some of this....some of that....

Today in June 18th, 2018.....I have a lot on my mind but will try to keep this short.

It has been a rocky road the last few months with Jordan, he is still not strong enough to be at school every day. He has been going once or twice a week depending how he feels. Summer break starts in a week so hopefully by September he is even stronger and ready for more.

Last week Jordan would have graduated high school with all of his peers if he was a" normal" teen. However because he is Jordan he gets to stay in high school until he is 21 yrs old. I have mixed feelings about this. For Jordan I am so happy he gets the socialization, he gets to be around the EA's and staff that care for him so much, he will meet new students and he will love school. As a mom I mourn the idea that I don't see him walk across a stage and graduate high school, I don't get to see him in cap and gown getting sports or academic awards, I don't get to help him fill out college and university applications and have late night discussions about who he is going to be as he matures.....

HE WILL BE JORDAN!! Yes I am thankful he is here and for all the lessons he has taught me, but YES I am allowed to grieve what will never be, what most parents take for granted and what most students see as a milestone, my son will never reach. It saddens me even if for just a moment before I celebrate the wonderful blessing that is my son.

This is often a reminder for parents that our kids are growing up and soon will be adults and need us less, for me this is a reminder that Jordan's needs increase, he needs me more and there is less and less help for him.

It is bitter sweet, but like normal we will wake up and smile tomorrow and handle whatever the day throws at us. He gives me strength that is undeniable, gives me love that is unconditional and teaches me every day more about life than I can articulate.


I am training for Jordan and my next run together. I fear his jogger might not last many more runs, it's so old and wore down but we are doing it. Of course the natural choice for him and I to start running together again was the London Southern Ontario Epilepsy - Seize the day 5km run. the date also marks the 1 year anniversary of everything changing for Jordan last fall. We are surprised he is still here, his doctors have no answers as to why he is still fighting or how he has the strength but he is and so.....WE RUN!!

In closing I will leave you with something Zander said about Jordan last week. We were in the supermarket and he saw the lottery sign and said wow Mom $60 million is a lot of money, what would you do if you won. We then had a conversation about a house built to accommodate Jordan's needs, luxuries that we can't imagine, super cars, dream vacations etc.....and Zander says...."You know what I would buy Jordan Mom, I would buy him the best doctors, the best researchers and the best medicine in the world so he could talk, walk, play baseball and live like you and me and he wouldn't be sick anymore".....My Heart Is Full!!!

Sorry this post is all over the place, sort of like my brain lately. Sooo some of this and some of that...

Happy News, What does today look like?

March 19^th Jordan had another neuro checkup and everything was good, he has some tone back in his right side even though he still doesn’t move his right leg at all and his right hand movements are not controlled he is healing. Neurologically he was getting better….how did this happen? I asked his doctor if we were in the clear and he said honestly he had no idea, anything could change at any moment, because they have no idea what is causing Jordan’s body to attack his brain we are just playing a waiting game to see what he does next. I don’t like that answer but I can live with it. We did a full assessment on Jordan and he had gained 8kgs since the gtube surgery…..AMAZING!! The neuro team joked that Mom had also gained 8kgs since this all started. Needless to say I gave them the stink eye and told them listen, Mom needs popcorn and chocolate because I haven’t slept in 7 months so back off, and we all laughed. It’s true, mom has gained about 8kgs also ha-ha whatever, I’m still 25yrs old and I will lose it quickly (shhh don’t tell anyone that is a lie)

March 27^th Jordan was set to go to school for his first day in 7 months, how did we get here? I am amazed by this little man every day. His body is changing, the weight gain, puberty has started due to the weight gain, let’s not even talk about those changes (BOYS are gross), he is happy and starting to thrive, the good days outweigh the bad days 7/1. He is the toughest, strongest most amazing miracle I know. He attended school and was so happy to be back, he was exhausted after but we have a plan, a new routine. Jordan is all about changing the groove of our family to meet his needs, screw what anyone else needs. So he will now be attending school on Tuesdays and Thursdays. He was so happy to see the school bus pull up and he was getting a ride. I cried, a lot. Letting him out of my sight, where I can’t jump if something happens is difficult but I keep telling myself between his nurse and his EA’s he has great care at school and they will call me and 911 if anything happens. So deep breaths Mom, what will be, will be.

