As I sit here looking at my son and his beautiful smile its hard to believe that he has Cystic Fibrosis. After all, he looks normal and acts normal. But, as the doctors tell us its not a matter of if he will show signs, it’s a matter of when.
Lorenzo was diagnosed with CF before birth through an amniocentesis, even though it is not 100% accurate we knew the probability was high. When he was born it was confirmed, that yes he does indeed have this chronic genetic illness.
A lot went through my mind, days of crying not knowing how long I would have with him? How often would he be hospitalized? Will he make it his first year without being “sick”?
Well, most of those thoughts were slowly laid to rest. I took the mindset that in reality none of us know how long we have to spend with each other. So, I have learned to cherish every day with him.
Lorenzo is now 16 months old and luckily has not gotten sick, no colds etc. But, I still wonder what it would be like not to have to sterilize a shopping cart before I sit him in it, what its like to not force him to wear a hospital mask when we visit the ER for any of us, out of fear of him catching something minor, which could be detrimental to him.
I have taken a different outlook on life for myself also. I have decided to go to school to make my life better for all my children. I have learned not to sweat the little things. And, I have grown to see how much support we have among strangers thanks to social outlets like Twitter.
I have now made it a life goal to be an advocate or voice for CF and to help raise awareness and funding for research. Because the illness affects so few (30,000 in the US) the government does not fund research. All funding is through private donations. You can donate here: CFF.org
We are on the verge of a medical breakthrough with CF research and there are drugs being tested that could target the underlying causes of CF. Although there will never be a cure, controlling it so my son and thousand like him can lead a normal life is all we can look forward to