Dear new mom,
You have probably found this blog because you were searching information about cystic fibrosis, or you saw the title in your Facebook feed & felt compelled to read more.
New mom, I know you just received the most devastating news...your perfect & precious newborn baby has a disease called cystic fibrosis. I can tell you that it sucks. It's definitely the single most terrifying feeling you've ever felt in your life thus far. I can tell you this because I was you. A little over 8 years ago, I was a new mom that received the same devastating news you just received. 8 years ago my whole life changed just as yours did today.
I first want you to know that your baby is still perfect. Your immediate love for one another is no less than if cystic fibrosis wasn't there. Your best days are still yet to come.
There are also some things I want you to know about being a mom to a child with cystic fibrosis. I sure wish I had this blog to turn to when my sweet babygirl was born. In 8+ years I have learned a thing or two, that can hopefully help another CF mom.
#1.) Your life will never be the same.
You brought a life into this world, so this first one would be here regardless, CF or not. Becoming a mom changes the person you are whether you are ready or not, even if you plan so much to be the same ol' you. You are responsible for another life now. Your dreams still exist but now your dreams have little dreams as well. You will start doing everything with your child in mind. Your days will be revolved around schedules & routines. You will be exhausted. You will rethink your life choices. You will feel defeated at times. But guess what? The love for your baby will outweigh it all.
#2.) Exhaustion will become your new normal.
Remember that time you worked all day and came home to a messy house? You did laundry, fixed dinner, cleaned it up, and then got in your bed so tired you thought you could sleep for a week straight? You will learn very quickly that being an exhausted mom is a whole new level of exhaustion. Somehow you manage and after a while, being tired is just expected. And again, the love you have for your baby will overcome the exhaustion and you will have found that you made it through another day.
#3.) Take the help.
You will start noticing that at the end of every conversation, "if you need anything, let me know" will almost always be there. Take the help! The people who say this... mean it. Believe it or not, people who care for you, want to help you. Whether it be your mom or in-laws. A best friend or a friend you haven't seen in a while. When someone tells you they will come over and help you do laundry, they will. When they offer to sit with the baby while you take a 30 power nap, take the offer. You will be a better mom for your child if you allow yourself breaks.
#4.) Make a routine & stick to it.
Because of CF, your child will have some different things to do on a daily basis than that of a normal child. There will be medications that need to be taken at certain times, airway clearance therapy & breathing treatments to be done through the day, and possible tube feeds if your child isn't gaining weight because of CF. Establishing a routine is key to do everything that needs to be done each day. Stick to the routine that works best for your family. Just make sure you aren't skipping medications, treatments and feedings. A person with CF needs daily maintenance to stay healthy. Slacking off not only hurts them, but teaches them to not take their CF responsibilities seriously.
#5.) Make CF maintenance time positive.
You & your child will be spending a lot of time doing CF related things. Your child will most likely have an airway clearance vest that they do 2-3 times a day for 20-30 minutes each session. Making this a positive experience for them makes it so much easier. Let them play with something engaging while doing their treatment so that it can pass the time faster. Don't ever let not doing a treatment be a reward. For example: "you did so good today helping me with the laundry, how about we skip your vest tonight." Making them think treatments and medications are a form of punishment is the wrong way to go about it. Always treat CF upkeep times positive and it will show your child that it's just apart of their routine, just like bushing their teeth and putting their dishes in the sink.
#6.) People will say the wrong things. Just inform them & move along.
Because people aren't familiar with cystic fibrosis, you will find yourself explaining it a lot. Some times people will catch you off guard with HOW they ask you. No matter how offended or dumbfounded you are by questions, just inform them & move along. The best answers you can give are the ones that allow them some awareness of the disease. "Will she grow out of it?" -- that's one of the worst questions for me to get... Because no, unfortunately no matter what, she won't. I think people ask this because if your answer is that they can grow out of it, such as having a pacifier or pooping in their pants, than they think they are giving us something to look forward to. Another question I've received is, "Isn't cystic fibrosis the one where they don't live long?" I'm honestly not even sure how I answered that one but I did. And thank goodness my daughter wasn't standing with me for that one. I'm sure you'll get a few variations of questions like those, but my advice is to just speak the truth, spread some CF awareness and continue your day being a supermom.
