Monday, 27 May 2013

Continuing On

Well it's been a while since I've wrote my thoughts down here.  It's been several weeks of studying, learning and observing.  As a couple, we are trying to prepare ourselves for what lies ahead.  We have learned that we can never prepare ourselves emotionally for the loss which is inevitable.  Yet, we feel we are to be prepared (as much as possible) to deal with our children as they will also be called to carry a heavy weight on their shoulders.  The girls have noticed things lately with Jacob and thankfully they have been understanding and patient, yet, sometimes quiet, sometimes questioning and sometimes confused.  We follow in their thoughts.  It's mixed emotions and thoughts continually.  

It's not that we feel that we are losing our little guy now or we will in the next week (yet, it remains so uncertain what a week from now will bring.)  It's just that we've seen more negatives in the last week which always brings with it a boat load of concern.  

Jacob is having more unknown fever spikes accompanied with low oxygen saturation and extremely high heart rate.  After 5 or so hours, he's back to being the normal Jacob.  Bizarre.  
Yesterday he had a lengthy seizure, which is the first one we've seen of that nature since last November.   Again, the reason why he is experiencing these things remain unclear.   

His irritability is through the roof lately.  Wow!!  I'm really hoping that it's teething related, but I’m unsure at this point. 

A little while ago I was talking with someone from our team and this is exactly what she said about our situation, considering Jacob's degenerative brain condition, "The most painful piece is living the paradox of hoping for improvement or at least some stability for improved quality of life with the dread of knowing that each new unusual finding is likely related to his degenerative disease."  It sums up what we live with each and every day.  

In amongst all discouragements there are many encouragements along the way.  We have the comfort of knowing that we are upheld on the wings of prayer on a daily basis.  That's powerful!  What a blessing. 

We have been blessed with a GREAT nursing team!  They are an amazing group of nurses!  We see the hand of God in this too.  After a lengthy rough time, we are equipped with nurses who are caring, compassionate and knowledgeable. 

We also know that God makes no mistakes - Jacob was placed on our path at the perfect time and for a purpose.  This thought is echoed by Dr. Beeke in his book Portraits of Faith, 'I say to you without any hesitation that God has never made one mistake with you in your entire life.  He has never given you one cross too many or one cross too few.  He has never given you a cross that did not profit you.  What you need is daily, genuine, submissive faith: faith to say amen to God's ways, faith to receive what he in his inscrutable wisdom deems fitting to put upon you. You need faith to trust him with every affliction.'    Oh, so much to learn, over and over again!!  Yet, what a pleading ground with an Almighty God! 

The Portraits of Faith has been an enormous comfort as we walk down this path, with no map to guide us.  We are simply called to lean hard on God for every step. 

Monday, 6 May 2013

Homeward Bound

Two years ago today was the day we brought our little man home for the first time.  Homeward bound!  A day  full of mixed emotions.  A day I was thrilled to leave the hospital, yet feeling the hospital as a source of security.  If anything went wrong, nurses and doctors were only a few short steps away.  Not at home though.  We were on our own.  
Amazingly, we can still cherish Jacob's love that he gives us every day.  
We love Jacob more with each passing day.  

Simply Said Photography on behalf of Helping Hearts captured some super special moments.  As I looked through the pictures, some brought tears, some brought smiles, and some brought full laughter.  Jacob receives a 10 out of 10 for expressions!!  Here are a few of our favourites!!  We have been truly blessed! 
Thanks Melissa for such a great job!    



Thursday, 2 May 2013

He's Back

Yesterday I picked up Jacob from the respite home.  Upon my arrival there, I found him in the arms of Holly, an amazingly spunky nurse.  She has a passion for special needs kids that is simply beautiful.  I expected to find Jacob the same way I left him on Monday.  Not so.  He was back on oxygen.  His lungs were not at their prime.  He was so full of phlegm it was scary.  Needless to say, the ride home was stressful.  He was choking, coughing and spitting up all over the place.  I love the 401, because you get places quick, but at times like that, I'd much prefer back roads, where it's easy to pull over and care for him properly.

Today was a totally different day than yesterday.  I woke up to find Jacob almost completely weaned off the oxygen and his lungs perfectly clear.  Bizarre.  There's no explanation.  Talk about emotionally draining.  One day we are fearing a pneumonia may be setting in, the next day he gets a clean bill of health from the visiting nurse.  

We're living these days not knowing what to think.  Hind sight is always 20-20!  Things become somewhat clear when we look at the past, but in the present, it's hard to know what's what.  We are continuing down the road of uncharted territory.  Many days I wish the road could be slightly charted.  That's not to be our lot with Jacob.  We know God has a divine reason for this, yet it's getting harder every day dealing with so many unknowns!!  Every day we live with all the fears and cares, it drains more and more of our strength.  Yet, God has promised He will not give more than we can bear.  It can get painfully difficult to feel that.

I've listened to a topic on grief which I found very beneficial.  Rev. Vergunst knows first hand what grief is, as his first wife passed away due to cancer.  It's nice to listen to someone who can speak from experience.  Much of what he spoke about we could relate to.  We have a weighty task set before us, considering we have 3 children who's grief process will continually more difficult!

Breanne spending some quality time with her brother.  It's beautiful to see her taking the initiative to pick him up and console him when he really needs some snuggles.