Reminder for myself

What do you give up to be a parent? That's been running about in my mind a lot this week. I would gladly give it all up for them, but it doesn't mean that there aren't things to give up. It doesn't mean that sacrifices haven't been made. Sometimes it's hard to not look at what has been given up, and other times it's more like seeing what isn't, and realizing that you wouldn't have it any other way.

I never expected to be a CHD advocate, I never anticipated weekly, bi-weekly appointments, numerous doctors and endless rounds of therapies, medication schedules etc. I had big dreams and big plans. Do I sometimes wish that I was working as a full time photographer? Yes. I won't lie to you. There are days when I lay down at night and I am so exhausted by the endless stress of all the doctors and therapists and phone calls to advocate for the kids that all I can think about it how lovely it would be to only have to worry about a photo shoot. How therapeutic it would be to just edit photos today... self pity? No, I think it's just normal. It's normal to sometimes look at the neighbours yard and wish you could get your grass as green as theirs.

Those moments don't last though, I am the only person in the whole world who knows absolutely everything there is to know about Joshua's therapy schedules, what happens in those therapies, what the next step is, and what progress is being made. I am the one who gets sit in those sessions and see the smile of pride on his face when he achieves something new, or to see the surprise on the therapist face when he uses a word we had no idea he knew. I am the only who gets to hold their hands when they are at the doctor and they are scared, I am the one who gets the post-doctor snuggles. When they go to bed at night, safe and snug in their beds I can close my eyes and know that there is NO WHERE else I would rather be, there is no photo shoot that will ever give me the satisfaction of a job well done that a smile or hug from one of these two boys can give me, no other job that would ever compare to the one I have. I didn't choose to have kids with medical issues, but I chose to have kids and sometimes being a parent means rolling with the punches. Sometimes it means giving up what you thought you wanted for something that you couldn't live without.

So, for the moments when I am weak, the times I am just tired from the endlessness of therapy... I write this post to remind myself,  that this is where I am meant to be, this is what I am being called to do at the moment. Fighting for CHD awareness, working with therapists, writing, raising my kids and yes, when all that is said and done... working shoots and being blessed enough work at something I can find passion in, something that soothes my weary soul. 

resenting the church?

Thanks to Bell who finally fixed a downed line outside our house is once again 'online'. I never realized how much I count on the internet before I didn't have it. Now that it's back online my inbox is flooded and instead of doing anything with it all I can think about is how badly my blog has been neglected. So here I sit.

March break came and went with a swiftness that I don't remember happening before. I took the boys to the cottage for the week and though each had a cold they also had a great time playing with their Grandad and Grandma and somehow I managed a relaxing week away. What surprised me was that when we returned home Kaleb was visabaly angry with Tim about not being there with them. I hadn't expected that, nor would I have guessed that he would have that sort of reaction. We had been having fun at the cottage, Tim called at night to talk with the boys and yet when we got home Kaleb was clearly angry with him. When we finally asked him about it he said 'I don't like Daddy, he's always at church'. This brought me up short, the boys know that Tim works at church but I never really figured they would equate work with church. I told them that we were going away because they didn't have school and that Daddy couldn't come because he was at work. Clearly Kaleb put two and two together to come up with "Daddy is at church instead of with us". It didn't take much to appease the little man and once again restore Tim to his good graces. It has however taken me longer to digest what this means.

I don't want my kids to grow up resenting the church because of the times it takes Tim away from them. I want them to grow up embracing the church, respecting the church and the work that their Dad does there. I don't recall ever being angry with my Dad for his time away at work, or the trips he had to make because of work, or even the times that he couldn't do something with us because of work. So I am left to wonder if I am doing something wrong? Am I somehow saying something that causes them to resent Tim's work? The church?

I remember when the boys were babies and all the sleepless nights, the total dependence they had on me and all I could think was 'this is just a hard phase, it'll be easier when they are more independent'. I am seeing more clearly that each phase is hard, each new development poses new obstacles and potential land minds to be navigated... I knew parenting was going to be hard but sometimes I am floored by the depth of responsibility that it comes with.

Internet is totally gone... Right now I am on wireless up north. Things should be back up by the end of the week or early next week. Please don't lose faith in me... keep checking in. I hope to be back soon.
Thanks for your patience.
Laurie

CCHA? What's that?

Time is running out in February, it seems that while this is supposed to be the longest of winter months in terms of feeling like it will never end; it is indeed the shortest when it all boils down to days. I have been working with dodgy internet so my posts have been few but when I see the light for internet come on I do my best to provide as much information in as little time as I have. Not easy I assure you.

Today I am going to tell you about an organization that I have talked about a few times in the last few posts. The CCHA (Canadian Congenital Heart Alliance) was founded in 2004 by Adult survivors of CHD; after a few false starts which included the much too early death of their co-founder) they achieved their charitable status in 2006. The primary aim of the CCHA is to improve access to care and the level of care for all patients with CHD, both old and young so that they can live long and healthy lives. It began with a meeting hosted by Dr. Gary Webb, the director of the Toronto Congenital Cardiac center for adults at Toronto General Hospital. The main topic of conversation was  to tell these patients about the clinic (one of the top facilities in the world) and to let them know that due to lack of funding the clinic was in danger of closing. 

"He said we had to start advocating for ourselves because the government, heart and stroke, and other decision makers weren't paying attention. That was a real wake-up call. None of us had a clue about the politics behind our doctor appointments. I am sure none of us had ever given funding, or the lack of it, a second thought. After our meeting four of us got together and the Canadian Congenital Heart Alliance was born" - Shelagh Ross - President of CCHA

Shelagh, an adult survivor of CHD left Sick Kids in 1981 and like most adults with CHD, she fell through the cracks in the system for almost 17 years, until finally at age 33 she found herself in an ambulance headed to Toronto General Hospital, she was suffering from Ventricular tachycardia (a life threatening arrhythmia) she had been seeing a cardiologist annually and every year she heard that she was 'doing great', but in fact her pulmonary valve was seriously leaking. She had no idea at the time that the Toronto General Clinic even existed. 

The  situation at the Toronto clinic has improved a lot, but there is still a long way to go before the level of adult care is on par with that of kids. That's not to say the expertise isn't excellent but just that there isn't enough specialists and not enough clinics. The vast majority of adult patients are not being followed by one of the 15 adult CHD centers and many fall through the cracks when they transition from their pediatric center. 

"We are trying to get the message out that CHD is a lifelong disorder, and that kids aren't 'fixed' by surgeries, interventions like catheterizations, medications, pacemakers, and/or defibrillators." says Shelagh Ross . The trouble is getting people excited enough to be involved because unless you have CHD or you are a parent of a child with CHD you are not going to get it. CHD lacks the fear factor that some of the other more high profile diseases have. CHD patients often look healthy so it's an invisible disease, something that as a mother to a son with CHD I have come to know only too well. How many times have I heard how good he looks, how healthy, when in fact it's a constant source of worry for us. They repair during surgery, they don't cure. These aspects of CHD are all reasons for the lack of funding, the CCHA is trying to raise the profile of CHD so that things can change, so that they can reach those patients who got lost in the system post pediatrics and get them to follow-up at a specialized clinic and receive the care they need; so that the kids coming out of pediatrics in the future will transition smoothly into adult care, and so that young cardiologists can specialize in CHD care. With the survival rates for CHD climbing the need is growing critical for adult patients.

