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 :)

New Additions

It sure has been a while since I sat down to formulate my thoughts about our on-going journey.   This post will be a rambling of my thoughts of late.   

Life has taken on an extra busyness since the addition of our little Aaron on Aug 22.  This little bundle has sure changed the dynamics of our house hold.  Unfortunately, in order to welcome Aaron into this world, I needed to have a last minute c-section.  This has come with an enormous strain, considering I am unable to pick Jacob up, hold him, change his diaper etc. for six weeks.  As a mother, this breaks my heart.  I try to tell myself that God has ALL things in His control and ALL things happen for a reason, but I’m stumbling on this one.   To see Jacob so upset and me unable to console him brings pain unimaginable.  Jacob has been somewhat off his norm since Aaron has been born.  We’re unsure of the reason.  When we put the two boys together, Jacob quite agreeably absorbs the new setting.  He seems to be very content and alert when Aaron is close by.  The messages we are receiving from Jacob seem to be mixed...

He is currently at respite, where he seems to be doing fine!  I'm so thankful that he is happy there.  Hopefully by the time he comes home next week Wednesday, Aaron is more predictable and maybe will not exercise his lungs quite so much :-/  Time will only tell what the future holds, but I'm quite certain the next 4'sh weeks will have stress unique to having a new-born and a special needs child in the house at the same time.  

We are excited to say that the addition has finally started.  Wow, what a lengthy process!!  The footings are poured and are ready for the walls next week.  :)  Jacob's new bed has been ordered and should be ready shortly after the addition is complete!  What a welcome treat that is going to be for all who care for him (and for Jacob who will much more room to move without hitting the side rails!!)

Jacob is just sooo big - and white!!

The nurse was having fun with the 2 boys.

Paul pouring the footings for the addition.  Considering he works in concrete, this was second nature to him.  It was neat to see him work in his element! 

    

Thoughts

Lately, it's been hard to know what to say,
As we continue down this way.
It's sure been a tough and hard time,
As we continue to care for Mr. Sometimes.

We've had plenty of meetings,
Some about his continual issue with feeding.
He's still not gaining weight,
Which we may never see at this rate.

His breathing has been a mess,
It sure adds plenty of stress.
Last week to emerge we went,
Yet nothing was found in the event.

We asked ourselves how can that be?
He was sick, all in emerge did agree.
A high fever, weakened, low sats and laboured breathing.
We left with a mixed emotion feeling.

Lately, Jacob's undergone lots of medication changes,
Is it just another one of his stages?
Nothings stays the same for long,
As the battle continues for what is wrong.

Is his condition worsening?
It sure causes our heart much hurting!
We never know what to expect,
Or what will next take effect.

We're blessed with a great night nursing team,
Love and compassion is their over-arching theme.
Each one exceeds our expectations,
As they lovingly adapt to all Jacob's complications.

Anxious fear can grip us as we near our due date.
What will then be on our slate?
A fifth child in tow,
Thankfully the baby is healthy for what we do know.

In the recent past, we've had tears,
Tears of joy or a heart wrenching fear.
God says He'll carry us through,
To lean on Him is all we can do.

We continue to covet your prayers,
And all your words you share.
Your encouragement has been so uplifting,
We find it thoroughly comforting.

Summer Days

Well, this week as I was discussing with a medical professional how the summer affects our family life and explaining how much easier my life becomes, he quickly exclaimed 'I've never heard a mom say that before, let alone, a mom of 4 kids.'  I LOVE the summer days of having the kids home.  They are such a big help in so many respects.  It truly makes my life so much easier!!

Not only do I love having the kids home, so does Jacob!!  The floor is his favorite place as he feels the vibrations from his siblings.  When they leave the house to play outside, he often becomes whiny!!  He's become so aware of his surroundings.  It's truly beautiful to see.

Sound asleep, or maybe just pretending :)

What a treat to have Ashley come back for a day shift to play with Jacob.  The first thing she did upon her arrival was to get on the floor right beside him and start playing/talking with him.  What a blessing to have her still involved with us!!

