Of  late I have been wrestling with my emotions.  It seems to be an on again off again pastime of mine.  We all have our ‘ups’ and ‘downs’ as we journey through life.  In this wrestling match if I was at the edge of a ‘down’ I might just topple over, and if I was at an ‘up’ there mightn’t  be any room to wrestle… so I am guessing perhaps I am on a bit of a plateau neither heading up nor down.

Joel’s progress has slowed and I want more.  I am watching Hannah surpass him in so many ways and it is hard to watch. I belong to some on-line brain tumour groups and I shared my frustrations on one group recently and this is an excerpt from one of the responses;

“Don’t assume your doctors have any answers, go out and find them yourself and remember to be patient because the healing comes very slowly If it comes at all. Be prepared, your child will be left behind and will not have the life that his siblings will have. It’s best when you get to the point that you can accept it and stop comparing him to other kids his age. We did not give birth to disabled children so this is a new concept for us. We have to change our whole way of thinking about the child we knew before surgery and it’s hard, really really hard to do.”

Ouch those were hard words to read.

I asked some friends to pray for me as I have been feeling inadequate in finding the answers for Joel.  The problem is that the surgeons know that Posterior Fossa Syndrome exists (also called cerebellar-mutism) yet they don’t treat it.  The Oncologist know it is a side effect for some kids who have a tumour removed from the cerebellum but they don’t treat it.  Actually, no one treats it.  We see a Physiotherapist, Occupational Therapist, and a Speech Therapist who help but none of them are trained in dealing with PFS, they do their best…

Maybe one day, when they understand more about it, but at the moment the parents of these kids are left searching for answers.

So I wrestle… I want Joel to be all he was.  I want for him to be able to communicate with ease.  I want to find the perfect curriculum to help him learn.  There are no answers in any books to help me on my way.

But there is HOPE..

Webster’s Dictionary (1828 edition) Defines Hope; A desire of some good, accompanied with at least a slight expectation of obtaining it, or a belief that it is obtainable. Hope differs from wish and desire in this, that it implies some expectation of obtaining the good desired, or the possibility of possessing it. Hope therefore always gives pleasure or joy; whereas wish and desire may produce or be accompanied with pain and anxiety.

Psalm 39:7 ~ And now, Lord, what wait I for? my hope is in thee.

What am I waiting for????  I put my HOPE in God… enough said.

Romans 15:13 ~ Now may the God of hope fill you with all joy and peace in believing, that you may abound in hope by the power of the Holy Spirit.

We need to wrestle  it is in these wrestling moments that we realise what our focus is on,

• the boy who was
• the cancer who robbed
• the struggles at hand…

Where does my focus need to be…  on Him the One who has all the answers.

In these wrestling moments I was also reminded that while I feel inadequate, God didn’t give Joel to someone with a PhD studying Posterior Fossa Syndrome he gave him to me, and by His word I am “equipped for every good work.” (2 Timothy 3:17)

Just an aside I feel I deserve an honorary degrees for the countless hours of studying I have done on cancer, radiation Medulloblastomas, Posterior Fossa Syndrome etc.

So while I do  wrestle and I  do stumble and fall, I pick myself back up, and loudly proclaim, “In my weakness He is strong!”  I set my eyes once again on the goal and I am off and running yet again.

This past week I came across this song on Big Fat Mama’s site Cooking Up Faith, and it has so moved me.  It has become my life theme song (this week) as I dusted myself off and got myself back on the track here are the words to the song.

Beautiful Things by Gungor

All this pain
I wonder if I’ll ever find my way
I wonder if my life could really change at all
All this earth
Could all that is lost ever be found
Could a garden come up from this ground at all

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

All around
Hope is springing up from this old ground
Out of chaos life is being found in You

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

You make me new, You are making me new
You make me new, You are making me new
You are making me new

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

You make me new, You are making me new
You make me new, You are making me new

If you look through the pain and the tough stuff you will find the Beautiful Things… God Bless my friends!

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