"It always surprises people when I say that there are an estimated 180,000 Canadians with CHD, 100,000 with Parkinson's, 75,000 with MS, 58,000 with HIV/AIDS, 50,000 with Cerebral Palsy and 3,600 with cystic fibrosis - but you almost never hear of walks or runs or fundraisers of any kind for CHD. Most people assume that the Heart & Stroke foundation includes CHD as a part of their mandate, but it doesn't."  - Shelagh Ross

Another road block to care is that most parents get involved with their child's hospital and direct their funds through those channels. This is something that I, as a parent have done in support of Joshua. The problem of course is that paediatrics only last until they are 18 years old. We need to get working to improve things for the growing number of survivors, many of whom will need specialized care in the future. More and more children with complex heart conditions are surviving and the adult system is  not set up to care for them.

What can you do? Shelagh Ross says that the Canadian Congenital Heart Alliance is trying to get more and more people engaged and concerned, that they are asking people to contact our government, hospital administrators, create fundraising events with them so that they have the resources they need to spread awareness across the country.

"I would like to see us grow into a really powerful national organization that supports and advocates for patients of all ages, and their families. I would like to see us lobbying for or even funding CHD research, and developing programs that deal with the psychosocial issues patients have (anxiety, depression), and the healthy living issues that so many patients struggle with (lack of activity, obesity). There is just one psychologist in all of Canada dedicated to helping adults with CHD and she is in the Toronto clinic, there are no social workers that I am aware of." - Shelagh Ross

On a personal note before I close this post I want to say thank you to Shelagh Ross for taking the time to answer all my questions, and for reaching out to me and offering me a place to share my voice on behalf of Josh and other CHD patients. Please, feel free to check out their website and find out more about how you can help change the face of CHD for adults as well as children.

 

Check it out!

Hope on the horizon

Today I had the absolute pleasure of finally seeing an article in the Toronto news (Globe and Mail) that featured CHD and the crisis that has arisen in our country when it comes to the care of it's adult patients. It was like a balm to the soul to see it in print, to know that someone other than me cares, to know that it's a problem that people are trying to have addressed. It gave me; in a word. HOPE.

I was talking to my Dad about raising awareness for CHD and how frustrating the process was. I shared how annoying it was that no one seemed to care, least of all was the media or anyone who could actually have a larger voice than mine - a mere heart Mom. My Dad is a PR specialist and has YEARS of experience with the media, fundraising, news, journalist, along with any manner of issues revolving around communications, he even wrote a book called 'the media and the message' for organizations on how to cope with the media. He's an expert in crisis management and has dealt with all manner of 'crisis' situations in many number of organizations and company's; I tell you this because of all the people who will know and understand my frustration it is going to be my Dad. What he said to me was this... 'sadly, getting people interested in CHD is going to be like Chinese water torture - You just have to keep plugging away at it'. Not hopeful, but certainly I understand what he means.

So, you see why I am excited that a story was picked up in the news??

Here is is:

Living with Congenital Heart Disease

CCHA

This video pretty much explains it all. It's also a video for an organization that I am now going to be helping with raising awareness. The Canadian Congenital Heart Alliance. Very happy and excited to be asked to join this organization! Check out the website and learn more about CHD!

if only for a moment

I am a having a hard time today, thinking about Valentines day and hearts and flowers and all that stuff, putting together my research surrounding CHD awareness... I had a plan for today, a plan for a special post about raising awareness of CHD. Today took a turn though and I can't seem to find the brain power to switch gears back to the task at hand.

Most of you know that last year Josh attended a school for kids with special needs, well, this year Kaleb also attends the school in the integrated class (a class with both special needs and high functioning kids). Today we learned that a little boy in Kaleb's larger class passed away in his sleep on Tuesday night, his parents made the horrific discovery yesterday morning. All my thoughts on CHD awareness blew out the window. The cynical part of me thinks "who cares anyway?". The reality is that hearing this just brought to mind my own worst fears and nightmares.

Last night our small group finished the book revelations... it's been a long study but the fact that we ended last night seems fitting. Today as I heard this news all I could think about was what heaven will look like for these wee little people who have been taken too early. No more pain, no more suffering, no more sadness, no more scars. How many times have I sat thinking about what that will look like? How many times have I wondered what heaven will be like? Too many I am afraid, to count.

Death is as I have mentioned 'a given' in this life. We were born and then we started to die. That's just the way it is. However it doesn't ease the pain for those left behind, it doesn't ease the fear for those saying goodbye. As we finished revelation last night we were asked to think about how this reality (that heaven awaits us) will affect our daily lives. As I processed this news today I realized that it will make me love, it will help me forgive, it will help me to be compassionate, less focused on me and more on those around me. Death is inevitable, but we must still live. I will one day die. My children will one day die. My husband will one day die, everyone I know and love will all die. What we have now, is today. This moment is the only sure thing in life. It doesn't matter if you have CHD, or if you slip peacefully away in your sleep or die in a terrible tragic accident. That is all in the future. Right now, this moment you have life, and we all too often forget that. The only guarantee we have is what we have right now. Right now I have a son who just moments ago said 'Gross' when I kissed his cheek, and then said 'kiss my lips mummy, that's better'. Will CHD kill my son? Probably, but what I sometimes forget is that he's not gone yet. Worrying, fearing about when that might happen is hopeless. I need to embrace him NOW.

I heard the other day a saying 'Faith and Fear have one thing in common. They both ask you to believe in something you cannot see.'

Today, on this day of celebrating the people you love, remember to enjoy the NOW with them. Hug them a little tighter, tell them with words and actions that they matter because you just don't know how long you have with them.

I won't be posting a picture today, my heart is heavy and sad and I can't think of an appropriate photo to go with those feelings. Instead I leave you only with a post and a prayer... that those of you who are suffering loss today, for those of you who ache, for those of you who fear... that you will find peace today, if only for a moment.

Sick Kids

I have been hearing about Sick Kids since I was a little girl, I have seen thousands of commercials raising funds, I have gotten all the brochures for the Sick Kids lottery. Yet, until I was booked into the Fetal Echo lab at Sick Kids I had never really thought too much about it. The hospital ads, the lottery, the stories, they all seemed so far removed, it happens to other people. Knowing that it can happen to you changes things. When Josh was born he was stabilized at Mt. Sinai and then rushed to Sick Kids, and I began to learn about this amazing hospital. The staff, some of whom have gotten to know Josh and us very well are warm and loving. The have on occasion even heard we were in the hospital and come looking for us to say hi. If I show up at the asthma clinic with Kaleb (the asthma clinic shares space with the Cardiac Clinic) all the doctors and nurses see me and with a panicked look on their face ask me why I am there, if Josh is okay, if Kaleb is okay. They are specialists, in not just Cardiology but with kids and with parents. The information I am giving you today (again in honor of CHD awareness month on this Blog) is about the Labatt Family Heart Centre.

The Labatt Family Heart Centre was established in February 2007. The extraordinary generosity of the Labatt Family allowed the former Cardiac Program to move forward with a series of important internal initiatives, funding the redevelopment and future activities of the Heart Centre at The Hospital for Sick Children. (The Cardiac Critical Care Unit - CCCU is the only specialized Cardiac ICU in the country)

VISION

We will be the best paediatric and congenital heart disease centre in the world. CURRENT STATE  The Labatt Family Heart Centre brings together significant interdisciplinary and interprofessional activities within Paediatric Cardiology, Cardiovascular Surgery, Cardiac Critical Care, Cardiovascular Research and Adult Congenital Heart Disease programs, thus allowing the Heart Centre to address the needs of patients and families from fetal life through to adulthood.



