Monday, 23 June 2014

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!!

Friday, 13 June 2014

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!

Tuesday, 10 June 2014

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!!