Wednesday, 24 May 2017
Last night we had a good storm. The power went out just as Kevin and Kai returned home. I just wanted to cry, I knew how the evening would unfold and I wanted to do everything to fix it for him, but I couldn't...
Kai has been struggling the last few days, more vomiting, punching the side of his head again, protecting his ears from all sound...no power means no white noise for him. No air conditioner, no fan, no beat music....just silence...and pure hell...he sat outside for a while, my heart was breaking for him..I didn't want him alone, but it is where he is safe from sound and scent.
Kevin finally convinced him that the generator would make enough noise by his bedroom window that it would be safe to come inside, we would again sit outside so he could be comfortable (I secretly wanted to be with the storm)
It didn't take long, Kai was fast asleep...this is the only thing that relieves his stress and discomfort. I was happy for his sleep and for our break...we could relax, we had no idea when the power would be back on and we needed to be prepared for a long difficult night...
We were some of the lucky folks who had power restored by 8:00pm. We crossed our fingers it would stay on for the night...and it did. We are so thankful for the crews out working in the storm all night.
He woke up this morning happy, full of love and hugs...my Kai guy, my cuddly one...the one we miss...the one we so desperately want back.
I know it's a long road, there will be bumps along the way, there will be storms...but the feeling of relief when the storm passes is just the most amazing thing, there is a silver lining to that storm...I'll find it one day. Until then, I will brave the storm...I will embrace the thunder and lightening that is my child...and I will love every moment of his ever changing mind.
I would step into his shoes and take it all away from him in a heartbeat...he is my hero 💗 and I love him just the way he is.
Until next time 💕
Wednesday, 17 May 2017
I took a drive to one of my favorite places, I need to get to it more often though...like at least once a month! There's this wonderful little gem tucked away out at Interlakes....The Country Pedlar...I love it there. I need to win a lottery...I love everything in this wonderful store...the owners, the staff...everything! I was lucky enough to win a Mother's Day gift basket ( yes I entered...even though I don't like Mother's Day...) and oh my...what a gift basket it was!
Please folks..make the drive out there and say hello, browse the wonderful store and enjoy the world's best fudge💗 You will be so glad you did.
I checked the mail on the way home and my winnings from an online party through another friend arrived....again, blown away, blessed and spoiled...so very spoiled!!!Thank you Tanya for the fun and Thank you Kerri for my wonderful winnings💓
Okay..enough about me....how is Kai...
Well, Kai is Kai...it's tough to explain how he is a continuous changing person....his hands and feet are raw...there's almost no skin. He doesn't complain about it but I know it must hurt. I try to remind him to wear socks all the time, especially after a shower. Maybe gloves?? Anything to stop the picking...he has no finger nails left either, bitten down to the point of nothing left.
He gags and vomits so much still, I worry about about his teeth long term...one thing at a time, we'll fix that issue when and if the time comes...This is the one thing I wish would ease up for him and secretly for me...I do a ton of laundry...I worry about the septic keeping up with the immense amounts of vomit...it's funny looking back to when the boys were younger, Kevin and I had a deal...he dealt with barf, I dealt with blood...he couldn't handle blood, I couldn't handle barf...I have been knees deep in barf...had no choice but to get over it! Yay Motherhood...
He still can't handle much conversation around us. We still try not to take it personally but damn it, it would be nice to be able to parent your child through voice, not texting or writing a note...
For some reason he likes our room. It is bright, full of windows and it's a lighter color than the rest of the house.In our room he will sit and talk with us for quite some time...we bought chairs for the corner of our room so we had a place to sit on the rainy days when we couldn't be outside, similar to a hotel room feel...he loves it in there...we can't figure it out...why can he talk there but not in the kitchen?
I swear some days he's just f*ckin with us....
He is out a lot more, hanging with a great group of kids and being a bit more active. Kai always jokes that he is lazy, I think it's his way of making light of his weight. I still think the large amount of Flouxetine he is on is a part of his weight gain and I look forward to the day he is well enough to slowly ease off of it. For now, any activity is better than none and we will enjoy that he is out with his camera walking a bit more than he was last week.