#7.) You will take on more roles than just "mom" when you have a child with CF.
When you're pregnant, your mind prepares you to become a mommy. It's called maternal instinct. When you become a mom to a child with CF you also take on the roles of nurse, therapist, nutrientist, dietitian, teacher....among others. Be prepared to hook tubes up to your child's stomach so the high calorie formula can give them the extra nutrients they need to gain weight. Be ready for nebulizers, inhalers, airway clearance machines, overnight feeding pumps, PICC lines, syringes, and oxygen masks. When your child breaks down and asks why they have do go through it all, be prepared to sit down and explain it the best you can for their age level. At times you will feel like you aren't qualified for these roles. Always remember you will have a CF team that you can look to for help.
#8.) Stay close with your friends. They keep you sane.
Having girlfriends to talk to helps in any situation. This one will be no different. Your life may be a little different than theirs but talking/venting/crying helps. The best ones will understand & be sure to listen and be there. It's always good for the soul to spend a few hours with your friends when you get the chance. It allows you to remember that you are still you & deserve time to unwind.
#9.) Some days will be better than others.
Cystic fibrosis takes everyone involved, on a roller coaster ride daily. Some days your child will be healthy with no signs of cystic fibrosis and other days the disease will show its nasty self without any signs or warnings. Be prepared for the ups and downs of this roller coaster you are now on. You have to be strong for not only yourself, but for your little one who doesn't understand. Your alls strength will help each other through.
#10.) It's okay to cry. Just make sure that afterwards, you are ready to kick CF's butt.
You will first be in denial for a while. After denial, you'll feel sadness that you've never felt before. After that you'll feel angry. SO angry. After many feelings, you will start to feel a sense of strength knowing that although genetics gave your child this disease, you will do anything in your power to make this okay. And even during these times of strength you will break down. It's okay. Just remember, your best days are still yet to come.
With love,
The mom who feels your pain but knows your strength.
You got this.
We got this. 💜
You have probably found this blog because you were searching information about cystic fibrosis, or you saw the title in your Facebook feed & felt compelled to read more.
New mom, I know you just received the most devastating news...your perfect & precious newborn baby has a disease called cystic fibrosis. I can tell you that it sucks. It's definitely the single most terrifying feeling you've ever felt in your life thus far. I can tell you this because I was you. A little over 8 years ago, I was a new mom that received the same devastating news you just received. 8 years ago my whole life changed just as yours did today.
I first want you to know that your baby is still perfect. Your immediate love for one another is no less than if cystic fibrosis wasn't there. Your best days are still yet to come.
There are also some things I want you to know about being a mom to a child with cystic fibrosis. I sure wish I had this blog to turn to when my sweet babygirl was born. In 8+ years I have learned a thing or two, that can hopefully help another CF mom.
#1.) Your life will never be the same.
You brought a life into this world, so this first one would be here regardless, CF or not. Becoming a mom changes the person you are whether you are ready or not, even if you plan so much to be the same ol' you. You are responsible for another life now. Your dreams still exist but now your dreams have little dreams as well. You will start doing everything with your child in mind. Your days will be revolved around schedules & routines. You will be exhausted. You will rethink your life choices. You will feel defeated at times. But guess what? The love for your baby will outweigh it all.
#2.) Exhaustion will become your new normal.
Remember that time you worked all day and came home to a messy house? You did laundry, fixed dinner, cleaned it up, and then got in your bed so tired you thought you could sleep for a week straight? You will learn very quickly that being an exhausted mom is a whole new level of exhaustion. Somehow you manage and after a while, being tired is just expected. And again, the love you have for your baby will overcome the exhaustion and you will have found that you made it through another day.
#3.) Take the help.
You will start noticing that at the end of every conversation, "if you need anything, let me know" will almost always be there. Take the help! The people who say this... mean it. Believe it or not, people who care for you, want to help you. Whether it be your mom or in-laws. A best friend or a friend you haven't seen in a while. When someone tells you they will come over and help you do laundry, they will. When they offer to sit with the baby while you take a 30 power nap, take the offer. You will be a better mom for your child if you allow yourself breaks.
