Monday, March 24, 2014

CF Community Interview - Maria (Spouse)

In the cystic fibrosis community we always read the number 30,000 people are battling this disease (United States CF population) or 70,000 worldwide, but there are so many others who are also battling this disease. The people who often get overlooked when it comes to CF are the spouses (boyfriend/girlfriend or fiance), the parents to the CFer, the brothers/sisters to the CFer, the doctors, the nurses, and the researchers.  In all reality, this disease impacts directly and indirectly way more than the 70,000 people who are diagnosed with cystic fibrosis.  That number is well into the hundreds of thousands just by my rough guess.

Today, our first interview focuses on one of those overlooked or forgotten people in the CF community. It takes a special person to be married to a CFer and many of us know that.  But what I like to call a woman married to CFer is an Army Wife! They are there for their CF warrior every step of the way, through the tough times and the greatest times.  The CF Army Wife knows their spouse is fighting a living battle every day they get out of bed and shows more support than truly anyone else on this planet.

What better way to kick off this interview series than a beautiful lady! She not only is beautiful on the outside but truly has one of the biggest caring hearts I have ever met.  She is the most gorgeous woman I have ever laid eyes on, she is the mother to our miracle daughter Alayna, she keeps me SANE, she puts up with my RIDICULOUSNESS,  she would do anything for our family, I could keep going but I think I will cut it here.

Please welcome my beyond beautiful wife Maria as she explains what it's like to be a spouse to ME, a CFer!

Name :  Maria

Age:   29

What do you remember from the day you found out your spouse had cystic fibrosis?

When I found out that you had Cf, I was 16 years old. I was sitting on the phone with you in my parents kitchen and all of sudden he said out of the middle of no where that you had CF. I had no idea what it was. You explained it to me without a worry in your voice. My heart sunk when I realized that you may not be here one day. I got off the phone and cried and from that point on, all i wanted to do was give you the best life you could ever dream of.

How did you view life after you found out your spouse had cystic fibrosis? 

My life as a 16 year old no longer existed but i grew into a mature adult. I didn’t want to do the typical teenage activities. All I wanted to do from that day forward was to be with the one I love every second of the day. In a way, finding you had cf was a blessing because I could have been just like others we know who partied their life away and still do that today without any accomplishments. Cystic Fibrosis made me grow into the woman I am today. Together we graduated high school, graduated college, got married, and had a beautiful daughter. I live each day as if there was no tomorrow. My main goal in life is to keep you healthy and give you every opportunity to live every dream .

In your words what does it mean to be a spouse to a CFer? 

Being a spouse to a person with cf is very challenging because i want to help you live a long healthy life. So for me ,it means to protect you from things that can hinder your health but also give you the love and support to help you fight Cf. Being a spouse with cf means to be the love and encouragement to make you want to fight this disease. If I give you a life worth living then I know you will fight to want to live it with your family.

What is your biggest struggle when it comes to accepting your spouse has cystic fibrosis? 

This biggest struggle is that one day you might not be here with Alayna and I. Secondly, one of the hardest things is that I am not good enough for you. I am afraid to make mistakes where I didn’t protect you enough and you got sick. I love you and I never want to lose you. You are one of my favorite people in the world besides my daughter. There would be no life for me with out you. So the hardest part is knowing that you might not be here.

What has being married to someone with cystic fibrosis taught you about your own life? 

 To live each day as if there is no tomorrow.

Explain what it’s like to be married to ME (include anything you want it’s your opportunity to spill whatever you want about me : ) ? 

 It is wonderful being married to you! Life never gets boring for one thing. I don’t think there has been a day where we have ever got bored of each other. I love you from the time you are singing in the morning to the end of the day when your tiredness catches up with you and your crankiness comes out . You are the best father in the world. You make us all laugh with your crazy dance moves. I can tell you one thing, i know my daughter is going to be just like you which is trouble. She thinks she is beautiful. It is funny to see you both at the mirror and tell each other that you are beauty queens. Being married to you is like being married to your best friend. It never gets old but gets better as time goes on. I can’t wait to spend the rest of my life with you!

As we all know you went through some very tough times through our fertility journey. What did this journey teach you about your life, your life as a couple, and your commitment to your dreams?

I have learned that our love is the strongest entity in this world. Without the love from john, i don’t think i could of got through invitro or my birth. Knowing that my husbands suffers every day with cf gave the motivation to be just as strong. This journey taught me that our love defeats any challagenes that are thrown at us. Invitro has taught me to be selfish and to never give up because dreams do come true as long as you don’t give up no matter what you have to go through.

Since we have our little miracle in Alayna, how do you feel we should approach telling Alayna about my battle with cystic fibrosis? 

