THE DAM BROKE

Well, yesterday morning, things kind of went sideways on me  -  or they went exactly how they were supposed to.  In God's world, everything moves in Divine Order.  

I have had a cold since Tuesday, January 25, 2022.  We did run a rapid test to find a negative result.  It does not matter, really, I have been isolating since then.  This cold will run its course but I chose to self-isolate.  

But for Colin who visits us every Sunday  - it's a big deal.  He calls every single day, every single morning.  His first call today, was at 7:39 am, followed by 3 more calls before 9:00 am.  The last call was when I had to be very firm with him and to tell him that he could not come for a visit and NO we were not coming over to have supper with him.  

I don't need to be reminded that he functions at a 12 - 13 year level and sometimes it's more like he functions at a five-year-old level.  Trying to reason things out with him is exhausting and I sure did not have the energy to do that then.  By 9:00 am he clearly understood but he was VERY unhappy about it.  This crazy COVID stuff has us all feeling confused and chaotic.  I know that I made the right decision.

In the meantime; I received a message from a friend of our son's.  She messaged me to thank Colin for the artwork Colin had created for their summer home.  

Two years prior, this friend had mentioned to Colin that she liked the painting that Colin had created for our son & daughter-in-law.  That little compliment inspired Colin and he could not wait to get to work on this project for them.  Carrie's family just received it yesterday even though Colin had created it for them almost 2 years ago.  

The message indicated that their family is so touched that Colin would think enough of them to do this custom piece for them.  And Carrie's words simply triggered that part deep inside of me that is reserved for moments like this.  BOOM -  the dam burst wide open. The kind of crying that found me sitting in the shower bawling my face off.  I am crying still with gratitude for the love and kindness this young woman spoke to me to relay to Colin. It was my immense pleasure to convey this to Colin.  He just beams from ear to ear and says not much.

Do you know how patient Colin has been??   He can outwait the best of us I promise you.  He is VERY patient and beyond mature at times.  It would be hard to compete with him.

And yet other times, it feels like the smallest thing can trigger him into having a temper tantrum and total meltdown, like a five-year-old.  I simply have to be patient.  He teaches me something EVERY day. I am a lucky Mom. 

I have been his Mom and caregiver for 49+ years and if nothing else I have learned that I will be his caregiver forever and ever.....I really need to have very strong boundaries and be sure to take good care of myself first.   It is the hardest thing to do and I continuously learn this every single day.  AND no guilt.  

I am thinking that pretty much every single parent out there knows what I am saying.  Balance and boundaries; it's a dance every single day.  When I don't put myself first; I will pay a price and the result is resentment; which does not serve me or him or anyone in my family.  I have learned through the Grace of God, that I have choices every day and the first choice I make is to LOVE myself enough so that I can continue to love him and others every day.

Simple but NOT easy.  Be amazing  -  you know you are.

Happy New Year - 2021

The start of a New Year requires a letting go of the old.

Yesterday, December 31, 2020, was not my best day. Colin had a doctor's appointment at 9:00 AM. He has changed medications and we have had several appointments recently, not fun for him and certainly challenging for me.

Colin's health is delicate in many ways in that he had a heart attack in 2017, and of course, he is diabetic. Back in 2017; his diabetes was actually out of control, very concerning for all of us who care for him. He was very unreliable with taking his meds. He did not live with us and his new room-mates had not taken on the role yet of dispensing his meds.

All of that has now been rectified. His supportive room-mates are responsible for dispensing his meds and Colin accepts and welcomes the structure and support that Ken and Linda provide. This year has been life-changing for Colin in that his supportive room-mates have introduced a meal package to come to Colin three times a week for nutritious and healthy eating. It's also an opportunity for Colin to work at developing his culinary skills. His meals are always served on his good china plates with silverware and candles in place. Imagine if we all did that even just once a week? Linda helps in the food preparation on the condition that Colin's place is nice and clean. This motivates Colin to get his dishes done and put away.