This is our new groove, school part time, still many follow ups with neuro, keep a close eye on things, increased seizure meds, gtube, weight gain, puberty, fighting with feeding pumps, trying to find diapers that fit him (which has been an expensive but funny experiment), taking the bad days with the good days, trying to keep a smile on our faces and not worry about what tomorrow will bring. Jordan is happy and we will follow suit.

“THERE IS GOING TO BE VERY PAINFUL MOMENTS IN YOUR LIFE THAT WILL CHANGE YOUR ENTIRE WORLD IN A MATTER OF SECONDS. THESE MOMENTS WILL CHANGE YOU. LET THEM MAKE YOU STROGER, SMARTER, AND KINDER. BUT DON’T YOU GO AND BECOME SOMEONE YOU ARE NOT, CRY, SCREAM IF YOU HAVE TO, THEN STRAIGHTEN OUT THAT CROWN AND KEEP MOVING FORWARD LIKE THAT BEAUTIFUL QUEEN YOU ARE”

HOLY HELL......part #2

Part #2

Nov 21^st Jordan was admitted for preop, his g-tube surgery went very well, Neuro surg was in the operating room at the same time because they were considering an operation to replace both ends of his shunt as well. Once in surgery the neuro team decided the shunt was in great condition and they didn’t want to touch it. Phew one obstacle hurdled. We were relieved surgery went so well, hopefully this would be a short hospital stay 3-4 days. Jordan healed well from surgery and general surg was impressed with how fast he popped back considering everything he had been through. The neuro team did a full assessment and they were happy with how he was progressing but they wanted to redo the MRI just to make sure something alarming wasn’t happening. The plan was MRI on Nov 24^th and home that evening. We packed up and were ready to go home. Jordan went down for his sedated MRI and when we came back up to the floor the Neuro team was waiting in his room for us, they had the results immediately. I was shocked to see them; they said “Sit down Mom you aren’t going home”. They then told me the right side of his brain was showing signs of swelling and they believed what happened to the left hemisphere back in September was now happening on the other side. They said they had no idea what was happening or what was causing this, we went through an investigation plan, another LP (Lumbar puncture/spinal tap), CT Scan, Shunt Series in Nuclear Medicine, Blood work, Metabolic testing etc. I took a deep breath and asked them if this meant he could wake up one day and be paralyzed on the other side of his body or suffer another extreme seizure and they said yes. Another deep breath Mama. They said his brain had already been through so many traumas they didn’t know how it would handle more traumas so soon. They immediately put him on a 48hr EEG to watch brain function; 2 days later they came in and told me he was having seizure activity on the right side of his brain which had always been the healthy side of his brain. Again breathe Mama.

After initial tests came back the Neuro team started to consult with other neuro teams, they had no idea what was going on in his poor little brain or how to stop it from getting worse. They wanted to try a high dose IV steroid but that was a last resort. His body was basically attacking his brain as if it was a foreign entity. How does that happen? How does your body decide your brain doesn’t belong? I was so confused and so were they. It seemed every day they told me they had no clue what was going on and they were just going to do more tests. The positive was Jordan was awake and very happy. He was giving the nurses much entertainment and many laughs. They started calling him the old man of the floor seeing as he was on the peads floor and just 2 months away from technically being and adult.

We had now been in the hospital 2 weeks and the Neuro team decided to try a round of IVIG meds to see if it would halt the brain cells from dyeing. The left side of the brain that was attacked in Sept was now shrinking because of the dead brain cells and the right side was swelling. IVIG meds started and we wait…..Another MRI and no changes. Last resort was fast approaching and we had a team meeting and decided the high dose steroids was the best option. I asked if this was a life saving measure or just a trial and error and was told both answers were possible at this time. They didn’t think Jordan would survive anymore trauma so we had to try everything to stop this from progressing. Everyone was so confused because clinically Jordan was well, he was happy and alert. According to his MRI he should have not been. So we started the steroids, after a few days they repeated the MRI and it seemed the steroids were working, neither side of his brain was progressing. It seemed Jordan was coming home for Christmas, so 6 days before Christmas we packed up and came home with more steroids, a gtube for feeding, a slew of new meds for seizures and a hope and a prayer. They assumed we would be back between Christmas and New Year’s but at least he would be home for the holidays.