This will be very hard, but i know we will be honest and answer any questions she has. At this point in time i don’t think about telling Alayna until she can comprehend what cf is and how it affects her daddy. Right now i want her to enjoy her daddy without any worries.

I have found that there are a good amount of CFers who are worried to tell their boyfriend/girlfriend they have cystic fibrosis. As a spouse to a CFer what advice would you give to a CFer who is afraid to disclose they have cystic fibrosis in a future relationship? 

 No one should ever hide who they are. tell them when your comfortable and if they can’t accept it then they don’t deserve you anyways..

If there is anything else you would like to share feel free to……. 

I love you John for all that you are. I wouldn't have you any other way. Cf made you the person you are today. God knew that you would embrace life and make the best of it. You are kind, sincere, and most of all loving. Though you have this disease, you never act like there is no tomorrow. You are the strongest person i know. You always hold your head up high and never give up. You are my true inspiration. Love you

John's Comments: 

The answers to these questions truly were not influenced by me! I mean I didn't tell Maria what to write or not to write. I am also surprised she was way way to kind on me. Trust me, I am not a perfect person.  She could have spilled some dirt about me!!!

Just reading the answers to the questions brought back some memories for me as I recall telling Maria that day I had cystic fibrosis.  At that time, I was maybe not even 16 years old yet and only was officially diagnosed at 12 years old.  CF was pretty new to me even back then.  I think, I played approaching CF with Maria safely over the phone.  Yes, for all you younger folks out there I actually talked on the phone not texting.  We didn't even have texting back then.  I just put it out there hey I am going to go and do my vest or something to that nature.  Basically, like it was just a part of who I am! I just knew from that day forward that Maria was going to be able to handle my CF.  Her reaction to me telling her about cystic fibrosis was just oh ok. I know she asked what it was and I gave her the scoop.  There was no concern in her voice at least that I could hear! I just knew that this woman even though we were in high school was going to be there by my side every step of the way.  It looks like that has been the case and I wouldn't change a thing about it.  

When Maria says that her biggest fear is I will not be here for our daughter Alayna or her just really emphasizes the CF Army Wife title.  For all those who serve this country proud there is always that spouse or Army Wife waiting for their man to come home.  I know Maria does think about this but I also know it doesn't consume her life.  I can tell that by reading her statement about living each day as if there were no tomorrows.  I will tell you that every night when I go to bed I do not have one single regret about OUR life! 

I have learned so much about life having Maria by my side through everything.  Here is just a short list of the things we have accomplished in spite of CF. I like to call it CF is just a long for the ride when it comes to our life.  We have graduated high school together, graduated college together, I married my high school sweetheart, we bought a house together, we went through a roller coaster ride battling infertility, we successfully created a family with the miracle birth of our daughter Alayna.  

I just cannot put it all into words what it means to have Maria in my life.  I am truly one of the luckiest individuals ever to walk on this planet.   She has shown me that if you believe in something so much that your dreams will come true.  I witnessed this first hand when it came to our infertility battles.  This battle brought us even closer in our relationship and marriage. 

If it was not for Maria, I truly do not think I would be the man I am today. I know CF has taught us a lot about life but if I didn't have this strong presence in life in Maria I know that I would not be the person I am today.  THANK YOU from the bottom of my heart for loving me each and every day as the person I am!

Thank you for reading the first interview in this blogger interview series. I hope you found it as useful and enjoyable as I did.  This interview series will showcase many of the individuals who are battling CF and who are a part of the community.  I would like for anyone who is a spouse (boyfriend/girlfriend) to a CFer, parent to a CFer, or a CFer themselves to please reach out to me and let me send you interview questions.  Anyone who participates in this will receive their very own blog post just like Maria did here.  We will bring so much more awareness sharing our stories!  Please send me an email jtodog23(use the @ sign)  Here is the link to the blogger interview series post.


  1. Thank you, this is a very heart warming story I wish you all the very best . Mom of a 17yr old CFer

    1. Thank you for reading and leaving a comment! I wish you and your family nothing but the best as well!!

  2. Maria, your words are insightful as they illustrate your love for John and your strength of character. Spouses and significant others of CF'ers are a loving group. Sometimes they can be the unspoken heroes of CF, but not in my book! The world is blessed you & John can share your love with Alayna! You're a beautiful family :)
    Cousin, Anne

  3. Thanks for sharing your story! About a year ago my boyfriend told me that he has CF. It is very very scary to read that CF is a life shortening genetic condition, but It's important to remember that each case is different. I try my hardest to take the best care of him to make sure he is doing his treatments, as sometimes he needs encouraging, and to make sure he has enough calories. Unfortunately he is not one of the few who is fertile so we are investigating treatment options.