She will move mountains!


This is Ebony, who I am blessed to have her call me mummy, not for the normal reasons that most of you would come up with, but for the sheer private fact that she is my Granddaughter by birth, but my DAUGHTER by CHOICE. She has always been told from a very young age of who she is and why I’m her mummy, but has over time decided that she doesn’t need the explanation anymore because she is content.   She is grateful and proud that she has her older sisters  and her Big Brother that she likes to tease and joke around with.  From those very first few moments of entering the world, Ebony had to fight.   She is my little fighter………….my little Angel who fights the disease Cystic Fibrosis.   A life-threatening, genetic disease with a faulty gene that causes the body to produce abnormally thick, sticky mucus that clogs the lungs, pancreas and other organs and can lead to severe respiratory and digestive (requires enzymes) and other problems, for which there is no known cure.  Her journey so far has been one of many ups and downs along the way, with also a  constant study in poop……yep poop control being big on the agenda, as a vital part of CF life.  You need to observe and list the different elements of the poop to help determine  whether your enzymes are working, so we constantly continue to fight these battles together.   We have lost many friends along the way………” very young  souls way before their time”.  As  the average person with CF will only reach their mid-late 20’s.  Some will pass younger (before the age of 10) and only a few will reach that happy place of 40 or so years of age.   That saying of “It’s not the number of Breaths we take, but the number of Breaths that take out breath away” comes to mind, for I’m sure Ebony will move mountains in her life time because she’s my darling little ankle biter who continues to surprise me.  She is  very strong willed, something that I have encouraged because, one day she will need this to beat those germs and bugs that try to take her life from us little by little, with all that she has.  A simple cold is innocent to a healthy child, yet to a child with CF the outcomes are so much more.  I hear all the time that phrase, “But my child only has the sniffles, or but it’s only a cold” or the classic, “but she’s on antibiotics”……..well that might be okay for you, but have you thought beyond that for a child nearby who’s lungs can’t rid those germs….. destroying the lungs little by little. I’m so glad that I  learnt right from the start where to draw the line and being firm enough to tell people to their faces that they couldn’t visit due to them being sick.   We don’t allow smokers, we don’t use aerosols or bleaches around Ebony just to name a few.  Germ control is instilled in the parents of the child with CF right from birth, we take every precaution to make sure that everything is clean and we sterilize nebs, pots, tubing, masks and everything treatment wise , disinfect and clean, clean, clean.  Salt and water or hydrating fluids,  is also a very big part of a CF child’s life, for they get dehydrated very easily during sport or in the heat of the day.  There are nebulizer,  puffers and inhalers to use……………medications  of all sorts to be taken, salt to be filled into capsules and then to be counted and taken, fats weighed and to be counted and physio to be done each and everyday.  Yes… we are taught Physio right from birth, to help the child bring up that thick sticky mucus that blocks their airways 2 minutes a side 12 positions twice a day.   I was paranoid in the beginning…….terrified listening to my child breath all night long …… listening to each and every breath, especially when she was ill.   I become accustomed to her breathing patterns that even today I know when something isn’t right.  I have learn’t to sense the changes and trust my instincts and did physio many times a day and night.    I  am grateful that we were made to learn physio, as it has come in handy on so many occasions when my daughter couldn’t breath,  turning blue, and thinking with tears streaming down her face, that she was going to DIE, all  because thick, clag like, sticky mucus was blocking her airways…… sounds unbelievable, but it’s true when I say more than a fist full of the stuff came out of her while waiting for the ambulance in the middle of the night.    It’s one of those things that have never left my mind, for it rears it’s ugly head every now and again, just like it did recently.  I remember the panic that I felt, and the terror in my child’s face, let alone the fear consuming me, but had to hold it in tightly so that I could continue to keep a clear head.     You know, I sit here reading this over and over thinking back to the day when Ebony was a baby and all those nights that I didn’t get any sleep and just cried and cried……these were days I’m talking about….not moments.  Days that you didn’t know how your going to get through them, but you push yourself on and on and on……..until your child is out of the danger zone and you hear that beautiful sound of a lovely clear breath, something that we all take for granted, I know I did until Ebony was born.   But for a CFer it can takes weeks of antibiotics both orally or Intravenous and other times months to achieve and even hospitalization for weeks at a time.     The thing is though, you know in your mind that it will happen again  over and over and over.  I’ve learn’t over time to live from day to day, not making plans as they always fell through, so we live for the moment and really enjoy the day that presents itself each morning…..and it’s a blessing to be woken up with her smile, when she gets out of the right side of the bed  (she loves her sleep 12 – 14 hours a day most of the time lately) of course and isn’t in a bad mood (She’s a little split personality and use to say “Lucy” is being naughty today……Crazy cat was the good one………as she got older she’s just a fire cracker waiting to explode).    That’s the joy I get, as simple as that!  Have I mentioned that she has a cat like behaviors and has the tendency to walk and act like a cat. All fours on the floor with her bottom in the air, or in the crouched position…….yep, that’s my girl, she’s unique alright.    There is also the struggle with those area’s that seem to follow  other CFers too like, behavior  autism, aspergers, ocd, let alone the struggle with eating and drinking, maintaining weight, constipation or diarrhea etc…………..even today, we still continue to fight through this, why are there so many similarities that we seem to follow on the CF path, but each parent is told that your child is just unique.  Why aren’t we informed that some CFers don’t like to eat or drink? We even educate ourselves on bacteria found in the  home like pseudomonas, which is very harmful to a child with CF. If it’s a danger then we remove it, simple as that. We keep continually learning, for that is the key to success.     She is  artistic, intelligent, moody, terrified, happy, sad, angry, clever, beautiful, funny, bossy, loving just to name a few.  She even has issues with clothing, textures, food, fabrics and tags, should I go on? CFers are more prone to Dehydration which is something that Ebony fights with on a daily basis and the battles we’ve had on this subject continue.   This is just a small look inside our life with my little CFer and doesn’t even look at the everyday dangers that we learn to avoid at home and out and about in the environment and other areas.  So while I  look back on our journey and I’m proud……… very proud for everything that WE have achieved  together and everything that we will continue to achieve, for I will move MOUNTAINS for you Ebony if I have too, but for now you will continue to CLIMB them, one day at a time.

I’m sure I was  always destined to be a mum and every child that came into my life has been nurtured every step of the way.  I’m  proud as a single mum, as I have 3 amazing adults also that have/are attending university.  They  are intelligent  amazing, beautiful people both inside and out and I’m sure my youngest daughter Ebony will also shine brightly in her chosen field whatever that maybe.  I’m also glad, that all the times that my attention was on Ebony to get her though each illness and research treatments and natural therapy’s over the last nearly 7 years, 11 months and 2 days (hope I counted that correctly lol)… children never complained.      Love and Hugs from one very proud mum.  xoxoxoxoxo

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3 Responses to She will move mountains!

  1. jalansjourneywithcysticfibrosis says:

    Your writing is amazing
    You say so much that we feel in a better way

  2. marsha difani says:

    You are awesome!!! She will move mountains for sure….

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