Life As a CF mom

This blog was supposed to have been on my breast implant illness surgery day, however today my mind was focused more on having a daughter with a chronic disease. Let me start off by saying CF sucks. It sucks, it sucks, it sucks! Sorry— that just always makes me better. 

My daughter Natalie is 11 years old. She has Cystic Fibrosis. She was diagnosed at 5 months of age which was an absolute blessing. She remembers only a life filled with medications, doctors visits, and a mom attempting to force  her to eat every high calorie, high salt, high fat food known to man. 

Breakfast of CF champions
Hospital stay for 7 days for abnormal chest x-ray. Her body rejected the PICC line so we had to stay as an inpatient.
Her days are spent preventing exacerbation of illness through medications and treatments. My days are spent on the phone with insurance companies, pharmacies and doctors, refilling medications, checking to see which medications need refilled, assisting Natalie with setting up her treatments, and sanitizing her medication equipment. When she was younger we would sit down as a family and play board games or read books to help pass the time during her therapies.

Natalie doing her daily vest therapy. This shakes her lungs to help expel the mucus her body creates
Cystic Fibrosis is a genetic disease which requires both mother and father to be carriers of the particular defective gene. You are born with it and when Natalie was born they did not routinely screen newborns for CF. They do now. She was diagnosed with CF at 5 months of age after having what we thought was a cold for almost two months. Her stuffy nose was not secondary to a cold, it was because her nasal passages were full of polyps and she could barely breathe.  

The amount of doctor appointments, medications, treatments, and hospitalizations my daughter has already endured is quite jaw dropping to most people. To us it is just what we do. We drive six hours for a 2 hour routine check up several times a year. We rearrange our living room so she can wear her vest where she requests to. Up and down and up and down we move that large heavy piece of equipment in order to make our Natalie’s life a tad bit less stressful. We pack multiple pieces of equipment and countless amount of pills and inhaled medications every time we leave town or when she is having a sleepover. Good thing I am organized, right?! So the thought of just quickly getting out the door for an activity or a last minute trip is just not very doable. Natalie swallows about 70 pills each day like a boss because that is what it takes to fight this disease daily. 

Great Strides walk every year in May-Wichita, KS
Handling multiple vials of blood taken like a BOSS

Because we fight this disease day in and day out we do not always sit back and take it all in. Yesterday we were told that Natalie needed another sinus surgery. Is it life threatening? No. Is it a major surgery? Not really. But you know what it is?…. it is another emotional beating for a mother. My daughter now has to have another surgery. She has to undergo yet another life delaying procedure because of this nasty disease. She will have mental and physical stress because of this. She will miss school. She will not be able to participate in volleyball and gymnastics for a week. This is not me complaining… this is our reality. And although we stay positive 99.9% of the time I am human and sometimes I feel anger. Anger towards CF itself. Why does this disease even exists?! 

What I would not give to let my daughter be worry free. Natalie is so strong, but it breaks my heart that she has to be strong. Doesn’t she have the right to not be some days? I know what it is like to have to be strong and it can be exhausting. It would be so nice for her to be able to come home from school and play like a child does without rushing to do her medications. Hours each day are spent on fighting this disease. 

Life as a CF mom is tough, but I would not change it for the world. GOD chose me to be this girls mother. GOD made me into one strong bad ass mother to handle all that comes with chronic illnesses. I wish I could erase CF from the world but I cannot. So we, as a family, will continue to fight this good fight until a cure is found. 

Stay tuned and follow my FB page Faith Family Fitness for more information on how you can help us fight against Cystic Fibrosis. We walk every year in May to raise money in hopes to find a cure for our strong baby girl. 

GOD bless my daughter who fights daily without a single complaint. 

GOD bless my daughter who is also my hero. 

GOD bless those scientists who will some day find a cure for CF. 

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s