Friday, February 10, 2017

Many thoughts....

This past week one of Sams Starship buddies lost his battle with his challenging body.  Another beautiful Starship Warrior has left us.

The bonds you make on this journey as the parent of a child like Sam are hard to explain in words.  As you mingle in the ward corridors, waiting for time to pass as your children are being operated on or for results from various tests, there is an unspoken understanding of the common pain and heartache we share.  The understanding of physical and mental exhaustion doesn't need explaining.  We enjoy the highs with them and weep with each others failed procedures.  We understand how hard this journey is, yet we know how much harder our journey will be with out them.  Sadly this became the reality of another dear family this past week.

I have learnt so much from this couple as they adopted their boy, knowing he had huge medical challenges.  Their generosity was evident to all as they sacrificed their time and lavished their love on him.  And the results were so beautiful to behold.  A boy that knew he was loved.  Although non-verbal he communicated so very clearly his joy and security in their family.  I can not fathom how hard it will be for them to now do life without him..... but they will, just as others have done before. For life is each day, with pain, with challenges, but always with hope.  As they shared their belief in a loving God, at his funeral, their strength and confidence in tomorrow came because they have walked this journey with God helping them each step of the way.... and He isn't about to stop now.

The funeral was a beautiful celebration of a short life, but one that impacted everyone he met.  My heart is sad as I will miss him.  I grieve for his dear parents knowing it will be empty days ahead.  I grieve for other friends who have walked this same lonely road.... and I hug Sam a little tighter tonight, as I have the privilege of being his Mum.

His UTI isn't clearing and he has been in a lot of pain - especially through the night.  He has been waking 4-5 times each night and begging me for a bladder washout.  It seems to give him relief for a short time.  Today Starship thought an ultrasound would maybe help pin point the infection.  At 2.30 I picked him up early from school and took him in for 2 ultrasounds.  The first was with a full bladder and the second one after I had drained it (and the urine was sent to the lab).  The kidneys were also scanned.  The good thing it showed was that the bladder was totally emptied by doing a manual drain.  This is good, as even a little residue of fluid could be potential for infection.  Tomorrow hopefully someone from the gastro team will call me with a plan, as his antibiotics run out tomorrow and he will need something to help clear the urine.  Tomorrow is mufti day at school to celebrate Chinese New Year so he is very excited to be wearing his red t-shirt to school.  It is very handy that Santa and the Chinese both like red - once less thing for me find!

I leave you with photos from the weekend.  We tried to devise a system which involves less screaming so that other beach goers can enjoy their day out.  A big thumbs up was given 'kayaking' with Uncle Greg in Beachlands.

And first day at school photo from last week, which every child tries to get out of, but they really have no choice.....eventually all 3 made the shot!  Sam adores his sisters and they are so good with him.

This weekend will be shaped by whatever hospital tell us tomorrow.  On Monday Sam has a mid-day clinic with the gastro team to decide how to change his feeding regime to shorter hours and higher calories.  Somewhere in the weekend we are hoping to catch up with friends for a picnic/play date on Saturday, Sunday is church in the morning and hopefully another beach outing in the afternoon. As usual all plans come with the caveat, 'depends how Sam is'.

Enjoy your weekends.

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