Some Say..

Well folks its been quite a while, has it not?

So, where do I start? Well lets start where Donny left off.. Yup going strong for the Great Strides Walk and thank you to all our supporters/donators. If you have not even donated a dollar then you should go do that right now… *Pause, to let you do that* http://www.cff.org/Great_Strides/BianccaMorris8214. We are so excited to be walking this year in Michigan, new families to meet, more family participation, I’d say Lorenzo’s Lung Warriors/Walkers are ready to take on this walk in May.

To be completely honest twitter has become our love. Twitter has become a place where everyone in the CF community can be completely honest and great help. I have found solace and mind easing within this community. Would NOT trade it for anything. I can’t wait til Lorenzo gets old enough to do his own account. He needs to keep in contact with his CF friends and twitter is the best place. By the way if you have not checked out our video please to do so. We had alot of fun making it and we love sharing Lorenzo’s smile with the world. It brightens our every grey day and makes our hearts glow every second.

So the beginning of the month has proven to look so awesome for Lorenzo’s future. I can not express to you how excited and over joyed we are with the good news from Vertex.  As you may remember, Lorenzo has the homozygous mutation of DeltaF508. Recently Vertex made the announcement they were approaching phase 3 of the Kalydeco/VX-809, a.k.a Lumacaftor.  YOU KNOW WHAT THIS MEANS FOR RENZO? That is right a chance to breathe. A chance to live the life he is waiting patiently to explore. By the time Renz turns 5 which may I remind all of us is 3 YEARS AWAY, he may just have a chance to kick some of these pills and vitamins and have a chance to explore every bit of this life he deserves. Everyday I thank researchers but I feel sad sometimes because we lost lots of others to get this far. As much as I know this is a giant step for the entire CF community, I realize there is still alot of things which have to be ironed out and made simple. Some parents have said, “how excited should I be?”.  I look at it like this, something that gives hope is always something to look forward to and be excited for. I am soooooooooo overly excited. I pray everyday for it to be alot closer than what it is but beggars can’t be choosers and so I sit and wait. Patiently and in tears, but I am waiting.

It is so hard to take this journey when not one person understands. It is soo hard to make this journey when awareness fails us, no matter how hard or how much we talk about it. I wish all my followers donated to the walk or cff.org. I wish our families took time to learn more. I wish those that practiced ignorance would not bring it to our Lorenzo or even in our presence.

This year is our first year experimenting in a fundraiser, Bowling. We our hoping that it goes well and that we get to accomplish two things 1. raise money for Cystic Fibrosis, 2. raise awareness for Cystic Fibrosis. More details to come. 

As for the book I am trying to write, I have not forgot nor have I lost any ideas. Just trying to practice good time management and with a 19mo old running around pulling your pants down its been quite hard.  🙂 keep wishing me luck and sending your thoughts. Thank you.

I think I want to leave you with a freelance poem. Sometimes the best way to summarize my thoughts is through writing.  May you all stay be blessed. Don’t forget to be an organ donor, give someone a chance to share their life with you. Follow us @1BreathMatters @CF_MomsLove @BlkScorp33. Donate to CFF.org, one cent counts. Continue to pray for the CF community children and adults, everyday is a struggle with this silent ninja but together we can beat it down, kick it around, and show it who is boss.

SOME SAY

by Biancca Morris

Some say It is just a virus

Some say it will get better

Some say its not the end of the world….

Some of YOU don’t know so don’t say

Some say just have patience

Some say its the same thing Joe Schmo has

Some say just relax

Some of YOU don’t know so don’t say

I am very hopeful

I am fighting this battle without added help

I know what it is So I SAY

BACK OFF!! WE GOT THIS!!

Image

Why?

Why is it that when you feel like you are doing everything you can possibly do to take care of someone you love sooo much, it turns out to not be enough. It turns out to just lead to all the wrong things.

I am prepared and ready to tackle CF at all times, but sometimes just sometimes it feels like all it does is toy with us and the more we prevent the more it seems to be catching us by surprise with little hiccups. I don’t know if any of you know how extremely hard it is to fight a battle with only an army of three. Pretty fuggin hard…

I wish I could just grab all the illness he will ever face and all the bacteria he will ever come in contact with and bottle it up inside me.. Wish I could make every bump and hiccup seem like nothing.. SHIT!!! I wish I could just give him my lungs and shower him with a healthy immune system for all eternity, but who am I kidding.

