Sleepless in Solitude

I hear people talking about how they have to be in bed by 10pm for example, and they start their days at 5, 6am. Oh, they are so exhausted and cannot wait for bed but their cat was purring all night or the dog was upset so they did not sleep well. They need a cup of coffee to get their energy back and wake up. Oh dear, sorry love.

So what should I do? I have been sleepless for the past 7 years plus, since my daughter was born, 11 years if I count my older daughter who seemed to have mistaken day time for night time and vice versa. The sleeplessness got worse these past 5 weeks or so because my special needs daughter screams at night due to one reason or the other - mainly pains and discomfort, then she had major surgeries done on her two ankles...which made everything even worse.

She had severe equinovarus (layman language is club foot). This means her feet looked like golf clubs even though she wasn't born that way. I'll share her story later. They had to cut off some bones in both her ankles, swap the tendons from the inside of the foot with the one on the outside, and snip the tendons at the top of her Achilles heels so she can keep her ankles upright. Then she would be in cast for a total of 8 weeks! 8 weeks!!! As if we weren't suffering enough from the screaming nights, she would now be in something restrictive and painful. I was so overwhelmed that if anyone had asked me how I was doing, I would have exploded into tears.

She was in surgery for 4 and a half hours!!! Poor girl, such a major journey, on top of everything she had been going through since she was born. She went into surgery at 12pm and they came to get me at 4.40pm that she was out of the theatre. I felt like I could have done more for her, something at least to have prevented all these from happening to her, but I was helpless.

When she came out of the surgery, they had to force her awake, with all the anaesthesia she had been given. I was shaking my head, they did not know who they were dealing with. I went to adjust her blanket, saw her ankles in casts and was so shocked that I dropped the blanket back over them. It was too soon for me to see them. By the time we entered the ward, she was in and out of sleep, I knew I was in for one of the worst nights of my life, worse than the last 7 years.

At 12.50am, the anaesthesia finally wore off, she woke up and started brewing slowly - the screaming cries (that's what I call them!). Within a minute, she was at full pitch, screaming the place down. She is unable to understand what you tell her except her name and music so explaining what happened was not even a tenable option. I saw the lady who had a daughter in the bed next to us go out of the bay, probably to talk to the nurses about the noise. I had warned them earlier that she screams in the middle of the night, non-stop, anything up to 6 hours and that they should keep us away from other people so as not to disturb them. They did not listen, they thought I was being a 'diva mum', maybe asking for the unnecessary. As soon as the day broke, the nurse came and said they were moving us, back to where they took us from in the first place. I could not help but laugh to myself that, "I told you so".

Throughout the whole hospital admission, night times were series of crying and screaming, then coughing from screaming at the top of her lungs only to scream-cry even more because of the cough; and me singing all sorts of different songs - those that existed and made sense including those that did not! I was doing all sorts of dances to distract her but nothing was working. Eventually, we were discharged from the hospital when she regained her appetite and was able to hold things down. Oh the first night back home! I almost cried from the sheer pain of seeing my daughter crying endlessly, painkillers given, everything doable done, but nothing was calming her. 6 good hours!

Every night since then has been the same, doctors, 111, pharmacies contacted and still nothing yet can be done to help her until we received a call from one of the teams who performed the surgery to check up on her. Now, we have an earlier follow-up appointment to make sure she has not messed up the surgery site and the cast area in case that was why she was uncomfortable. If she can be settled so she can sleep better, I can also sleep. We can all get better quality sleep in the family and no longer be sleepless in our solitude. I say solitude because, already I was not an outgoing person, now my daughter does not like going out at all so I have even more of a reason to be secluded and stay at home, in solitude, lack of sleep being a major one.

I am sharing this because I know that there is somebody out there who may also be experiencing sleeplessness due to one reason or the other. I just want to say do not lose hope, make sure to get regular health checks, take hot showers to rejuvenate yourself, take care of your health and most importantly, you are not alone.