One Day at a Time

Shortly after Jacob was born, friends of ours gave us a copy of this poem.  It's been close to my heart ever since.  The life we life is surely one day at a time, at times moment by moment. 

One Day at a Time

One day at a time, with its failures and fears,
With its hurts and mistakes, with its weakness and tears,
With its portion of pain and its burden of care;
One day at a time we must meet and must bear.

 

One day at a time to be patient and strong,
To be calm under trial and sweet under wrong;
Then its toiling shall pass and its sorrow shall cease;
It shall darken and die, and the night shall bring peace.

 

One day at a time - but the day is so long,
And the heart is not brave, and the soul is not strong,
0 Thou pitiful Christ, be Thou near all the way;
Give courage and patience and strength for the day.

 

Swift cometh His answer, so clear and so sweet;
"Yea, I will be with thee, thy troubles to meet;
I will not forget thee, nor fail thee, nor grieve;
I will not forsake thee; I never will leave."

 

Not yesterday's load we are called on to bear,
Nor the morrow's uncertain and shadowy care;
Why should we look forward or back with dismay?
Our needs, as our mercies, are but for the day.

 

One day at a time, and the day is His day;
He hath numbered its hours, though they haste or delay.
His grace is sufficient; we walk not alone;
As the day, so the strength that He giveth His own.

                          —Annie Johnson Flint

Therapy

Over the course of the past couple years I've spent many hours with Jacob in therapy.  Different aspects of therapy have taken place.  Overall he responded with contentment and enjoyment.  Well, last week was a different aspect of therapy.  It was a week of therapy for Paul and me.  We joined Paul's whole family for the week at a resort.  What a week of mental release.  All the couped up stress made it's way out :) 
Paul and I were both physically exhausted when we came home (partly because of the busy week, but mostly because of the extreme heat,) but mentally we both felt so refreshed.  Many times during the week I wished Jacob could be with us as a family, but as we experienced such extreme heat/humid weather the whole week, it was much better for Jacob to be in London with air conditioning.  Paul picked Jacob up on Saturday, so we are together again as a family - thankfully.  

Beautiful sunsets! 

Paul teaching Caleb how to fish.

Caleb's first cast and... he caught a fish!

Adam and Martin teaching the rest of us how to tube :)  Adam tubing is great entertainment!! 

Breanne and Sheryl enjoying tubing!

Caleb perfecting his ability to ride with no training wheels.

The oldest girls with their 5 fish!  I'm not sure why anyone would want to get out of bed at 5:00am to go fishing, but these girls were ready.  By the sounds of it, the fish heard a lot of giggling! 

Jeff (brother-in-law) was either carrying a cup of coffee in his hand or a bucket of ice cold water to target one of the females.  At least when it's 45 degrees (Celsius) in the shade a good water fight feels refreshing.

Sheryl's keeper :) 

The second storm to come through.  Tents flattened (good thing we were sleeping in cottages!)   One thing we found out, the storms coming off the lake are powerful, but over quickly.  The first one lasted about 7 minutes then the sun came out again.  God's mighty power!

Content Days Again

Well, amazing at it may seem, Jacob is having content days.  Something I had ruled out as a possibility.  As the brain regresses, it makes total sense to have more irritability, so the thought of having contentedness again seemed unthinkable.  Jacob was started on a new med a couple weeks ago, and it seems like it is having somewhat of it's desired effect.  This is much to be thankful for!

Yesterday we had the luxury of working with a recreational therapist regarding Jacob swimming.  We have a backyard pool and we have thought it would be neat to be able to have Jacob is there too.  We tried him in an adaptive life jacket yesterday and it worked amazing!  He was in the water for 50 minutes - super calm,  content and relaxed.  What a joy.  Now we can borrow that life jacket and see if he likes it in our pool.  Breanne came along to be my helper and photographer, but instead she was my helper and a dolphin.  She was all over the pool.  I was not totally impressed at first, but the recreational therapist said it was a good thing she came along, because then it gives Jacob a more realistic feel of what it would be like in water with siblings (wavier water and splashing.)  I'm just not sure if she was trying to make me feel better, but it worked anyways!! :)

Yesterday was also a special day for us as we had our new Pastor and his wife visit us.  It was great to be able to talk about our history with Jacob, how the Lord has led us as a family, our fears and joys, etc.  They are an extremely understanding and compassionate couple.  It was a blessing and an encouragement to have them visit.  The Lord provides in ways I don't even think possible.  He is worthy of our praise!!

