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Curing the Chaos

Through Sickness and Health

65 Roses

Considering sickness when you have children, can often create chaos. Especially when their system is already compromised. In our case, it's due to CF. In other cases, it could be anything. As everyone knows, the flu has seemed to create an epidemic. Lives have been lost, mostly in children.

As a mother, I worry about every little thing. My son being sick, and having an already compromised system; just going into public is an anxiety attack waiting to happen. When we do have to go in public, a cough sends chills down my spine. Seeing runny noses, and cranky kids worries me to tears. We get in and get out. 

But my main worry, is the flu. 

At this particular time, I've read many articles about the strain that's going around and from what I've read, just being in the same vicinity as someone infected; breathing the same air can transfer the virus. Which is very scary for anyone. Especially people with small children, and the elderly. For a child or person with CF, the flu is one of the most damaging viruses; for their already weak systems. The main organs that are affected by Cystic Fibrosis are the lungs and the pancreas. 

But ALL organs are effected in a sense. So ANY virus is pretty scary. My son is currently sick, we've discovered its most likely due to the weather being wacky. But none the less, his system is even more compromised due to whatever it is he has going on. 

Thankfully, it's not another double ear infection, and it's not traveling to the lungs. Being a parent to a child with many medical needs can be nerve-racking. Extremely nerve-racking. Any sign of sickness and he needs to be seen by his CF doctors and team, get his culture results from the last visit and have a new culture taken, have his lungs listened to and pretty much have a full body checkup. All of this, so they can promptly diagnose and prescribe the correct antibiotic and steroid to fight whatever it is and keep his lungs strong. Similar to a usual sick appointment for a normal child. But with many more components. Insurance is a must with CF. Medications, visits, and specialty doctors get very expensive. 

With the flu being the new "black plague", my role as a mother is to do everything in my power to prevent him from getting it. The flu in a CF patient can hospitalize them, and break their bodies down far quicker than normal kids, and do way more damage. Lucky, we're homebodies and don't go out much, or do anything. 

Our happiness is right here at home. My son seems to be an introvert like my husband and myself. I, of course, don't want him to be "sheltered" or stay a homebody for forever, but during flu season; it's actually pretty smart. 

Although he is on antibiotics and a steroid, for the time being, his system seems to be pretty strong. But he's not had a very good day today. He started running a fever shortly after breakfast, so I administered him some Motrin to help. He just wasn't feeling good what so ever. He is currently napping, pretty sure that was part of his problem.

 He did get up rather early this morning, considering his daddy is home and not working today. And at this stage, daddy is his everything. Everything is daddy! 

He was exclusively breastfed from the first hour of his life. He self-weaned, at 21 months. Heartbreaking for me at first, but also a relief. We were told by his doctors that they think that's why he was doing so good with his CF, on top of the fact that I stay consistent with his medication schedule. 

We have a very close relationship with his doctors and CF team. They are like family. When they have events, we are there. Fundraisers, we're there. The annual CF walks, you name it. We are huge advocates for CF. We feel like more people should know about this monster, and educate themselves on it. Even if CF hasn't impacted their lives or families. Just so they can understand why us CF parents are the way we are. 

I am constantly hounded by people who want to come "hangout" or just come by and see my son. My first question is, "Are you sick?", "When was the last time you were sick, or around anyone that was sick?" 

Bacteria and germs travel on clothes, skin etc. I've contemplated making a disinfecting area outside my home so that whoever wants to come see him can, without having to worry about germs, and such. 

I've been told, "Oh, it's only the sniffles, but I have allergies." Well, sniffles is all great and whatever but I don't know you like that, so no. And it's not to be mean or ugly, I'm just not going to chance my son's health on an hour visit with someone who could POSSIBLY be sick. Nope, not this mama. 

My family knows to let us know if they are sick, or been around sick people. And they know if we have plans and they come up sick or feel sick. Those plans are automatically canceled. They understand why I am the way I am about sickness. 

The smallest illness could hospitalize my son, and disrupt my husbands work, which in turn messes up the income that we already had minimal of to make sure we have a roof over our heads and food on the table. 

Having a child with this disability made it to where I couldn't go back to work. I mean, I could've. But who wants to put their already sickly child into a daycare where they can pick up nasty sicknesses. On top of that, specialty daycare costs more than the paycheck I would be bringing in. So, it would be pointless anyway. 

We manage with what we're given, though. My son doesn't receive disability for whatever reason, which we will be fighting that in the coming months. But, that's a chore in itself. Those people don't want to hear a word you say. Thankful for my son's social worker and insurance agent. They handle a lot of that mess for me. Not that I don't want to, because I would. But sometimes, it's better for them to because I can be a hothead at times about things regarding my son. 

Cf comes with a lot of downfalls, but it also comes with a lot of perks. I've named of some of the downfalls, so for a happier note; the perks of CF. When they're not sick, they are "normal" children/people. 

They can eat pretty much whatever foods they want, considering their bodies don't absorb fatty vitamins or nutrients in foods, (reason for the AQUADek vitamins they take daily). They can run and play, such as normal kids; just at a pace their bodies can handle. They are pretty much normal when not ill. But when they are ill, they are ILL. 

I never knew I could handle this life. I never knew I would be faced with this life. The CF life. It's really hard at times, but it's also very rewarding. Seeing the smile on my son's face, hearing all the good reports at his annual CF appointments. 

One of the best things I heard as a mother, was his doctor say he brags on my son all the time for being as healthy as he is. Which is also a reflection of my husband and myself, due to the fact that we made the medication schedule and follow it every single day. It's routine now. Hearing a specialty doctor praise you and your spouse for keeping your son healthy, is a huge pick-me-up. 

We're usually not that fortunate. But our luck changed on June 2nd, 2016. Cystic Fibrosis is a tough life to live, but you've gotta make the most out of bad situations. Always look for a positive. Never sit with the negatives. Although it can be very hard sometimes, especially with sickly children. 

If you sit, you won't get anywhere. It will only further hinder your mental state. Expect the worst, and hope for the best. At this present moment, I am very blessed and humbled by the outpouring of love and support we get from a few close friends and family.

A very close friend of mine, Katie, always commends me on how positive I stay no matter what this CF life throws at me. She encouraged me to make this blog because she feels like our story could help someone, somewhere. Even if its only one person.

And that's all I can hope for. 

I think about my mental state, and where I was emotionally when I had to face this in the beginning and I didn't know where to begin, or where to even look for help. Even if it was just for me, and my mental well being or anxiety. 

If I can reach even one person, and somehow help them through something, even if it's not CF-related, I would feel like I accomplished something in this life. Encouragement plays a huge role in life, as well as the CF world. 

A lot of CF'ers can relate to wanting to give up, and asking why they were given "this" life. My only answer is, you're brave enough for the part. There's no rhyme or reason for it.  Keep your faith, and stay positive! Pray often, and love as deep as you can! Good vibes only, from here on out!



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