A Picture is Worth a 1000 Words

Goodness a whole year later and here I am posting another Christmas picture. I had great intentions to continue my monthly blog yet life as a family of five told me sleep was more important than blogging! We are all doing incredibly well. 

Alistair is now in grade three and obviously loves getting to school and seeing his buddies. He definitely has a preference to certain friends which is neat to see. He gets in his walker everyday at school and gets encouraged every step of the way by the buddy of the day. Even though he won't be walking independently the fact he loves to be upright and moving is so good for his brain and body. Alistair had a significant surgery back in August lasting 6 hours. He got a hole in his diaphragm repaired, a hiatal hernia repair and a fundoplication. It was a tough week to ten days and then he just perked up and we haven't looked back. Actually he got to get off one of his meds due to the surgery which was definitely an added bonus! The little trooper is due for another major his surgery as they are dislocating. Unfortunately he will be in a spica (body) cast for a good six weeks. I forsee a rough go through that period but hopefully he reaps benefits like his last surgery.

 

My little Francis obviously took a MASSIVE growth spurt and has now started kindergarten. She absolutely loves it! I miss her like crazy but she enjoys every second of school. She has continued to be a mother hen with all her classmates and is a little old soul. School was definitely an easy transition since we spent so many days, weeks, and months there over the past years. Its lovely to see her being a little sponge. This fall she has enjoyed going to gymnastics and we may continue cross country skiing in the New Year. I'm just attempting to figure out how that will look with Alistair in his cast. Everything seems to pan out though so we might just go ahead with that.

Luella is growing into a neat little spit fire. She's full of spunk and individuality. Definitely a feisty little misses but hey she is two! I'm so happy I have her home with me for several years as I'd be going into withdrawal if I was kidless at home. She loves Francis to bits and misses her a bunch while she's a school. Mind you as soon as we're all home for the day she gets her fill of the big sis.

Jason and I are loving our little clan of kids. They keep our brains and bods busy with their energy level and spunk. Jason had a busy summer with his company and I enjoyed the life of mama. We did get away for a nice holiday in the Gulf Islands with my mom and brother which was  a great brain break. I'm dabbling a bit in the nursing world just to keep up my license. So life is good!

We plan to have a mellow Christmas with the family here and hope for a bit of snow so we can enjoy the outdoors with the fluffy stuff! I hope you all are having a wonderful December. 

Merry Christmas and Happy New Year

To ALL

Grounded for Christmas

One never knows exactly how the day is going to unfold but generally you have a pretty good idea. One morning mid November I got my typical early morning wake up call from the whole clan. It started with Luella bellowing out to be grabbed from her crib so she could have her morning snuggle and breast feed. Shortly thereafter her favorite man in the whole wide world entered the living room and she got down from the couch to head over for her next snuggle but instead she collapsed with her first step. There was no guessing something was wrong. She fell down on her knees and then tried to get back up and kept falling to the right. It didn't take Luella long to get frustrated with the situation as she has been very mobile and active since about 11 months.

The poor little thing couldn't even sit. I knew I had to take her into Emerg. Of course I thought worse case scenario and wondered if she was dealing with a brain bleed or tumor of sorts. As usual I just went into overdrive and I couldn't let myself process these thoughts too much as I'd become too fragile. Plus I do have a tendency to jump the gun and expect worse case scenario.

Anyhow we got to Emerg and were brought in right away. Luella ended up getting bloodwork and a CT scan which all came back negative...... thank goodness. Then she was assessed by the resident pediatrician and after they communicated with neurology at Childrens it was determined Luella needed to be medivaced to Children's Hospital.




















Fortunately at this point Luella's inability to remain upright was starting to resolve and by the time we were met by the Paramedics Luella's symptoms had all resolved. You can see she is back to normal in this video clip. CLICK HERE What a whirlwind and how bizarre it was to suddenly be dealing with the medical system at this level with my littlest little munchkin.

Once we got down south Luella had an EEG (assessment for seizure activity) followed by an assessment from the head neurologist and a cardiologist at Children's Hospital with which no cause was identified.

The neurologist advised that we don't continue with more invasive tests such as an MRI and LP as she resolved so quickly and had no pre-existing concerns. Although it was an unnerving experience I'm ok the tests stopped when they did as I feel the same as the neurologist that it was a one off situation. Fortunately, once again my friends Kim and Don were kind enough to put us up while we were down helping to ease the stress of the whole situation. Three days after this whole fiasco started Luella and I were back home safe and sound.