A Somewhat Long Weekend

In Canada, this is a long weekend - we are celebrating Canada Day :)  The weekend started off with extra excitement regarding Jacob.   Let's just say that after 3 emerg trips, 3 rounds of IV antibiotics, an ultrasound and plenty of emerg waiting, we've had a long weekend!  Jacob has cellulitis, caused from a bug bite.  Thankfully we can treat him at home through his GJ-tube now! That's so much easier! 

This weekend was a weekend of thinking, contemplating and studying.  After spending many hours in emerg and hearing so many sad stories, it makes me realize that so many people are suddenly on a sick bed, where but a few short hours before they were living their day as planned.  This reminds me of what our Pastor said 2 Sundays ago, 'things may happen to us that were not in our days plans, but they were in God's plan.'  That's so true, but sometimes so hard to focus on! 
    
Yesterday marks Jacob being 2 years and 3 months.  This marks an incredible milestone.  Considering Jacob's life expectancy was 5 - 15 months, he has surpassed that by one whole year.  365 days.  Amazing!  I stood humbled, thankful and amazed.  I remember hitting that 15 month mark last year and thinking, things could happen any time.  A whole year down the road, I stand in awe that we are still able to hold, cherish and love Jacob.  It is a blessing beyond words.  It's not that the days are easy, yet when we focus on the ability to still love Jacob, we have much to be thankful for!!

At the playgroup last week, loving the sitting position amongst the balls!  He looks like such a big boy!!

Marije placed Jacob in a laundry hamper - talk about thinking outside the box!!  The crazy part was, he enjoyed it!  I enjoyed Marije's creativity.  What a blessing to have her care for Jacob every week!! 

 

Therapy

Last week Wednesday, Jacob played at the Active Explorers play group at the CNIB (the Canadian Blind Institute.)  Jacob took part last year, and seeing how he enjoyed it, I thought it would be good for him to play again.  They have LOTS of different sensory stations set up.  It's also really neat to talk to other parents.
 
This picture makes me laugh every time I look at it.  He was totally disgusted!!  If you look closely at his mouth you can see it all curled up :)  One of the therapists said that this was supposed to be play time for Jacob, not for mom!  At that time, it was sheer play time for Mom!!  For the record, I took the wig off as soon as the picture was taken ;)

 

Jacob also did amazingly in the small ball room.   This was a new sensory experience and he thoroughly enjoyed it.  There was no puckering or disgusted face this time!  He even sat like a big boy!  What a milestone!!

  Jacob has been going through an incredibly fussy period again.  If only we knew what was causing his irritability!!  He's going to start on a new med to see if that helps - only time will tell.  I'm often apprehensive about these changes, but also understand that we have exhausted so many comfort measures with little or no success.  

One day last week I took Jacob on the trampoline to see if he would enjoy the fresh air (we have way tooo many mosquitoes to take him out often.) He LOVED the fresh air, and he loved the gentle bouncing - well, maybe until his brother found out where we were :)  

Caleb wanted to hold Jacob which I never turn down those opportunities (I was much more thrilled for Caleb to hold him, as opposed to him jumping like a wild kangaroo.)  As he was holding Jacob he began to sing 'O be careful little eyes what you see, for the Father up above is looking down in love, O be careful little eyes what you see.'  He sang every verse...O be careful little ears...mouth...hands....feet.  It was beyond precious.  Of all songs to sing to a brother who will never see in clarity, who will never hear properly, who will never speak a word, who's hands will never have purposeful movements and who's feet will never walk.  I soaked in the love!!   My heart was rejoicing, rejoicing in so many ways.  Rejoicing with the blessing that Jacob has a brother that loves him beyond words.  Rejoicing that Jacob is spared from so many sins.  Rejoicing that even though we can't reach his heart, God can reach his heart, also through a song sung from his brother's mouth in true love.

Caleb singing to his brother who was very cooperative!

Enjoying the bouncing

Today's Meetings

Well, I'm going to start with an exciting story (at least for me it was!)  Today I went to pick up Jacob from the home, CPRI, in London.  He was super content in their snoezelen room when I arrived.  That is always a welcome treat to leave or pick him up when he's happy.  I walked into the room and said 'Hi Jacob.'  Instantly he pouted and did a whiny cry.  To most moms it's not the best welcome from a child, but for Jacob, I'll gladly take any deliberate response!!!! His cry was saying, 'Mommy, please pick me up!!'  I sure did.  He was soaking in the love.  What a beautiful moment.  As I was leaving, the child life worker was thrilled to see Jacob so alert and happy :) 

CPRI had arranged a meeting to get the team together and discuss the current status.   That meeting was scheduled for today, just before I would pick up Jacob.  The only thing I knew about the meeting was that once again I was going to be sitting around a large conference table with people with A LOT more knowledge and education than I have. 
Jacob's dedicated paediatrician was present, along with CPRI's paediatrician.  Lisa Pearlman, Nurse Practioner, was also giving her wise advice along the way!  Wow, I have high regards for that lady.   Many others were there (I believe 13 in total) all giving their input into where we are today with Jacob, and where we are heading.  Paul and I are called to make some heavy decisions in the near future about the amount of care he receives at the homes.  Thankfully a decision doesn't have to be made today!  I need some time for my brain to unwind.   Those meetings are crucial in Jacob's care, but can be overwhelming to say the least.

