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”

Jordan's Message - Love This had to repost!!

What OUR Special Needs Family wants you to know!!

I have thought long and hard about this post and I wasn't sure I wanted to write it. There are many like this floating around the wonderful world wide web but this is how I feel. 

These are things this Special Needs Family wants all others to read and understand. We are not Superheros we are just a regular normal family dealing with sometimes extraordinary circumstances. Our children are the superheros....yours and mine alike.

1. Just like all parents, we want the best for our child, no matter what. That is why we work so hard and strive to give all that we can. We aren't trying to change something that can't be changed or in denial we just want to make sure our child can reach his fullest potential and life his life the happiest it can be. We really are just a different form of every other regular parent or human out there. 

2. This is a huge one. WE ARE TIRED!! Being any parent is tiring some days, being a special needs parent is tiring most days. There are many sleepless nights, in our case the sleepless nights outweigh the well rested nights 4 to 1. Being a special needs parent and being exhausted isn't a different ball game it's a whole different league. Even if we get a good nights rest there is still a level of tiredness knowing or not knowing what the day is going to throw our way. Fatigue is something we learn to live with. We don't come with any extra energy or patience than normal people we just learn how to manage what we do have. We realize we can't give 100% of ourselves 100% of the time. We know that because of the emotional, physical and financial exhaustion we deal with on a daily basis we need to take me time to avoid burning out. We are so eternally grateful to the friends and family  that understand our fatigue and don't complain if we just can't attend a social function because frankly a nap is needed. Sometimes just an hour to ourselves to have a hot bath in peace or a coffee with a friend is all we need to feel like ourselves again. We can't be our best if we don't take a little time for us. We often come back refreshed and ready for whatever is going to be thrown at us next. It is a good mental break for us to be known for the fun, energetic, kooky and sometimes crazy people WE are and not just being known for being a special needs parent. 

3. We should be given a medical degree among all of the other jobs we do on a daily basis. More doctors, specialist, therapist and clinic appointments than you can count. Specialist appts are not just a few times a year but some monthly and some weekly. Therapies may be daily.  I feel like some days when we are talking to specialists and doctors I may have done more research in my 14 years of being a special needs parent then they have done in their entire career. Making ourselves aware of medical terminology, how to read xrays, CT scans, blood work and MRI's is just part of the job. Once we learn how to read them and what it all could mean often brings us a feeling of accomplishment because then we don't have to wait weeks or months for answers. I sometimes feel I could work in the Neurology Dept of our Children's hospitals and do it with my eyes closed. I am sure this is not the case but it definitely feels that way some days. 
On top of our medical degree we also deserve a diploma in Admin Assistant. The amount of paperwork, phone calls, scheduling and filing we do is insane. It could be a fulltime job some days. We could fill out 10 pages of paperwork just to be told an hour later our child doesn't fit the criteria and given a whole new set of paperwork to fill out.Phone calls are hard and we could spend an hour on the phone just preparing for a half day specialist appt to make sure everything is in place for when we get there. Only to find out something has been forgotten. Trying to navigate the specialists, resources and funding for our children is no easy task. We have "resumes" we give new professionals working with our children that include full medical history, dates of all surgeries, lists of all medications, names of all professionals working with our children, past and present.
We are nurses, caregivers, PSW, DSW, advocates, janitors, laundry machines, teachers, therapists, early childhood educators, researchers, bodybuilders (my arms are like rocks from lifting or transitioning our 14yr old), and most of all loving parents.

3. Please reach out to our children. We love it when people reach out or acknowledge our special children. Yes they are special but we also know they deserve to be loved and talked to/about just like other children. If it is not a good day to interact with our children we will let you know. Even our child who is nonverbal loves to be talked to and acknowledged. Just because they can't talk back doesn't mean they don't feel your voice and words. One of the happiest days I can remember was when a little boy asked if our son could go to the park and play with him. No he can't but from the mouths of babes our child sitting in his wheelchair drooling and not talking was just a normal child that looked like a fun kid to play with. That warms our hearts.

4. Some days we are jealous. Some days seeing other children do things our child never will makes our hearts hurt. It can feel like we will never feel those moments that other families feel. We will never see our son walk, play music, do sports, or even say I love you Mom and Dad. Sometimes we mourn for the things our child will never do or things that take so much longer for our children to learn to do. Sometimes we are jealous of even other special needs children, ones with more mainstream disorders, ones that have so much more research being focused on them or disorders that are more understood and accepted by the public. It is not easy to admit that but it is true. It does not take away from our pride in our son's accomplishments it just means sometimes we wish it could be different, not for us but for him. This point leads into my next point.

