Starting Over

Today is the day I start over with blogging. This is the day I continue with our story, the day that I once again start sharing in our day to day lives.

 

Although I have said before that I will ease up on talking about Cystic Fibrosis, I find that I can't and I probably never will. It is such an integral part of our lives and it just doesn't go away. From the time that Mark was diagnosed in May 1987, we have lived Cystic Fibrosis every single day. There comes a time in the lives of some when they think to themselves 'I wish they would just shut up', 'I'm sick and tired of hearing the same story over and over', 'when will they ever stop whining' and sadly the answer is going to be 'never'. Now some will argue that never is a very long time and yes it may appear that way, but let it be known that as long as I have breath in my soul and as long as I know someone who is suffering from this terrible disease, then 'never' is that long.

 

NiQi has been in hospital just over 3 weeks now and we still don't know when she may be home. I am broken as a mother for not being there with her and my heart aches every day knowing that she lies more than 500km away from me. If I could I would be there and many reading this may wonder why I am not... let's just say for now that life gets in the way of wanting what you can't always have.

 

A year ago, NiQi was in ICU, fighting a new kind of survival. One where she thought she would die. The days were tough but the nights were tougher. Having received new lungs, she went through things she never ever dreamed she would. No one told her how difficult it would be. No one explained what she would go through, and even if they had, she had to go through it to know that this would be the worst she had ever experienced. There was a day when she said to me that if she had known it would be like this, she wouldn't have done it. Six months later she was heard to be telling friends she would do it all over again.

 

                                                    With Cathy after transplant 2017

                             Her heart pill taken 2017 after she developed tachycardia arythmia

                                                     In ICU 2017 telling us she loved us

                                                   Waiting to have a CT Scan - Feb 2018

                                              No more port - drip site only last a day now

                                                Doing self physio trying to get sputum

                                                     New pills added to to her daily dose

                                                                  With her PICC line

PMB Airport - on her way to Joburg - Feb 2018

 

Now here we are, a year down the line and we are still waiting for positive answers as to what is going on in her body... what made it freak out the way it did. Not being there to comfort her and encourage her is a lot for her to bear and I tell myself that God has a plan. He has to because this is not what I had in mind. I promised that I would always be there for her and even if it is at a distance, she must always know that I will never stop loving nor will I stop caring and neither will I give up... we will fight the fight forever and a day... until we each breathe our very last breath.