#4.) Make a routine & stick to it.
Because of CF, your child will have some different things to do on a daily basis than that of a normal child. There will be medications that need to be taken at certain times, airway clearance therapy & breathing treatments to be done through the day, and possible tube feeds if your child isn't gaining weight because of CF. Establishing a routine is key to do everything that needs to be done each day. Stick to the routine that works best for your family. Just make sure you aren't skipping medications, treatments and feedings. A person with CF needs daily maintenance to stay healthy. Slacking off not only hurts them, but teaches them to not take their CF responsibilities seriously.
#5.) Make CF maintenance time positive.
You & your child will be spending a lot of time doing CF related things. Your child will most likely have an airway clearance vest that they do 2-3 times a day for 20-30 minutes each session. Making this a positive experience for them makes it so much easier. Let them play with something engaging while doing their treatment so that it can pass the time faster. Don't ever let not doing a treatment be a reward. For example: "you did so good today helping me with the laundry, how about we skip your vest tonight." Making them think treatments and medications are a form of punishment is the wrong way to go about it. Always treat CF upkeep times positive and it will show your child that it's just apart of their routine, just like bushing their teeth and putting their dishes in the sink.
#6.) People will say the wrong things. Just inform them & move along.
Because people aren't familiar with cystic fibrosis, you will find yourself explaining it a lot. Some times people will catch you off guard with HOW they ask you. No matter how offended or dumbfounded you are by questions, just inform them & move along. The best answers you can give are the ones that allow them some awareness of the disease. "Will she grow out of it?" -- that's one of the worst questions for me to get... Because no, unfortunately no matter what, she won't. I think people ask this because if your answer is that they can grow out of it, such as having a pacifier or pooping in their pants, than they think they are giving us something to look forward to. Another question I've received is, "Isn't cystic fibrosis the one where they don't live long?" I'm honestly not even sure how I answered that one but I did. And thank goodness my daughter wasn't standing with me for that one. I'm sure you'll get a few variations of questions like those, but my advice is to just speak the truth, spread some CF awareness and continue your day being a supermom.
#7.) You will take on more roles than just "mom" when you have a child with CF.
When you're pregnant, your mind prepares you to become a mommy. It's called maternal instinct. When you become a mom to a child with CF you also take on the roles of nurse, therapist, nutrientist, dietitian, teacher....among others. Be prepared to hook tubes up to your child's stomach so the high calorie formula can give them the extra nutrients they need to gain weight. Be ready for nebulizers, inhalers, airway clearance machines, overnight feeding pumps, PICC lines, syringes, and oxygen masks. When your child breaks down and asks why they have do go through it all, be prepared to sit down and explain it the best you can for their age level. At times you will feel like you aren't qualified for these roles. Always remember you will have a CF team that you can look to for help.
#8.) Stay close with your friends. They keep you sane.
Having girlfriends to talk to helps in any situation. This one will be no different. Your life may be a little different than theirs but talking/venting/crying helps. The best ones will understand & be sure to listen and be there. It's always good for the soul to spend a few hours with your friends when you get the chance. It allows you to remember that you are still you & deserve time to unwind.
#9.) Some days will be better than others.
Cystic fibrosis takes everyone involved, on a roller coaster ride daily. Some days your child will be healthy with no signs of cystic fibrosis and other days the disease will show its nasty self without any signs or warnings. Be prepared for the ups and downs of this roller coaster you are now on. You have to be strong for not only yourself, but for your little one who doesn't understand. Your alls strength will help each other through.
#10.) It's okay to cry. Just make sure that afterwards, you are ready to kick CF's butt.
You will first be in denial for a while. After denial, you'll feel sadness that you've never felt before. After that you'll feel angry. SO angry. After many feelings, you will start to feel a sense of strength knowing that although genetics gave your child this disease, you will do anything in your power to make this okay. And even during these times of strength you will break down. It's okay. Just remember, your best days are still yet to come.
With love,
The mom who feels your pain but knows your strength.
You got this.
We got this. 💜