The progress since 2017:

1. His type-2 diabetes is under much better control.

2. His overall health and well being has improved dramatically.

3. He is motivated to keep his place clean (for the most part).

4. He has accepted help from his supportive room-mates.

5. He has accepted a change in medication from daily injections of insulin to one injection once a week. Ozempic is also an appetite suppressant with a variety of side-effects. He is still adapting to this.

6. He is less dependant on me - I have “delegated” and “released” the responsibilities of a variety of tasks to his workers/support staff as much as possible.

7. He continues to develop his creative skills with his amazing artwork - especially during these pandemic times.

8. He bowls with Special O - for more than 25 years now.

9. He is always up for a walk - he loves to walk.

10. Wearing a suit or tuxedo is what you will find him wearing as almost EVERY activity unless we strongly encourage wearing something more casual.

And there may be more - He continues to amaze me. 

BUT yesterday was a difficult day for him and me.  Going to see Colin's endocrinologist is very trying for him. I picked him up as I usually do - he was running a little late, but no big deal. I usually allow for delays, I like to be on time. As soon as I picked him up - he was distant and critical of my driving. This is a little irritating but does not really affect me... I have learned to overlook that. 

Then when we arrived at the PLC (Peter Lougheed Hospital), where masks are required, I reminded him and he objected, saying that there will be masks when we arrive inside - OK Colin. When he was handed the mask in the hospital, he put it on upside down and I supported the worker by repeating what the worker had said - which triggered the 5-year-old response from him. It is very upsetting to have him do that - anywhere - anytime - but I did walk away and proceeded with paying for parking and proceeding to the actual Dr's office. Where there were 2 more outbursts always directed at me. My job is to maintain my composure and obtain all the information from the doctor. But I am dying inside.....absolutely crushed. Colin is very INTUITIVE and closely connected to me and he KNOWS - there is no communication required. However, I am stuck in the mire of accepting what is, but it FEELS like I am being attacked.

I was successful in completing and getting through the appointment. I drove Colin home and on the drive home explained to Colin (with a great deal of control) that he needs to decide who will take him to these appointments in the future....because I want to quit.

I broke down and cried for many hours when I got home - I am broken - I am finished. I cannot subject myself to this any longer. What, of this, can I control and change? Only me. I cannot change Colin. I can understand that this is very anxiety-producing for him and that he cannot find the words to articulate this.....but I cannot do that for him. I need to take care of me..... otherwise, I cannot be of service and help to Colin.

How do I take care of myself??? I connect with God - my Higher Power - my Daddyo. EVERY DAY.  I surrender and I humbly ask for the support and direction I need, EVERY DAY. I go for walks, almost EVERY DAY. I take care of myself and ask for help EVERY DAY. I share my pain EVERY DAY. I practice gratitude EVERY DAY. I write down the miracles of my day EVERY DAY.  I remind myself EVERY DAY that where there is FEAR, there is no room for LOVE.

I know that I am not alone..... I have an amazing network of amazing friends and family..... but in this walk sometimes I am ALONE. I am OK, he is OK - we are all OK.

We are off to celebrate the NEW YEAR at Colin's place where I know that every day is a celebration for him. He teaches me to live in the moment..... Will I ever learn??  My INTENTION is to learn, EVERY DAY and I intend to make 2021 amazing and to accept everything that comes my way.

Good Morning Mom

I have not shared a blog with you in a very long time.

In the last week or so, Colin's early morning calls are remarkably happy joyous and free.  It never ceases to amaze me!  I say hello around 6:30 am to hear him shout out with a gleeful good morning Mom!!!  I can tell from his voice that he is beaming from head to toe.  Happy and energetic.!!!  There is no special reason or cause for his happy greeting  -  it just is.  Like him.  Colin simply is.  Life for him is pretty simple and uncomplicated.

He knows that he is taken care of.  If there is a financial need, Mom will write a cheque.  If there is a need to pay for his artwork Mom will write a cheque and maybe even deliver it for him.  His rent is paid, he gets groceries once a week with the help of his supportive roommates.  The biggest challenge in his view is getting his suits drycleaned  -  LOL.  This is very important to him.  He wears suits all the time and so it's imperative that they get cleaned on a regular basis.  The important thing for me is to let him make MANY of his own decisions.  I need to mind my own business and he will remind me when I am NOT minding my own business.   Well, because sometimes, I am just a Mom after all.