I had to pick him up from school yesterday, it was the end of the day (2:00) so only an hour left...but when he calls, you know he's done...he came home and slept off whatever it was that bothered him. It's impossible to find out what happened until after he sleeps it off...when he woke up he told me he had a sub in his woodwork class...and he was chewing gum...yup, gum...he was worried about today having a double class with the sub, I told Kai to be honest and polite, tell him why chewing gum bothers you and ask if he would not chew gum while you were in the class. He didn't call so I guess today went well...Thankfully he is enjoying school and is there all day right now. He has a few courses to complete over the summer but seems to be on track for going into Grade 10 with his peers.
He is now seeing someone twice a month, this will go down to once a month as Kai progresses...Kai doesn't really want to go, he thinks he doesn't need the help...but I strongly disagree. I think Kai will need someone to talk to for a long time to come. I hope the support continues, but if it doesn't I will keep looking for the right person to get Kai through some of the tough stuff...
Well, that pretty much sums it up for now. My day was pretty nice so I want to brighten someone else's as day well...I will post this blog on my facebook page (like always) so feel free to leave a happy comment or picture, here or there, for this wonderful gift of tea light candles that was part of my gift basket.
Thursday, 27 April 2017
I need everyone that reads this to understand something....these are my thoughts and feelings...how I perceive that days events....how it affects me... This is my journey with my son. I won't sugar coat my feelings to make anyone feel better. I believe that telling Kai's story from my perspective will help another parent not feel alone, like we have for so long in this walk. It isn't meant to bash anyone, hurt anyone's feelings or to be used in any way that isn't with a positive spin. Yes I have said things in this blog that you may not like, but it's my blog...my feelings and frustrations.
If you have read this entire blog you will know that even in a negative comment there will soon be a positive regarding the situation or person. I am not here to get anyone's feathers ruffled or be a hurtful person...again, these are my thoughts and feelings of the situation.
I decided to ask Kai if he wanted me to take the blog down. He said "No, keep going"...so I will do just that. Keep going, like always, with one foot in front of the other.
Not everyone likes me, not everyone matters 💓
Now, let's move on 😊
Kai is seeing someone once a week right now. Yesterday they talked about the ladder they use in OCD treatment. What steps to take to get to the tough stuff. Easy stuff on the bottom rungs of the ladder, going up to the tough stuff. Kai said next week they will work on relaxation stuff... I know this will be a huge help for him.
He had a great Spring break. We were able to talk most of the day and have great conversations. It was wonderful. But again, in true Kai fashion, it changed. School went back in session and he went back to not being able to have us speak. His gagging and vomiting is horrible right now. Everything seems to set him off. He whistles...all day long...I'm not a fan but man that kid can whistle a tune. I think he could call an exotic bird if he tried hard enough.
He wanted so badly to go to Gram and Pop's for Easter dinner this year. It was one year ago since our last family meal with them at their place. Last Easter was the last time Kai went out anywhere other than Children's Hospital or to Williams Lake for an appointment. So we made a plan. He could eat upstairs in the loft we would be downstairs in the dining room. He would have his earphones and it would be okay. He wouldn't be able to hear us.
We usually visit a bit before dinner, arriving around 4pm. Kai made it until about 5:30pm . He needed his dad to drive him home. In tears..he wanted so badly to be able to do it, to be able to stay. But the noise just got to him too much. He could hear Kevin and I talking and he just can't deal with it. We were so proud of him for trying. I know he'll be able to one day soon. Baby steps...
I know he feels a bit down about his weight. He is still trying to make healthy choices for eating and exercising...but he's a teenager...they all want to snack and be a bit lazy.
