January 13, 2015

Life does...

January is almost half over... I don't even know how that happened so quickly. On Sunday I realized that Josh's birth is literally around the corner! I remember when I was a kid and the years seemed to stretch out before me and days passed like eternity. Now I feel like I am in warp speed... Yesterday I was walking the dog passed a car (an empty car, on a seemingly empty street) when the car suddenly started by itself; I actually caught myself looking for David Hasselhoff! That was when it hit me... I am quickly getting older.( and if you know what I am referencing then you too are getting older my friends) This new year marks the end of my thirties, come May I will enter a whole new decade of life, a new phase, a new chapter and I do so with so much excitement! My twenties were not so much fun, but my thirties were the best years of my life and it makes me look forward with anticipation to my forties.

I have so much to be thankful for. Looking back I can how God used the pain of my life to shape me, to change me and to bring me into this new person who is so ready to get old and face new challenges. It gets busy, life does, and it has challenges, life does; but when I can see how the things I have learned along the way can bless others then I am once again just so grateful. To know that a purpose came from the pain brings peace, and sometimes that has to be enough.

I am late in wishing all my readers a Happy New Year, but I do, I wish you all the joy and peace that comes with life, I wish you hope, strength, endurance, growth and laughter, even tears that move you to healing.

May God go with you into 2015;

December 24, 2014

A single light

It is Christmas eve. I love this particular holiday. This year we gifted the whole family with a new puppy named Max. He's a joy to have in the house but he is a puppy and he can be rambunctious; lots of walks are needed to keep him at a good level of sane while in the house. My shoes demand that he be too tired to chew on them! This morning I set off for a walk with him, the streets were fairly quiet, it was mild out and it was still dark. I passed several people on my walk and a funny thing began to happen. In an age when 'Merry Christmas' has been replaced by 'Happy Holidays' I was pleasantly surprised when a young man passed me and wished me a Merry Christmas, a few more steps and an older woman walking her dog also wished me a Merry Christmas, then it was the older homeless man on the corner near Queen, then the Muslim woman with her son, and the Muslim man walking his elderly parent into the grocery store. In fact, not once, did I hear Happy Holidays, and I was walking through a very Muslim area of town. Each person I passed (except for a few who seemed to be rushing to get somewhere) smiled at me as I passed and wished me a Merry Christmas. It was so great! Their smiles, their Christmas greetings gave me the spirit to move down the street offering the same smiles, the same greetings.

Tonight, we went to the service at the church where the children put on a very cute portrayal of the Christmas story, it was mayhem. Kids dressed as sheep, and several animals that I couldn't identify... even an elephant, angels, shepherds, scribes,  kings, and of course Mary and Joseph. In the madness something came home to me... this is exactly what Christmas must have been like back in the first century. Not the trees and gifts or things like wishing people the latest politically correct thing... but the madness, the mayhem. The busyness that saw a pregnant woman needing to give birth in a barn, the animals, the noise, the smells. At the end of the service Tim took the advent candle and he lit my candle, I in turn lit the boys candles and we turned and lit the candles of the boys behind us... the light spread from row to row until the entire church was lit; all from a single light.

I think of the beautiful light of the star that night, how the light of the world was born in that barn, and that single light has passed from person to person and lights the world. It may not always seem bright, in fact in recent days with the threat of terrorists and the fear of the politically correct it seems that it's darker than ever; but that light is still lit. It is alive in me, it's alive in many people I know and as we move into the new year my prayer for you is that you pass your light along, share it with the person sitting behind you so that we light the world.

Merry Christmas my friends. Thank you for sharing in this wonderful year with our family!

