Cystic Fibrosis Podcast 224: Being a CF Mom and Working Full Time

Cystic Fibrosis Podcast 224: Being a CF Mom and Working Full Time

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In the latest Jerry Cahill CF Podcast, Sara Pulkovski shares what it’s like to be a mom to three daughters – two of whom who have cystic fibrosis. She discusses her initial reaction to their diagnoses, how difficult is was to go through the post-partem period after, and how her family’s life shifted. As a mom, she tries her best to make sure all of her daughters get equal love and attention and is constantly working with her husband to create their own new normal.

Tune in to learn more about Sara’s life a CF mom.

This video podcast was made possible through an unrestricted educational grant from The Allergan Foundation to the Boomer Esiason Foundation.

the views expressed on the Jerry Cahill CF podcast are that of Jerry Cahill and guests and not necessarily those of the Boomer Esiason foundation nothing on the Jerry Cahill CF podcast should be considered medical advice such advice can only be given by a physician who is experienced with cystic fibrosis the Boomer Esiason Foundation Jerry Cahill and guests cannot be held responsible for any damage which may result from using the information on his podcast without the permission of your medical doctor you're listening to the Jerry Cahill CF podcast presented by the Boomer Esiason foundation and Jerry Kegel calm welcome to Jerry Cahill's living breathe and succeeding podcast series this show being a CF mom of three daughters and having a full time job was made possible through an unrestricted educational grant from the allergen foundation to the Boomer Esiason foundation today we'll meet Sarah pool cough ski from Michigan who works a full-time job as a supervisor at Home Depot for over eighteen years and is happily married to her husband Bill for over 16 years Sarah and bill of the proud parents of three daughters Annabelle 13 Sofia 11 with CF and hoped-for with CF Sarah enjoy spending time with her family kayaking traveling and going to the movies Sarah talks about what it's like having a full time job being a CF mom and explaining to her children what CF is and why they have it hi I'm Sarah Pope of ski I'm from Clinton Township Michigan I've lived in the Metro Detroit area my entire life I have three daughters two of which have cystic fibrosis and I've been married to my husband Bill for 16 years we love to do things together as a family though up north play games just be together go to the movies recently is in the past few years we've taken up kayaking as a family as well I have two daughters with cystic fibrosis Sophia who is almost 12 was diagnosed at 22 months old and hope who was 4 years old was diagnosed shortly after birth because we were aware of her sister's diagnosis and there were signs and my pregnancy as well indicating that she may have cystic fibrosis the first thought as a parent I'm freaked out I was upset and you know you feel your world just Haven on you I tried to keep a positive head knowing of advancements that were being made that it wasn't the same diagnosis that my cousin had just based on his age and knowing his generation of CF patients we've made leaps and bounds and I knew it wasn't the same situation that we would be facing I did do my fair share of research I was told do not Google stay off of just random sites and stayed with the facts and was given specific websites to do my research it took us a long time to come to terms with the possibility of having another child with cystic fibrosis and ultimately that's what we were given you know I've never had a newborn that had this diagnosis so I was in new waters again so again as a new mom postpartum and just dealing with that diagnosis it was very hard telling me I have to give my infant my newborn applesauce to give her enzymes you don't feed a baby you know it wasn't natural to me but she opened her mouth like a little bird and the rest is history you know she's four years old and absolutely thriving life changes yes absolutely when you have children and then when CF was introduced we didn't change our lives we still go and do things and have fun we often bring treatments with us we have a plug in the car we can do nebulizers we have you know ways of doing treatments on the go and we try to keep our kids and the experiences and not have to sit on the sidelines just because they have to do treatments creating a normal life has always I think a little bit of a struggle we tried to do special things for Annabelle our oldest because we do give a lot of attention to the girls my husband and I do something we do date nights with the girls so one of us will take just one kid we'll go out to dinner we'll go somewhere fun that they want to go to could be very simple you want to go out for sushi and go walk around the pet store if that's what that child wants to do we'll make that happen simple things when it comes to cystic fibrosis hope is aware that she has it and mentions that often Sophia knows more about it obviously she's a little older and she's presented me with a few more questions you know I think she hears or sees things and she's a little bit curious but hope you know she's aware sometimes at the dinner table I'll look over at her and realize she's just sitting there and waiting because nobody gave her enzymes yet and she knows that she needs them and she'll sit there and wait quietly before she even says anything to us Sophia this year you know starting middle school we gave her more independence and she's been able to self-medicate which has been awesome but occasionally she'll get the questions asked like why you're taking pills and she'll stop and explain you know I have to take them in order to eat it helps me digest my food it's extremely nerve-wracking sending any child off to school I give a detailed packet of what cystic fibrosis is and how it can impact the child at school every year at the beginning of the year I make my packets and I deliver them to maybe a homeroom teacher the office I want people to be educated about cystic fibrosis if you go to CF f org there's packets that you can print for your teacher for your school or whatever even I think in the workplace they have one two so you can educate other people about cystic fibrosis and how they can help you I always worry like if if we're going to enter a rebellious phase I know a typical teenager can be rebellious about basic things and I know these are bigger things and more impactful and mean a lot to her and it always worries me that she's gonna protest doing treatments and not want to be different anymore but we try to constantly remind her what an impact on her health it be we can't have a motto in our house where we just it's not an option we have to do these things if you want to be able to do the fun things we want a vacation if we want to just do a certain activity we have to do our treatments first or we have to take this medication there's just there's no other way about it I feel protective over all my kids but my husband definitely says I tend a baby especially Sophia a little bit I try not to I tried to stay very aware of that and I guess give it to them equally recently Annabelle was a little bit ill and I was babying her a lot and I asked her I said does this feel good you know is this something that you're missing out on do I not do this enough to you and she kind of like nodded he said well you know you just need to tell me when you need this from it's it's here I don't mean to to only do that to your sisters with having two children with cystic fibrosis obviously cross-contamination comes up we do get asked that question a lot we just you can't stop living life so we can I have a loose rule of please don't drink after each other sometimes we share the same cough all around the house it happens just like a normal household we never separated our kids or lived life differently Sophia and Hope have quite a special bond together and help each other with treatments and often cuddle together and do treatments together my support team is my husband making him aware when I need something when I need to just step away or go do something for myself or do something special with him and then my extended family my parents my sister my mother-in-law my sister-in-law everybody lends a helping hand whether it be providing childcare or offering to come to appointments with us or just any Avenue like that and me listening and listening for them offering the hell I have learned to in the past several years the people that always offer the help I've started taking the help I've always wanted to be in control and I'm starting to allow others to help me which was a big step for me immediately during both their diagnosis you you always have that life expectancy number in your head and just knowing that that's always a fear but I tend to fear it a lot less now with the advancements that have been made the medications that my kids are taking and just their overall health I don't think that that's going to be their fate I think it's going to go far beyond that they're constantly making advancements in the CF community that have come leaps and bounds since our first diagnosis ten years ago it's it's a different disease and it's a different disease than my cousin's diagnosis and it's forever advancing

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