What this experience did do is ground me and remind me what truly is important in life. My family. Those piles of laundry, water droplets on the windows, and the never ending trail of items to pickup really don't matter.

If someone you loved suddenly was gone forever you would only wish you had a little more time.

I got more time.

MERRY CHRISTMAS

Birthday Girl

 This little lady was so thrilled to turn FOUR! It only seems like yesterday she was learning to crawl and we were certain we had created a kidlet with dark hair and ringlets for life!

 She truly cracks me up. I love the blatant honesty and zest for life. Everything seems to interest her and she has a question for everything from the purpose of the yellow lines on the road to whether when your dead if bees will be there too!

She definitely keeps me on my toes attempting to find a simple yet truthful answer for all our fascinating questions. I love it....most days! Yet at times I'm sure the needle got stuck on the record player when I think there is no way I could here MOM MOM MOM MOM MOM MOM.....one more time in a row.

Francis is lovely for making me remember to see and look for all the wonderful simplistic things that surround us and revel in it.  Yet, there is no doubt that there is a good chunk of me in her make up as she is one feisty little character when she wants to be. I'm constantly telling myself to stop and enjoy these wonderful quirky moments as it surprises me to no end how fast this little lady will pass by ages and stages.

I find it entertaining how she can't get enough of pink and purple and everything "Frozen" these days but then turns around and loves to fish with her dad and go "jumping in muddy puddles".

 We have had her birthday out at the farm two years in a row now and I've been told this is where its at from now on. I love it as very little planning needs to happen. They just come out and start running and exploring which is so fun when a group of them are together.

 Miss Francis continues to be her caring and inclusive self. She gets frustrated with her brother and bops him on the nose yet turns around and begs to feed him and crawls up and bed and asks to sleep with him the night. It'll be interesting to see how this relationship evolves as her sister Luella has definitely proved to be a little bit more entertaining however she surprises me how she considers her brother. She's a little thinker.

As usual we had a little family birthday party for her and then a kidlet one and it was all about food, family and fun!

 Already I'm trying to slow things down and take in all these lovely moments. It may sound cliche but I can not believe how time flies!

JUST a Mom

I've been thinking about the whole "Just a Mom" statement and truthfully some Moms are "just a mom". There are kids out there who go to school without breakfast, come home to an unstable/unsafe home, who have no one that cares about there where abouts, there has basically been no thought put into what they have created and how these children will exist in this world. Then you get the moms that are striving to be supermoms and never feel like they have done enough, their plate is always full, they are running from one appointment to the next, they attempt to keep up with the visual of what social media tries to make people believe is "normal" to achieve for the average human being on this planet. Where truthfully it's the most unrealistic goals/ideas out there.

In my head I've been thinking about how "just a mom" can be compared to someone that is self employed. You have to find the right balance for you and your "job" to get things streamlined. Also what works for one self employed individual wouldn't work for the next as the variables are completely different. There is no perfect template. One can delve into other peoples ideas and trial them out in their own environment but truthfully its not a one size fits all world. Plus a lot of self employed people have their "businesses" totally flop. Then they have to re-evaluate what went wrong. If and when they will try again and see if they can be successful the next time. Some people change their business idea completely while others get the opportunity to revamp, re-evaluate and try again. Where others should never have started a business in the first place.....and yes I'm still talking about being "just a mom".

So onto myself as a mother, I've been trying to revamp and re- evaluate myself. I know sometimes I get a heck of a lot more credit then I think I deserve solely because Alistair is my son. But I've had some not so proud moments. I've had times I've struggled immensely with the reality of being a mom and not just because Alistair is who he is but the massive curve my life took once I had children. I was a free spirited, jump on the next 747 to where ever and whenever the heck I liked, and I grew up sailing the open ocean for 4.5 years never knowing what the next port would provide for exciting stimulation. I grew up a free spirited gal. After high school I spent 2.5 years back packing around Europe by myself and working with sheep shearing gangs and absorbing the culture around me. Jason and I met on my return home and life continued to be easy going, relaxed with a lot of exciting unknowns. I love change. Then I become mom. No its not a negative thing at all but holy heck its a huge change from the wandering women with no ties and excitement for change. Then to top it off, to have a son that you couldn't tuck under your arm and continue to live this ever changing life took a hit. Yet at the same time I think my pre-kids life also helped as there was no normal continuum with Alistair either. Lots of appointments, communicating with all sorts of people that I have never met (which I love to do), and coping with endless change. I had thought if I just dig my heals in and put all my energy in to my little man that I could make things "right". I didn't think he'd be where he is today but no one else did, specialist or not. So that's where things started to teeter for me. I'm not a homebody type and for three years I was pretty darn housebound. I believed if I could put in as much effort as I could in those first three years I'd make some magical changes and impact Alistair to a greater extent then it did. I know he benefited hugely. I don't think I could've done more. But damn it was hard on the brain.

