Yesterday I lit the fire for the first time this winter.... Sam came over and said, 'Mum, there is a fire, quick call Fireman Sam!'. He then proceeded to push buttons on his hand, held his hand up to his ear and spoke into the receiver (aka hand), 'Quick you need to come Fireman Sam... goodbye'. It was hilarious - and delightful and neat to see him doing imaginary play and putting scenarios together. The fire roared and warmed us up, no appliances came!
Sam has had many appointments and visits to hospital - thankfully all planned! 2 weeks ago we spent Thursday in Starship having an all day iron infusion. The week before we had a Wednesday gastro visit/monthly bloods and Thursday we returned for an afternoon for cardiac review where he had an ECG and 'Echo' taken of his heart. This past week we had pediatric review, a physio appointment and Ministry of Education multi-team meeting with speech/language and OT specialists. So fitting all these things in, plus the phone calls to get them sorted, amidst 2 other kids and part time work means the days are full...but doable.
The upshot of the various appointments is that everyone is delighted in how Sam has really taken off in all areas of development. One specialist just keeps saying, 'he is a miracle, you know that don't you!'. We are already very certain of this as we draw near to his 4th birthday and think back over his long and difficult start to life. We are so conscious he is a precious gift (as are the girls) that we have the privilege of having in our family.
Kindergarten - Sam attends Elim Kindergarten 3 mornings a week and words simply can not express how amazing and caring the staff are. His core teacher goes out of her way to think through tasks specifically to develop him where his medical challenges have seen him lacking. The folder of photos and comments she has put together always brings tears to my eyes. We are hoping to increase him to one full day after he is 4, as he totally loves going there and is thriving with his speech, interests, mobility and even food! He squeezed and orange and put juice to his mouth one day and was so pleased to tell us about it.
Food - His intestine seems to be absorbing and functioning much better than anyone ever imagined. He now receives 50% in his intestine (14 hour formula fee) and 50 % IV (12 hour TPN). Gastro have reduced his IV bags so that 3 nights a week he has bigger bags with lipids and the other 4 nights they are gradually reducing in volume - this is all great progress. His name is on a list for a potential feeding clinic, which the health board are hoping to run in July, subject to funding.
Plumbing - It has been harrowing for him and us doing the 4 hourly draining of his new vesicostomy. We do think it is uncomfortable for him, but he can also let us do it with minimum fuss. Depending on his mood it can require full restraint just to get the tube in. It is difficult as we don't have the luxury of not doing it and letting him suffer the consequences (which is what we would do with other behaviour issues) so we are working on strategies to help him cope with this necessary evil! There are specific challenges to parenting Sam. A good friend reminded me recently that Sam is a boy with a condition, he is not a condition that happens to be a boy! We still have to train him up in the way he should go, just with a few added challenges and those challenges must not define him. Just like the girls we want him to be remembered for a kind heart, a person of honesty and integrity etc....
Looks - handsome of course! I recently gave him a haircut as he was starting to look like a dark version of Einstein!
Speech - One of the nurses giving the iron infusion asked Sam where his sisters were. He said, 'Jasmine's at the orthodontist'. She did a double take - Jasmine was actually at school, but the day before we had been for a braces checkup.
Coming up -
June 6 - His birthday! He will head to kindergarten as usual, but with a cake to share. Francis is currently in Asia for work, but he returns on Sams birthday, which will be the best gift Sam gets for sure!
10 June - Sam has a renal scintigram - watching on live xray radioactive stuff flow through his kidneys - am not sure how it's going to be as I think he has to sit still for an hour or two! hmmmm
19 June - MRI - scanning for a bunch of different things to plot progress and also areas of concern - this could be an overnighter as is under GA.
He also has weekly home nurse visits and fortnightly physio home visits which are great - we are working on jumping and bending right now.
So life is full, but our hearts are full as we watch Sam grow and develop. His main carer that comes into our home and works with him 3 days a week and takes him to kindy, is simply incredible, as are the nurses that have also become part of our family.
We have learnt so many things because of Sam in our life. A great lesson I have learnt is that God has come to give us us a full and abundant life - and that has nothing to do with circumstances.We will all face tough times, all have huge challenges, internal struggles, external struggles, sadnesses and disappointments in our life….. James 5 talks of the Prayer of Faith, ‘Is anyone among you in trouble? Let them pray. Is anyone happy? Let them sing songs of praise. Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord’. In each circumstance James is pointing us to God - my paraphrase is: Pray when in trouble; Pray and acknowledge God when things going great; unwell? get some mates to pray'…….see naturally a life without God can so often be, ‘Are you in trouble?Moan and whinge to your mates, Is anyone happy, things going great? – go party hard and pat yourself on the back, anyone sick? - take some pills and put your trust in a Dr... .. but we have learnt that we were created to be with God, in the good and the bad….and that is the secret to an abundant and full life… it’s not in our circumstance, it’s in letting the great maker of the universe in on the teeny details of my life…..and the joy and peace that gives us the courage to face the day is not from us, but from God as we let him in. So we have cried and prayed plenty in the tough times, but now we praise God and will celebrate with a knees up on Sams 4th birthday!
Thank you for walking, watching and praying for Sam on his life journey. We could not have done it without the love and support of so many.