His hands and feet are horrible right now. The skin in slowly coming back to his hands. He hasn't shown me his feet in a few days...I think it's because they are worse. He picks the skin off until it is raw..just red sore hands and feet. I know this slows him down walking and being active. I am thankful for the weather improving. He can be out more, even if it's just for fresh air. Any little bit of time outside is good for him.
He started Art on Monday. He is now in school all day long. Except today...he couldn't make it. I know he's tired. He came home from his appointment yesterday and slept for 3 hours. It still takes so much out of him.
He asked me to make a dinner last night for him. Schnitzel and Spaetzle...he loved it, asked for more and I'll be on the treadmill an extra hour running it off today 😭
Kai doesn't usually eat much for dinner, he's careful about the food he asks for. So much makes him gag. He has been eating mostly rice and chicken. Or pasta...always pasta..
Well, that's about all for now. Not much has changed, but it is somehow all different. It still makes no sense to me most days. But we keep going, keep hoping for that miracle switch to turn on in his brain that makes it all go away...
Until next time. 💗
Friday, 17 March 2017
He met V with Canadian Youth Mental Health and sat in her office for almost 1 full hour. I have no idea what they discussed, but he seemed happy at the end of it. He told me he liked her and has another appointment early April. HE DID IT ON HIS OWN!!!! I did not have to be there...I did not have to be in the room at all...I wasn't even in the building! So proud of him. 💚💙💚
Usually at the end of his meetings, he requests Poutine and an Ice cap...we have been working hard with him to strive to make healthier life style choices due to the medication making him gain weight. He has been inactive for a while because of everything he had going on in his world...But that comfort food...he would eat his meal and sleep for hours. I'm sure every meeting is emotionally exhausting for him. They usually are for us. Today was different though. He asked to go to 7-11. He bought a coffee and 6 chicken fries....and then asked to go back to school!! He's not home in bed...he's at school!!
What has happened? Where is my child?? He's becoming the boy he used to be...the one we have been fighting so hard to get back...the one we used to know. But again, I'm cautiously optimistic...a good day doesn't mean this is over...I still can't speak in front of my child. There's no noise from Kevin or I in Kai's world...if there is, it's very minimal...Misophonia gets a big middle finger from me every day...
We all know that this is a work in progress...finding the right Doctors and Therapists, Psychiatrists with open minds willing to learn about new conditions, the right information, the right medication...We all know this doesn't just "go away"...it's a road we will have to travel on for many years to come. Days like this just remind us how far he has come. His hard work is paying off and he sees himself getting better. He sees the benefit to proper sleep, diet and exercise. He is making the right choice for his mental and physical health, I couldn't be more proud.
Well, that's all from me today folks
I hope you enjoy a safe Saint Patrick's Day💚
Until next time.
Saturday, 11 March 2017
In our past year we have lost...but we have learned from it. We have moved on and become stronger and more resilient because of it. We realized our dreams were just that, dreams...but our goals were what we lost site of. We were in such a hurry to live a dream, we forgot a few things...Thankfully we were able to find our right path again.
If it weren't for Kai's struggle last year, we would probably still be muddling our way through trying to find the pot of gold at the end of the rainbow. He made us all slow down and take notice of the world around us and the world within us. He has taught us to be bigger and better in life than we ever thought we could be. He has taught us compassion and love for the underdog, not pity, not sadness, compassion....on days we felt like we were the underdog, he picked us up and put us back on track. If he can get through his days, we can too....his days are rough and I don't know how he does it most of the time. He does it, and he ends up giggling...I hope his sense of humor will continue to get him through. His days are full of pain, physical pain...sadness, anger, frustration and giggles...he always finds time to giggle.
One year, appointments, doctors, waiting rooms, trips out of town, hotel stays, silence, medications, research, research, research... it really does feel like it's been much longer.
We look at how the future will be for him. I'm nervous about some things...when you tell someone you have a mental illness there are many barriers placed in your way. These may be invisible to most, but they are there...the stigma surrounding mental illness shakes me to the core...every single day....I try not to dwell, it only makes me angry.