It's easy to think that life is easy for him.   I believe that he DECIDED a long time ago that life is good and I believe that he decides every day that he just lives life on life's terms.   Easier said than done.  I need to apply this idea to my life   -  DECIDING is a big word and words have a huge impact.

He does function at about a 12 - 13-year level.  So he is living in an (almost) 47-year-old body with the reasoning of a very young adolescent.  That sometimes means meltdowns right in the middle of the Winner's store, or in the middle of the street when we are out doing errands.   When that happens: he is at about a five-year level.   And I am at about the 13-year level. 

My life with him is far from perfect  -  I want to make that perfectly clear, but when he calls with his absolutely happy voice, all the negative stuff melts away.  I am immediately recharged and ready to take on another day, maybe even another week. He is truly amazing.  GRATITUDE is another important word.  I practice gratitude every day. Even the challenging ones.

He is learning something new every day.  He is certainly fully engaged with technology to his fullest capacity.  He has almost mastered texting and forwarding photos on his cell phone.  He blows me away at how he learns this.  He does not let me teach him ANY of this.  I believe he learns this from some of his friends.  (YIPES  -  it makes me wonder  -  what else does he learn from his friends???)

He teaches me every day, every single day  -  DIGNITY is the most important word.  Respect and dignity.  We all deserve respect and so does he.  I don't think he expects this  -  He simply knows it.

I think he KNOWS more than I ever will  -  he still teaches me every day  -  I try to extend respect and dignity and most of all love  -  that one is easy.  How could I not love him???  

A RESUME???

Being the mother of a special needs child is a 24/7 job.  This is not a surprise  -  but sometimes I ask "could it be 3 - 4 days a week instead of a 24/7 job"?  Caregiver from afar, but the caregiver never the less.  Colin is fiercely independent and does not live with us, but he is also very needy.  

I had no training for this job (no mother/parent ever has);  I really believe that we learn as we go and we need to learn to trust our intuition and more importantly; ask for help.  It's really important that I forgive myself for being less than perfect.  I also ask other family members and learn from other's experiences.  And most importantly, rely on God for help.

There is a list a mile long  -  Wecare and Home Care; doctors, dentists, foot care, dealing with AISH, always being his advocate.

I have recently been in touch with many other parents, especially moms, many of them much younger than I with special needs kids who are also much younger than Colin (he is 46 now).  It is a rich blessing to be surrounded by such amazing young women.  They really are amazing. 

As many of you know, Colin was brain damaged at birth and also has developed Type 2 diabetes with a heart condition.  I thought by this time that I would be letting go of him more and more, but these medical challenges have drawn me in so that letting go is not an option.

There have been more health challenges in the last year and a half and I am feeling close to burn-out.  I catch myself thinking and saying out loud that I want to resign  -  I am tired of the stress and the demands.   But in sharing and talking with my dear amazing friends (and family), I have come to realize that quitting simply is not an option.  At this point, the choice is to slip into self-pity or ACCEPT with gratitude.  To that end, I have realized that I am at another level of ACCEPTANCE.  This is not going to change.  He is not going to change and I simply choose to learn to delegate and ask for more help wherever possible and continue to do what I can.

Above all, I choose to take care of myself.  Get rest, eat properly, go for my walks; where I pray and meditate.  I share with my amazing friends (talking is part of my processing) and I also take in lots of networking events, where I always meet some more amazing women.  Women who are brave and courageous and who are supportive and encouraging to me.  They INSPIRE me.  I breathe again and smile.  There is a God and He really is there for me and He knows what is up and what the future holds.  I simply choose to keep working on that resume!!!  And have another drink of that ACCEPTANCE and spike it with GRATITUDE.

A TRIP TO THE BARBER

Its Saturday and I usually don't hang out with Colin.  However, there is always a, however, he wanted a haircut.  I don't know about you, but when I want a haircut I usually want it now.  He is a fanatic about getting his hair cut.  What I am trying to say is I allowed him to talk me into taking him for a haircut.