Then I had Francis. She brought me back to reality and provided some normalization for us all! Whew good timing Francis! But I was still pushing for Alistair. I still hadn't found balance. I had a hard time visualizing my future not living within four walls for the rest of my life. Unlike children that go through a tough time (for the mama) such as "terrible twos" or "twinky teens" Alistair will just get to be more difficult in the sense of responsibility. I never thought that in the past but as he has grown and I've been exposed to more parents with special needs children similar to Alistair....life doesn't get easier. He gets bigger. He won't be a cute little child forever so all that money people donate for the cute poor little kids will disappear. As he leaves Elementary school for high school his class mates won't be fighting over him as they do now. Then when he leaves high school there is no program to drop him off at. Then he's back to being 100% our responsibility. Then it'll be time to start a society in his name and possibly buy a home for him to live with a couple others and run that home on his behalf for his care. This is done with grant money, government (welfare equivalent $$) and money we've banked ....I'm told. All I'm trying to say is its easy to let oneself get overwhelmed, mentally exhausted from the reality, bitter, angry, and financially distraught.

But I've always loved life too much. I don't want a life of exhaustion and anger for myself let alone the rest of my family. So once little miss Luella was conceived she was my motivation for attempting to find a balance. It had to be done as I was still on a not so healthy road mentally and physically. I have never taken meds for my mental health but perhaps at times I should have. I don't really know that for sure. But what I do know is I needed to find a healthier path and fast.

So what did I do? I decided not to re-write a book that was already written (which I find a lot of people do in a wide variety of situations). So I started to look and listen to those that had lived it. One thing that I remember my father saying is that one can always learn something from anyone even if its a path, decision, or idea you don't agree with. A typical sentence that always caught my attention was "I wish I had". When I started to see a common theme among parents I decided they couldn't all be wrong and used that information to help myself find some balance and contentment in life. What are some of the themes I came up with?

• #1- ACCESS RESPITE ASAP. "it'll be the best thing you ever did for you and your family", "you will wonder why you didn't do it sooner", "you will be a better mom", "Alistair will enjoy going".....Now that Alistair does go to respite on a monthly basis I can say all these statements are true although I still have major pains of guilt and sadness that I have to even consider respite.....but I'm still glad he "goes for a sleep over"
• #2 DON'T OVER SCHEDULE THE FAMILY. It seems to be a huge theme/trend these days that if your kids are not programed up the wazooo you haven't got them in enough stuff. "If you think its crazy now you just wait until your kids are older" "You'll be running from one appointment to the next and have zero time for yourself so enjoy it while they are young" I feel that parents are stressed and catering to their kids at a ridiculous level. It seems like the kids are running everyones lives and the parents then say "I can't wait until my kids are old enough to move out" Well no kidding! You'll finally have some bloomin down time! These parents are not only exhausted but financially strapped. "you just wait. my kid loves being in all of these things. How can I not put sign him up next year?" Of course they do! I'd love it if someone catered to me left right and center with all these fun and stimulating things too on an endless basis! I'm not against putting my kids in stuff but people are doing it 24/7!
• #3 TAKE CARE OF YOUR BODY. A lot of parents in my situation with a non weight bearing child are physically taking a huge toll. They are dealing with compressed discs in their back, tendonitis, hip pain, neck pain, lack of energy, physical exhaustion and the list goes on...So with passing the good ol' #40 I've been attempting to get to the gym, make better eating choice, and focus on feeling strong rather than squeezing into the right (or wrong) pant size.
• #4 MENTAL PAIN. Wow when one gets talking to people there is a ton of individuals out there struggling mentaly with life. But the whole mental thing is still so hush hush when reality is why wouldn't the brain struggle....every other body part does when its not taken care of!                                                                                                                                                The guilt that goes hand in hand with having a handsome boy like Alistair is never ending. One can always do more. Plus these little people can't do for themselves. Therefore when you see such a positive and joyful reaction when you do interact and stimulate them its heart breaking to see them lying and staring at the ceiling awaiting your return. Little ones like Francis and Luella can happily entertain themselves for blocks of time. But then their is the guilt of not balancing the attention over to the typical kids. Plus the mental stress of having to be involved with specialists, schools, healthcare etc...advocating is exhausting and its very common to not be considered a credible resource or strong advisor. Its a balancing act getting respect from those that work with Alistair yet pushing/advocating for him enough that they keep motivated for his needs. The mental one is a biggy. Its never ending and at some point one has to find balance or you get bitter, angry, and irritable. Life's too short for my life to encompass that.
• #5 BALANCE - There are so many areas that need balance. Its easy to get over involved or consumed by Alistair and his needs but then the rest of the family takes a toll. They need mama and wife as well and its unfair to them and Alistair if I don't find a way to balance my life throughout all of them.
• #6 CONTENTMENT - I strive to be content in life. I envy those that are. My life was pretty stimulating as a child. Sailing from country to country. Being totally immersed in a wide variety of cultures, geography, and experiences. Now my life is very scheduled and consistent. It's a huge change and finding a way to be content and at peace with this has been a challenge for me. Its coming though.

