Monday, June 19, 2017

8 years old and many adventures!

YES, the last month has been busy... and it included a birthday!  It was a very low key birthday, due to me being a tad tired after a whirlwind 3 day trip to see family in Southland.  We managed balloons for our standard 'birthday breakfast', but cake waited til the next day - once I had been to the supermarket. Normally I spend hours on creating a cake and fun things... well I was just straight up honest this year, and happy to accept that 'Super Mum' was never real anyway, she is long dead and gone..... so I think it literally took 34 seconds to create Sams cake!  I had splurged on 2 x $4.99 cakes from Pak'n'Save, opened them up, stuck a cookie cutter in the middle and popped out the 2 centres (which became part of the girls lunch!), sliced out a chunk of one so it would fit together and voila!  Sam seemed ok with it, and it was suitably adorned with a candle gifted by cousin Grace!  Less is more right?

Sam has had many 'firsts' this past month. He has been on the Howick Coastguard Boat (courtesy of a friend), his first flight (2nd, 3rd and 4th!), first time ice skating (he was more 'ice sitting!), first time as a Fire Man (Thanks Uncle Ron!)  

Flight Treats!

Sam has mostly been really well.  I had booked flights to take the 3 kids down to see my family (Invercargill) for a 4 day long weekend.  I had talked to the airline, had letters from Drs etc, and done due diligence to make sure that if Sam was to get sick whilst down south, a plan was in place.  All was on track until 3am the night before we were due to fly out.  Sam wakes up and has a temperature of 39.5!   I was gutted.  As Sam has surgically implanted lines in him, any significant temperature is a concern and I couldn't ignore it (but I really was tempted to!).  I head into Middlemore first thing in the morning and he still has a high temp. Chest xray, bloods, urine samples -everything is reviewed, but no source of infection is found.  At this point I am having to decide whether to risk taking Sam down south, also with the unknown factor of flying in a pressurised cabin at 35,000 feet with compromised lungs and gastro issues, or if it is a normal virus which will run its course.  I am praying and pleading with God to please let Sam be well enough so we can go on holiday. I had texted all and sundry and they were praying too! Historically when Sam has a big temp at this time of year, he has been brewing a cold/infection which often ends up in his lungs and complications occur. I was very conscious of this, but felt peaceful that this time was different. I negotiated with the Dr, (who was hesitant to let us fly), that if we pushed back our flights by 6 hours and if Sam didn't have another big temp between now and then PLUS having a review in the morning, we could still go. After a long day in hospital we got home about 5 and I change the flights to a later one (note to self, never book the cheap flights as you end up paying a fortune to change them - false economy, book the expensive flexi seats first time and hopefully that will pay off in the long run!). Sam had a good night, a good review and off we set for the airport.  Queue hurdle after hurdle after hurdle....then missed flight.... then sobbing mess of a mother with 3 confused kids.... then airline person with heart of stone.... more sobbing and begging..... then lovely airline manager filled with kindness..... queue last 4 seats on last flight of the day!  It was the most bizarre of days - understaffed shuttle company meant we waited 30 mins rather than 10, then broken down traffic lights stuck on red etc etc....... when we finally got on the plane I collapsed in the seat so relieved.  Now remember this is Sams first time on an aeroplane and he is a little anxious.  As we flopped in our seats all I can hear is dogs barking - like quite loudly! I have literally flown all around the world and been on dozens of flights - I worked for 4 years for a UK based travel company and was on planes so frequently and I have never heard dogs barking!  Sam is ... um.... quite terrified of dogs! He is looking at me saying, 'Mum are there dogs on the plane?'.  I could see him thinking am I going to be shut inside this little flying box with dogs?!  Jaz and I are confused by the dogs and then we realise they are right under us in the hold.  Thankfully once we took off they stopped barking and Sam enjoyed his flight. At the baggage claim in Queenstown there were several people relocating for ski season, claiming their dogs. This meant nothing to Sam who clung to me as they were wheeled past him barking!  Then to find our rental car (Candace and I did our best impersonation of 'The Amazing Race' as we had to jog 10 mins in the dark to the rental car park as it was now 'out-of-hours').  2 hours later we pulled up to Mums place and we could now sit and laugh at the crazy day we had just had as we ate our swede, mash and meatballs - aahhh so good to be home!

Travelling with Sam was interesting.  Everything he needed for the trip had to be taken on as hand luggage - we each had 7kgs and all 4 of us had Sams stuff! No airline will guarantee 100% that checked luggage will arrive, so his pumps and stands, all feeds, giving sets, syringes, meds, drains etc, all were packed and repacked and weighed and shared amongst our 4 bags.  The trip was nearly a day shorter due to Sams episode the day before, but thankfully it seemed to be viral and there were no emergencies whilst down south. It was great to spend time with Mum, Siblings, spouses and their kids, Aunties, Uncles and friends.  Sam had never met some of his cousins, but you wouldn't have known that from the interactions. Thankfully the trip back was hassle free and we could enjoy the drive to Queenstown in daylight. 

