Meet Susie...

My name is Susie, and I've been a CF Spouse for 14 years.  Brad and I met in college. We started out as friends.  He was the type of guy who said, “I'm never getting married or having kids.” (I obviously changed his mind on getting married!)  After getting to know him a little better, he told me he had a disease called Cystic Fibrosis.   I had never heard of it before.  He told me a little bit about it, and I researched even more to see what I could find.   A year later we started dating.  When I say dating we didn't really go out and do a lot because Brad is a very studious person.  In fact, I probably made better grades because he studied so much, which meant I studied too. After about 6 months of dating I went with Brad to a CF appointment at St. Louis University Hospital.  The doctors talked to me briefly about CF and that they had known Brad for a while because he was diagnosed at 3 years of age.  They told me that he had the worst gene, Delta F508.  They believed he was a miracle because he was doing pretty well.  It was great he was doing so well because after we got married he told me he didn't do his medicine very often growing up or in college.   Brad and I rarely talked about marriage while we were dating.   After 2 years of dating Brad proposed to me.  We graduated college, and the next month we got married.  I thought I knew what I was getting into marrying a person with CF, but we have had some struggles in our marriage.

              I knew before I got married that Brad had a 99% chance of not being able to have kids.   He wanted me to know that very early in our relationship.  I try to be strong in my faith and thought if it was meant to be then it would happen.  Here we are 14 years later and no kids.  (We do have 2 absolutely amazing dogs that we adore.) I am not willing to go thousands of dollars in debt for a child.  Why?  Because we already have debt and children cost money to feed and clothe,  etc…on top of what you are paying to have the child.  I have found out it costs more to have kids if you can't have one naturally.   Please know that I don't judge anyone that goes in debt for a child.  I think it is each couples personal decision. (I stress out about money a lot.) Since I turned 30 (Now I am almost 37), I have struggled most days not being a mother, but there are certain occasions that it just hurts.  Some of those occasions are new things Brad and I get to try, baby showers, and the hardest of all is Mother’s Day.   I'm not normally an emotional person but Mother’s Day really gets to me.  We know all our options to have a child  and the majority of them cost a good chunk of money.  One day I would love to hear the words I love you mommy, but I'm not sure I ever will.  This subject as a CF spouse can be such an emotional roller coaster.

             Another struggle is money.  We didn't have money issues until after about 7 years of marriage.  Brad had gotten his master's degree and worked at a private school teaching and then the next year he was a principal and coached at the same private school.  (I was making more money than him teaching at a public school without my masters.)  After a few years of that he got tired of the politics of school and there was no insurance or benefits. We paid for private insurance through a health insurance pool because we were having trouble finding someone to cover pre-existing conditions when he started at the school.  His next job move was to go into being a car salesman.   The first month he did well, but then after that it went downhill.  If you don't sell cars your pay is horrible.  We couldn’t pay all our bills and Brad went without medicine, we maxed out all our credit cards.  We started selling and pawning stuff we owned just to buy milk.  I remember tearing up at the checkout line thinking we had enough money to buy milk and bread and that was it.  This was a very low point in our marriage.  Thankfully I can tell you now that even though we are still in debt, we are slowly crawling our way out of it.   As my mom would say you didn't get in debt in a day you won't get out of it in a day.  

             Another struggle we have had is on top of Brad’s CF, asthma, and allergies we found out in April of 2013 that Brad has CF-related Diabetes.  Brad had lost a lot of weight.  He is 6’2 and had gotten down to 118 lbs.  His cheeks were sunken in and he knew something was wrong and his body was shutting down.   Our hospital is 3 ½ hours away.  He stayed a week in the hospital and then Brad added insulin to his list of medicines.  I know Brad feels like he gets dumped on with different medical things.  To do his treatments for CF and to keep up with his insulin, to gain weight, sometimes he feels is too much. (If I could give him some of my fat, I totally would!)   He has gone through phases where he does really well keeping up with his breathing treatments but not his insulin.  Then he will keep up with his insulin and not his breathing treatments.  We have had conversations of he has to want to do it and has to want to live.   I try to tell him he is blessed that he can still work a full time job, be around other people, and not have to carry around oxygen.   I know I don't fully understand what he goes through because I am not in his situation. I feel like I am a pretty strong gal most of the time, but some of these struggles can really get you down and people can say they understand, but they don't unless they have been through it.  I have tried to live my life with positive expectancy.  It can always be worse.  I also know that I am human and it isn’t always easy to be positive, but I feel it helps me get through some tough times.  

             I am so proud of my husband.  He graduated college with a double major.  He received his Master’s degree with distinction.  He has a full time job and teaches 2 college classes on top of that.  He works so hard and I am so thankful for that. I always tell him he is a true testimony when he is down on himself.  We are so blessed in that we have supporting families.  Our relationship has only gotten stronger through every trial we face.  We face it head on and Brad knows I will be beside him every step of the way.  We are lucky that we have each other.  Brad has shown me what a fighter is and he has determination most days.  I love this man and am so glad God brought him into my life.  He truly is an amazing person.

   I know every CF Spouse has a different story, but I hope you found some things relatable.   

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