As I sit here watching the gentle rise and fall of my sons chest as he sleeps, I can’t help but think that despite everything, I am unbelievably blessed, I have made not only one, but two beautiful tiny humans.
Whilst I fully understand that some women do not wish to have children, and I completely respect their right to decide, there are some women who will spend their lifetime wanting what I have right here, OK they may not want the Cystic Fibrosis aspect, who does? But to be able to create their very own little beings and to be a Mother will be something some women long for but may never experience and honestly I cannot even begin to understand how that must feel and it makes me even more grateful to be sat next to this little guy right now. CF or not I am a mother to two perfectly beautiful boys.
When I decided I wanted children I knew that it would mean caring selflessly for them, both physically and emotionally, I knew that I would no longer be able to think about just me and what I wanted in life, I would be the least important person and I knew over time the job description would change and I would also become the cook, cleaner, washer woman and taxi driver amongst all the other jobs a parent is expected to do.
Along came my children and suddenly I found myself with an added job, not one which I seemed to recall being in the job description and one I certainly hadn’t planned on my ever doing, that job was to be my child’s nurse.
Of course I knew I would be expected to put a plaster on a cut knee or elbow and sit next to a hospital bed and wait for X-Ray results to show broken bones but becoming a full time nurse was not in the description.
So here I am now, a Mother nursing a child with a difficult, heartbreaking chronic condition and although it’s been a steep learning curve, I’m confident in my ability and am content that most of the time I know what I am doing and why I am doing it but I have to be honest there are often days when I really struggle with doing everything that is expected of me.
As with many other CF parents I often find myself faced with incredibly difficult decisions relating to his care, decisions that if I was a professional with only a professional interest I would find far easier. But as a person with a vested interest in his care, a lot of my decisions are clouded by my personal feelings and this makes things so much harder. I see now why patients admitted to hospital are not allowed to be treated by family members; it makes it far too complicated.
The decisions I am faced with generally have huge implications and not only affect his quality of life and how we do things now, they can also have serious implications in his future.
Making the decisions like consenting to operations and procedures is difficult. Each surgery poses a different risk and each treatment has potential side effects or long-term complications and sometimes it’s hard to know what to do for the best.
As a parent I am supposed to keep him out of harm’s way, and in a roundabout way I feel like I’ve slightly failed on that part. He should be able to come to me for safety and comfort. Yet there have been numerous times when I’ve found myself assisting the Doctors to restrain him for painful procedures, seeing his sad eyes look to me to make him safe and then realisation that I’m not stopping them is just heart breaking. Right now he’s too young to understand that I’m not doing something I want to do, rather doing something that will help him, and I am thankful that he doesn’t yet hold a grudge.
I am blessed to have recently been trained to do my child’s IVs, port access has given us more independence and a little more control over his care, but it is also a huge responsibility, with the line directly accessing his heart extreme care has to be taken not to introduce infection or air bubbles. It has to be 100% sterile and there is no room for error.
Juggling both roles is hard, I know he needs to do certain treatments, and as his nurse I have to make sure that he is doing them and doing them correctly, I have to make sure that he is getting the best start including medically, and at times that means being stubborn and pushy when in all honesty I want to just sit down and play cars, have cuddles and just be mum!
I know I am far from alone, my social media feeds are full of amazing CF Mums and Dads who are also taking on both roles. I often sit down and think about the sheer gravity of what we do, the drugs, IVs, night feeds, nebulisers, physio and ventilators and it’s terrifying, but despite this I wouldn’t have it any other way, I jump at every chance to take back some control, even if that means being jack of all trades, including my child’s nurse.