The day we returned Sam was sniffly and snotty.  This then turned into chesty - not a good thing for him as his lungs are quite damaged.  Thankfully it seems his chest physio work has paid off, as he has been managing to clear it and keep up his energy.  He is now on antibiotics for his chest and he missed 2 days of school last week due to this, but he will be at school tomorrow and is doing really well.

Last week we had a gastro clinic and a dental clinic - both at Starship.  We are playing with his feeds again to try and increase his calories so we can decrease the hours on pumps.  We are now on 65% on Nutrini High Energy Multifibre and 35% peptijunior.  We are to see how he goes for a 7 day period and may titrate it up by 5% if he copes with this.

This coming week Sam has another Psychiatric assessment (cognitive development) on Wednesday at Super Clinic, so he will miss a couple of hours of school for this. It will be good to get the findings of these assessments to see what his baseline is with different functions.

Sam is definitely an 8 year old boy - wants to wrestle, shoot, tackle, jump, attack.  It's very delightful to see his enthusiasm for life and also the difference between girls and boys. Candace asked me the other day, 'Mum was I like Sam, did I always want to wrestle?'. I told her she didn't want to and she asked when he would grow out of it - so the girls are learning what boys are like and having to adjust to the noise of a busy loud brother! Today the girls were so sweet as Sam returned home after a weekend with his Dad. They each sat and cuddled Sam and Sam told them all about his fun weekend. It was lovely to see that they miss each other and were excited to ask each other what they had been up to and to share in each others fun ... I enjoyed it whilst it lasted .... 

Blogging is hard at the moment, as it is hard to separate the issues around solo parenting Sam and Sams well being and the new family dynamic.  I think that is why it has been easier to just not.  The stress and emotions around missing the flight were many and varied - 'Can I even do this solo parenting?', so much planning and prep for Sam and then it maybe being for nothing, 'why does it seem that sometimes everything is against us?', 'So wanted to see family and spend time with them'.... Yesterday I was at a day conference at a local church and we were reading about a lady in the bible called Hagar - she was from a despised people group, unmarried, a slave, pregnant, mistreated by her boss and life was so hard she ran away and the story picks up as she is weeping alone and dejected in the desert.  An angel comes to her and talks to her. The first time in the bible when an angel meets with a person is this time - and they have a chat and she names the place where she is 'God Sees'.  I love that a dejected unwanted pregnant scared despised young woman is visited by heaven - God sees, God understands and God gives her a promise of hope, gives her instructions and help.  In our age of instagram and selfies, we so often want things to instantly be better like that person over there with the FB posts that show their smiling happy holidaying family!  I am confident that God sees each and everyone of us, our challenges, our pains and joys, our true heart.... and he cares deeply.  I am learning so much and so grateful for that.  Learning means we are growing and we are alive.  I am learning to enjoy the kids. I am learning to not rush - to enjoy each hook up of Sams feeds, each drain I get to do, as that is time with him.  I used to see his cares as tasks to be completed so I could get on to real things.... how wrong I was. His cares are the real things as I interact and care for him. I am learning to not care about some things as they don't actually matter and to care about other things that really do matter,

I was telling a friend about our tough day getting to the airport and she commented on how amazing my girls were at coping with this.  I was so proud of how great they coped and how helpful they were and she commented that this was their character having been forged due to the past 8 years of dealing with the upheaval of Sam.  It rang true - hard things are actually a gift, we would just rather hand them back and ask for a nice lovely easy gift, but hard gifts create special opportunities for growth.

I hope whatever you face this week, you can be aware that you are not alone, there is a God who sees, who knows, who cares.  I hope you can accept whatever present you have and not be tempted to throw it back or pretend it isn't really what it is, but find the opportunities that are in it.

Sleep well!


Anonymous said...

Shirley, I really appreciate your posts especially knowing how hard they are to write. So glad you all had your holiday away with family. Much love, Bronwyn W x

Anonymous said...

Great to hear from you - really sorry but I hadn't picked up that you 2 had separated from previous blogs. Must be really hard but you sound like you are facing it the best way you can. Our Paediatrician asks at every appointment how we are getting along as the percentage of parents with disabled children that split up is staggeringly high! He looks great and it sounds like you had a brilliant few days away! Can't believe he's 8! Where does time go........Love Paul, Gemma, Abbie, Lewis and Jacob x x x x x

Samantha Sutherland said...

Can't believe that your gorgeous boy is 8!! Have been having a catch up tag, although you are on my mind every week anyway. I'm totally amazed you planned a trip away on a plane! How fantastic and adventurous of you and I'm so glad it worked out in the end. I stopped planning things for many years because there seemed no point with Laras health always stopping us but it's really no way to live is it. It's life giving up hope in a way but I guess that is what years of let downs does to you! I'm so glad you made this effort as its so important to you all to live as fully as you can and have adventures! Laras still waiting for her first plane trip and I'm hoping it will be a make a wish one. Love you amazing, brave super mummy! Xxxx

matt and emma said...

Shiley hi - cant seem to get my comments posted, but hope you are able to see them... Emma and I catch up with the blog every now and then and are always amazed to read about the progress, your unending positivity and unbounded energy.. its amazing how you are able to give your time to multiple demands and needs of your children... youre a special person who is able to see goodness in difficulty. your faith is an inspiration to many of us... sending BIG love from Malawi