HE KNOWS

I know that it does not seem possible but he can be very far from me, but he knows my every thought and he especially knows my feelings.

Just yesterday, I was sharing some personal stuff with some friends and I was quite emotional (what a surprise).  Dennis was sitting beside me and at that very moment, Colin called me on my cell phone, at that very moment, I believe that he knew that I was crying, which I was, and it was bigger than both he and I  -  he had to call.  It happens over and over and over again.  It never ceases to amaze me.

I have been a good mother I know for all three of my boys.  I nurtured and guided to the very best of my ability.  I surely made some mistakes.  Yelling and screaming was my biggest flaw.  It was a learned behavior and I slowly had to delete that behavior from my psyche!!!  I constantly had to ask for patience. I am not a naturally patient person.  Having three boys challenged that to a great degree.  I am sure that you can understand. I am so grateful for the opportunity of having these three boys.   They made me grow up and become the courageous and strong woman that I am today.  It fills me up.

When Colin was growing up especially in the first ten years of his life, he was in fact quite fragile. When he got sick  -  he was usually very sick.  His upper respiratory system was subject to a lot of colds.  His immune system was compromised.  With my two other boys, when they got sick, I could medicate them and put them to bed, or get them set up on the couch in the living room and they would respond well to some TLC. However, with Colin, he was very needy.  I often wonder if it was because when he was born, he was placed in an incubator for the first ten days of his life without any contact from either Dennis or me.  The bonding was lacking and because of that he was always very "attached" to me.  He wanted to be held a lot. When he got sick there was no putting him down or laying him down so that I could attend to meals and housework.  I remember making meals with him on my hip, especially when he was sick.  We certainly bonded then.

Is it any wonder that I weighed about 95 pounds during that period of time???  haha -  that was a long time ago.

He definitely is intuitively attached to me.  It's a good thing and a bad thing.  The bad is that he experiences my sadness and confusion.  The good thing is that he is intuitive.  He KNOWS when to reach out  -  it is a spiritual thing.  ALL good!!!  makes me grateful.  

COVID 19. - DID I GROW???

In the last 18 - 19 months, since March 2020  -  the question we are all asking ourselves is how did I do???  Did I suffer through this or did I flourish? Did I make some changes???  Did I make some decisions??  What was the impact of COVID on me and my family and friends??

For me personally  -  I became aware of serious pain in my upper torso, mostly in my shoulders and my back generally.  I thought it was stress (do ya think???).  But as the year progressed, by the end of 2020, it became like serious muscle spasms rendering me helpless. but I finally got some relief by getting a prescription of pregabalin and Tylenol twice a day and a steady intake of Tylenol every day.  I then started to see a physiotherapist and massage and finally saw a chiropractor who was brilliant.  He requested x-rays, which showed NOTHING, he then requested that my doctor requisition an MRI. which my sons paid for.  

The MRI took place in June and then thankfully in early July I met with a Neurosurgeon.  The diagnosis was a growth on my spine which was causing severe compression on my spine.  The growth is called meningioma which is a non-cancerous growth.  By this time, my entire body was experiencing numbness and tingling  -  NOT a good sign.   My surgeon picked the date of September 8, 20th and thankfully that is the date that the surgery took place.  The morning of my surgery, I arrived at the hospital and registered.....all surgeries in Alberta were canceled due to COVID.  Thankfully, mine went ahead .  Then began the process of healing from the surgery.  There are so many reasons for being grateful..... but the big one is that the pain that I had been experiencing in my upper body was gone.  GONE!

Through all this process that I was experiencing  -  Colin's life became unmanageable in so many ways.  Please note that I said his life became unmanageable.....he did not.  With the COVID restrictions, his life during lockdown could have really turned ugly.  His activities included bowling on Saturdays and two trips to Indefinite Arts, as well as 3 visits per week with his worker Brian.  ALL of these activities had to come to a stop.  We were worried sick about his mental health.  He lives alone and TV programs are limited in their entertainment value for him.  I must say his supportive roommates, Ken and Linda who lived upstairs were absolute angels. Linda offered to go get his groceries.  And then as the year progressed, she offered a new eating program for Colin.  Colin being a serious type 2 diabetic.  I believe they saved his life.

I regret to say that I completely walked away from this valuable source of healing...  It is now 2026 and about 5 years later.  I can't say enough about Ken and Linda. -  Colin still talks about them to this day.  he had the opportunity to stay with them for six days and that certainly helped Colin realize that they still care for him deeply.

I am 78 years of age now and honestly am currently struggling with osteoporosis and arthritis.  This results in my needing to take care of me and honestly that is very challenging.  I have lots of family support but none of them live here.  I am richly blessed with amazing friends and they keep me going.  That is a story in itself but this is about Colin.  

I must say that I believe that Ken and Linda suffered from burnout and finally asked that Colin move on. -  He suffered emotionally from this and ended up living in 5 different situations.  Most of them VERY challenging.  

Over the years he has become fiercely independent; which is a really good thing but also difficult to manage.  If he has a doctor's appointment for instance, and he does not want to attend....there is NOTHING I can do about it.  It's funny but I try also not to let it stress me out-  We get the job done.  The doctors are very understanding.

ONE DAY AT A TIME   -  with the help of MY HIGHER POWER.  We get through this.

thanks for listening

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??