5. Sometimes we are lonely. Not lonely as in we have nobody to talk to or have a coffee with but lonely as in nobody will understand so why bother. We can't go to Mom groups and listen for hours while other Mom's brag about what their child is doing or learning. We don't fit in if we talk about our child's new medication, feeding routine or a new theraphy they are starting. Yes I have been looked at like I have a third eye. We often feel isolated when in a group of other parents. We don't have the same experiences or feelings about "little Johnny" going potty as they do, do we talk about how our 14 year old son is still diapered because he can't go to the bathroom by himself. Some days it is easier to just sit and not say anything then to feel like we are aliens. Divorce rate is extremely high in special needs families because sometimes we even feel isolated from our spouse. We are not always on the same page as our significant other, we are humans and all feel things differently at different times. We still have dreams and aspirations of our own as individuals, sometimes they are hard to talk about because we feel they may never happen and sometimes we dream out loud hoping someone else hears us. 

6. We have very real fears and they are never far from our mind. We have to ask ourselves the tough questions no parent should ever have to. What if I wasn't here anymore, who would care for my child, can I trust them to do it how I would want it done? What if my child wasn't here anymore, could I continue on a new life because there is no way it would be the same life as it has consumed so much of me for all of this time? We fear when they do sleep well that maybe something is wrong and we check on them often. We fear forgetting something, forgetting a medication, an appt we have waited months for, we fear others not understanding when we have a moody day. We fear mean or unkind words from others. We fear being isolated or forgotten about. Most of all we fear we are not doing enough, we can always do more right? What if that one thing we didn't do has a huge impact. We fear we will be financially strapped for our lives. We fear our other children don't get enough of our attention or they will be upset knowing any money we could have put away for their educations had to be used for special equipment, treatment or child care costs for our special needs child. My biggest fear is my so called normal children will resent me or their special needs brother because he got so much of my time patience and energy. 

7. We feel your words much more than you know. Please choose your words wisely. We have heightened emotions from lack of sleep, fatigue, racing minds and good or bad we feel more than the average person. Some days I feel like an emotional mess. Someone can say something so touching it brings me to tears in the middle of a farmers market and 20 minutes later someone can say something that makes me so angry I am sure I could reinact a scene from a horror movie and not think twice about it. Your words like, retard, retarded, short bus are disrespectful, hurtful and mean. It is making fun of someone for being different in a mean manner not a teasing manner. A pregnant woman telling her friends she doesn't care what her child is boy or girl as long as it's healthy is sort of a slap in the face for us who didn't give birth to healthy babies. You might as well say well I don't care what I have as long as it isn't like their child. Right or wrong some days we do feel this way. I often said with my last child I didn't care what I was having as long as he was healthy and I hated saying that because I knew he would be loved and cared for even if he wasn't. I came up with a new saying that was ' we don't know what we are having all we know is it's a child" A very true statement we weren't having a baby monkey we were having a child. Healthy or not he would still be our child. Your kind words, how we make you feel or what our friendship means to you means more to us than we could ever put into words. A simple gesture or text message letting us know is all it takes to brighten our day. We try to show our friends how much they mean to us as often as possible. Choosing to send us an inspirational message or just a hey I hope you have a great day could mean the difference between a bad day turning good or a good day turning great.

8. We don't want you to fear us. My child may be different than what you are used to, he may look or act different from others but don't fear us. Ask questions we will answer. We love talking about our children, their struggles, their accomplishments and their needs. Don't be afraid to ask about his disabilities or his abilities. I will always want to share our son's life story with others. I hope he inspires others as he has me. Please if my child is having a meltdown or a bad day offer your assistance but don't be offended if there is nothing you can do to help. If my son has a seizure in your presence please don't be fearful, calmness and confidence helps much more. Understand I am confident in my abilities to deal with the situation and if not I am a great director and can tell others what I need to get through this. Seizures can be scary but if you remain calm chances are you will feel our son's strength as he battles through it. 

