Time has Told

Jacob's time on earth has come to an end.  What pain and sorrow.  Yet, to think of Jacob's struggles being over and his eternal gain sure brings joy amongst the sorrow.  With much thankfulness, our wishes were granted - that we would be able to care for Jacob at home till the very end and that his symptoms would be under control, so his passing would be peaceful!! 

Not only did we lose a child, but we've also lost a life style (one that many cons but also pros.)  It was a life of constant care, appointments, decisions, nurses etc.  Please pray that we may given peace and wisdom as we are called to use our time so completely different.

Here is the information for visiting and funeral.    

Visiting hours:

Arn Lockie Funeral Home

43 Main St. West Norwich, Ontario N0J 1P0

Wednesday November 26

2-4pm, 7-9pm

Funeral 

Heritage Reformed Church

685 Main St South, Burgessville, Ontario N0J 1C0

Thursday November 27

11:00am  

Pastor D. Lipsy officiating

Marije

This post was written a few weeks back, but I was waiting for one more picture.  No more waiting, I'm just going to post.  Marije and I were talking a few days ago about Jacob's rough days previously.  Looking back, those tough days were much easier compared to the suffering Jacob has had at late!!  Even since Jacob has taken a turn which we've been dreaded, Marije has stood beside us as a genuine friend!!!   As hard as it is for her to watch, she's here to support and share her love.  Thanks be to God for her love and care!!
  
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Three years ago Marije heard about a boy named Jacob that had special needs.  After some time she decided to call us and see if she could help us out in any way.  An appointment was set up so she could see for herself what was involved.  The day dawned as a dreary, cold Labour Day holiday.  In she came to a household that wasn't running at it's prime.  With four children under the age of 9, one with special needs requiring constant supervision, many things had be let go.  As Marije dealt with Jacob, I was assured we had a great fit as a respite worker.  
    Since that raw September day, Marije and Jacob have developed a close and loving relationship!   They have grown to know and understand each other.  Marije's ability allows me to leave the house knowing Jacob is well taken care of.  That's huge!  Not everyone can provide that level of support.  Without her care, I would be unable to do the normal tasks that are required of me as wife and mother.  Groceries, appointments, lawn cutting, swimming :) shopping, and spending time with Paul are just a few of things that I'm enabled to do with. 
    Marije has walked this path beside us and has witnessed Jacob's contagious smiles and heart warming giggles.  She has also witnessed those times where every breath is a struggle and wondering how much longer he can fight.  Marije's ability to think outside the box is continually beneficial for Jacob's overall well being. 

This picture shows one of Marije's great ideas - using a pool tube as a different positing tool.  Jacob has since outgrown the pool tube, but it sure worked well for quite some time.

 Jacob has always been a boy who has soaked in the love of being held.  Thankfully Marije has been very compatible in that field.

 Going to most appointments by myself has been sufficient, but at times, to have Marije present has been a huge blessing.  Here Jacob was enjoying some time at a sensory play group in London.  Marije was keen on watching how Jacob responded and then tried to figure out ways how we could incorporate such a sensory therapy at home.

 More snuggles!! 

 Massaging.  He did very well with that therapy, but as his bones become more brittle, massaging does indeed get more tricky. 

 And then there are the times that Jacob sleeps and the kids are home and...the games come out.  :)  That doesn't happen very often but when it does the kids LOVE it!!  Marije has become much more than a respite worker to Paul and I, but also our kids. 

It is such a joy to see Marije using the talents God has given her.  She has been such a blessing to us over the past 3 years and we look forward to her loving care in the future. 

Last Steps

Even writing these words brings tears.  It's such a reality that Jacob has entered his last journey on earth. Things are deteriorating which brings anguish which is indescribable.   Yet, to think that Jacob is but a few paces away from everlasting peace is such an inexpressible joy.

Currently his symptoms are being treated and are mostly under control.  His pain and agony that he endures is so difficult to watch, so to have the symptoms under control is a blessing.  It brings a time of breathing again for us all.  As his brain stem deteriorates, it doesn't seem like the path is going to get easier.  Yet, we plead upon that promise 'My grace is sufficient for thee.'  For those who are unsure, Jacob is at home, which is our desire.  Jacob's medical team supports us totally, as home has been the place which Jacob has always done well in.  So to have his last steps at home is in Jacob's best interest. 

Your tokens of love are greatly appreciated!!  Your prayers are appreciated tremendously.  Without God, to walk this journey would be so much more difficult, if not impossible!! 
   

The Journey Continues

It appears that we have entered the last journey of Jacob's life.  The hour of his departure is unknown to us, but the time does seem to be somewhat short.  Hours, days, or possibly weeks - no one on his medical team is giving any direction, as the road is uncharted and unpredictable.  We trust that God's timing is perfect and are comforted in the fact that His will will be done. The battle continues of wanting Jacob to be out of all his suffering, yet the flesh and blood crying out for him to stay.
We covet your prayers! 

Providentaly, one of our girls brought it to my attention in September that we should be having family pictures taken.  I understood her tone of voice and acted on lining up a photographer.  Little did I know at the time how precious those pictures would be.  Here is my favorite picture of our little man. 

 

Make-A-Wish

In the spring our social worker told us that Jacob was eligible for a Make-A-Wish.  After much consideration and advice, it was suggested that we apply for a screened-in gazebo, which would enable Jacob to enjoy the outdoors without being eaten by the MANY mosquitoes we have here.  It has always been impossible for Jacob to be outside here from May - July due to the enormous amount of mosquitoes.  This summer we only brought him outside a couple of times due to the amount of bugs.  