Anyhow, lately my biggest revelation/focus is that my kids and husband could care less about the state of the house. I do. But they don't. They all want TIME and would rather have TIME than clean walls or a clean fridge. So needless to say the house is taking a bit of a hit. Don't get me wrong I've never been no fabulous house keeper but when things do start to appear chaotic around here my spine does start to crawl and I have to do some superficial cleaning so at least my eyes see order.

So basically I've been doing a lot of pondering as well as attempting to take action following my mini assessments in order to continue to enjoy this world and life I am so privileged to call my own.

Unconventional Christmas

One thing my childhood taught me was how to accept change whole heartedly and make the most of it. As you may have read in my last post my kids Papa died suddenly in an accident just prior to Christmas. Jason was definitely heading back for the funeral and it was quickly decided he would stay for Christmas as well.

I have realized with many things in our lives that its the adults that get hung up on details, events, and situations whereas children are much more resilient to change. Time and again I've put more thought then necessary into topics and situations prior to discussing it with Francis to only realize how accepting children can be.

They don't have the clutter of information in their brains to complicate an already complicated situation. Jason headed home to Manitoba to be with his Mom and family for ten days over Christmas. It was where he needed to be.

Fortunately the kidlets were all healthy while their dad was away making life much easier on my end. Christmas day we all moved to Grandma's farm and stayed until Jason returned on the 29th.

Uncle George came home for Christmas as well. Having the extra arms to hug, cuddle and feed made my life all the easier.

Jason flew home on December 28th to all of our delight. We had a mini Christmas on the 29th which included a few presents under the tree, steak and lobster (Jason's favorite), as well as  a family viewing of the Disney classic Frozen.

Funny thing is I've boycotted the show since it first came out. I had gone to buy the DVD when it first hit the stores and I refused to pay $25.99. From then on I just decided it wasn't necessary to get Francis to watch it and believed it gave me some relief. Why? Well I've never seen a Disney show marketed to the extent Frozen was.

Every grocery store, drug store, general store, gas station, and hospital was/is full of Frozen parapinelia. So I figured if she didn't know anything about it it would safe me a lot of headache and it did! However, now having seen the show I have to say it was super cute and well worth watching several years later when I could rent it for $5 and watch it with the family.

After Dad had been gone for ten days it finally caught up with Francis. She just  snapped and couldn't get grounded no matter what I did. It wasn't until Dad came and tried to calm her that it became evident that's all she wanted was her Daddy.





















It was beautiful to see how his hugs and closeness brought her peace. Again the importance of spending time with your loved ones at Christmas and not putting the emphasis on stuff as in the end we all remember the time......

 PS! Alistair's school put on another amazing evening Christmas concert and Alistair got to be Frosty the Snowman for his class production. All the kids were so excited for him it was awesome. The efforts and interest the whole school puts into Alistair still astounds me. Its a lovely gift!