9. We are human and sometimes we need help. Sometimes I get cranky, moody or just want to run away. Sometimes I need help and don't know who or what to ask for. Sometimes I feel like I should be locked up for my emotional changes and sometimes I feel like Wonder Woman. Some days we feel like we can't continue on like this 1 more day but most days we wouldn't change it for the world. I am a woman, a lover and a fighter. I would walk to the end of the earth to help a friend in need. I try to teach all of my children empathy not sympathy and to always help one an other. I can't remember the last time I told someone " No I can't help you"  it's not in my nature. We have been challenged and pushed beyond our limits, we have fallen over the edge and come back for another round. We wait for those curve balls to be thrown our way and hit it out of the park. Not every challenge is met with the same intensity however we do strive for the same outcome in the end. Sometimes our children need attention from others because we have spent all of our time with our special needs child. It takes a village to raise a child the saying goes. Well my special needs child could use a village of his own and another village to make sure our other children are well rounded. 

10. WE APPRECIATE YOU!!! Each and every one of you reading this, we appreciate you, we love you and we are always here for you. We may not be perfect and we may have to say "I'm Sorry a time or 2" but if you read nothing more from this blog post know we appreciate you and who you are. We love you and love your kind words, warm hugs and your time to read this. 

Nothing in life is ever easy and everything worth winning is worth fighting for. This is our fight and we will win!!

Epilepsy Sucks!!

The Best Summer Yet

Well summer is over and Jordan has started high school.

I don't even know where to begin this summer but it definitely was the best summer Jordan has had in years if not ever. NO major seizures and he was so happy and social. We were able to do things as a family and not worry about his mood or his illness. He went to many baseball games and truly enjoyed them again.

I could stay with him at a baseball tournament for the whole day and he would smile, laugh and clap the entire time. It sure is nice to spend these days with Jordy. It has been so long that we could spend a whole day or even a whole weekend out with Jordan being active that I forgot what it felt like. He is amazing and he makes me smile every day. 

I think Zander really noticed a change in his brother this summer as well. They bonded and became close. Zander loves helping with Jordan in any way he can. 

The summer that started off so rough made us into a family again. I am excited to see what the next few months bring. Jordan has been doing very well with the new meds, his blood levels have started to come back to normal and other than the first week of school no big seizures.

The first week of high school was a little rough but Jordan always hates change. He had several large seizures and his shunt was malfunctioning but we got it worked out and he was good as new again. He seems to enjoy his new EA's and his new school and is becoming well adjusted to the changes.

Sam is still home with us and doing a bit better each day. I think she likes seeing her brothers often even if she wishes she was on her own again. All in time. 

Our friends and our family have given us strength through some of the roughest moments any family would have to deal with and now it is our time to show them the strength did not get wasted. 

Through our battles we have become the family we are today. Some days a bit frazzled, many days a whole bunch of crazy but most of all more love than words could ever explain. 

Jordan's Grade 8 Grad 2014

Well last night Jordan graduated grade 8 and next year he will be on to high school. I can't believe we have come this far. I cried like a baby at his ceremony but they were all happy tears.

I am so proud!!

Life Happens!!

It has been a while since I have felt like writing a blog post but today is that day.

Our family has been through quite a bit in the last few months, Jordan has started new meds (again). He had several more seizures in February but finally got his cast removed. Jordan was also involved in an accident on the school bus where his wheelchair sustained enough damage it needed to be replaced. It is now 4 months after that and the wheelchair has been ordered. We want to thank Custom Mobility for helping us navigate this ordeal and loaning Jordy a wheelchair until his arrives. 

On March 2nd 2014 our lives changed forever. We were excitedly waiting for Sam and her boyfriend to drive down south from Thunder Bay for a visit when we received a phone call from Hearst, ON. hospital. There had been a tragic accident. Sam and Patrick were involved in an automobile accident with 2 transport trucks and sadly Patrick passed away instantly. The hospital informed me Sam was at Hearst Hospital but they didn't know the extent of her injuries yet. She was then airlifted to another hospital and then air lifted back again to Hearst Hospital. Just before I left to hit the road for the 14 hour drive to go to the hospital I received a phone call from Patrick's Mother Lyane. I could barely speak because I was so shook up and feeling so much grief. I so wished I could take her pain away and still do to this day. Once arriving at the hospital I got to see Samantha right away. We both cried and cried together still not knowing the extent of her injuries. To make a long story shorter. She sustained major injuries to her neck and back, Chipped her spine in 2 spots and broke a bunch of cartilage in her spine. Her right ear was tore almost completely off however the doctors did a good job stitching it back on. She tore all of the ligaments and tendons in her right hand and her whole body was covered in lacerations and bruises. Even with her injuries I just wanted to hug her so tight because she was still here. The emotional trauma and scars she will have to deal with will take a lot longer to heal than the physical. They were on a remote part of the highway and it took first responders an hour to reach her before they could start to extract her from the vehicle. 

