CF and Children

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Naydib

Guest
Hello,

I am 25 yrs. old and I have been thinking of weather I should or should not have children. I want some input on how it is like raising children while also fighting Cystic Fibrosis. Although I definitely want children, I don't want to feel like I'm being selfish. My main concern is not having the energy or getting too sick at some point where I wont be able to care for my child as I should or would like to. My boyfriend and I have talked about it several times and he is always very supportive. He tells me that if I want children we'll make it happen even if we have to adopt, and if I decide I don't want children he is ok with that as well. I am still healthy enough to do anything, I have a full time job in healthcare and for the most part I feel good, but when I get sick all I want to do is lay in bed, I fell tired and beat and the non-stop coughing makes my body feel like my house just crumbled on top of me. That is what worries me the most. How have you mothers or fathers with Cystic Fibrosis managed parenthood? would love everyone's input and advice.
 
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RobinB29

New member
I have two sons, ages 10 and 4 and two stepsons ages 11 and 10. With four boys I am on the go nonstop. I remember when I had my first son I felt guilty just holding him because I loved him so much and I was so afraid having a mother with CF would just hurt him and like i'd never be good enough. Those feelings passed and one day in Kindergarten he brought me home a Mother's Day card that said "My mommy is a Goddess. She is brave through many sickness." My having CF can make life a bit crazy but my boys have compassion and value life in ways they probably wouldn't otherwise. When i'm in the hospital their father is home with them or they visit grandparents so largely, it doesnt effect them too much lifestyle wise. I do tend to push myself hard in the summer with play dates and activities and usually need a tune up come fall, but largely thats a result of the Celiac on top of CF which makes weight gain hard. Growing up I felt this desperate need to make a big difference in the world, accomplish something big before I ran out of time. My first child was a surprise and over the years I realized that making my sons good men who will each go on to do good things and raise their children to do the same, thats a pretty big thing.
 
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imported_Momto2

New member
I have two daughters, ages 13 and 9. We decided to adopt when I was 30 since if I was going to become a mom, I wanted to do it in a way that would be the easiest on my body, therefore enhancing longevity. First, make sure your partner is on board 200%. Mommyhood is hard, and with CF, it's even harder when your not feeling optimal. Be prepared to make extremely hard choices. Even though it is NOT in your best interest to keep getting up during the night for an infant or toddler when your're sick as a dog, its going to happen. My favorite scene was this- My husband and older daughter, 4, were both down with the puking flu and totally incapacitated. Its 2 am and my home IV infiltrates and I need to trot to the ER pronto. What do I do with the 3 month old baby? Stuff like that! (I took her with me and the darling slept for 4 hours through the new IV, what a gem!) Anyhow, I started parenthood with my FEV being 85%. By the time both the kids were in school, it was down to 60%. I put the kids ahead of myself too often and my health suffered. I had told myself I wouldnt do that, but you just cant help yourself when your child needs you. Anyhow, the short answer is, I wouldnt change anything, but make sure you have plenty of family support and be smart regarding your own health. :) PS If your partners job is flexible, all the better!
 
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Naydib

Guest
RobinB29 Thank you so much for that story, made me smile. My boyfriend and I made the decision and are currently trying to conceive. we are both very excited yet I'm incredibly scared at the same time. How was pregnancy for you? I'm so scared to hurt the baby with all the treatments and medication, and Specially all the coughing I do. My lung function is on 85% right now and I feel strong. But for some reason I cough soo much. I'm scared throughout the pregnancy all the coughing could hurt the baby.... Is it normal for my to have all these anxieties?
 
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Naydib

Guest
imported_Momto2 Thank you for your advice. Yes my partner is definitely 200% on board, which helped me come to the decision of having kids. Right now we are trying to conceive. I hope it doesn't take too long. But same as you, My lung function is currently 85% and I'm 25 years old. I know my health will suffer from having children but I cannot imagine leaving this world without anything to show for my existence. I have so much family and we are all so close that I know I will have the help and support I will need to make my child into an extraordinary human being. Right now I just worry about so many things that can go wrong that my excitement is mixed with fear. I'm I the only one going through all this emotions? I so scared that something could go wrong with the baby or that I could hurt him/her with all the medications or my constant cough...
 
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Gammaw

Super Moderator
Naydib. Let me offer a bit of my simple minded thoughts. I see so many occasions where people try to manipulate or predict their future in ways that are just not, shall we say, reliable. And they worry so about their decisions. The absolute truth is that no matter which you choose - physically having your own baby or adopting - the soul that is brought to you will be loved and you will be loved in return. Even the healthy new parent lives in an unpredictable world. Accidents, illness, disease, as well as good fortune, joy, breakthroughs and blessings. No one can manipulate and predict their future. Have confidence in your decisions and enjoy! If I see any recurrent theme in these forums, it's the appreciation for living every day, one day at a time. Please try to not let worry consume you. Worry changes nothing but the amount of joy you can get from a day. Best of luck!
 
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imported_Momto2

New member
Gammaw, well said! Naydib, I'm not really a religious person, but at some point, you just gotta have some faith that if you do your best and try to make smart choices, it will be OK. Have a family and enjoy them!!!!!!!!!!!!!!!!!!
 
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