The Heart Centre at SickKids promotes these activities through seamless integration of research activities, academic performance and exemplary clinical care.  Membership within the Centre consists of SickKids' clinicians, researchers and educators from nursing, medicine, surgery, perfusion, respiratory therapy, physiotherapy and occupational therapy, social work, child life, diagnostic imaging technologists, and pharmacy. Additional membership is drawn from outside SickKids and includes adult cardiologists from the University Health Network (UHN), Mount Sinai Hospital and Hamilton Health Sciences as well as paediatric cardiologists in London Health Sciences, McMaster Children's Hospital , Children's Hospital of Eastern Ontario (Ottawa), and Kingston General Hospital.

Key linkages with other proposed centres (Genetics, Cancer and Blood, Healthy Breathing) will further enhance the integration of the Heart Centre within the framework of the larger SickKids Community.  Many other professional and ancillary groups participate in Heart Centre activities with a greater or lesser clinical, research, and/or administrative relationship.

Cardiac Imaging, while remaining under the auspices of the Department of Diagnostic Imaging, is an integral part of the Heart Centre, as is Cardiac Anaesthesia, under the Department of Anaesthesia. Similar healthy collaboration exists with the Division of Genetics, the Division of Respiratory Medicine, the Division of Neurology and virtually all of the other subspecialties.

The complex nature of congenital heart disease and its genetic and syndromic associations require a multidisciplinary and collaborative approach.  We are the largest member of the Pediatric Cardiac Network of Ontario (PCN), a provincial forum which has become an important part of the organization of children's cardiac services in Ontario.

Through this forum, via a variety of means, i.e. regular telehealth conferences with cardiologists and surgeons from London, McMaster, and Ottawa, referral of patients, discussion of problems, and regular patient follow-up are all achieved between the groups.

There is also a network of community Cardiologists within Toronto. Each of these individuals work in a collaborative and supportive manner. Several provide part-time echocardiography staff coverage within the Echo Lab, and all attend our clinical meetings for continuing medical education, referral of patients, and development of research studies. New patient referrals to SickKids, and known patients requiring pre and postoperative follow-up, are triaged to our community cardiologists along well established guidelines, significantly reducing the outpatient work load at SickKids.

FUTURE DIRECTIONS

Our vision of premier international excellence is based on the four pillars of our mission:      Unsurpassed, measurable patient outcomes     Innovative, practice-changing research     Superb education, training and quality of work life     Exemplary patient and family satisfaction

Feel free to visit the website, learn about what great things Sick Kids is doing, and how you can get involved!

What if?

We all know that at some point something is going to wrong with our health, the health of those we love and that someday we will all die. That's a given. What's not a given, or shouldn't be at least, is the thought of it happening to your child. It's always a bigger tragedy if you hear of a child dying, being in a car accident, ski accident, drowning or violence of any kind. Children are sacred to us, we hold onto them, our jobs are to protect them. Just recently the world's heart broke when the news of the terrible tragedy at Sandy Hook elementary spread. Parents around the world who heard the story immediately thought of their own kids, and that night most gave them an extra kiss and a longer hug.

Think about it. For a moment I want you to allow your mind to go there... what if your child got sick? What if they were taken too soon? What would you do? Where would you go? What would your life look like? Most parents don't even entertain those thoughts, most parents don't need to, not even when they hear horrific news about someone else who lost their child. The thoughts are just too terrifying to properly imagine, too horrifying to entertain for any reasonable amount of time. Instead we choose to hug them harder and try to see the blessings rather than than the fear.

I speak about this because I know. I know what it is like to sit in an empty nursery and wonder if there would ever be a baby crying in that crib again. I know because I have had to kiss him on the cheek and say goodbye when they told us there was nothing more they could do. That is what I want to write about today, the fear that comes from an illness like CHD, and the hope that can found there.

Josh's first open heart was not until he was 6 months old, it followed 2 catheter procedures and a stroke. He went into the OR a happy, chubby, sweet little baby boy. He came out scarred, blue and clinging to life. The surgery didn't go as well as they had hoped and actually caused further damage. That was on Monday July 21st 2008, on the Friday morning following his surgery he was totally lifeless, arms and legs were blue and cold and to the naked eye he looked like had already died. I held him as the doctor told us that the only other option was to go in for a second surgery, with tears in her eyes she said "I'm sorry". The reality of it was simple. He was too weak to face another open heart and we both knew it. He was rushed down to the CCCU (Cardiac Critical Care Unit) and we were told he would be prepped for surgery. Hours later, thousands of prayers later, the surgeon came and told us that they just didn't want to go in for more surgery. He was too weak and they didn't think he would survive it. Instead, they wanted to wait, keep him on life support and have the weekend to reconsider their options. To me, it felt like it was answered prayers, like my goodbye might not be a goodbye after all. I think of all the hard weekends I have had in my life and none of them come close to that one. It was like I went to hell for the weekend and was given the grand tour. Every hour felt like a month and every day felt like a year. There were so many scares, so many times when his saturation levels dipped to deadly lows and we again had to prepare our hearts for the worst case scenario. On Monday morning, July 28th, the doctors came to us in the CCCU waiting room and proposed an idea. Instead of surgery they would first try a catheter procedure to place a device in Joshua's heart and repair the damage done during the surgery. While he was in the Cath. Lab they would run a test and if the test worked they wouldn't need to do the surgery. If it failed they would take him straight to the OR. We agreed, signed consent and once again we said goodbye to our little boy. I should tell you that it was the longest wait of our lives but it wasn't. We spent the time praying, and before long the surgeon reappeared. My stomach quivered when I saw him but he smiled at me and I felt peace. The test that day went well, the device was implanted in Joshua's heart and will remain there. We went to see him an hour later in the CCCU and for the first time in his life was pink.

Living with CHD is a day by day sort of life. It forces you to think 'now' and not 'one day' because you really don't know how long you will have. When the doctors tell you that you have 6 more months until the next ECHO you rejoice because you have 6 more months for someone to do more research, to come up with new ways to help, 6 months for funds to be raised, 6 months for people to be trained, it means you have 6 more months with the child you love so much it hurts. This is why I care so much, this is why I clog up twitter and facebook every time Heart month comes along.

I didn't lose my son, every day I thank God for more time with him. I am one of the lucky ones, and that is something else I know. There are many parents who have faced the worst that CHD can do and lost the battle, there are parents even now who work tirelessly to raise awareness, raise funds, change laws so that it what happened to them won't happen to us. I thank God for them and for the little warriors that didn't make it and I pray daily for the survivors, that there will be 6 more months for them too.

The device in Joshua's heart, the one that saved his life that Monday in July 2008; it was only created five short years before. If not for the research being done we wouldn't have Joshua with us today. There is hope, but first MUST come knowledge.

My guys are helping raise awareness this year! Will you join them?

In all my research I am finding that Canadians are not as involved in CHD awareness. There are Moms out there dedicated but the media is a tough nut to crack and though districts and communities are declaring February 14th 'official' CHD awareness, the sad reality is that still most media are not getting involved. I would like to see this change... as would my guys. I need your help with this like never before. COME ON CANADA! We are a proud and mighty nation, we can be LOUD when it comes to hockey, Tim Hortons, our toughness against the weather... I am asking you to GET LOUD for our heart warriors too! Help me out. Share the posts about CHD awareness and help these two little men with their cause. It matters... it's not a funny joke, they aren't trying to get a puppy, they don't want a trip to Disney land if they get 1 million likes... they just want you to know about CHD, what it is, what it does to the kids affected, what you can do to help. Josh wants it for himself, so that he can grow up big and tall and one day be a fireman or a hockey player (depends on any given day) and Kaleb wants it for his big brother, because he loves him and considers him his best friend.  Me? I want it because there are more kids out there than just mine, more little brothers and sisters who want to have their sibling around for the long haul, more kids who know all to well the pain and suffering of living with CHD. Kids who are not yet born who could have their lives saved with early screening and proper care, and I want my son to grow up and find that there the health community cares about him and has the ability to help him when he's ready for it.