We then started the journey to bring Samantha home to London so I could care for her. Once arriving in London my husband went to get us some breakfast and had learned that someone else had paid for our meal. This started the biggest movement of Pay It Forwards I have ever been involved with. Our family took this tragedy and turned into a positive and started #PayItForwardForPatrick. To this date there has been over 100 pay it forwards from all over Canada and the USA and we are still being notified of more every week. Nothing we can do or say will ever make this tragedy go away or the pain any less but remembering and honouring a beautiful young man that lost his life too soon can sure start the healing process. I had only met Patrick once but I loved him because he loved my daughter and made her smile. 

Samantha is now home with us in London and she will be here for a while. She is anxious to get her own place and be on her own however because she can't return to work or school she still needs our assistance. Not a single day goes by that I am not thankful, speechless or overwhelmed with feelings about this however with great family and friends by our side we will persevere through this as well. Patrick's family and his Mom (Lyane) and Dad (Mike) have been so gracious and helpful to us. Through this all we are bonded together as 1 family now. 

When the accident happened with Samantha and Patrick, Jordan was very sick. The new meds were wreaking havoc on his body. I laid in his bed next to him and explained he needed to get better, he needed to behave and we couldn't deal with any more hospitals or seizures. His sister needed our attention now just as he had so many times in the past. Weather it was THAT talk or the new meds he listened. He has been so great since March. So happy and full of life and smiles. It is a new Jordan, like I have never seen him before. He still has moments but he is more social than I have seen him in years. 

Yesterday Jordan graduated grade 8 and next September he will start high school. I am going to post a bunch of pictures from the last few months and of his graduation but I wanted to save that for a new post.

No matter what life throws at you, remember you have a future and don't let it slip away because of a tragedy. Live each day as if it is your last and ALWAYS tell the people in your life how much you appreciate and love them.

THANK YOU again to everyone that has helped us through this difficult time and most of all to Lyane and Mike for your warm love while dealing with your own emotions. We love you!!

Jordan's Journey Now on Facebook

Come visit us and like our facebook page:

https://www.facebook.com/jordansjourney2000


There will be more regular updates on the facebook page as well as little tid bits of info. The blog will keep running for larger updates XOXO

2014....fingers crossed!!

Well we are almost a month into 2014 and my fingers are crossed for this year to be a better year for Jordan.

His cast came off last week finally and even though he is in quite a bit of pain still it is nice not to have to lug that thing around. It was getting pretty heavy and never mind the hassle of trying to bath him with a cast from hip to toes.

A few smallish grand mal (tonic clonic) seizures over Christmas Holidays. Several trips to emerg for seizures and broken femur related issues and 4 appts with the Ortho Surgeons but thank goodness that is done for now.

Jay has been off of work for 8 weeks due to stress, anxiety and chest pains. Tonight is his first night back and I will miss him at home lots but am also glad we might be able to get things back to normal. He still has anxiety and there are so many contributing factors but with family and friends by his side and a wonderful understanding doctor I hope this is the last of the major anxiety attacks. 

I was raised that we are never in a bad enough situation that we can't help others. Even though this holiday season was plagued by stress for us we were glad to help 2 families have a wonderful Christmas Dinner they might not have had. It makes my heart feel so warm helping others. We also got to have Samantha home for 9 days over the holidays and meet her boyfriend. He seems very nice and like he just might fit in well with our crazy family. Sometimes I wonder if anyone is really prepared to meet our family!! HA!!

So far no trips to emerg in 2014 for anything that we weren't already prepared to handle. I am trying to figure out a weekend to go to Toronto and visit some family that I don't get to see very often as well as I made it a New Years Resolution to see the people that matter the most and I haven't made time for in the past. Also part of that resolution is to make sure the people that matter most know it. I don't tell every Tom, Dick and Harry that I love them but I do need to tell the people I care about more often. WARNING to all friends and family you may see a more mushy, softer side of me in 2014....don't let it freak you out just roll with it. 