He really has come a long way in one year. I know each day he will continue on this amazing path of Mental Wellness. I know as he grows, he will learn about what he has and how he is the only one that can manage it all...his hard work and efforts will determine the outcome of it all. I know he will succeed. We are raising a young man that will teach the world something great (even if it is just how to fart on the carpet and make sound...talent right there folks...he's got it! 😂 lol)
Not all Anniversaries are sprinkled in sugar and fairy dust...some just kinda bite...like this one...however, I am not bitter about it. Everyday I strive to learn more about my son and how I can help him now and prepare him for his future. For all of us, it is one foot in front of the other, everyday.
So Un-Happy Anniversary,
I am going to enjoy a nice glass of wine, shed a tear of happiness and look forward to the future.
Until next time 💗
Thursday, 9 March 2017
Today was it...Kai's last day with Catherine...and how fitting that he wouldn't get out of the car. They started in the car with their first meeting and that is how it ended, in the car.
She taught us so much. It's okay to not be the perfect parent, we all make mistakes. She was there when we thought there was no hope. She never let us down, we felt safe. We will be forever grateful for her, our angel with hidden wings. 💖
I cried...I tried not to. But I did. This is the first person we've moved on from in Kai's journey. A tough transition, but a step in the right direction. My head hurts...will the next person have the same connection with Kai? With us? Will we feel safe, will we feel heard?
Only time will tell. Whether the next person is the right fit or not, we now have the skills to push through the tough times and keep on going.
After our good-byes, I dropped Kai back at school and I stopped in to the grocery store for a few things for dinner. I was greeted at the end of one of the aisles by a familiar friendly face with open arms. How on earth did she know I needed that hug today? Once she saw the tears, she hugged me harder. Public crying....so not cool....lol but man I was thankful she was there. Always a positive person, always with a listening ear, never judging. 💗
I came home feeling like I had been hit by a truck...so many emotions in one day...grateful again for beautiful friends and wonderful family. Still so much to learn though...so much to do, so much to discuss with Doctors old and new...
Our journey is ongoing and I'm sure that will be our story for many years, ongoing...I am okay with that...it's progress and it's positive. There are times when it's two steps forward and one step back. I'm okay with that too...it's still progress.
Until next time 💕
Friday, 3 March 2017
The power went out shortly after 2pm...no big deal, he's still in school...he won't be home until close to 4pm.
He texted me from school..."Mom, there was an accident on the road the the highway is closed...there's no power...I'm staying in town until Dad gets me"
Okay...this is better for him..he knows the rules and usually hangs out at his Uncles store...he's safe, it's good.
Koby and another friend stayed in town as well...the buses were held up due to the closure..all is good, they are all safe and responsible. I'm not worried.
Around 5pm I start to think..the power isn't back yet...our house is oddly silent...no noise..nothing...Panic sets in...He'll be home soon. He has constant noise from his air conditioner, fan and computer....nothing is working...there's no power....
HOW do I fix this before he's home....I can't...I can't make it safe for him...I have to warn everyone that he is coming home to a nightmare...
Kai (as always) is two steps ahead of me...."Dad, i can't go in the house, there's no power...that means there's no noise...I'll have to stay outside"
Kevin ( super awesome amazing Dad!) came home and brought out the generator...lights up the back yard and makes noise....but this comfort is short lived...Koby doesn't want to be outside all night and I totally understand.
Again, Kevin (Dad of the year!) pops out the back door lock an feeds an extension cord through so Kai can be inside and comfortable with his Ipad while we go outside and light a fire.
The power came on shortly after 8pm...all is finally well and safe in Kai's world...
He tackled it with strength...what a trooper...he could have just crumpled, but he persisted and told us what he needed to get through...not too many demands, just what he truly needed tonight...so proud of him😁
So, please...the next time the power goes out and you post a shitty comment about how it screwed up your day, sit back and think...It could have been worse....
I'm sure the person in the accident didn't set out to ruin your day...I pray the family and person(s) involved are okay💗
Until next time,