Meet Logan

One of the great things about this blog is hearing from readers who have similar stories to share, parents who are coping with the same terrifying defects and know too well what CHD can do to a family, and hearing about the amazing kids who are braver than they should have to be. This month I will share some of these stories with you, this being the first. 

Submitted by Logan's Mother

Our lives were shattered with the utter of four little words, “I hear a murmur.”  As our pediatrician looked up from our two week old son and began to explain how I needed to take Logan down the hallway for a few tests I found myself in complete shock.  In total disbelief that this was even happening I felt numb.  I simply followed orders and walked down the hallway with my mom to get Logan an EKG and chest x-ray.

What was supposed to be a happy day filled with our new baby boy’s two week well child checkup, a photo session with our three year old and his baby brother and fun time with Grandma quickly turned into every parent’s worst nightmare.  When the tests were complete we returned to the office to await the results.  Making the phone call to my husband who was at work was not only emotional but very difficult.

In a matter of minutes your life can change forever. 

Three days later we found ourselves sitting in an exam room at the Children’s Hospital, an hour and a half away from our home, reeling from the news we had just been handed.  We received confirmation that something was indeed wrong with our baby’s heart but what we thought was just a Ventricular Septal Defect turned out to be much more severe.  Our precious little guy not only had a VSD but he also had D-Transposition of the Great Arteries, Double Outlet Right Ventricle, Pulmonary Stenosis and a Right Aortic Arch.  All of which were killing him.  His oxygen saturations at the time of his diagnosis were in the 60’s and he was in heart failure.  He required immediate intervention in the pediatric cath lab to save his life.  Those final moments that I rocked him before they took him into the cath lab were the most agonizing moments of my life.  I was devastated by his diagnosis, fearful of the unknown and terrified of losing him.

After many tears and several hours later he came out of the cath lab and was placed in the NICU.  For the next three days we were thrust into what seemed like a foreign land with a foreign language.  We had to learn medical terminology, take CPR, understand Logan’s new cares and come to grips with everything his future would entail.  It was overwhelming emotionally, physically and mentally.  Yet we were so unbelievably thankful to have our baby boy still with us.

We were able to take Logan home for two weeks before it was time for his first heart surgery. 

When Logan was five weeks old he had his first heart surgery, the BT Shunt.  Handing my baby over again to the arms of strangers was incredibly hard.  I was a wreck the entire time he was in surgery and praying that he would make it out.  Several hours later he did and seeing him for the first time after surgery was quite traumatic.  They show you pictures in a book prior to surgery to try and help you to cope with all of the things you are going to see post op but it doesn’t even come close to what it is actually going to be like.  The many, many machines pumping lifesaving mediations through his body, the ventilator helping him breath, the shocking scar running down his chest, the constant beeping of monitors, chest tubes protruding from his chest, and his little lifeless body laying there unable to move or open those big brown eyes.  It was absolute torture not being able to pick him up and swaddle him in my arms. 

Logan spent the next 31 days in the hospital suffering many complications and setbacks along the way.  He had focal seizures, bloody stools later determined to be caused by a protein allergy, breathing difficulties and a severe oral aversion that led to needing a feeding tube.  Being away from our three year old son, Wyatt, for so long was hard on all of us.  He came to visit on the weekends but it was so upsetting to him and us every time he had to leave.  All we wanted was to be together again and once Logan was stable enough we did.

Logan was still very sick when he came home.  He was on many heart medications, had severe acid reflux, a severe oral aversion and a feeding tube.  We spent a lot of time the next eight months going to see our pediatrician and traveling for cardiology follow-ups.

When Logan was ten months old he had his second heart surgery, the Rastelli.  This time around we were more prepared and took the speed bumps along the way post op a little better.  His recovery time was much shorter despite developing a cyst behind his vocal chord that required laser removal so he could breath, trouble coming off of milrinone and a mystery infection.  During the Rastelli surgeons replaced his severely stenotic pulmonary artery with a synthetic conduit.  Since the conduit would not grow with him we were told to be prepared for more surgery in the future to replace it as he grows.

Brining him home from this surgery was such a huge celebration for us.  It was the first time were going to be able to take him out in public, attend family gatherings and just feel like a somewhat normal family again.  Six months later, however, we were quickly reminded that the world of Congenital Heart Defects can be unfair.  We learned at a routine cardiology checkup that Logan’s conduit had a huge bulge in it and he was going to need a chest CT Scan to determine how serious it was.  When the results came back it was confirmed that Logan needed an immediate cath to see if they could perform an intervention to buy him a little more time before he needed surgery again.  We were devastated because we had originally been told to not expect surgery for a few years, not months later.  Thankfully the trip to the cath lab was a success and it bought us some time. 

Logan endured his third heart surgery when he was three years old to replace his conduit and remove a muscular growth from his right ventricular outflow tract.  This surgery was one of the hardest for me personally.  It was very different than handing over my baby that I barely knew.  This was my sweet little boy who kissed me, hugged me, shared with me his sunny little personality and was the light of my life.  The thought of having that ripped away from me was agonizing.  But Logan once again pulled through his surgery and recovery despite suffering a surgical complication known as Dressler’s Syndrome which causes fluid to develop around the heart along with other symptoms.

Since then Logan has grown into a vibrant free spirited six year old little boy who lives each day to the fullest.  He is sweet, silly and funny.  Looking at him now you would have no idea all of the things he has been through the past six years.  He started kindergarten this year and has been busy making friends, something he has wanted for so long.

Every person in our family has been changed by this journey.  While it has not always been easy and will continue to be something we have to battle every day in the future as Logan will require more surgeries,we wouldn’t trade it for anything.  It has made us who we are, brought us all closer and taught us so much about what is really important in life. 

We are incredibly thankful for each day we have been given because we know how close we came to losing everything.  At the time of Logan’s birth it was not routine practice to receive a 20 week ultrasound in my OBGYN’s office to screen for heart defects.  It was also not routine practice to have a newborn baby screened for heart defects before leaving the hospital using a pulse ox.  Not a day goes by that I don’t think of how things could have turned out so differently because our baby came home undiagnosed with life threatening congenital heart defects.  Thankfully due to the efforts of so many amazing heart moms this will one day no longer happen.  Legislation has happened or is currently in the works in many states to make pulse ox screening mandatory on every single newborn.  It is a wonderful feeling to know that one day no family will ever have to find out about their child’s heart condition until it is too late.

Our family had the amazing opportunity to be filmed for a documentary on congenital heart defects called The Heart of the Matter that was produced by TMK Production and The Children’s Heart Foundation.  It made its televised debut on PBS stations across the United States last summer.  If you have yet to see it you can watch a trailer for the movie by visiting http://www.congenitalheartdocumentary.com/

To learn more about Logan’s journey and to follow our family’s story visit our blog at http://www.whenlifehandsyouabrokenheart.blogspot.com

5 questions

This has American statistics but the questions you should ask hasn't changed.

