Charlie

I am not going to go into a long diatribe about the how or the why... but yesterday morning we had to say goodbye to our dog Charlie. For those of you who have ever lost a pet you will understand better than anyone why this week has been such a hard one for me.

When I moved home from Austria, almost 8 years ago now. I moved to city where I knew no one, it was a choice I made and it was the right choice, but it was lonely. I worked at home, I didn't go out much because I didn't know anyone, and it was winter so it always just seemed dark. I had just moved back from a castle in Austria filled with people I loved, I worked with great friends, lived with great friends, and often I would hope for a quiet night at home because the social life was so busy. I loved my community in the Austrian Alps, and going straight from a community of about 60? people (not including the guests who quickly became friends), and moving into a small suburban apartment was a bit like culture shock. Those first months back in Canada were some tough months. Many nights I would drive along the lakeshore in tears, trying to understand why God wanted me back here, when I had sworn I would never come back.

In March, just a month and a half after I came home from Austria my Mom and Dad got me an early birthday present. His name was Charlie, he was 9 weeks old and the sweetest ball of white fluff I have ever seen. We quickly became best friends, he snuggled around my feet while I worked, got tired a minute into our walks and wanted to be held, and kept me company through some dark times. It was because of him and a look he gave me that I realized I was pregnant with Josh, (odd I realize but true). He sat with me and comforted me while I worried about my unborn child, he was at my feet anywhere I went, I haven't had a shower or bath alone since the day he walked into my life. I haven't rinsed a dish either.

It's a funny thing, how we have a pet for so long, and we love them so much, but don't realize how much a part of our lives they are until they are gone. The door bell rang yesterday afternoon and I braced for the bark, only to be met with silence. I went to the washroom and clicked my teeth in a way that let Charlie know where I was, but he didn't come. I had to actually stop myself from putting the dishes on the floor for him to lick off, and last night was the first time in 7.5 years that I didn't put him out one last time before bed.

One of the hardest things about this week (other than making this final decision) was figuring out how to tell the kids, with a sick kid who worries about death you can't exactly say it how it is. So instead we said that the dog was old and that old dogs sometimes need to go to a place where a lady will 'take care of him'. *Not a lie, but not totally clear* - I don't know how much they understand, Kaleb is more sad than Josh at this stage but he's also more open with his feelings. The Kaper, who for all his little 'kapers' and often grumpy attitude was so incredibly compassionate and sweet with me yesterday. I caught a glimpse into the man he will one day become and I am so proud of him. He did his best to cheer me, and at one point in the day when we got some other not so great news and I finally broke it was the Kaper who crawled into my lap and gave me hugs and kisses. What a genuinely sweet young man he is.

They always 'when it rains it pours' but let me tell you. July is hurricane season in the Haughton House.  More on all that later. This post is for Charlie.

I love you pup.

One by one

Sometimes life becomes too much. You know? This summer is turning into one of those summers where I just want to hide and pretend I am actually not human at all but rather an ostrich, head buried deep in the sand. When I think of the word bliss what comes to mind is anything but here, anything but what lies ahead, anything but where we are at. That sounds... dark. I realize that. I have been in a funk this week, and I can't shake the feeling of heaviness that is resting on me this week. For a number of reasons it's been a tough week and as I struggle to see the light at the end of the tunnel all I see is more dark, more aching, more stress...

Kaper watched a Rugrats movie during quiet time yesterday and the one little character in the movie kept yelling 'we're doomed, doomed, doomed I tell you' and later, when Kaper got mad at me for putting him in a time out he yelled at me 'you doomed Mummy!! Doomed!' and I couldn't help but concur with him. That's exactly how I am feeling this week. Like I am doomed. Like this summer is doomed. One stress gets heaped on another and if one more thing gets added to the weight on my shoulders I am afraid I might crumple.