This is not really about the haircut, but about the fact that I got to spend time with him today.  I had several errands and I really did not like the idea of having one more errand.

I met up with him, because "Mom, you don't need to pick me up  -  I will get there on my own".

We met at Tim Horton's (one of his favourite places) and then we drove over to the barbershop.  In the spirit of letting him make some decisions on his own, he picks the barber.  A small courtesy that provides DIGNITY for him.

While we are sitting there waiting; he chatters away about all kinds of things.  There is quite a large waiting area.  He talks loudly when he is excited; animated is the word.   Nothing really important but he is a storyteller and he does not appear to be affected by anyone around him.  You have to understand that he is dressed to the NINES  -  he looks like he is on his way to the Oscars because he is wearing his "tails" as he calls them.  It really is a formal tuxedo and he wears it allll the time.  Yes, he does.  Complete with a white shirt, a beautiful tie, and cufflinks.   Just a little bit of an attention getter.

While we are sitting there waiting and I am listening and acknowledging him and his stories I notice how some people in the waiting area are trying NOT to stare or "judge" but I know they are.  Colin is unaffected by people who might be staring or judging.  I have gotten used to it as well, but it's interesting to watch.

I look over at him and see him suddenly and clearly.  You know when you have a moment when everything stops and you really see someone???  It was one of those moments.  I suddenly see that he is aging, yes my boy is showing signs of health issues, heart attack and diabetes is taking its toll and my heart skips a beat and slows right down  -  I stop hearing what he is saying and I just see the lines on his face, the scars from the wounds on his face from the meds that he is taking.  WOW, I think how could this be?  This does not make me feel angry, worried or upset in any way.  This was truly a spiritual moment of stillness, love, acceptance.  I think maybe a God moment.

He will always be my beautiful boy (well my two other boys are beautiful too, after all, they are my sons).  But his face is the face of innocence.  Divinely created as we all are, but he has the precious face of innocence, lacking in judgment, self-pity, jealousy, victimhood, martyrdom.  These are all traits that almost all of us have.  He is for the most part completely free of these.  I see that in this precious moment.  

And then the barber calls him and life moves on.  But I thought I would share this moment with you because it had a huge impact on me and I don't want to forget it.

Grateful for this and many other moments with my precious son.  And now I am off to answer his 10th call of the day.  Likely just wants to say "goodnight my beautiful mom".

What are you grateful for??

PJ's and Fire Trucks

Its Colin's birthday on July 10th.  This year was his 45th birthday.  It was also a Monday.  I golf on Monday evenings in a lady's league.  It's a lot of fun and I don't miss my opportunities to golf.

In order to celebrate Colin's birthday, we invited him to join us at our Condo's Stampede BBQ the day before.  Most of the residents in our condo are seniors and most are well over 70 years of age. They made a little bit of a fuss over him and he loved it.

On Monday, the day of his birthday; I received several phone calls from him.  Its not unusual.  But at 2:30 pm; he called and he and his dad worked out the details regarding the fact that they were going to meet for supper without me to celebrate Colin's birthday.

When they finished, Dennis, Colin's Dad, handed the phone back to me and I am: ok Colin NOW what???  Its only the 7th or 8th call today so I am half listening.  But what he said caught my attention.  

Colin:

"Mom, there is smoke coming from the upstairs and the fire alarms are going off".

Me:  (and I am screaming)
"What, where are you?"

Colin:
"In my basement suite."

Me:  (I am still screaming)
"Get outside, get out, go into the back yard, right now, hurry up!!!"

Colin:
"But Mom, I am still in my pyjamas!!!"  (PLEASE stop laughing)

Me:
"Colin, it does NOT matter, get outside now!!!"

Colin:
"OK"

In the meantime, I am dialling 911 on my land line as well as texting his supportive roommate.  911 agrees to send a firetruck and the roommate is on her way home.  The firemen arrive before the roommate does and they do what they do best  -  break down the front door as there is obvious smoke billowing from the house and they deal with the source of the smoke.   

I kept Colin on the phone with me the entire time so that I could ensure that he was safe at all times.   I instructed him to get to the driveway; which he did; so that the firemen could know that he was there and that he was ok.  In fact when the firemen got there we tried to give them the code to the garage door so that they would not have to break the door down, but they did not have time for that.