Finding out about CHD was not a choice for us as a family. Until Joshua came we had never heard of congenital heart defects. When I heard the term 'birth defect' I imagined a woman I saw once when I was a kid who had a tiny hand coming out of her elbow. I had no idea the devastating things that can happen to a baby while in the womb. My biggest concern on learning that I was pregnant was miscarriage, once I made it to the second tri-mester I breathed a sigh of relief and began to get really excited. We were asked if we wanted to do any genetic testing, for different types of syndromes etc. but we said no, in our mind the child was there, why worry what might happen when he was born? Neither Tim nor I believe in abortion as a choice, so why stress more tests?

The one thing we really did want to know, mostly because neither of us are very patient people, was the sex of our child. I can't tell you how excited I was for that ultra-sound. It was something I counted down to, anticipated more than my birthday (a huge deal for those of you who don't know me) and when the day came I couldn't contain my excitement. We had a name picked for both sexes, Kiera for a girl, or Joshua for a boy. Tim and I both hoped for a boy, maybe that's wrong, maybe we should just have hoped for a healthy child, but we both longed for a son. When they showed us his 'package' (the technicians word not mine) we both cried with joy. This was our Joshua. We saw and heard his heart beat, not knowing that it was a broken heart we heard.

Just a week later we got a call asking us to go for a stage two ultra-sound, there was a small chance of a problem they said, 'probably nothing' but they wanted to make sure. So Tim and I made an appointment and off we went. A week after that we were asked to go to the Fetal ECHO lab at Sick Kids in Toronto. We were again told 'it's probably nothing, let's just be sure."

As you know, this was the day that we came to know of Joshua's heart defect. This was the day that we learned first hand what CHD is. My prayer is that you hear about CHD here on this Blog, and not in a hospital.

If you are regular readers to this blog then you have heard the story before, but bear with me for a moment. I have a purpose to rehashing this particular tale.

There is nothing worse than hearing a doctor tell you that your child is sick, nothing worse than hearing him say 'there will be no miracles here', nothing worse than staring death in the face and having the professionals say there wasn't much hope, that you should abort and try again. 

This post is about hope, hope that we found because there are people out there doing research for CHD, people who are doing what they can to improve the chances for little boys and girls not yet born. Joshua is now a statistic in hope. He's proof that there are kids who can survive an early birth with a heart defect. However, and this is important... he's also evidence that early detection can save lives! If we hadn't known about his heart defect Joshua would not be here. I would be visiting a cold grave each week rather than getting warm snuggles and soft kisses. I am not trying to be dramatic, I am just simply trying to make my point clear. One of the reasons I feel so passionate about CHD awareness is because people, young men and women having children, need to know about early detection. The more knowledge you have the better the chances that your baby CAN live!

I don't know how many times through out the pregnancy we thought we he would come early, each time they would say to me 'we need to take him today' (he was technically viable, if not for the heart defect). Each time we would ask for a pediatrician to come in to advise us on what to do, and each time the Dr. would say 'with his condition he would not be viable'. The other doctors who had wanted to take him early would dig in and do their best to keep him where he was so that we could have more time until he became 'viable'. Finally, when Josh was five weeks early they had no choice to take him. As you know from the last few posts, we should have lost him that night. If not for the amazing team at both Mt. Sinai special pregnancy unit and Sick Kids in Toronto we would have lost him. By all accounts we should have lost him.

There are many reasons to educate yourself on CHD's, to educate those around you. Early detection is just one of those reasons. I ask you again, to consider sharing this post with those you love, with friends, followers, twitter-nation, whomever you choose. Please, don't just read this and move on to the next posting of interest. Share it, and help us to raise awareness.

What's the point?

Josh is clearly a blessed little boy, just read this blog and you will know that as his parents we feel he has and is receiving the best possible care through Sick Kids hospital in Toronto. He has already survived 5 years longer than he should have and he's only 5 years old. So the question that begs to be asked, why the need to raise awareness for CHD (congenital heart defects) at all? What's the point?

This month I will make it my mission to help you understand why I feel it's my job to help raise awareness, and more importantly I hope to get your help. My request is simply this. Help me get the word out, share the posts, email them to friends, tweet them, hook them up with the Path, post them on Facebook. There is a serious lack of knowledge surrounding this defect, and it's costing lives.

I have said this before, but I feel one of my main jobs as the parent of two boys is to see them 'safely' into their futures. What I have discovered on this journey of understanding Joshua's heart and medical care is that though he is blessed now to be in a beautifully designed system that cares for his every cardiac need; this will not be the case when he is released into adult care at 18 years of age.

With the advance of medicine in the last number of years the kids who are born with CHD are surviving into adulthood (obviously great news!), and so the care of Adult CHD patient is very young in it's development. In many ways this is a baby system, and I don't want anyone to lose their child (because no matter how old they are, they are always your child) to a system that is flawed, by lack of funding, research and staff.

Let me break something down for you:

12 Canadian children are born each day that have some form of CHD

180,000 estimated Canadians (adults & kids) are living with CHD right now

100,000 estimated Canadian adults are living with NO program equivalent to that provided for children or people with acquired heart disease.

There are only 5 regional facilities that have been identified as 'regional center of excellence' (with CHD specialists)

There are only 22 Cardiologists in all of Canada who have been specifically trained in the field of adult congenital heart defects

Pretty much sums up my concerns right? How can I do my job as Josh's Mum properly if I don't do everything in my power to see those numbers change before he reaches 18 years old. What good is it to help him arrive at 18, only to lose him into an adult system that isn't ready for him?

As the month progresses you will learn more about the issues surrounding the adult system, the needs, the areas of concern, and the ways that we as a community can help.

In the world of social media, where you will share a funny picture, an ad or contest without thought or hesitation I ask that you take a moment to share this as well. Help me, help Josh and the 12 babies born today with CHD, help the 100,00 adults in our country who are not receiving the care they need in order to live long and healthy lives. The faster we raise up as a nation and ask for a better system, the more the youth heading into the field of medicine learn of this desperate need, the more the adults with CHD learn about the defect they have, the better the chances for change.

Thanks for your help.

Happy Heart Month!

5 very long short years

At 8:50 pm, on January 31st 2008, (5 long short years ago) I lay in the OR while Josh was taken over 5 weeks too early. They called it fetal distress and couldn't wait for nature to take it's course. As the rolled the gurney out of the room where Tim sat signing consent papers they told us to prepare for his death. 'He will most likely not survive the birth' were the last things I heard before leaving Tim's side. I was terrified. Josh was my first child, I was not a mother yet in my soul but I loved that little baby and I had grown used to his kicking and rolling around. We didn't labour through our progression to mother and child. We didn't bond when they took him from me, blue and tiny, he didn't cry. The nurse quickly held him up so that I could catch a glimpse of him before taking him to another room to prep him for the seemingly hundreds of tubes, wires, needles that would remain in every available spot on his tiny body for weeks to come. There was no holding him, no congratulations, you have a boy. Tim didn't cut the cord. Instead They emptied my womb and then they emptied the room. Tim and I were taken to the recovery room, I shook violently and my blood pressure was through the roof. Most of that night five long short years ago is a foggy nightmare, the only night mare I really wish I could remember more clearly. I saw him once that night, a number of hours later when he was all set to go through the tunnel to Sick Kids. Tim went with Josh and I was taken to my room alone. I was terrified. What if he died and I wasn't there? What if he was already gone and they were too scared of my reaction to tell me to my face. I cried almost all night.

Minutes of life, turned to hours, then days, weeks, months and now here we sit. Five beautiful years later with a wonderful, smart, funny, charming little man who told me today about his great dream last night about riding a roller-coaster through the city, and how much fun it was, he even imitated the screams of delight for me.

