a little baby girl, I have graduated college, I have a career, the list goes on and on. So what I want you to do is see this disease as something that will shape your daughter into a STRONGER person. She will go on to achieve many things in life just like every one else. She has the potential to be GREAT just like every one else does every time they get out of bed in the morning! CF will never define who we are. WE define who we are!!
I would love to answer any questions you may have. Please do not hesitate to ask anything. I will respond to you on here or you can visit my blog.
Another good post for you would be this one.
http://livingmydreamswithcf.blogspot.com/2013/07/q-from-newly-diagnosed-parent.html
Talk soon
John
http://livingmydreamswithcf.blogspot.com/
Stephanie Scott says
Thanks so much John! Your story is inspiring and exactly what I hope for my son! The reality is that no every CF’er is as lucky and healthy as you, but our goal is for Paul to beat the odds and live a long and healthy life! This blog wasn’t the right forum, but we got off to a VERY rough start! We had major clinic issues, PA that went undiagnosed until we switched clinics. His first positive PA culture was at only 8 weeks old. He had his first bronc at 3 months. He didn’t respond to Tobi and Cayston and oral meds so we ended up needing to admit him for a PICC line and IV antibiotics when he was 4 months. We have only ever had 1 clean culture :( After the IV meds the PA was gone, but over the course of a few more cultures streno has come up and has c-diff and of course he his highly symptomatic! He is at an AMAZING clinic now (Miller Children’s in Long Beach) and they have really taken my son under their wing… they have become part of our family! Since his diagnosis at 2 weeks we are still on the clinic visits every 2 week plan because he is still on the “sick plan.” I am really hoping after cold and flu season we can start exposing him to more things, but right now the risks far outweigh the rewards. Of course the initial diagnosis was a horrible shock, but I have an amazing husband and we have wonderful parents, friends, and family who have been a constant source of support.
Thanks again for sharing your personal experience and perspective. I LOVE positive stories!
Becky Shaw says
Stephanie,
I just read your story, and you are truly an amazing Woman and Mother!! You and your husband both!!
I look forward to seeing your post about Baby Paul everyday!!
Your story is truly inspiring!!
Stephanie Scott says
Thanks so much Becky! I am glad you enjoy my daily posts :)