I honestly don’t know how I would ever get through all of this without so much love from everyone. THANK YOU doesn’t seem to be enough, friends who bring food to the hospital, coffee, the huge quantity of coffee I consume, cards, texts, visits, hugs, Kleenex for the tears and jokes to make me laugh when I don’t know if I will ever smile again. Family, my parents, aunts and uncles, cousins, grandparents, I can’t tell you how much I love you all. Late night and early morning calls because I don’t know if I am coming or going. To Jay and my other kids….phew, you guys give me strength, love and so much support. In an instant you drop everything to come to the rescue and help Zander maintain some sort of normal life while I am dealing with everything for Jordan. I don’t know how we all survive this and face each new crisis with dignity but I know without each of you I couldn’t do what I do for Jordan.

 Everyone calls me superwoman/wonderwoman but without my team of avengers I could not fight these battles.

Anyone who knows Jordan knows he hates Christmas so he wasn’t too concerned with it but I was happy to have him home. I was exhausted, emotionally and physically. However we pulled it off, planned Christmas, did all of our shopping, prepared a meal to feed an army and celebrated Christmas with family and friends.

Jordan progressed well at home and started showing signs of healing, was this the Christmas miracle everyone wished for? Was this him saying…nope not this time, I am not done fighting? It was both. He had good days and bad days, he slept 22 hours a day but was gaining weight and when he was awake he was very happy, his personality started coming back and he laughed all the time. I was still so worried because we could wake up tomorrow and everything could change. His 18^th birthday came and went and he still had good days and bad days. We had follow up after follow up with the neuro team and they had no answers just more scratching of their heads and high 5’s.

We were given the go ahead to send him back to school part time when he could stay awake long enough to last a day at school so we started getting things prepared for that. 

HOLY HELL......literally Part #1

Sept 2017-Jan 2018 Part #1

Well again I have not written in a while. The last 7 months I have had a lot to say but didn’t know how to express it. I guess I was waiting for clues from Jordan and he isn’t giving me a lot to work with right now. So I will start in September 2017.

I woke up on a Monday morning to get Jordan ready for school like any other day. When I tried to wake him he wouldn’t wake, not completely strange for a teenage boy to not want to wake up on a Monday at 6:30am for school. So I let him chill while I went and made his lunch and breakfast and tried to wake him again. He again was resisting, I thought ok maybe he has had a seizure through the night and he is really wiped out. So figured I would change him and get some clean jammies on him and bring him downstairs to relax. While changing him I noticed his right leg wasn’t moving and when I moved it, it flopped over. He had no tone in his leg, at first I thought maybe he had hurt himself and dislocated his hip. I started to change his shirt and I noticed his right arm was doing the same thing as his leg. I know he wouldn’t have dislocated a hip and shoulder at the same time that would be some freak incident. I started to get worried that he was experiencing paralysis but tried to stay calm. I finished changing him and carried him to the living room and called his neuro team. After talking to them we decided a trip to emerg was necessary.

Jordan arrived in emerg and went into another seizure right away. We got meds on board and they called the neuro team to come right away. Then started all of the tests and assessments.  Jordan was indeed paralyzed on his entire right side, his left pupil was fixed and dilated and he was very nonresponsive. I was scared but remained calm. Neuro came back after the initial CT scan and MRI and said they didn’t see signs of a stroke but wanted to do further testing. We were admitted to the peads ward and followed by Neuro for 23 days. Over those 23 days they told us he didn’t have a stroke, he did have a stroke, he had paralysis, he didn’t have paralysis, they say something on his MRI’s and they didn’t, his CSF (brain fluid) had increased cells showing signs of infection but no infection or bacteria grew in the lab cultures. It was the most bizarre 23 days. He didn’t wake up for the first 9 days of those 23 days and when he did finally wake up he had no function, no emotion, and no personality. For lack of better words the lights came on but nobody was home. I had possibly my first ever complete breakdown when it comes to Jordan. When his head neuro came in after day 10 and told me he had suffered a severe seizure in his sleep the night before we came into the hospital, I broke down and sobbed. His poor team has never seen me cry like that and I think they were worried because they stood there staring at me like I had 3 eyes. They told me they still weren’t sure what was causing all of this to happen but they thought he was suffering from HHE Syndrome.  Hemi convulsion Hemiplegia Epilepsy Syndrome. They didn’t know what long term prognosis was or how he would recover as it is not common.