The smoke damage to the upstairs is extensive.  Major smoke damage actually.  Thankfully Colin called me and we were able to prevent any further damage.  Thankfully, Colin's suite did receive only minor smoke damage, but not much.

We are so grateful that Colin is OK.  Grateful that Colin LISTENS to me sometimes!!!  

We are grateful to the Calgary Fire Department.  They were quick and efficient.

Colin's roommates Ken and Linda are devastated.  Their entire house has to be cleaned, dry cleaned, painted, washed, EVERYTHING in their house had to be removed.  Its three weeks since this happened and they are still not fully recovered.

This event confirms for me that Colin is very independent and capable in many respects, but the fact that he called me rather than 911 directly; worries me.  I believe that if I had not been available, he would have taken some action and gotten himself out of the house and finally asked for help, but precious minutes would have gone by without action from him.

Hopefully there is never a "next time", but if there is, perhaps Colin will do the right thing even if he is in his pyjamas!!!

S U R R E N D E R

Today in the middle of the day - when I had an uneventful day - very quiet and I even had a nap kind of day - I broke down in tears and suddenly realized that I wanted someone to take care of me. I realized that I am tired.

Its been a 3-month run of medical appointments, doctor's appointments, telephone conversations, appointments with home care, late night calls with home care. Not to mention filling out the necessary paper work. More runs to the hospital with Colin because of a wound on his forehead which won't stop bleeding. He is on blood thinners so this is not uncommon. His out-of-control diabetes produces skin issues. Then having him freakout in the middle of the hospital “Rainman” style because he was suddenly afraid that they might admit him again.

Late night negotiations with Home Care (the visiting LPN's) to knock on the door one more time please. Colin has a habit of falling asleep in front of the TV and sometimes does not respond, or worst - he has “decided” that he does not want to co-operate with that particular LPN - “she's mean Mom”!!!

Booking dental appointments - ensuring that they have the latest list of medications/prescriptions. Special O needs that list also. So does Indefinite Arts. As does C.A.S.S.

Are you tired yet???

At 44 years of age on January 11^th, Colin had a heart attack. We found out during his hospital stay that he in fact has 7 blockages in his heart and it truly is a miracle that he survived. To complicate this; Colin was diagnosed with type 2 diabetes about 7 years ago. A stent was installed but open heart surgery is not an option because his type 2 diabetes was out of control. We are doing everything we can to ensure that his diabetes settles down.

Are you worried yet???

Dignity for Colin has always been our primary goal. Not monitoring his eating habits and his lifestyle choices may have resulted in the situation that we are in now. But he is fiercely independent. Now his lifestyle is being closely monitored by myself and by his supportive roommates. He is now on insulin once a day, which he can administer himself but he needs to be supervised by home care so that we can ensure that he is in fact taking this medication. This is not going well as his fierce independence rears its ugly head and insists that he knows how to do this!!!

Colin's emotional maturity is at about 12 – 13 years of age - what would you do with your 12-13 year old??? What decisions would you make?? His health and welfare are taking a back seat to his dignity - but should it?? What is most important???

I am tired - I am doing everything in my power to “take care of myself”. To balance this out with my personal interests and needs. But sometimes - it just becomes overwhelming and I just want someone else to do this and I want someone to just take care of me!!! I am making sure that I go for a massage, haircut, a new yoga class, pedicure, naps in the afternoon, coffee and phone calls with my good friends and family. I am NOT eating well, but I will get on with that. I am so grateful for the amazing support I have surrounded myself with.

Because, in fact, I have been doing this for 44 years. I have been Colin's MOM for better than 44 years now. He is a gift; a blessing - I can't say that enough. He has definitely made me grow up and he also keeps me young!!!

The only thing left to do is to Surrender - to the God of my understanding - as long as I do this - I am not alone - I am walking hand in hand with my Higher Power. Just for today God, could you go to the next meeting with Home Care??? Of course You will, You will be right there with me - I simply have to surrender and You will be there.

Thanks for listening.