December 16, 2014

Joshua's Hope

For the last three years I have been feeling led to start a foundation to aid in the fight for better adult care of Congenital Heart Survivors; I say 'led' because I felt that God was asking me to do it... and my answer was always 'No, I can't'. I am not sure if you know what it involves (even I don't know the extent of it...) but it takes a lot of 'seed' money and lawyers and buerocracy that I know nothing about. It was/is overwhelming to me so I continued to shut the idea down. Money alone stops me, forget all that red tape stuff. So I have moved into the 'mother volunteer' role and it's been serving me well, serving the agencies well, and hopefully one day serving Josh well. However, this past year the answers have become increasingly clear. I want to do more than be a bystander to Joshua's future; I am simply not satisfied with waiting for others to get the job done. I want to be at ground zero, on the front line; I want to be a part of making it happen. I have learned a lot about the health care system, I have discovered the amazing things that are happening, and the awesome things that are about to happen. I am learning daily about the specialty of Congenital Heart Defects, and how incredibly hard they are to treat. I am also learning about all the problems, the setbacks, the stumbling blocks that face Josh and his peers in the years to come, if nothing gets accomplished now to change that for them.

My dream, shared by some key people is to have a Heart Institute within the walls of Sick Kids that treats all Congenital Heart Defect patients. Pre-natal, pediatrics, and adults alike. All patients, one model of care, one building. It would be a first, it would be a ground breaking project and it would forever change the face of medicine, particularly in this field.

The first steps are baby steps, reaching out to parents of CHD kids, sharing with them the key problems that face our kids, talking with our government officials, asking tough questions of the government and boards of the hospitals. It isn't going to happen over night, sadly it may not happen in my lifetime without a LOT of support from key people... people like you, people who have read about Josh's story and been touched by it.

A few weeks ago I once again entertained the idea of starting a foundation, with the key mandate being to aid in this endeavour. Once again the same issues arose... but then I had a thought, God inspired if you ask me. I could start up a third party organization under the umbrella of the Sick Kids foundation. The name even came to me on the spot... Joshua's Hope. I contacted my rep at Sick Kids and asked her about it and received a green light... and before you know it, here we are!

Joshua's Hope will raise awareness about the growing issues surrounding adult care for kids like Josh, and the money we raise will go directly to the highest priority needs of the Labatt Family Heart Center at Sick Kids Hospital, my aim is to help fund the little projects that will lead to the larger project of this Heart Institute. This is a huge undertaking, it will require skills that I didn't know I had but will have to come up with, it will require the help of some good volunteers, and yet, I know that it can happen.

I haven't put together all the little bits and bobs just yet, with Christmas on the horizon I have decided to wait until the new year to think about websites and things of that nature but I urge you to visit our donation page on the Sick Kids foundation website (Joshua's Hope). I also ask you to share this with your social media contacts so that we can start getting the word out. Your help in this is both greatly appreciated and SO necessary! I really can't do this without you.

Hope for their lifetime starts today,

November 28, 2014

How can you help?

Yesterday I posted about a project that I am going at full force in the coming years. The dream of a Heart Institute that melds pre-natal care, pediatric care and adult care under one roof, one care team, one model of care. As I mentioned, this is not a far-fetched dream, the window is open but it will only be open for a shot period of time. If ever there was a time to change the adult care system this is it. I asked each of you, my readers, to help me and I promised to share in the coming days how we need your help. Starting on a journey likes this takes a lot of noise, we need people to stand up and take notice. We need to make them see the problems that need addressing. You can start by sharing yesterday's post with all of your contacts on social media. This is a huge step towards change, social media these days can breathe life into a cause when enough people care to share. (Look at what happened with the Ice bucket challenge!).

Today I am going to ask you to think about doing more than reading about Congenital Heart defects. I am going to ask you to write to your local politicians, you MP your MPP, your city council rep. I am going to ask you to write to every contact you have, everyone with any kind of influence or power, anyone within the media you can think of who may be able to help by lending their voice to this issue. I am asking you to stand beside me and join voices with me. Contact me if you need to get an email address or need help composing the letter... or simply copy and paste the article from yesterdays' post. I am happy to help you.

We need media contacts to get a hold of this story, to share with the masses about Congenital Heart Defects, the gaps in the adult system, and the struggle that patients face.