Over the next few weeks Jordan started to wake up a bit more and perk up, he still had no movement on his right side and he had lost the ability to swallow therefor he was being fed through an IV and an NG tube through his nose. I am so thankful for everyone’s support when I cried, vented and needed company, food, coffee or just mindless chatter. It was the longest 23 days of my life waiting for Jordan to give me some sign of something. Finally he was discharged to come home with physio and a surgery date for a permanent feeding tube. His surgery was scheduled for the end of October so it wouldn’t be a long wait as he was discharged Thanksgiving weekend (Canadian Thanksgiving) I was nervous bringing him home because the doctors really didn’t know if this would get worse, happen again etc. but I knew home was better than in hospital.

Thanksgiving week is the crazy week for my business. I do 1200+ tarts and 200+ pies in less than a week. I had already taken preorders before this all happened so I had no choice but the show must go on. Thank goodness the nurses love defect pies as payment to take great care of my son. I would spend 8-10 hours at the hospital every night, a few hours with Zander and then all day baking and the nurses would page me if the medical team needed me. It was a crazy week but we survived.

2 weeks later we went to the hospital for surgery, when we got there we found out Jordan’s surgery had been cancelled for an emergency case and lack of beds so we came home. His surgeon called the next day and said they had a new surgery date for mid-November. Back home we went, physio daily, fighting with the NG feeding tube that Jordan hated so he pulled it out many times. I can honestly say shoving a tube down my sons nose and throat repeatedly so he doesn’t starve is not the easiest thing I have done. Sometimes I was frustrated, sometimes he was. Sometimes I had to walk away for a few minutes and try again. But hey at least we were home and Zander got to spend evenings with his Mama. I beat myself up sometimes when I feel stretched thin between the hospital and other kids. It sucks not knowing where I should be at what times. I guess we just all do our best. 

My ALMOST adult child….and my dreams

I haven’t updated the blog in quite some time. I suppose I didn’t know what to write, my brain has been going a mile a minute all the time.

Jordan turned 17 in January and in 8 short months will be an “adult”….let’s think about that. He is 60lbs, 5’1” and is diapered, eats pureed food only essentially baby food, he cannot walk or talk and he will be an adult. This scares the hell out of me. What do I do with an adult child that cannot do anything for himself….well everything I currently do right??

In starting the transition to adult care has been eye opening. Jordan’s entire team will change, Ortho Surgeons, Neurology, Neuro Surgeon, No more general pead physician, his Physio, Occupational therapists etc all change. The unit he stays in while in hospital changes, every person that has cared for him for the last 17 and a half years changes. He can stay in high school until he is 21 so at least that doesn’t change for him for a few years yet. Jordan also does not do well with change or new people. He likes his routine and something as simple as a change in caregivers can cause him to spiral and his seizures to increase, failure to thrive increase etc.

Now let’s talk about funding, haha…basically all of the funding he might be able to receive now STOPS! Believe me the amount he gets now is nothing to write home about but it does help cover some of his diapers and medications that are not covered under private medical benefits. For years I have not even applied for many funding benefits because I figured we could provide and we should leave that funding to the families that REALLY need it. I quit my career to be a fulltime caregiver for my son (that is what a parent does right). We gladly went from a 2 income family and lowered our monthly costs to survive without my income. I slowly started my own business because I am by heart a work-a-holic and staying at home was killing me slowly. I have hired some amazing people to help me when Jordan needs more care and I cannot do it all. I have come to learn as Jordan transitions to adulthood there is zero funding for the middle class with “infirm dependents”…Is that how my special needs son will be labeled from now on?? An infirm dependent?? Why does that sound so harsh to me? Basically Jordan is my life, I am his life and without me he has no options to survive other than a long term care facility…in simple terms a retirement home. Can you imagine sending your 18 or even 25 yr old child to live in a retirement home?? I certainly cannot. I am his mother, I am his caregiver, his nurse, his advocate, I give him all of the essentials to live and can’t imagine not doing so.