I found it funny that on a day that we celebrate his life, he has a dream about a roller coaster. That is the epitome of what life with Josh has been. Five years of slow climbs up the hills, and then fast and terrifying swoops down the rails, arms flown high, screams of fear mixed with moments of triumphant delight.

I look back on that night five years ago and it seems like yesterday in many ways, but if I look closer it's been the longest five years of my life. He was everything I needed, everything I wanted and sometimes my living proof of God's loving, sovereign hand in my life and yet before him I had no idea I needed any of it. I have said this before, but he's one of the greatest blessings in my life and I didn't know I wanted it until he was there, that cold, stormy January night.

Today as he danced out of school, awed that his whole class would sing happy  birthday to him, or when he was (much to my delight) that he wanted Swiss Chalet for his birthday dinner, and cake of course, when he told me for the first time about his dreams, or shared that he wanted to be a hockey player when he grows up... well, I get all girly and weepy because I feel they he was giving me a gift for his birthday.

I have always been awed by Joshua's strength, his courage and his intensity, he's taught me more about courage and resilience than any other person I know. Today, today he taught me that sometimes our prayers are answered yes, but not yet. Sometimes the yes is broken into a thousand little parts that when put together make up on giant YES! Today I saw that these last five long short years have been a thousand parts leading up to a yes. God will heal him, he's already started and he's not done yet.

I don't think I need to explain the long and the short of the last five years. They just were, long to wade through and short to look back on.

Never, ever, say never to Josh, and don't bet that God can't pull off miracles!

self critque: and why it's okay

As a Mum, or Dad as the case may be; our best hopes for our children is for them to grow up safe, knowing that they are loved and with a healthy self esteem. It seems easy enough when you spell it out in black and white on a screen but the reality is as daunting to me as doing a PhD in Bio Chemistry, or Physics or anything else Science or math related. I heard just the other day that as parents we will make mistakes, but our kids will still think we are superheroes  and while that is a cute sentiment it doesn't negate that some of our mistakes, or sometimes just a zealous approach to parenting may cause harm with, or without our knowledge. I am a fairly new Mum, certainly no expert; but already I can see the goofs I have made and in some cases the results.

Some people read this Blog and hear my honesty and say that I am too hard on myself. Let me first start by clarifying something. I am by no means too hard on myself, but I do endeavor to be as honest as possible so that as we journey together through the years you can know me, and I in turn can discover more of myself. Looking at myself harshly at times; at my flaws, my sins, my mistakes, also allows me the opportunity to see the blessings of grace, the beauty of forgiveness and the wonder of change and growth. How is it possible to know success if we don't first know failure?

Making mistakes while raising kids is one of those things filed under 'inevidable', mistakes happen and more often than not they will happen many many times before we get it right, if that ever happens at all.

One of the biggest mistakes I have made and discovered is this: In a desire to help Josh I have spoken to literally hundreds of therapists, doctors, friends, family... anyone who may know something, who may have a fresh outlook or idea. My mistake? I did it all in front of Joshua, forgetting for the most part that while he can't speak well, he certainly understands me when I say "he can't talk, understand, speak..." In my pursuit to help Josh I have discovered that I have hindered him. With all the talk about what he can't do I have been telling him(though indirectly), 'you can't do it' and the result  is that he believes that lie. My fear is that I have inadvertently failed (so far) at one of the most basic of jobs we have as parents, to raise them up to have a healthy self-esteem. The great part, the part that eases the guilt I feel in the dead of night when I realize what I am doing to my son, is that I have time to counteract those actions. I can be proactive, I can change. I can stop talking to therapists in front of him, I can keep conversations with Tim or other family and friends (regarding Josh's needs) out of his hearing range. All hope is not lost, I can slowly help him build back the confidence that he's losing.

As parents, to any child (not just a child with special needs) we forget that they are all seeing creatures. When I am hurt or sad or scared my guys pick up on it and become anxious; just as when I doubt their ability, they too doubt their ability. Just the other day Tim was trying to get Josh to put on his own coat (something I have taken to doing for him to save time) and he said "I can't" so Tim said that he could do it, and they had a little chat about not saying "I can't" etc. Josh turned to Tim and said 'Mummy can do it'. It was just another example of how I (in this case, in an effort to make my own life simpler) am teaching my son that he 'can't'. How often have I preached at him that there is no such thing as 'I can't' and yet my actions have not been living up to my words. I have been called to account by a five year old.

Am I being too hard on myself? No I don't think so. If we are not always looking at our lives and at what we can change for the better then we will cease to grow, we will cease to change, we will cease to move in any direction whatsoever. As parents, our willingness to look honestly at the mistakes we are making along the way is our greatest hope of achieving our best hopes for our kids. That they will grow up knowing they are loved, that they will be self reliant which will lead them safely into their future, and that they will mature into confident young men and women.

get ready

Next month is February, and that to this Blog means that it's CHD awareness month. For the past few years I have devoted every February to raising awareness about CHD, it's affects on the patient, the family, what needs to be done, what's being done and anything else that has anything to do with congenital heart defects. I have been doing fresh research and I have to say there is some cool stuff happening in the world of heart science! What I am sadly aware of though, is the serious lack of 'Canadian' Support that CHD is receiving. You don't get a lot of info (new at least) from anything Canadian, not the government, not the researchers, not the doctors or news media. This is an old lament (see last February blogs to see the frustrations I faced trying to raise awareness last year). This year I am starting fresh. I have been gearing up and getting re-energized for a new awareness month. As a 'Heart Mum' it's now become my job (especially if no one else is going to do it) to be a voice for the kids who have CHD, and for those who will be born with it. You can view my page on this blog that is devoted to congenital heart defects for more facts and figures but please, come back through out february to hear and learn more! 

All that being said, if you are a heart parent, a patient or a health care provider who wants to share your story,  contact me and I will make room for your post on the blog for this important issue! 

IF

As a parent of any child, we want what is best for them. We want to help them achieve all the things that we know they are capable of and we want to see them happy. We want them to do what they are passionate about and we want to see them healthy. Today the passage that we talked about in church was in Mark where a young boy is filled with a deaf and mute evil spirit whom Jesus rescues him from. As I sat listening to the sermon I couldn't help but hear the the conversation between Jesus and the Father...

Mark Chapter 9:

²¹ Jesus asked the boy’s father, “How long has he been like this?”
“From childhood,” he answered. ²² “It has often thrown him into fire or water to kill him. But if you can do anything, take pity on us and help us.”
²³ “‘If you can’?” said Jesus. “Everything is possible for one who believes.”
²⁴ Immediately the boy’s father exclaimed, “I do believe; help me overcome my unbelief!”
²⁵ When Jesus saw that a crowd was running to the scene, he rebuked the impure spirit. “You deaf and mute spirit,” he said, “I command you, come out of him and never enter him again.”
²⁶ The spirit shrieked, convulsed him violently and came out. The boy looked so much like a corpse that many said, “He’s dead.” ²⁷ But Jesus took him by the hand and lifted him to his feet, and he stood up.

As I sat listening to the sermon I thought about all the times I have gone to Jesus on behalf of my sons (Joshua particularly for healing). I have long wrestled with the notion that I may not have enough faith, or maybe I am just asking in the wrong way, or maybe I have harbored secret doubts that have prevented God from healing Joshua. These are things that in my head I know can't stop God from moving, from working, but my heart sometimes doubts. 

