Been a while since I have posted anything. Its been a rough month for us, nothing major but I have been ill, Lorenzo had an ear infection and is breaking some molars (teething is a pain…lol).
Anyway on to the posting. We have once again signed up for the Great Strides walk for Cystic Fibrosis. This is a walk set up by CFF.org to raise money and awareness for Cystic Fibrosis.
We are pleased to announce that the One Breath Matters blog application for BlackBerry BB10 devices is now available via BlackBerry World.
So, we just watched the Cystic Fibrosis Foundation webcast; I am overwhelmed with hope.
Why? We are on the verge of finding the medications needed to help slow the progression of CF radically. Kalydeco along with vx809 looks to be very promising for those with the double Delta F508 gene (like Lorenzo). The thought of this brings tears to my eyes for the thousands of CF patients with this gene.
@CysticTeenLife “Anyone else get pissed off when people say “I feel sorry for you” when you tell them you have CF?”
So as I was going through my twitter feed the other day that tweet stuck out at me. I pondered this question for awhile and this is what I think.
If you ever get down time and want to read a legacy, check out Eva Markoort. She was and is phenomenal. I absolutely love her story and I could read her LJ all day if the fiance’ let me. Please read. Be humbled. Follow @65_RedRoses on twitter… order the documentary it too will “blow” you away…
I have explained as much as explaining can do… I am never exhausted explaining but I am getting exhausted explaining to the same people the same things the same day. Please if youre going to ask and really be interested to learning about Lorenzo and CF, then for freakin sakes LISTEN!!!!! It may not seem as though it is a big deal now but its not a matter of if its a matter of when. And being that I can sit here and tell you that I cherish each day because I know that as each day passes our days of easy living are slipping away. Scary to think that what I know is to come surfaces right around the corner. Do I want to be morbid, for freak sake NO. CF does not rule us, trust me everyday we learn something new from Lorenzo. Hes the best teacher, yet. CF will never run us. I dont need your sympathy talks or suggestions. WE got this.. and will continue to walk with CF as opposed to it walking us. With that said I do need for people to understand the severity of their child having a simple “sinus congestion” can cause my son to have far worse and pay for it in the most unjust way than just taking allergy medications.
So I guess it goes without saying that I can get pretty annoyed with things in life. After having our Lorenzo, I think I get most annoyed with the idiots that surround us everyday. It is so important for us to educate the world about CF because I am really tired of the ignorance. I would never wish CF on anyone not even my worst enemy and that my enemies should be greatful of. 🙂 But it is the pure ignorance that truly drives me to want to punch someone in the throat really hard and than ask them if they are ok. Yea a little violent so let me explain.
A year ago we were given a pretty hard pill to swallow. It took a lot of sugar and many tears to wash that pill down COMPLETELY. Cystic Fibrosis can not ever be taken lightly, although the fiance and I joke about different aspects of CF all the time. We took the news, we prepared as much as parents could prepare, and we learned to deal with it as different things attach to us daily. A year ago today if you told me my son was going to have CF I would have probably asked what is that and what antibiotics will he need to get rid of it. So I too was ignorant at some point but I researched and I talked to people in order for myself and the fiance’ to wrap our heads around the issue. HA To look at our Lorenzo and to see him tear up the house, you have got to think I would be joking about this Cystic Fibrosis bit. As much as I would have liked for it to be a dream, our son is a blessing to us. We are definitely able to look at life in a whole new light and not take advantage of the little things in life.
Now I can only hope you understand my frustrations when I say that I am annoyed by the ignorance of the world. With things like cancer and AIDS constantly attacking our society, you would think that Cystic Fibrosis would also be on the list of attention illnesses to know. Nope not CF by gosh batman its genetic. Can’t educate people on genetic illnesses they will want research to be done to isolate the gene and force more stem cell research. But its the simpleness of educating a population so that you don’t get the comments like “Hey he should bundle up sounds a little raspy” or “hey you think he may need cough drops or cough medicine”. I hate being rude but sometimes rude is the only way to go when you deal with an uneducated population.
I only wish that the awareness the CF community tries to raise was enough for people to understand exactly what the patient goes through. As a parent I am more concerned for how people will treat my son than how he will deal with it. I don’t even think we have to worry so much about him because he is a typical boy and that is a growing process I can not stop. I just don’t want people to give him a hard time. Or have to listen to him explain himself to people because he’s “hacking” in a library or he’s eating too much McDonald’s. I use to cry at night because I didn’t know how I was going to explain to him about CF and how he may react to the information. But watching him grow and they way we constantly tell him about his condition, I don’t think i have much to worry about. He is a good kid. Cliche’ for a parent to say and early in the game, but he is. Its the ignorant Jane and the dumbfounded John Doe, I think I have to worry about.
As always thank you for reading our blog. We are just vessels and were blessed with an angel, to spread the word to end the word. Make CF stand for CureFound. Follow me on twitter @cf_momslove. Make a donation to cff.org, cftrust.org, or any other CF community out there in your town. It only takes a few minutes to just read about CF and understand what it is to for them to try and “Breathe Easy”.
—Biancca, Lorenzo’s mommie 🙂