As my business picks up and I am faced with decisions do I go bigger…do I take the opportunities presented to me that I always dreamed of or do I just do what I do now and get by. Make Jordan my priority and my life. What happens when he is gone and I have nothing? What happens when I have completely lost who I am and I am nothing more than a caregiver. What happens if I do take these opportunities and then Jordan gets sick again and ends up in the hospital? Do I then have to choose between my business and being there for my son? He has never had a surgery, a needle, a seizure, a blood draw without me. Can I forgive myself if I am not there all the time? Can he forgive me? I know none of us know the answer to every question life throws at us but I have had to make a lot of difficult decisions when it comes to Jordan, can’t this one be simple?

Why do we feel Mothers guilt, why do we never put ourselves first, why do we question everything? I know Jordan would kick my ass for not doing what makes me happy if he could. I know he would hug me and tell me to trust myself. I know he would be proud of me. I also know he is my hero and I am so scared of letting him down or not being there when he needs me.

 I tell other people every day to jump, JUMP BOTH FEET IN, follow your dreams, do what makes you happy, fulfill your life, make your mark on this world and leave it better because you were here. So easy to say isn’t it?

I am trying to find the courage right now to JUMP in many aspects of my life. So please if you have any extra to spare can you send it my way? I have plenty of strength and determination….I just need a little more courage. Funny the woman that is scared of nothing (except spiders) is scared of herself and her life decisions.

I have forgot about myself for a long time, I have allowed others to forget that I matter. I have existed to make others’ lives easier, simpler, and happier how do you go from that to making yourself happy? I know how to make this happen, and I know what I need to do I just need a little courage.

You see I am not as strong as you think, I am not invincible, I am not superwoman. I am a woman standing in front of a mirror asking it to give me the courage to make myself matter…… 

Who Am I??

Who am I?

In having a child like Jordan I think sometimes we forget to take time for ourselves, we get lost and forget who we are. I have had a difficult time turning 40 this last week and recently have taken some time to reflect on myself. Who I am, what I have done and what I have overcome.

I am: Part 1

A sexual assault survivor

A domestic assault survivor

A teen Mother

An Ex-Wife

A Mother of a gay son that has been bullied most of his life

A Mother of a special needs son that has spent years in and out of the hospital

A Mother of a daughter that has been through tragedy

I am: Part 2

A survivor, a mother, a wife, a daughter, a sister, a niece, a grand-daughter, a best friend, a caregiver,  an advocate, a chef and caterer, a college graduate.

I am a fierce survivor against all odds. I will always come out the other end stronger.

I am a teenage mother who raised a strong daughter to put herself first, to be anything she wants to be, to believe she is beautiful and only deserves the best.

I am a mother who raised a son to believe he can be true to himself, he always has someone in his corner and no matter what I am always here for him even if he strays from my arms.

I am a mother who has held my son through medical procedures unimaginable to most, I have placed him in a surgeons arms many times and prayed that they would be placing him back in my arms. A mother who has spent years teaching him something as simple as blowing a kiss or holding a sippie cup.

I am a mother that finished my high school education and college education while being a mother.

I am a mother to a young firecracker who is a true gentleman, a selfless boy who is full of humility and humor. These 4 babies are my biggest accomplishments. They are my heroes and my reason to breathe.

I am a women who always puts everyone else first, a woman who has seen incredible struggles, and a woman whose strength even shocks me some days. I am a best friend and cherish my friendships. I am a beautiful 40 year old woman who has lived the life of an 80 yr old woman. I have had nothing and I have had everything and I can tell you I would rather have nothing and be happy and true to myself than to have everything and be truly lost.

I am a woman that has spent her life thanking everyone for helping me, a woman that has always focused on who has made me a better woman, who has helped me through tough times, who has picked me up and dusted me off. I am a woman who would rather not talk about herself but have the focus on others but, I am a woman that is learning to make myself a priority. I am also a woman that is learning I am the rock and the glue that holds everything together. I need to thank myself some days. I need to celebrate who I am, what I have overcome and what I am yet to do.