To make this happen it will take patience, and time, and some powerful and influential people to start talking about it and making it a priority, but, and this is big... it will take you. Friends and family who know and love someone who suffers from a congenital heart defect. Your voice matters. For every child (for the most part) who is born with a CHD there are two parents, four grandparents, and countless friends and extended family; all those people are tax payers with a voice.

This is a large undertaking: I know that I am asking a lot. However, I also know that you all have shown me before (#redforjosh) comes to mind that when you want to, you can make a difference.

Thank you for all your support and action! Feel free to leave comments when you have taken actions to help this endeavour! ---- AND SHARE yesterday's post on your social media... share today's post. MAKE SOME NOISE!!! :)

November 27, 2014

I need your help.

Let me set a scene...

You have an illness, you were born with it. You have suffered agonizing surgeries, agonized with the reality that your illness makes you different from everyone else, had multiple scares, suffer anxiety, depression, fear, worry, and you know that there is no cure. You have been cared for by excellent doctors who put your care first, they know you inside and out (literally). They do special little things to help make things a little bit easier as the years pass by. Making the small things matter, making a smile the most precious gift you can receive some days.
Then, you grow up. You find yourself an ‘adult’ and you are thrust outofthe world of pediatric medicine at a mere 18 years old. Too young to fully understand all that that entails. You know you need to go to a doctor for regular checkups, but you are scared, unsure, maybe even unaware of the implications of not going because you are still young enough to believe that you are invincible.
Maybe you do go to regular checkups, but your doctor isn’t a specialist in your illness, they don’t understand all the facets of how your illness affects you, you fall through the cracks and you find yourself suddenly at risk of a very early death as a result. Perhaps they give you medicine for your illness, but you don’t have insurance to pay for it because this is a per-existing condition. Where once you had a medical team who took care of you, who educated you every step of the way, you now find yourself alone, trying to educate your new medical team and where fear once lived it now thrives.

This is the state of the adult care for congenital heart defect survivors.

I have been working with Joshua’s surgeon and the sick kids foundation to make a mutual dream a reality. I wrote the following essay/article to help on this new ground breaking project that could change lives and the medical system forever.
In the following weeks I will share more about how you can help, what you can do, how you can become a part of this new and exciting adventure. Please, if you share this, with as many people as possible then together we can make history and save lives.