At this point I just wanna punch GOD in the face right now… Just one good jab.. Lorenzo is a blessing no doubt about that but for all intensive purposes I think I have a right to be angry w GOD and wanting to punch his lights out.

Well anyway I hope and I pray that I can keep the strength and be a rock for my family.. But it sure is getting hard…

As always thanks for reading… Help to cure CF… Become an organ donor and this year participate in the Great Strides walk near you for Lorenzo and others like him.. Want more info please contact one of us.. @blkscorp33 or @cf_momslove… We are Lorenzo’s Lung Warriors and we are going to fight this….

Remember to love love love… Live live live… And laugh out loud…

So is it allergies……??

Ok.. Tonight I have to set the record straight. PLEASE FOR THE LOVE OF GOD, STOP ASKING ME IF ITS ALLERGIES!!!!

If we have explained to you that he has CF and what CF is, then daggone it please stop asking what is wrong with him and if he has allergies. No he does not have allergies. Maybe he is allergic to your stupidity, did you ever think about that one, dummy?? He is congested yes and he has mucus yes. FOR CRYING OUT LOUD!!! he is 18mo he does not have the ability to cough up the “crud” like you and I. If he could you dang right I would be on him to cough it up. If you have/had a bacteria today or four days ago, wear a blasted mask. Because you think you feel better does not mean the bacteria is gone and is non transferable. Please let’s not be ignorant.

Just because Lorenzo was diagnosed with Cystic Fibrosis, does not:

1. mean he is special needs, so stop categorizing him as special needs. “Special” yes, ‘specially driving us to send him to an athletic camp RIGHT NOW.  (Laugh my a** off, that is serious huh?)

and 2. mean he needs you to baby him like he has the plague because if you really cared you would take the necessary precautions to not make him sick.

Donny and I have successfully, for 18mo, conquered each hurdle of CF with Lorenzo. We have all worked together to take CF by the reigns and show it who is boss. We do not need any extra advice from someone who lacks the mental capacity to even pay attention to the importance of the words BACTERIA-FREE. It is with bitter-sweet rejoicing that we pride ourselves on how healthy he is and that he has been able to avoid the long hospital stays. We are aware that his time will come and so we brace ourselves for that moment. But if we can prolong it, HELL we will take every precaution we can. We realize that there are others in our CF community that are not doing so well and with heavy hearts we pray for them everyday. That’s a true family!!!

So is Lorenzo doing well right now? For us he is doing good. He has congestion and mucus but that comes with the territory of CF and we know this. Does it stop him from being our “little monster”? HELL NO!!!!! It probably never will. Literally I am almost positive he will be so active that I will be soccer mom, baseball mom, track mom, football mom, and I will bring all the treats. LOL Well yea I guess I will bring all the treats because Lorenzo needs the calories and I need the stress relief… (sorry that was a side thought) *Another side thought: Would that then make me the bad sports mom because I bring all the snacks? Guess I am going to have to learn to be mindful of others diets.. O my! (Not my fault my son can eat pretty much anything and everything, with little moderations)*

Anyway its just frustrating to have to constantly remind people that he has a terminal illness and what does not seem like a big deal infection to you could mean life or death to him. LITERALLY!!!

As always thanks guys for reading, it means alot to us to have followers and people who care to learn about our daily journey with CF. The book is coming along. Probably going to add in tweets from followers and do a question/answer session on the blog.

Follow us @1breathmatters. Follow me @cf_momslove. Donate donate donate. CFF.org is on the verge of kicking this CF thing in its rear end and to the moon, so please educate yourself and donate to help a great cause. Make CF stand for Cure Found. Also be an organ donor, you are not doing your soul any good by taking your life savers with you. To BlackBerry users be on the look out when BB10 is launched for the OBM (One Breath Matters) rss feed app, the CF PillPad app, and the Lucy Legacy rss blog feed app. Three of the most enjoyable apps you could share with people and learn.

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