I have been witnessing several families going through struggles similar to ours with their children and every day it makes me thankful for the good days we do have.

We have some big plans as a family in 2014 and I can't wait to fill you all in. Take Care of Each Other and remember to dance in the rain or lately in our case the snow!!

What a way to kick off November

Well November started off amazing. Jordan seemed to be doing very well on the med changes and he was very happy, lots of laughs, eating and drinking well and sleeping lots. Only a few "minor" hiccups. Well minor for Jordan.

Then Sunday Nov 10th happened. It all started with an hour long status seizure and a trip to the hospital via ambulance. What can I say Jordan likes lights and sirens I guess. After an hour long seizure it finally stopped. Jordan was admitted to hospital because he was having complications from the seizure. On Monday he had another 4 grand mal seizures.Once settled Monday night he was agitated and didn't sleep much. Not sleeping is very rare for Jordan after seizures, usually he sleeps for days because he is exhausted. 

Tuesday morning we noticed he seemed to be in pain and uncomfortable. We spoke to the nurses and doctors about it and they started to investigate the possible causes of pain. We all thought it was abdominal pain because of his reactions, pulling his legs to his chest, pulling his own hair and rubbing his belly and chest. He had visitors and everyone saw that he was in pain but we couldn't figure out where it was coming from. The nurses were giving acetaminophen and ibuprofen to try and ease the discomfort but nothing seemed to help. Wednesday morning the doctors said he had been 24hrs seizure free so they were going to send him home since the abdominal scans showed nothing out of the ordinary for Jordan. They thought maybe his muscles were sore from the seizures. 

Jay and I decided to give Jordy a sponge bath and get him up out of bed into his wheelchair before they discharged us to see if he was more comfortable sitting up. As Jay transitioned him into the wheelchair we noticed the pain got worse.....much worse. He wouldn't let us touch his legs at all. We called the nurse and doctor in and they sent him for a series of leg x-rays. Later wed afternoon we found out Jordan had a broken femur. After much thought and investigation we all came to the conclusion it must have happened Monday night during the one seizure where we noticed his leg was caught in the bedrail however because he was in seizure we couldn't move him. The break was bad and in the wider part of his femur. He would have needed surgery but because he doesn't weight bare and doesn't walk they didn't want to risk surgery with his other medical issues going on. About 6pm the Ortho surgeons came into Jordan's room gave him 2 shots of IV morphine and began to set his leg and then cast it. I have never seen my son in such pain before followed by silly hallucinations and lots of giggles. Nothing breaks a mother's heart like knowing you have been moving your son around in his hospital bed for 2 days with a broken leg. Jordan is now cast from hip to toes and on 24-7 pain meds. They also increased his seizure meds. 

We came home on thursday from the hospital to face a whole list of new challenges. How to change a diaper without hurting him, how to sponge bath him for anywhere from 6 to 16 weeks and not leave him feeling gross and dirty, how to transition him without moving his leg. How to exercise the rest of his body and other leg so he doesn't get stiff. How to keep myself sane with little to no sleep and more stress than I care to talk about.

We are now looking into seizure alarm watches that sound an alarm during the night if he is in seizure and bumper rails for his bed that are also portable and we can take them to the hospital when he is admitted so this doesn't happen again.

As always our friends and family have been very supportive and I don't know how we would do it without them. Coffee from friends while we are at home or in the hospital, friends bringing me dinner to the hospital because I haven't been home in 48 hours, offers to help Jay with the other kids so he can come to the hospital when needed....all things we very much appreciate and would never take for granted. In the last week we have had, rain, snow, hail, sleet, wind and a very sunny warm day. Just goes to show you never know what is coming in weather or life!!

Jordan's World: Fall 2013

So much to report in Jordan’s World!!

Jordan had a pretty good summer, baseball games, swimming and lots of time with family.

The fall has come with starting grade 8 which is going to be an exciting year for Jordan. Zander started JK and Travis is in grade 10 as well as Samantha is in her 2^nd yr of University. So many changes happening within our family. Some good news on the Travis front, no heart surgery for at least another year. He is being monitored closely and if things get worse it could be sooner but for now at least another year without that stress.

Jordan had several significant seizures and spent some time in the hospital. While there the doctors were concerned about a small stroke and were running tests. We found out Jordan’s bloodwork came back all messed up. His platelets were low, his hemoglobin was low, red blood cells were enlarged and he has anemia. It is now nearing the end of October and he has been through 4 rounds of blood work in the last 6 weeks trying to figure out what is going on. We have been given a worse and best case scenario and neither is great.