One example of how our life becomes easier when the kids are around.  They are often the babysitters!!  On this particular day, Jacob was quite out of sorts for some reason.  Even though it was super muggy that day, it was a last resort to take him outside.  I truly did not know what else to do with him!!   He loved it and...his lungs became super clear.  So unpredictable!!  Sheryl was quite pleased that she could watch her brother :)

Random Thoughts

Last week we were interviewed by a member of our medical team for a project for her schooling.  She gave no heads up as to what she was going to be asking, so we anxiously awaited her arrival and questions.  The worst part about it was the fact that the 'interview' was recorded!!  One beautiful thing Paul and I gained insight from was from the question 'what have you learned from having Jacob in your life.'  We all took our turn.  Sheryl was last to answer, and I was the most amazed at her response!!  She replied 'I've really learned how caring people are!'  What a beautiful response.  She didn't reply that she now knows what an apnea spell is, what a pneumonia looks like in a little boy, how uncertain life could be or how hard it can be having so many people come into the house.  Instead she saw the beautiful way that people help out in various ways.  I was so thankful for her response.  Yes, she has pain many times, but at this point in the journey, she is able to dwell on a huge positive.  Thanks be to God for this breakthrough!!

Also, last week a meeting was held at CPRI (the one respite home) which included several staff from the home plus most of our community team.  They can be daunting meetings, but this one went fairly well.   It seems like we can't get off the train of Jacob's weight/feeding intolerance not being an issue.  It would be so nice to have a time that he handles his feeds well and gains weight.  When we push the calories he gains weight but doesn't feel good because of it.  On the other side, to see him grow in length, but not put on much weight is truly a burden!  We've revamped his feeding slightly, so we'll see what happens.  So far, the desired effect hasn't been reached :(

We received pictures from the fundraiser, for which we are thankful to have those moments captured for us!  We stand totally amazed at the generosity of so many people!!  Thank you from the bottom of our hearts!!

Serious conversing.

It's that smile on Becky (our case manager) that has got me through many hard times!!

For anyone who knows our medical team, this picture really sums up the situation - Michelle is not wanting to give up Jacob while Ashley says 'Times up, it's my turn!' Jacob was held the entire evening by his medical (past and present) team!  

Lisa all ready to talk :)  She's a gem!!

Simply socializing.

 

A small sampling of the delicious food!!

Spending some time with his cousin Luke :)

Content at the end of the evening, even after all the sensory input!!

After the Fact

Well, here we are 24 hours after the fundraiser with a plethora of emotions!  To accurately describe how we are feeling is almost impossible. 

To see so many people come beside us last night was humbling to the very core!!  We felt your love and support, and appreciate it beyond words!!   It was a most enjoyable evening for Paul and I to be able to talk to so many of our 'supporters.' 


One thing that was made crystal clear to Paul and I was the fact that Jacob is one loved boy.  Even though he comes with so many hardships, he's loved by many.  Never did I think that Jacob would be fought over the whole night :)  Originally I thought my dear Mom and Marije would have their hands full all night, but they couldn't have got their hands on him if they tried.  For a mom to witness such love is heart warming!!  Be sure Jacob felt the love too, as he was quite calm all night (which is a blessing in itself!)

One thing that Paul and I have been living with for almost three years (this was one of the lessons we learned early on) is the fact that we are called to walk this path with Jacob, not anyone else.  We can't (and don't) expect anyone to feel what we feel, experience what we experience, suffer how we suffer and joy how we joy.  Yet, last night showed us clearly that there are many who may not feel exactly what we feel, but are walking this path right beside us.  To see family, friends, neighbours, the church community, school community, nurses, other nursing personal, and work related personal all come together and shower us with support was a day which we will not forget. 

We tried to talk to everyone who came, but we failed in this department! :(  But be sure, every one of you who came made us grateful and amazed!!  Your presence didn't go unnoticed! 

By the response we heard last night, Lisa's speech was informative and helpful in giving a realistic picture of what life is like with a child like Jacob.  Once I get a copy of the video, I'm going to try to upload it for those who would have loved to come, but were unable due to other commitments.  Talking with Lisa today, she said how much she enjoyed herself last night and could really feel the love and support. 

Where we also stand humbled is how people are willing to help with the actual building of the addition.  This is something we didn't at all count on!  We see first hand that the Lord gives more than we can ask.

With much thanks to God and many generous hearts, we were able to collect over $12,000.00 dollars, with funds still coming in.  Your moral and financial support is greatly appreciated.

Sorry I have no pictures to post.  I'll post pictures once I get the pictures from the 'photographer.'  For some reason I was rather busy, so our camera sat in the kitchen collecting dust. 

Thanks again to everyone for all of your support last night!  Your kind words and encouragements have indeed uplifted us!
  

