Bring On the New Year!! CF BITE ME!!!

AND so 2013 slowly approaches… I mean the year went by so fast.. Baby boy turned 1 and momma turned 30 good gracious. CF reared its ugly face to us. And the saying, “Its not IF its WHEN”, truly hit us. So now we stare down the throat of CF, grab it by the tonsils, and tell it to remember whose the boss. CF doesn’t rule our lives and it never will. Lorenzo is a bright kid and I happen f to think that when he becomes more aware of his illness, he too will learn how to grab CF by the tonsils and tell it whose boss.

As the New Year approaches I am trying to think of ways to make 2013 better, and frankly I can’t think of any ways because the way my road is going I haven’t got a reason for change or anything to fix. I just hope that our awareness brings more people to learn, understand and help to #cureCF. Nothing I want more this 2013 than to make life easier for my baby boy. But I know that time is the true fate dealer and we just have to play the cards wisely.

I have looked and looked at our son and at the man that truly makes me happy. Cystic Fibrosis really thought that by creeping on us like a stealth ninja, we wouldn’t fight back. Well hear we are still standing still fighting, taking each punch and throwing two back. I have often wondered what we would be like if CF had not entered our lives. Here is what I have come up with:
1. We would be ignorant to those 70,000 that silently fight and silently become victorious or legendary.
2. We would not have completely understood nor appreciated the true meaning of life.
3. We would not have been blessed to know so many “Cysters” and “Fibros” or the parents of little CFWarriors through the twitter cfcommunity.
and last but not least…….
4. We would probably be the most stuck up ignorant taking life for granted parents, EVER!!!
So I’m glad that GOD gave us a challenge, the two of us needed it and CF needed an extra voice or three to make some noise and kick its butt down!!! I’m so excited for the new year. Although I may be fearful sometimes, I’m ready to rock another year with Lorenzo and Don in our journey of some Cystic Fibrosis ass kicking.

I especially want to thank all of you for following, reading, and supporting our rants. I want to thank the CF communiy as always for being there at every turn. Our families and friends have been nothing but full of support and understanding. BRING IT ON 2013!!!! We are prepared and ready to tackle. CF you can kiss our butts cus you are GOING DOWN!!!

follow me @cf_momslove follow us on twitter @1breathmatters
help find a cure donate at cff.org
become an organ donor and register, don’t keep yourself from saving another.

CURE CF, MAKE CF STAND FOR CURE FOUND, 2013 LET’S BREATHE EASY THIS YEAR.

-B-

What is normal?

HA! So at the clinic we get asked, “Do you think this is normal for a kid his age?” “Does his poop sink or float?” “Do you think he coughs more than usual kids?” “Does his poop stink?”

Ok so maybe I am confused. I thought he was normal. I thought that #TeamLorenzo was just fine the way we were. Apparently I was misunderstanding or maybe I am still caught in my “once in a while denial” phases. I happen to think that for a 16mo old he is very active and damn near tires me out before the day even ends. I happen to think that he can keep up with the best of them and run around until his legs fell off. Maybe I am a bit too optimistic. I know that things could get worse as time goes by but dag gone it, I would rather sit here and think that our son is as normal as normal can be.

I mean where do I start. Do I think that the activity he is involved in and the nature of his “wall bouncing” is normal. Dag Gone right I do. Because when it comes down to Lorenzo and playing with his cousins, Sorry folks, HE WINS. He laughs normal and runs around just to give me a heart attack.

Now don’t get me wrong I love our clinic team. We couldn’t have made it this far doing this good without either of them. The U of M and AI DuPont gave of the momentum and encouragement to continue to do what we do. Which I think is just simply plain LOVE. LOVE conquers everything; illness, sadness, guilt, etc. So we do a good job because we LOVE the hell out of this kid and he knows it too. But sometimes I think that clinic can ask some really funky questions which make me second guess whether I think I am raising him to be normal or to be a worry wort.

I could sit here and tell you stories about his poop. How when we started we went from one extreme to another. But at first we were budding parents and EVERYTHING was stinky and mushy. Now EVERYTHING is still stinky but its clumpy or its “nugget balls”. I happen to think its normal. But what I didn’t know is that the question of whether it sinks or floats is important. Who would have thought that sinking and floating poop makes a difference. In the CF world it does apparently and guess what folks; He’s got sinkers… LOL (One day he will very mortified by this blog post… bawahahahahahaha) But anyway it stinks normal to me and it looks normal to me.

So WHAT IS NORMAL? I think normal is in the eye of the beholder. The person carrying the soul and mind around for others to see. Normal is not what others think its what the person feels on the inside. Spiritually, mentally, physically, etc normal can mean so much. To me and Lorenzo the breathing treatments and pills are normal, normal in the fact that its something he doesn’t go without so its apart of who he is. Eating lots of food that’s high in calorie is normal to CF patients. Because they have been doing it for so long it would look weird to see a CF patient eating once a day and just eating carrots and nuts.

So….. WHAT IS NORMAL? I happen to think that whatever you make life is what your normal is. Our normal for the rest of our lives on this earth is to raise awareness about CF and walk this journey with our son hand in hand and step by step. That is OUR NORMAL. I wouldn’t have wanted it any other way.

As always thanks for reading. We love the support and sincerity from our supporters. CF is our world and though we may not have chosen it, there is no way we would give it up or ever regret it. Please don’t be afraid to read about Cystic Fibrosis. Don’t be afraid to ask questions. Instead of feeling sorry or wanting to know what you could do for our son. Dudes! Donate! Its that simple. Donate to find the cure. Donate to make CF stand for Cure Found. Be an organ donor. What you can no longer house allow someone else to house it for you and keep it safe. Thank you Thank you Thank you

CFF.ORG to donate. Follow me on Twitter @cf_momslove. I live eat and breathe CF awareness. Definitely!!!! *Breathe Easy* CFers a cure is sure to come.

— B

CF Hopes

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.
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If you get a chance…

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…

Annoyed I suppose; but there’s always Tomorrow..

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.
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Need a cough drop? Excuse me no, he has CF…

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 🙂