Having been asked to write about this was a difficult thing to know where to start so let me start at the beginning.
Every mom and parent dreams of a perfect happy little baby and see a bright happy future with them. Initially when you hear those word ‘cystic fibrosis’ you literally feel your body loose life and your blood rushes to feet. After this follows the denial and then massive anxiety and the feeling that you literally don’t want to live anymore. You feel overwhelmed and ridden with guilt because you decided to have the baby and now your little precious little one with struggle and might pass away young. No parent should bury a child ever! Allow these emotions and cry until you cant anymore.
After the emotional shock and turmoil follows the information overload regarding treatments, medications and physio which again drags you to massive anxiety and a full blown freak out session.
Having said all this, my little Layla was diagnosed at 5 months after 6 weeks in hospital and we are managing! She is 6 months now. No doubt its hectic getting a routine that works and fitting in all the treatments and you are over concerned you are doing it wrong, not enough, and everything little thing makes you think of germs and bacteria that could affect your child.
So, remember you are human! You are doing your best. Your baba must also have a ‘normal’ life however long that will be. Don’t miss the small things which will be the big things later. Deep breathes and cling to the hope of a cure being close. Also you cant raise your child to just know the disease and forget to live. Learn yourself and baba to live with the disease. Cherish every moment and live life fully. Small adjustments regarding hygiene etc and the treatments should be minor and will become your norm! All these children comes with a plan. Cherish them!
You will find a way to be okay. And have those off days where you cry and grieve. You have to. Stay strong, cause when your a mother, giving up is not a word we know.