After some time, we were thrilled to hear that Jacob's wish had been accepted.  The construction date had been set for October 9.  Home Depot came with 9 volunteers who donated their time to help build the gazebo.  It truly was beautiful to see those people willingly take the day off work to help one who is less fortunate than most.   They worked with their heart in the project. Good humour was in order for the day!

Make-A-Wish surely went above our expectations!  They arrived with a wonderful array of donuts and muffins for break time.    When lunch time arrived, a wonderful selection of subs were brought in.  The workers were re-fueled and ready to go again.  The humour resumed and they were all in the groove again. 

Around 4:00 the project was complete.  Pizza, pop and cupcakes arrived to celebrate. 

Not only did we have a screened-in gazebo, but one with windows all the way around and...it came fully furnished.  A beautiful wicker patio set sure gave a complete and homey feel.   Jacob was also given a whole basket of goodies - teddy bears, sensory toys, books, blanket, and more.  One of the volunteers went to some local nursery's and received several plants.  A London nursery graciously donated a tree which they named 'Jacob's tree.'     

We stood amazed and humbled at the love that was put into the day.  God had indeed blessed us above what we could have asked for! 

The construction begins

and continues...even though they were battling high winds.

The willing volunteers with a job well done!! :)

The completed project

Jacob's first time in the gazebo :)

One day a couple weeks back we were scheduled to have an OT and PT appointment but Paul was making too much noise working in the addition for us to be in the house.  (Jacob didn't handle the noise well at all!!!)   Our conclusion...let's have the appointment in the gazebo! Jacob loved it and Paul was able to complete the necessary tasks :) 

Love

I love you bro!!

These two boys already have a great love for one another.  As we were contemplating if Aaron was smiling in response, it was confirmed when the two of them were spending some time beside each other.  Aaron continually smiled at Jacob while Jacob was rather soaking in the love!!  

What a privilege and blessing it was for me hold our 'big' boy again!!  After 6 long weeks, my arms wrapped around Jacob with a host of emotions.  To see him smile sure made my day!!  After holding Aaron for six weeks, Jacob seemed that much bigger than before, but also soooo stiff.  
Jacob has been at respite for several days which has given a much needed break.  Trying to juggle the two boys care has been difficult, but yet rewarding.  I'm hoping the transition of Jacob back home is going to be a peaceful one!  We'll see what tomorrow and the days ahead brings.
Exciting news in the construction world...Jacob's room is becoming more and more a reality :)  With most of the noisy work coming to a close, it's a few of the quieter jobs left, which can be worked on when Jacob is home.  We found out (the hard way!!!) that the noise and vibration of the tools/machines were playing havoc on his brain.  Here is the project as of today.  I'm hoping that the mud is going to come to a close soon!!  We're so thankful for all the help with the building!  It truly is a big job, but overall it's gone smooth with excitement filling the room!

 

Progress

 Little did I know even one month ago how much joy this little one would bring into our family.  The concern of how we were going to care for 5 children weighed heavy on me since the day we found out we were expecting.  The fact that Jacob takes so much of our time and energy made the realization of being a mother of 5 kids a daunting task!!  With so much thankfulness God knew perfectly what our family needed!  It was another child.  The children have been enjoying every day with their new brother.  The girls love being little mothers, and Caleb - well that's a whole other story!  He is super protective over his brother Jacob, and it's looking like that same protectiveness is appearing over his brother Aaron.  He wants his brother to walk soon :)  He asked us on the weekend, 'how many more weeks till Aaron is going to start smiling?' We replied 'hopefully in about three.'  Caleb quickly asked, 'then is he going to start walking?'  I love how his brain ticks :) 

 Jacob has been gone quite a bit since Aaron has been born, but when he's home he still gets plenty of attention!  Thankfully we've seen lots of smiles this past week, which makes everybody's day!  We see it more and more how Jacob loves having his siblings around.  It also seems like he's getting used to Aaron's crying.  At first, he really became agitated with the extra noise, but now he is getting adjusted to the new norm.  Thankfully Aaron is also getting used to his new surroundings and is crying much less :) 

 Jacob's spa day :)  Marije decided to try something new with great success.  He really seems to enjoy the sensory stimulation. 

 Talk about trying something new...  our therapists talked to me several months ago about trying Jacob in a stander.  In their mind, he was up to the challenge.  On Thursday it was brought into our home as a trial.  Little did we know how great he would do in it!!  He loves it.  We have to take it really slow, as his leg muscles have never been worked like this, but so far he's responded extremely positively.  The stander is great for Jacob's muscles, tone, bones, and so much more.  Every time we place him in the stander, we'll add another minute or so, and see how he does.  It seems like we're seeing progress :)

 The walls are now poured for the addition.  This week is stacking up to be a busy week with lots of work being planned on.  We've seen the need for the addition for a while, but with Jacob's new stander, we have to leave it by the main door, as we have no room to store it.  The addition is looking more beneficial all the time.  The extra room is going to be a welcome treat!! 

In South-Western Ontario, rain has been in abundance this summer!  Building the addition with 5 inches of water in 5 days has added plenty of excitement for the kids.  It doesn't matter how much water or mud is in the hole, Sheryl and Caleb will be found helping Paul do whatever needs to be done!  (They are far more eager to help Paul outside than to help clean up all the dirt/mud they bring in the house :)