Three things stood out from today's meeting.
#1 - it was confirmed that Jacob's irritability is progressively getting worse. 
#2 - Jacob is one of the most irritable children that many on the team have followed.  They are also feeling like they are running out of options.  There's not a whole lot of avenues to explore.  Dr. Kerr and Lisa were going to talk with our Neurologist about some medication options.  I'll let them do the research :) and have them let me know what they have found out, and then Paul and I can take it from there.
#3 - we have a GREAT team walking this path beside us!!  Without each and every one playing their part, things would be much harder for us in the home!!   We have been blessed beyond what we can comprehend at this time.  God is faithful!!

Finding the Balance

 

Every parent would understand to some measure how difficult it can be to find the balance regarding raising a family!  Between time, children with different personalities, church functions, extended family, friends and money, just to name a few, things can get demanding and tough!

It seems like finding the balance is an ongoing struggle!  So often I catch myself saying ' it's trying to find the balance.'  To be honest, more often than not, the balance around here feels quite lopsided!  It's tough to get it balanced. 

We need to find the balance regarding time with a special needs, time demanding, energy exhausting son and 3 healthy, typical kids.  How much time do we take for Jacob, knowing his days are numbered, yet not forsaking our other children?  Yes, we are unsure of the length of days with our other children too, as with ourselves, but it stares us in the face every day that Jacob's life is humanly speaking - short.  How short we do not know, but we do know, far shorter than normal!  How do we spend the time with our other children as they also are only young once?  It's not that we can press the pause button and have them pause in life. 

We need to find the balance regarding respite time.  Jacob goes once a month for 3-6 days to a respite home.  Without those homes, I don't know where we'd be - other than we'd long have fallen off the balance!  When he goes, how do we balance our time with family, friends, shopping for necessities AND rest?  When Jacob's home, it's beyond difficult to get out, so many things pile up for that one week a month when he's gone.  By the time the week is over, I'm left feeling more exhausted than when I began.  

We need to find the balance regarding raising our kids with a special needs brother and his care and concerns.  How much do we tell them?  When do we tell them?  Do we tell them that Jacob had a lengthy apnea (not breathing) spell, or do we just put on a good front as if nothing happened?  Do we tell Breanne, or do we not tell her?  If so, how do we tell her?  How much do we prepare them for the days ahead, or do we let them be kids, living the typical care free days?  What do we tell each of the kids as they all handle the situation differently and are at different maturity points?  

We need to find the balance as a husband and wife to have quality time together.  That's tough as Jacob's demands get bigger and his irritability increases.  It's pretty tough to have a heart to heart conversation with Jacob crying hard in our ears.  The more stress that is thrown our way, the more we need each other’s support, love and undivided attention!! 

We need to find the balance with work that has to be done inside the house and out.  I can't function in an upside down house, yet, there are days, I feel like I should invest in a pole vault to get from one side to the other!  It's finding that balance between wanting it done and feasibility.  Its finding the balance to be able to say, ‘tomorrow is another day, and if it doesn't get done tomorrow, we can tackle it another day.’ 

We (I mostly)need to find the balance between getting proper sleep and spending adult time with the night nurses :)  This one is so for me only.  All our nurses past and present know exactly what Paul’s report is going to be if I'm not home - 'Jacob had a pretty good day.  Good night.'  They all get a kick out of it.  My reports don't quite go like that!  Seeing how I used to get out of the house on an almost daily basis before Jacob was born, it was a tough transition to be housebound 6 days a week!    All that said, if I stay up late, it back fires on me, as I then need toothpicks to keep my eyes open the next day.  Balance?  Not found on this point AT ALL!!

We need to find the balance for church, bible study and personal devotion.  Jacob's life is unpredictable, so a set time is not possible, yet time is so crucial!  God must be the focus and centre of our being, yet, it's so easy to have the cares of the day override it all.

We need to find the balance with many other things also. I'm unsure how to find the balance!  It's a constant struggle.  Every day we are faced with the realities that this life is tough, yet, one that isn't without hope.  There is an element of comfort in this all.  Our times are in His hands.  He sees our daily struggles and He can sanctify them.