I mentioned having a hospital stay coming up with Azariah to someone the other day, and they said “oh you will have loads of time to write your book then” and my response was “probably not”.

Staying in the hospital with a child who is having surgery isn’t the same as maybe having a hospital stay for yourself. I had no idea what it meant to live in the hospital before we did it for 5 wks when Azariah was born but you definitely do not have bags of free time to catch up on stuff or read or write a book!

At Alder Hey, if your child is staying in their own room, this becomes where you “live.” There is a sofa that becomes a place to sleep, a small cupboard for you to unpack a few items, a TV, a chair, and a shower/toilet room. Some may not have a room but be on a ward, so although there is a pull-down bed, you don’t have the same privacy.

The room is a mini hospital in itself. The day starts with the nurses hand over. You very rarely have the same nurse doing a number of shifts in a row, so you have to start by getting to know them, answering all their questions as they get to know you through the usual “is he your only child?”How old are the others?” etc etc. One morning, the nurse allocated to us changed three times!! By the third time, I sat down & cried because I was exhausted already.

The nurses will do their observations every 3 hours – day & night. Then there will be the ward round where the team of doctors will stop at your door & do all their checks/questions/updates, etc.

Throughout the day, various other health professionals will pop in the room. So I mentioned the word privacy before. That was a stretch because you don’t really have any. Many times, I was pumping milk as Azariah couldn’t breastfeed, and nurses/doctors would be in & out. I gave up having any privacy during that time.

They will come to do ultrasounds by the bed, x-rays, and taking blood. You never know when these things are going to happen they just turn up & pop their head around the door. No opportunity to let your baby form a routine. You are on the hospital schedule, not the babies.

Your child is hooked up to many machines. Machines monitor their heart rate, which beep if they drop below their accepted levels. It beeps constantly through the day & night, so you are in a constant state of worry, thinking something is wrong! They may be hooked up to medicine through a line/cannula connected to their body somewhere. When this medicine runs out, it dings very loudly to alert a nurse to come and change it. Often, they are attending to someone else, so you have to leave it dinging! Even through the night.

If you are the parent staying in the room overnight, we take it in turns. Sleep is a myth. Something you can only dream about, only you never get the actual chance to fall asleep to dream! Of course, the room can never be dark as the nurses need to see what they are doing, but at night, they do have different atmospheric lighting.

Throughout all this you still need to think about showering, dressing, eating etc we have a room in Ronald Macdonald House, so next time you are in Macdonalds & you see the charity boxes, think about giving as Mac House is a life saver to parents who live nowhere near the hospital! Although it was a walk to get there so if it was dark, Marvin would have to walk me back 6 I’ve known parents get an uber there just to feel safe.

At Mac House, you can cook, wash your clothes, and have your own room. Would you want to be going food shopping and cooking food while your child lies in a hospital bed asking for you? No. You want to be by their side as much as possible! We aren’t patients, so the hospital doesn’t provide us with meals, only the patient. So we really appreciated those who brought food to us so we could store it & reheat quickly and get back to Azariah’s side. Also, those that just brought us simple things like water and snacks, so again, we didn’t need to leave the site and be away from Azariah unnecessarily.

We would find that if we both left the bed side to go get food for example, we would come back and the nurses or doctors have done a scan or something without us being there to comfort him during that. So it got to the point where one of us had to be there all the time as we were his voice, his advocate. So we rarely spent anytime time alone, in fact I think over the 5 wks we only slept in the same room 4 or 5 times while Azariah was in intensive care as you arent able to sleep on that ward, but that was in seperate beds 😆

The mental exhaustion of seeing your child be prodded and poked, being in pain that you can’t take away, not being able to just pick them up for a cuddle. Having to ask questions to understand everything they are doing to your child, because listen they may be the professionals but we are the parents and we are the ones with him 24/7. He is our only focus, but for them, he is one of their patients, of which they have others to look after, and mistakes can be and were made! That was exhausting in itself! That’s a story for another day.

You are so incredibly grateful for the NHS & all they do, but we must remember our nurses & doctors are human beings and can’t be perfect all the time. They are under incredible pressure and increased work loads. Keep them covered in prayer, and also pray for those in countries where this health service isn’t free. Imagine having the added worry of having to pay for your child’s care and hospital stay!!

Then there is the head space you need to keep in touch with work, life back at home, other children need to be cared for, bills still need to be paid. None of that takes a break while you are in the hospital.

Plans to go home? Don’t get your hopes up because plans can & do change at the last minute. Until you are in the car driving home, there is no guarantee it’s going to happen. Plans’ full stop can change. You are living in a constant state of the unknown.

And let’s not forget the covid restrictions! Again, a story for another day.

So I say all of that to give you a glimpse of what life is like living in the hospital as a parent of a child needing medical assistance. You are in a constant state of fight, adrenaline, and cortisol zooming around your body. Your own needs forgotten. How many times I would forget the pain I was in from giving birth or forget my own self care, I couldn’t tell you. I couldn’t even wear shoes due to swollen feet!

This time round, we won’t just have given birth but be in hospital with a toddler, so I will leave you to imagine the challenges we will face. But I’m sure you can see that we won’t have much time or headspace to be spending time doing any hobbies or anything for ourselves at all.

If you’ve read all the way to the end, hopefully, all of this will help you see ways you could support and pray for a loved one if they have to go through this. They need so much more than your kind words. They need their reality acknowledged, and they need to feel supported, often in practical ways aswell as emotionally and mentally.

Amber x