As I sat in church this morning I heard this story with fresh ears. The Father uses the word 'if' (verse 22), it's a word I have found myself using regularly in my prayers for Josh. I don't know if I doubt that God CAN do it, but rather that he 'WILL' do it. Two very different things. What struck me though, what Tim pointed out in the sermon, was that Jesus didn't say to the father 'come back when you have more faith' instead he healed his son. What an incredible notion! How freeing to hear those words! To know that my doubts, worries and failures are not being held against Josh. I can pray and ask for healing, I can even express doubt and use a word like 'if' and God will work regardless. What I really need to pray, what I really need to be asking, is what the father in this story was praying and asking. 

"Lord, help me overcome my unbelief"

Boys!

 As a woman who was raised with only a sister there are things that come as a surprise to me; and the surprises come on an almost daily basis. Who knew that 'poop' could be an always entertaining conversation around the dinner table? Or, that 'potty time' could turn into quality time of discussing the size of their 'poop'? Burps, another favorite topic and endless reason for laughter (second only to Farts) are simply becoming a way of life here in the Haughton House. Fingers held up to look like guns and little voices saying 'I'm gonna shoot you' are another source of endless fun and always end in a round of giggles when someone 'dies' of a mortal 'gun' wound. Swords, pirates, cars, buzz light-year lasers, flying, jumping from the couch to the floor, from bed to bed or from the dining room chairs and of course the ever popular game of 'superhero vs. bad guy' to which Josh always seems to be the good guy and Kaper always the bad guy. The biggest thing I have noticed with boys is the word 'competition'. It's always a race, always about winning, always... and I really mean ALWAYS, about who is going to get there first, finish their food first, get into the car first, get to school first, get their coats on first, get into their shoes first, get onto the potty first, get into the bath first, and of course who has the biggest poop or longest pee. Nothing happens in this house that doesn't end with someone saying "I WIN!" and jumping up and down with glee.

There are of course the negative sides of raising boys, the endless streams of tears when one boy takes another boys toy, or when a sword is wielded a little too hard, a jump from the couch is landed wrong or in the worst case scenario one boy lands on the other. There are the towers built that the other 'crashes' or the Lego house that the other decimates when pretending to be a bad guy bent on destruction. There are fists that get flung when someone is tired or angry with the other for some unknown wrong they have committed or of course the reason could simply be that one kid (or both) are tired and just grumpy (or in Kapers case it could just be hunger). The reason doesn't  necessarily matter, boys are physical in a way that girls just aren't. Boys throw a fist first and ask questions later (if ever).

A few weeks ago Tim had a Sunday off from St. Paul's so we made the choice to go to his new church (Little T) for a Sunday service. At the end of the service we were introduced to the parish as the new rector and his family. As you can imagine, when the service ended there were a lot of people who wanted to say hello. We stood in the center isle greeting people and chatting and the entire time I had to literally hold both boys by the scruffs of their necks to break up the fighting. At one point Josh had Kaleb by the back of his pants and was pulling his pants down! One man, who witnessed me admonishing Joshua to behave whispered in my ear 'if it matters, Kaleb threw the first punch, Josh was defending'. I was mortified! 'YUP, here's your new senior pastor and his boys and the Pastor's wife who can't contain them!'

These things should not come as surprises I realize, I had friends who were boys growing up. I saw fist fights, I saw races and competitions and all the other things I have mentioned above. I heard the boys in class making farting noises with their arm pits and of course I heard the often repeated 'whoever smelt it dealt it'. Yet, no matter what I saw when I was younger I still find that when it happens in my home I find myself wondering how I created such monsters; then I pray that somehow, some way, I will find a way to raise them into men that can be seen in public. (you can pray with me for that if you feel so inclined!)

However, I should mention that the law of brotherhood is not always 'beat him until he cries or bleeds'. Today, after fighting over who would get into the car first, Kaleb turned to Josh and said 'go away Josh' to which Joshua smiled and said 'I can't go away, I love you'. If one of them gets hurt the other is always concerned, if one of them is crying about something they don't like, the other is there to protect them and inform me that 'he doesn't like that Mummy'. If one is in trouble, the other tries to make me laugh or stop the time out etc. They are truly the best of friends even when at times when it seems they are the worst of enemies.

Shakespeare says 'for he today that sheds his blood with me shall be my brother' and as I watch these two little guys growing up and learning how to be a friend to the other I find that there is no truer quote. They shed blood together, (real or imagined) and their bond is only made tighter. Rue the day that someone messes with one of these two because the other will be a force to be reckoned with.

DISGUSTED

Every so often a good rant is in order... I try to keep them to a minimum but it's been a while since I have written one therefore, I feel that I have earned some leeway from my readers... :)

I am noticing a very disturbing trend with social media, and online news that I just have to make a comment on. In a world where we can sit safely behind our computers and type whatever the heck we want without any threat to self we have become a society of 'haters' (for lack of a better word). How many online news articles have you read lately where the 'comments' section is filled with the disgustingly stupid opinions of the ignorant readers? Everyone has an opinion, no one seems to have the facts, nor grace, mercy, or as is most cases, brains. Am I being too harsh? Good, I am sick to death of hearing the racist, the rude, the ignorant comments of a nation that is supposed to be 'tolerant'. I think the reality is that we say we are 'tolerant' when on the streets, but the true check of our tolerance should be done when we are safely behind our computers, smartphones, ipads, androids, blackberry etc...

Twitter? What could be a great tool is being used to crucify people! Add a hashtag (#) to Lance Armstrong for example and see the truth of what we are really like when we believe we are safe. Am I sad that Lance let himself down? Let us down? Yes. Do I think he was brave to finally come forward and say the truth... YES I DO! Especially in a day and age when he must have known what would happen to him in the media. Everyone has an opinion, yet everyone seems to have forgotten their own mistakes, their own lies, the things in their own lives that remain hidden to the unseen eye. Is Lance the only guy in the world to cheat? Is he the only guy in the world to lie? Is he the only guy in the world who hid something from someone? No of course not! So why are we so shocked and horrified that he is actually (dare I say this?) a sinner??

-Insert shocked face here-

Let's return to Twitter for a moment. Today @CP24 (the local Toronto news) tweeted that a 15 year old boy who was shot at 2:30 this afternoon died at the hospital not very long after arriving. It's horrible news! He's a kid, regardless of his affiliations and regardless of his mistakes. No news is out as of yet about what really went down in that apartment complex, no news about how he was involved (not that it would matter - he's still a kid who died too young with parents who loved him). One of the comments made on Twitter regarding this tragedy? 

"Another aspiring rapper gone too soon!"

I am not joking, this racist, disgusting comment was made about a young boy who was shot multiple times and died just hours ago in a Toronto hospital. How is it that we as a society claim to be more 'tolerant', more understanding, more 'civilized' than any other time in history and yet this sort of thing is still happening? Why, as a reader of news should I be forced to see the comments of these ignorant biased jackasses?! 

Changing up the lens

I entitled this Blog 'Through the lens of Motherhood" for a few reasons. 1) I am a photographer by trade so I view a lot of life through a lens of a camera. I look for things in life that have beauty, even the ugly can be seen as beautiful if you look at it correctly. A broken down old barn, a dirty canal in Venice, a rusted out old truck, an old and broken window are all things that through the right lens can be made into something of beauty. Looking at people and objects or nature through a lens allows you to see things that you wouldn't normally see, it gives you a chance to see something dirty and old become new and fresh, maybe even something you might actually hang on your wall.

I have tried to take that act of 'looking through a lens' into my life as a mum as well. The daily grind can be just that if you are looking at it with unseeing eyes, but if you put the right lens on you can see beauty at every turn. I see the boys differently, I see my husband differently and more importantly I see God differently.