There’s a killer stalking my child.  And almost 200,000 other mothers know the same fear. This killer gives no thought to race, gender, sexual preference, religion or politics; it comes swiftly and sometimes silently and once it grabs hold of you it will never let you go.
The killer is Congenial Heart Defects (CHD) and it kills more children annually than all childhood cancers combined.  It is estimated that one out of one hundred children born in Canada will be born with some form of CHD.
In the 1950’s and 60’s a child born with a congenital heart defect had a twenty percent chance of surviving to adulthood. Fortunately, today, ninety to ninety-five percent of children born with a CHD survive. The growing number of survivors is leaving us with a beautiful yet unique problem.  Where we have never before needed an adult care system, we now have a desperate  and constantly growing need for specialized cardiologists in the field of Congenital Heart Defects.
“It is important for cardiologists to specialize because heart defects are many, varied, and complex and they are not the same as cardiovascular disease. A heart defect is not the same as a plaque build up in the artery and all that that entails, however complex. Until recently, there weren’t enough survivors to justify a specialty, nor was there enough interest,” says Shelagh Ross , President of Canadian Congenital Heart Alliance
My son Joshua is one of these survivors.  He was born in 2008 with a complex congenital heart defect; we were told not to expect him to live. Today he is six years old, has had four open heart surgeries, four cardiac catheterizations and suffered a massive stroke, yet he is here, and alive because of  a medical research and a pediatric system that has changed how it thinks about patients and patient care. This is a staggering success for the field of pediatric cardiology, yet there are systemic problems that result from the dramatic increases in the survival rates of our CHD kids.
When Joshua turns 18 he will leave the safety of his pediatric hospital and enter an unknown adult world of medicine that is not ready for him. He will leave Sick Kids in Toronto and be met with new doctors who may not be specialists in the world of congenital heart defects. As a parent I have learned a great deal about the medical system from pre-natal, through the pediatrics and now realize what the adult care system is currently facing in terms of larger numbers of survivors, a lack of specialized doctors and health care providers.
But what would happen if there were a place where adult CHD patients could all be treated with equal care, equal value--just one all encompassing system such as they already receive as kids? What would happen if we had a place for all CHD patients—baby, child or adult? What would happen if we went to one place for prenatal care, pediatric care and then adult care? What if Josh, who has always been followed by one specialized cardiologist, whose surgeries were always done by the same surgeon, was followed throughout his life by the same institute, the same care providers?
This is a dream that could become reality!
I see all the problems that face Josh and survivors like him, I see the lack of specialists in this field, I see the lack of education for the patients leaving pediatrics, I see the cracks in the system that are just waiting for kids like Joshua to fall through and I see a deep need for change. As a parent it is my job to take care of my son, to help him in any way that I can. I cannot cure my son, I can’t fix his broken heart, but I can do everything in my power to see that his future is as secure as possible. I can make sure I tell everyone who will listen about this silent killer who stalks our kids. I can do whatever is necessary to see a place like this dream institute become a reality.
This is not so far fetched a dream. It only needs an action plan. It needs people like you, people with a voice, people who care about the future of our children, people with the power and will to make things happen, to ensure change.
Congenital Heart Defects are not like Cancer.
There is no cure for CHD. You can’t outgrow it. It doesn’t just go away with time. A child born with a complex heart defect will need lifelong care and probably numerous surgeries. An Institute that specializes in their health care would ensure higher success rates, and ultimately less money for the government. If all care is under one roof, then you have two less roofs to maintain.  There are only 15 specialized heart centres in Canada, and with 180,000 CHD survivors, now and growing annually, this is the time to move from talking about change, to taking action towards change.

October 29, 2014

A diagnosis.

Today is world stroke day... I have been amazed at the damage that a stroke can cause, I learn more on a daily basis, not through books but by studying my son. It's been six and a half years since Josh had his stroke (at 3 months); it feels like 20.

Last week we had an EEG (sleep deprived - which in my old age takes a while to recover from... even though the sleep deprivation was for him). The results were "there's a LOT of activity going on in there".  Apparently he's having a lot of seizures in the site where the stroke happened, they figure there is a few different types of seizures and are occurring frequently. (There is much for me to learn in regards to this new information so pardon my lack of knowledge right now).

Why is Josh not sleeping? Seizures... not fear, not worry... seizures. Why is he not catching up developmentally? Seizures... The diagnosis is 'Epilepsy' which is a term given for someone who has had two or more seizures without known cause (ie. a fever or fall or illness). This was new to me, I had always thought that epilepsy was a disease that you were born with. Anyway, the reality for us as a family hasn't really changed that much; he's been having these seizures for who knows how long, but the label is a little scary.

HOWEVER... and this is big. We got answers! I have been thinking that I am crazy, worrying that I am for some reason seeing things in him that are totally not there, but the truth is now that we have a diagnosis I can rest a little easier knowing that we are on course to get him the help he needs. That help started in the form of new meds, and guess what? He started the meds 6 days ago... and we are on day 5 of sleeping ALL NIGHT LONG!! You have no idea how this little bit of change has and will impact our family. I feel like a cloud has lifted and though it's not fully light yet, the sun is shining through.

The meds should help in many ways, ways that excite me and have me hoping once again for dramatic changes and miracles in his life. One of the biggest changes is that we now have a neurologist following him, one who specializes in both strokes and seizures. This is great news given we have not yet had one specific doctor following up with him before.

Thank you all for your prayers last week, and for your patience in waiting for an update.

Please, take the time to learn about the symptoms of stroke, the help options for those of you who know someone affected by a stroke; you can use the link to the pediatric stroke page on this blog or just Google it. It takes a few minutes but it can save a life.