Excitment at the Home Front

These last weeks have been busy, but full of excitement.  It's beautiful to have positives going on around us!!  Last week we heartily welcomed a previous night nurse back, from 21 months ago!  Maria left us as she was pursuing her RN degree. She's since graduated but has kept working part time in the community.  We had no idea she was coming, but when I saw her walking up the stairs, it took me 3 looks to confirm my thoughts!  I was beyond excited!!  She was thrilled to be watching her cuddle bug again.  According to Maria, he's changed in so many ways, yet he's the same in so many other ways.  

We also had Ashley back last night for a night shift which was totally refreshing.  It's been 7 weeks since she took on a management position, so it sure has been a while since she's shown her love to Jacob.  The girls woke up with smiles from ear to ear to see Ashley again!  Caleb woke up when she was gone and was NOT impressed!!  He loved his mornings with Ashley.  They are alike in many ways :)

As we are busy planning for the fundraiser on Thursday, this has made the time go by super quick!  Little did I know what lessons were to be learned through this endeavour!!  One lesson that has been learned is that this fundraiser has been super beneficial for our girls.  They have something fun, exciting and special to plan and take part in.  They have been a huge help and are so excited to see Jacob reach this milestone.   Many ideas have originated from them which makes the night even more special for them.   It's beautiful to see them shine!!  

Lisa Pearlman is really looking forward to the opportunity to speak.  We have no idea what she is going to bring forth, but I'm certain it's going to be interesting for everyone!! 
 

Jacob's Room :)

 June 12, 2014

 As we plan on this fundraiser, it is a constant reminder of how Jacob has exceeded everyone's expectation.  What a celebration :)  Truthfully God's ways are above our ways!  It brings back memories of Jacob in the isolette in the PCCU, when he was only several days old.  Back then, I never thought we'd see the day that he would 'graduate' to a crib.  Now, 3+years later we are faced with the reality of Jacob graduating from his crib and requiring more room than we currently have in our house.  

Lisa Pearlman is a world renowned speaker who has graciously offered to speak at our fundraiser.  She is a captivating, knowlegable and sincere woman who has dealt with Paediatric Palliative Care for years.  She's been involved in Jacob's care since he was 10 days old, and has been an enormous asset ever since!!  I'm more than slightly interested in what she is going to say :)  

To say the least, the nurses can't wait for the addition to begin (and finish) so they can have their own space with Jacob.  They are looking forward to being able to deal with Jacob in ways without the worry of waking the whole household up.  Yeah, for more sleep and more relaxed care from the nurses!! 

Month's Summary

Over the past month, we've been blessed beyond measure with a relatively stable boy.  I don't think we could get him to a more stable point :)  Here are several of our recent joys/concerns:

- He's been enjoying quite a bit of time outside, which he LOVES!!  He's usually grumpy for a bit when we take him in, but that's ok.  It shows us that his brain properly processes his likes/dislikes, which is a huge stepping stone! :)

- He's beginning to roll onto his right side.  It's so nice that he can become more comfortable on his own!  What a milestone :)

- He's been sleeping at night surprisingly well!  He's been waking up to the minute, that the nurse is done her shift.  It seems when he gets a good night’s sleep, his days are so much more manageable!

- He's becoming much more vocal :)  In a pleasant way.  He's making more different noises in response to different things.  It's truly beautiful to witness.  I love our new found conversations :)

- He no longer needs chest physio.  There is simply no explanation for this, but we'll gladly accept this new stage.  His lungs have been perfectly clear for several weeks. Incredible!!

- A new GI med has been added while another one has been discontinued.  And the world of changing meds continues.  It seems like the med is having the desired effect, so that's a bonus!

- Unfortunately we witnessed another apnea spell on Sunday :(  On a positive note, it was the first one we saw in 6 weeks.  That's the longest we've gone once they reared their ugly head in December.

- By far the least fortunate for us was that Ashley, a night nurse, changed positions in the nursing world for a management position.  We wish her the best, but it's more than difficult to see a nurse leave whose heart was so caring for Jacob.  She was a gem and will always have a very soft spot in our hearts!  The kids had a really hard time with her leaving too, as she was such a fun person to wake up to.  I'm convinced she'll be glad that she's gone though because we've been battling bats in our house :(  She witnessed a bat in our house last summer, and let's just say, she didn't handle it very calmly! 

Ashley - is dearly missed already!