Through the lens of motherhood I see the love of God, the love I feel for my boys, though not nearly as great as God's love for me, is unconditional and allows me to see God through a new lens. Today as I watched Josh playing with Kaleb I reflected on my love for them and I was struck again by how my heart has grown since knowing these two fast growing little men. The smallest accomplishments are something I rejoice in, their failures or setbacks are things I want to encourage them at, when they make a mistake I correct them  and get them to try again and when they are 'naughty' (for lack of a better word) I set about teaching them a better way. It made me think about God's judgement, and how so often it is said that God's judgement is contradictory of His love. Yet, as I watched these two kids I realized that if I didn't care, if I didn't love them so much I wouldn't care how they turned out. If they ended up violent or addicts or mean or... well, anything negative, it wouldn't matter to me at all because I would only care if I loved them.

When I see God lovingly correcting me or teaching me, I often stop and realize that he must love me a great deal to care enough to want me to change and grow into someone more beautiful.

The same can be said of the difficult times of suffering in our lives, we can look at it and see all the negative things that have happened and we can dwell there, or we can slip on a new lens and see all the ways that God is loving us through the trials of life. On Sunday we heard a sermon about mountain top experiences and living in the valley, and while the views in on the peaks are stunning; as someone who once lived in a valley I can promise you that there is beauty there as well. We can look up to see the majestic mountains, we can see the green of the grass and smell the wild flowers. Valley's don't have to be a place of darkness.

This is a random post, I realize that, but in an endeavor to share my thoughts with you I sometimes ramble. My hope for you today is that you find a new lens, or take a fresh look at the one you already have on. Life is beautiful, even when it hurts and everywhere you look there is evidence of God's infinite love for you.

Potty training... WOW

Last year you may remember that the blog turned into 'the toilet diaries' as I made repeated attempts to potty train Josh. It was a year long saga (from his third birthday to almost his fourth) and tale of woe that ended triumphantly when I discovered that it was ME who was needing the training and not Josh at all. When I became consistent so did my little man Josh and though the battle was long and hard I did in fact win the war. Since this is still so fresh in my mind you will (maybe) have some empathy for me when I tell you that Kaleb is three and though I had heard repeated 'he's not trained yet' comments made to me I just couldn't seem to muster the energy I believed it would take to get our self proclaimed 'baby' to use the potty on a consistent basis. I did ask repeatedly, 'do you want to learn to use the potty?' to which the answer was always a loud 'NO!' (I have learned not to ask a question if I have a designed answer in mind). I told him constantly that he was a big boy, to which he would respond 'I am not a big boy! I am a baby!'. So, the diapers continued and I enjoyed my year of potty training peace.

However, the cloud that hung over me knowing that I would eventually need to train him remained and on Tuesday while Kaleb was having his nap I mustered up as much courage as possible and prepared for battle. When he woke up I went upstairs and took him out of his diaper, then I put him in underwear and told him (I didn't ask) that he was a big boy and was GOING to use the potty. We had four accidents that day, 2 the next and none since. Our little man, the stubborn one, the kid who I thought would give me issue over this is now using the potty without any trouble! Unreal right?! I know that Tim and I are still reeling in shock.

The biggest difference between Josh and Kaleb? Why did Josh take so long and Kaleb next to no time at all? I honestly believe it was my approach to it this time. I didn't give him a choice. I threw out the diapers, I used proper underwear (no pull ups) and the most important thing was that I left it totally up to him. I refused to get into a power struggle with him. I told him that he had to keep his pants dry and reminded him (frequently) to tell Mummy if he needed to pee or poo. Not that I am a master of potty training or anything but whatever works right?! I had a few moms asking me about Kaleb's success and after reading so much online stuff about taking the kid every 40 minutes or so to 'try' I figured I would write a post about Kaleb and how giving him the control actually took next to no time at all. Were there any messes? YUP, but after trying the other methods with Josh with no great results (he's trained but it took forever) I figured maybe another voice should be out there on the internet giving Moms other options. Not once did I tell Kaleb to try to pee, not once did I take him to the potty (unless he had an accident - to which we made a big deal about how gross his dirty underwear was and then how nice his clean underwear was).

So now it's out there... just a second thought on potty training.

If you had know me when...

If you had known me in you my younger years and then met me today you would probably not recognize me. I was an angry and rebellious kid looking to cause trouble when possible; most of which only ended up hurting me. To see me then and find out that I am now a Pastor's wife makes many people laugh. One man was quoted as saying 'God certainly has a sense of humor!'. The truth is, that while in the thick of my rebellion and against myself, God and anyone else in authority over me I was never far from the calls of His still and quiet voice. I look back now through a lens of God's love and what I see are the thousands of times he came in to rescue me, the way he took care of me and how he guided me straight to his waiting arms. Now that I am here, and facing being a Senior Pastors wife I would be remiss to not tell you how that terrifies me! Too many times I have been called 'Atypical' and 'non traditional' in my approach to my 'role'. This has led me to a serious question... one that I am hoping I will get some responses to... What is a 'typical' pastors wife look like? What is a traditional pastors wife doing that it is so traditional? Is the generation changing things or are they still looking for this type of woman?

Seriously at a loss here and would love your input as I make steps to support my husband in his new role.

Thanks!
L

and the year begins...

What an interesting week it's turning into. Holidays are over, the kids are returning to school and I am once again finding that the time I thought I would have when they returned is going too fast to get a thing done. Blogging has taken a hit this year and I have to wonder how I managed it last year with Kaleb home all week and driving Josh to and from school in downtown Toronto? This January & February we are blessed to have Josh in TWO therapy sessions a week!! This is FANTASTIC news but it comes at a cost of time. Time for Kaleb, who seems to somehow always manage to get placed second to Josh's medical concerns and time for me to accomplish things I need to get done. I was spoiled this past two weeks with Tim home, my house was clean, the kids were fed properly and I met all my deadlines. Today I sat down and began to mark up my calendar with all the things that need to get done and as I sat writing on almost every square I had to sigh and take a larger sip of my coffee...

I remember once when I was a teenager thinking that I would want to be a stay at home Mom because then I wouldn't have to work. I look back on that now and cringe. What planet was I on?!?! From morning until night, no breaks and still not enough time to do all that needs and wants to get done. Even now as I write this I am scared to look at anything but the computer because the guilt will set in about all the things I still need to finish before the boys get home. Somehow the older they get, the more independent they become the more there seems to be to do.

The thing is though... and I have thought long and hard about this. What would it look like if I was working full time out side the home and not just part time as a photographer? I think my mornings are crazy now? I think my house is messy now? I can imagine coming home from work around five, having two hungry kids who need my attention because I haven't been there all day and who need to have a meal made for them, I would have a still messy house that would have to wait until the kids were in bed, I would have a non existent blog and life in general would be exhausting. As I started pondering this I realized how incredibly heroic Moms who are working full time outside the home are. I thought of my own Mom who worked through out my childhood and yet still managed to get it all done. I had to take a moment to stand up and say WOW to these women, kudos my friends you are amazing!

I also had to say a prayer of thanks that God has made it possible for me to be home with my guys, that it's possible for me to take Josh to all his many appointments without paying consequences at work. To make it possible for me to have snuggle time with Kaper after his nap, or see Josh's face light up when he teases me during lunch. Through out the last five years of motherhood I have sat many times to reflect on the blessings in my life and today is just one more of those days. The dishes from breakfast are still on the counter, the boys pj's are still on the floor and none of the beds are made but at the end of the day I am blessed to be here to do it for them.

Have a great Tuesday!
L