Last week we took him in for what we hope is the last bit of bloodwork before we get some real answers. He has a clinic appt on Nov 5^th and hopefully we will know more then. It has been difficult to deal with and the stress is unimaginable.

We have come closer as a family through all of this even if at times it feels as if we are being torn apart and our best friends have been there every step of the way with us. Sometimes friends become family and that is an amazing feeling of love.

Trying to stay positive seems like an impossibility some days and with so much uncertainty it takes all of our energy to keep the people in our house up in spirits.

“How do you learn to breathe again? How do you learn to live a normal life when you can’t remember what one feels like? How do you regain faith when it feels like faith left you standing alone so many years ago? Emotions are something we reserve for our closest family and friends but love is something we have for all. Sanity left the building a long time ago and all that is left is a normal family that might be a super-family in hiding. I know so many have far bigger stressers than we do and never have I felt why us, but it does feel like the breath has been sucked out of us so many times that we sometimes wonder if we will ever get it back again. How do you learn to breathe again? Or maybe when can we learn to breathe again?

He sits here beside me laughing tonight as he watches Wall-E and at these times nothing else matters besides those giggles that I live for. Some of us wonder what our purpose is in life and I know my purpose was to be his Mother. The many people that know me understand how hard it is for me not to work, to sit at home waiting for doctors appts, waiting for the school to call and say he is having a bad day and I need to go get him, waiting, waiting waiting. I as a work-lover am finding it difficult to keep myself busy and productive. Some days the ambition is very low and some days I feel I can “do it all”!! I have a plan and I am getting my plan organized and setting it in motion and then LOOK OUT!!

No matter what happens with Jordan, I know as his Mother I am proud of our family and friends for always pulling together when he needs us. I am proud of my friends who continue to give me strength when mine seems to be running on empty and most of all I am proud of my family, we are mighty and we are soft but we always manage to pull through no matter what gets thrown on our plate.

Jordan is a boy with a mission and these last few years has made it very clear to me what his mission is!! We all could learn a little from a special boy that can’t talk but he sure can communicate. 

Well we have had a busy summer. Some great some not so great.

Jordan has been in the hospital for more prolonged seizures and refusing food and fluids this summer, he has started some new seizure meds and he keeps fighting and we keep trying. Some days are better than others and we know it is just another hurdle. We have postponed surgery for a feeding tube until we can figure out when Travis' heart surgery is going to be. Hopefully we will know within the next few weeks. I don't want to schedule one surgery and then find out we have 1 child in the hospital in London and 1 child in the hospital in Toronto. 

With the new meds Jordan has started eating and drinking again, his hair is growing back slowly and very light. He isn't drinking much but it is enough to keep him hydrated and some days he drinks as if he is famished. Loading him with carbs has done wonders because it keeps a little bit of weight on him so he doesn't lose everything when he is sick for a week or 2 and hey lets face it....taters and pasta are Jordan's favorite LOL

Jordan has had a quiet summer but it has been filled with smiles and laughter. He has started to tolerate social occasions a little better and can actually visit with people for 20-30 minutes before he screams for us to get him out of the situation. We are hopefully taking him swimming this weekend as he loves the water and maybe even a splash pad as well. Samantha was home for a few weeks to visit and I think Jordan missed her as much as I did.

Jordan starts grade 8 in 2 weeks and as I am excited for him I am also scared as can be, Grade 8 means a huge milestone that we never thought was possible for Jordan. It means graduating with friends that truly care for him  but it also means a new school next year, new EA's and a new environment and we all know how much Jordan doesn't like anything new. Lets not think that far ahead yet :)

We will hopefully have all of the bathroom renos done in October and Jordan will be able to have a full bath in a tub full of water. This wouldn't have been possible without all of the help from our community, friends and family with both benefits that were held for Jordan. I can never stop thanking you all enough. I have been racking my brain on how I can repay our community and I have several ideas but still thinking. 

I am happy to say once school is back in, in 2 weeks I hope to have a few weeks to think and gather my thoughts and tie up lose ends before chaos of surgery ensues. 

Thank you to everyone that reads this blog, to everyone that passes this blog along to someone it may help and to Jordan for being so special that I want to share him with the world. 