Last night we went to see the play Breathe with Mike Janzen and Jason Hildebrand and as I watched I could in an odd way relate... I am seeking the I love you. I am waiting to hear my Father whisper "I love you" but all I can hear are the voices in my head... the lies of defeat, the whispers of despair, the shouts of distraction. I am longing to hear God tell them to be quiet, to ask me to come sit with him and hear him ask me 'how are you?, how are you really?' because I would have some stuff to tell him. I have some things I wouldn't mind saying to him.

Let me be clear, for the sake of clarity and so I don't get a hundred emails ;)... I am going to be okay, I know that just like I know that the sun will rise in the morning. This is a rough patch, it's a time in life when challenges are out weighing the victories and we have seen these times before and come out on the other side. I am not worried about me in the long run. I just can't honestly say that I always 'feel' okay. There are times, like this week, when I do not feel okay. When I have to text a friend and say a bad word just because it makes me feel mildly better, or when I have to sit and just cry a little because if I don't let the tears out they will drown me, when I can't think clearly because the noise of life is too loud to hear God's whisper. There are times, when panic settles in my throat and I am paralyzed by the strength of it.

The days of summer are however even now getting shorter and one by one they will pass, one by one we will step towards the future with our brave face on and one by one we will find once again the victory that awaits us.

Just got to take that first step...

Ready

It has been awhile since my last post, it's been on my mind as a 'thing to do' for awhile but it seems that these days the list is too long to accomplish it all. So here we are, a few weeks gone by and no posts. I won't apologize, most of you know how it goes with two kids and how busy life can get at times. Our routines have changed and life has become a battle zone between the boys. The Kaper is seeking comfort and limits at the same time and Josh is struggling with a fatigue that leaves him angry and frustrated. In many ways it's like we have a different kid on our hands, he's hitting, kicking, and having about 4 or 5 meltdowns a day, the kind of meltdown that can't be spoken into, just ridden out.

Kaleb, doesn't understand the change in his big brother and he's seeking more comfort and assurance than ever before. He's trying hard not to upset his brother but when you are three and your brother is just grumpy all the time it's hard not to upset him. Sitting beside Josh at the wrong time can send him off. It's been a tough few weeks and as I have been reflecting on it I have to admit (and this is crazy to me) but I am looking forward to the surgery in some ways. I can see how fast he is deteriorating and I long to see him well and returning to his normal sweet self; all of us miss him, including him I think.

All that to say that getting from A to B in a day is about all the three of us (the boys and I) can do. Anything else is getting put on the side burner for the moment, and you know? I am so okay with that. Giving Josh extra love isn't hard, comforting Kaleb is a joy to me. Yes, I hate the reasons for the shift in attitudes this past month or so has brought but it's just one more aspect of living with CHD that we may not have chosen but which we wouldn't trade if it meant now knowing our son.

I would gladly take a pass on living through the next two months, I would happily skip it and wake up in September with all of this behind us but then I remind myself, summer is here, the water guns are out, the sun shining, and the cottage and lake in the not so distant future. Summer is always a time when the blog dies down a little so please, do check in but also, forgive me for tardy posts.... I am out in the sun trying to make the most of the summer we have.

L

#redforjosh has now passed 120, don't forget to send your shots to horizonsphotographs@gmail.com by July 1st to be a part of the poster we are creating for Josh. For more information visit the post Will You?

technical not emotional

I have have been getting a lot of questions about Joshua's particular diagnosis. So I thought I would post today a little bit about his CHD. As I mentioned in yesterday's post, the term CHD, or Congenital Heart Defect is a blanket term for a great number of diagnosis' and I prefer to keep it that way, however in an effort to help people understand I will tell you more about Josh's form of CHD.