I think back on the last 40 years and I know there is nothing I can’t get through, I know there is nothing I can’t accomplish if I truly want it. I know I am strong, intelligent, outspoken after all I am an Aries/Taurus Cusp. We are the cusp of power and after 40 years I am finally starting to realize my power.

No matter what life hands you know you can get through it, alone or with a team. Life will make you bitter or better. Let’s choose better. I have decided I am going to be the best 40yr old version of me I can be (even if that means still telling everyone I am 30, still not ready to be 40 but a little more comfortable with it)

Celebrate yourself, your accomplishments, your struggles and your triumphs no matter how small. 

WE DID IT!!!!

Time for a feel good update:

Well we did it…..Jordan and I completed our very first race together. The Forest City Road Race 10km.

We didn’t finish in the best time I had hoped for but considering I was sick with nasty allergies and nursing an injury to my groin we did well. We finished with a time just under 80 minutes and that includes stopping for a pee break and to check Jordan’s hat several times.  Approx 526^th out of 677 runners. Not bad for our first attempt.

Pre race I felt great, like I had this in the bag. Mid race photos clearly show my face as “someone kill me now” and Jordan laughed and clapped his hands the entire 10km, post race I was so glad we completed and really wanted a steak (still haven’t had that steak 2 days later). Jordan won an award for being one of the fastest times in his age bracket….glad to know I run as fast pushing a jogger as a 15yr old boy does solo haha!!

I have many emotions regarding this race. As most of you know I made a promise when Jordan was a baby that if he ever walked I would run a race with him. He started walking in a walker at physio, and really taking steps not just standing there waiting for someone to push him but really walking. Due to his illness and my lack of nerves we were unable to compete until this year but, I decided it was time to hold up my end of the deal. So run we did.

I never realized how much different it is pushing a 15yr old child in a huge jogger compared to running solo. I ache in spots I didn’t know I had. My biceps and triceps are burning still, my hips feel like I am 90yrs old and yet I am so thankful for the experience and I am planning on training with Jordan to do the half marathon next year.

Everything we have gone through with Jordan in 15 years has made me a stronger woman, a better mom and a determined, stubborn runner. I had many thoughts throughout the race, some of which were, I must be insane to do this but most thoughts were great. I told myself when I wanted to stop at the 7km mark, we are ¾ of the way, we are not quitting now. Jordan has never had quit in his mind and I knew I couldn’t either. He has fought so many times for his own life, he has fought pain and agony, he has fought against all odds and so I had to fight. I told myself…. “Come on girl we don’t quit, you will never forgive yourself if you don’t push on”. I did stop and walk for a bit just to clear my head and take a few deep breaths, I almost cried at a few points when volunteers along the way were cheering us on and telling me how proud they were. How could strangers who I never met be proud, I know they say it to all of the runners but it really felt great to hear. One fellow runner that stayed within 20 feet in front or behind us the entire way told me she admired me for pushing Jordan the entire race and she knew if she could keep on pace with us she would finish too. I am glad we could help her to finish.

It has taken 2 days for the race to fully set in and my emotions to catch up to my body. I figured writing the blog post mid day was safer than at night perhaps after a glass of wine when the tears would flow. I am proud of myself, I am proud of Jordan and I am so honoured that along with generous donations Jordan and I were able to raise over $1035 for Thames Valley Children’s Centre. I am so glad that as we crossed the finish line we saw our family and our best friends there cheering us on. I wanted to reach out to our other children and squeeze them but knew I would cry. I wanted to hug our friends but also knew I would cry. So I gladly took our medals from the race volunteers, pulled the jogger over to the side and grabbed a bottle of water and took a deep breath. Ok maybe 100 deep breaths. I have many people to thank for standing beside me while I did this, to inspire me to run and keep running, for organizing this amazing event and to my fellow runners and friends that also ran this weekend. THANK YOU.

TVCC is an amazing organization and through their assistance Jordan has started walking in his walker. Their team of staff helps make miracles happen. To each and every one of them, I also run for you!! To my husband and my children, yes even the oldest who doesn’t think she is my baby anymore. Thank you for supporting me and I also run for you. Don’t ever give up.

“It doesn’t matter where you finish, it only matters that you stood up and finished what you started”