PS we have had a few great storms this summer and I have danced in the rain!!

June 2013 Benefit Concert

Well last week was a trying week with Jordy, he was running high fevers and having small seizures as well as refusing fluids. We plugged through and he is in great spirits this week. Full of smiles and really looking forward to summer. I am going to try and attempt to take him to another baseball game either this week or next. I miss how much he used to love being social and going to ball games but still hopeful if we do it little by little maybe we can get that spark back in him. After all we are a baseball family.

I wanted to take this opportunity to thank everyone for their support sunday at the charity concert. Hurtin Merv, Shelly Rastin Band and Bender, you are all class acts and you provided entertainment like no other. Dave Cobain for your tenacity and ability to run with this idea and make it a reality. EastSide Bar and Grill for hosting the amazing event and all of the volunteers, Ami Reed for putting the bug in Dave's ear and helping him run with the ideas, Tracy Wilson-Peakman, Pat Crawford, Lisa Dobbie, Alicia Grant and many others that I am still learning their names.....thank you from the bottom of our hearts. Your time, talents and support means the world to us all. To all the family, friends and friends and family we never knew we had....THANK YOU Your support means more than words can express. I will be posting videos and pics of the spaghetti dinner and the benefit concert soon...I promise!!

To my parents, my husband and our amazing children, thank you for always being there for me, thank you for never asking why I need help or questioning you when I call in the middle of the night. Thank you to our friends that bring me food and coffee when I sit in the hospital for hours or have pulled all nighters with Jordan. I know I have said it before but really I would not be half the woman I am today without you all. 

On one last note, I have been approached by 3 separate people in the last few days about doing more fundraising for Jordan and I am going to say thank you sincerely for thinking of us but no thank you. I want everyone to focus on other families that need help, there are over 320 special needs families in the London Area and over half are without any gov't assistance or funding. We will likely always need help with providing equipment for Jordan however we have made it this far I am sure with the generous donations we have received we will make it even further. Our family is still collecting poptabs and we are well on our way to being able to provide another wheelchair to a special needs child that desperately needs one (even more so than Jordan). Keep your eyes peeled for a poptab update in the next 2 weeks....I am very excited to share this with you all. If anyone wants to donate to help special needs children in the London Area I encourage you to donate to Easter Seals, CPRI or Thames Valley Children's Centre. Please don't take this the wrong way because we appreciate every cent donated to help support Jordan and every minute people have given us of their time but we would like to pay it forward and be able to help others as well. Jordan's Journey might be working on another benefit at sometime in the future but for now we are going to relax, enjoy our summer and smile knowing how many people in our community have touched our lives.

I have attached a video link that is for all of you, even though it is a love song it really speaks volumes for how I feel about each and every friend we have, because I couldn't breathe without you all. http://www.youtube.com/watch?v=_9wKi1keg8g

May 2013

Jordan has had a great month so far. He has started eating and drinking more regular again. He is sleeping much better and seems to be in a happy mood. We are still stressing wondering when the next bout of seizures is going to hit or when the meds will take an ill effect on his liver and kidneys but for now we are happy with any small amounts to progression. A happy Jordy is a happy home.

Summer is almost here and we have some fun things planned for the summer. Sam will be home in 2 weeks for a short summer visit and we can't wait to see her. It has been since Christmas since she was home. We are flying her home especially for the benefit concert June 9th. It should be  a great day. Shelley Rastin, Hurtin Merv and Bender. Starts at 2pm and there are some great door prizes and auction prizes coming in as well. Zander starts t-ball in 2 weeks and hopefully Jordan will love watching. We have taken Jordan to a few ball games this year and so far he has not enjoyed them. Here's hoping once the weather gets warmer he will love it again.

Travis will have all of his heart tests shortly and we are waiting for the date of his surgery. All we really know is the surgery will be between Sept-Dec and it will be in Toronto. Fingers crossed the 3rd time is a charm and he won't have to endure anymore open heart surgeries.

Our family is as always busy and lots going on right now but we are happy to report the chair lift is fixed and our backs no longer have to strain carrying Jordan up and down the stairs. Now can't wait to have the bathroom and bathlift completed.

When you have a bad day, week or month remember there are people struggling everywhere and maybe your story can help just 1 person. Remember:

It's not about waiting for the storm to pass it's about learning to dance in the rain!!

Boy oh Boy do I love dancing in the rain!!