So a little boy has gone to bed 6 years old and will awake tomorrow as 7! He is very very excited about his impending birthday and has given us all sorts of unsubtle hints at what he expects - 'I want a Fireman Sam birthday cake', 'I want a Thomas train set' etc et al.... unfortunately his health isn't the best at the moment, so we are in zombie land from weeks of broken sleep and the birthday arrangements are rather lose..... He has a nurse coming at 12 noon to do an antibiotic infusion (uti!), then 2-4 is his party. Think low key, 'pass the parcel', musical statues and a walk to the local playground and a cake..... oh and he has requested that we lie the spare mattresses down the stairwell so they can slide down them! He is really adamant the nurse is not to come tomorrow as that will ruin his birthday, but she has to come as he is on a 5 days course of hard core meds and tomorrow is day 4! So we shall negotiate that hurdle tomorrow.
I come to this blog with many mixed thoughts.
I am so so grateful that Sam is turning 7! Seriously.... 7 years ago?!! It is truly amazing and I feel quite emotional on his birthday eve. I know I should be really happy, but my underlying emotion is one of sadness as I see his daily struggle. It is probably more pronounced as he hasn't had great health the last 3 weeks, which means he has missed between 1 - 3 days of school each week due to pain. Missing school means that he doesn't form the friendships that normal school kids do, as his education and social times are interrupted. He also doesn't have many male friends - 7 year old boys are rough and tumble and charging around, but Sam is sitting or quietly playing, often with girls 'mothering' him. It's all very sweet and lovely, but he wants to run around with the boys but he said 'they might hurt my line'. He is aware he is a bit delicate with his various tubes and protects himself. He does like soccer and desperately wants to play but can't keep up. So with my mothers heart on I feel sad for my little boy. His differences are becoming more pronounced as he gets older and his health issues are still very much there.
I am so grateful he is off TPN and doesn't have a central line anymore. However, he is down to 19kg and every day I have to weigh him and be aware of any hint of diarrohea or higher fluid outputs. We need to make sure he is having 5 or 6 bolus feeds into his tummy during the day. I find this a huge pressure (stop and imagine if you were on a medication that you had to make sure you fitted in 5 times each day - it's quite tricky), as the daily weighs show how delicate this balance is and we would ideally like him to be 3 - 4 kgs heavier.
Sam is truly a delight - he loves learning and is reading and spelling and doing maths with great gusto. He however does have some development quirks that are causing us some concern and we have a psychologist involved that is giving me tips on how to get him interested in food (so far not much progress) and looking at the 'quirks'.
Sam has two truly fabulous sisters - they adore him and it is mutual. He is loved and enjoyed by them, but 7 years of interruptions to their lives means that they may have hit 'empathy overload', and I find it really upsetting when there are huge eruptions from them, which seem to come from out of the blue. It upsets me because I know they care so much about him but they too are hurting - not physically like him, but when he is struggling it has a ripple effect on the family.
Last night we were out at a combined family birthday celebration - 4 cousins birthdays in less than 2 weeks. Sam announced to an Aunty, 'I was such a good boy this morning, I slept in til 5!'. He was so proud of himself and he was also telling the truth. It was the first time in 2 weeks that we had a night of sleep that didn't see us up multiple times, but our day started at 5. 7 years of broken sleep is just plain horrible and as we get older it's very hard to navigate the day on that - I can see why sleep deprivation is a form of torture - it's truly horrible. It is hard to maintain friendships and be involved in normal community life when I really don't have the energy to see anyone - I want to be a hermit that sleeps and has an identity rather than 'Sams Mum'.
Someone asked me what we did when we had to get up to Sam in the night. It can vary, but it usually includes something that has leaked - could be a faulty giving set which means the milk hasn't being going in, but leaking all over him or the floor; the poop bag could have filled much quicker than normal and the pressure has pulled it off which means him and the bed and the floor have liquid poo all over it/him and needs cleaning up. It could be a urine drain has moved whilst he was sleeping and is causing him pain and it needs readjusting. It could be bladder pain and he is begging for a bladder washout, which involves warming a bottle of saline and injecting it into his bladder and draining it out - this seems to bring him relief....
So tomorrow we will celebrate Sams life and I will push the sadnesses down, so as to not affect the celebrations. I have decided that tomorrow night I will post some photos from his birthday and then I want to take a 6 month break from blogging. I know I don't do it as often as I used to, but I am finding it becoming an added pressure on an otherwise full life.
As the years roll on I could go back to a previous blog and cut and paste, as the content, frustrations, health limitations, sadnesses are the same...... and although some good stuff does happen, it is the monotony and exhaustion of the ongoing normal dealings of a chronic life that I find discouraging to write about. Unlike Facebook, where everyone is posting shots of their holidays or children's accomplishments, or fun and crazy activity, this blog is one of regurgitated, 'had 3 trips to Starship this week, Sam has another uti/fungus and is on some hard core meds etc... it's not very nice to always be writing the same stuff that bottom line means Sam is struggling.
I find it a pressure to find the time to write, to make sure I have some good photos, to edit and weave something interesting/readable to what is just a monotony of ongoing 'Same, Same'. I'd rather spend the time curled up reading a book with Sam or spending time with the girls.... or sleeping! I'm not a natural words-smith, so each blog takes me a couple of hours to write and edit....
When we started the blog 7 years ago we surely didn't think I'd be sitting on my couch writing before his 7th birthday! It was started largely to keep people aware so they could pray for us as we weren't expecting our boy to live. This blog has helped me process thoughts and emotions during operations, solo parenting, long hospital stints, share in the total joys of all that Sam has achieved. But on Birthday Eve, year 7... I want to thank you for your love and care for Sam on the wildest of roller coaster rides I've ever been on.
But now I need to go and make and hang up Sams overnight bottle of milk and empty his poo bag, his 2 urinary bags and his 1 gastric bag before I head to bed where I hope it involves unbroken sleep....just like every other night.
Tomorrow will be a new day and photos of a very excited boy will be posted tomorrow night.