Pulmonary atresia (PA)
No pulmonary valve exists, so blood can't flow from the right ventricle into the pulmonary artery and on to the lungs. The right ventricle acts as a blind pouch that may stay small and not well developed. The tricuspid valve is often poorly developed, too. An opening in the atrial septum lets blood exit the right atrium, so venous (bluish) blood mixes with the oxygen-rich (red) blood in the left atrium. The left ventricle pumps this mixture of blood into the aorta and out to the body. The only source of lung blood flow is the patent ductus arteriosus (PDA), an open passageway between the pulmonary artery and the aorta. If the PDA narrows or closes, the lung blood flow is reduced to critically low levels. This can cause very severe cyanosis. Early treatment often includes using a drug to keep the PDA from closing. A surgeon can create a shunt between the aorta and the pulmonary artery to help increase blood flow to the lungs. A more complete repair depends on the size of the pulmonary artery and right ventricle. If they are very small, it may not be possible to correct the defect with surgery. In cases where the pulmonary artery and right ventricle are a more normal size, open-heart surgery may produce a good improvement in how the heart works. If the right ventricle stays too small to be a good pumping chamber, the surgeon can compensate by connecting the right atrium directly to the pulmonary artery. The atrial defect also can be closed to relieve the cyanosis.
Pulmonary atresia occurs in about one out of every 10,000 live births. 

Joshua was also born with an ASD, which was closed when he was six months old. He has had two balloon catheterizatons, one device implanted through a catheter and a catheterization to run tests (that was the more recent one). All in all there have been four. The first two didn't work, so he underwent his first open heart surgery when he was six months where they cut muscle from his right ventricle to try and make more space for the blood to flow, at that time they also cut a small flap around the ASD so that his oxygen levels wouldn't be so 'up & down'; however, by cutting that flap they caused the hole to become to large and Josh nearly lost his life. He was put on life support and almost rushed into more surgery before they decided that they would attempt a repair (using an occluder) in the cath lab. It worked. When he was two he again went into heart failure  and underwent surgery number 2, where he was given a pulmonary valve and where they attempted to fix his tricuspid valve. Less than a year after that (10.5 months to be exact) Josh was once more in heart failure and it was discovered that he was rejecting the pulmonary valve. They went in again, replaced the valve and again tried repairing the tricuspid valve using human tissue.

All these attempts have failed so far, he is now rejecting the pulmonary valve again and this time they will not try to fix the tricuspid valve but rather just give him a new one.

There you go. All the scientific stuff with none of the emotion ;)

L

The Stepiens are praying. #redforjosh

What is it going to take?

Last night I had the pleasure of participating in my first ever 'twitter party'. This makes me giggle because I was actually nervous, more nervous than going to an actual party with new people. Why? Mostly because I am clueless when it comes to 'tweeting'. However, the subject was one that I couldn't ignore and the purpose was to raise awareness for CHD (Congenital Heart Defects). It was a great chance to 'meet' other CHD families and survivors and talk about some of the issues facing our kids or loved ones. I learned a lot and I had a lot of helpful advice given to me but more than that I saw for myself that CHD is not something we fight alone, there are so many families facing this issue, and they are only now beginning, through social media to unite. I have heard all the complaints of social media, the downsides of Facebook and the disparaging remarks about Twitter but I have to say; if not for the world of the internet I am not sure how I would hold up under the strain of CHD. There is so much to learn, to know, to find out and so many questions that beg answers. The doctors are great, but lets be honest, it's the parents who have to deal with living with CHD, it's the parents who have to make decisions, it's the parents who have to answer the questions that the kids ask and it's the parents who have to carry the weight of this illness on their shoulders. Sometimes, it's the loneliest place on earth, being the parent of a sick or special needs kid. To meet others who have traveled the road before you, or walk with someone who is just starting the journey is a blessing and last night as I watched my feed scrolling quickly with names and faces of other CHD families I felt for one of the first times, that we are not alone. There are people out there who understand, they get it in a way that no one else can, and that for me is a relief.

What I did notice, and I am not sure why but the families represented were almost entirely American. I was the sole Canadian representative and that strikes me as sad because I know the stats in Canada, and if 1 in 100 babies are born with CHD, that means there are 1 in 100 CHD families. Where are they?

For a long time, CHD's were separated by their diagnosis.. for example. Josh's original diagnosis was pulmonary atresia. So when raising awareness people have heard of some of the different CHD's... ASD, Tetrology of Fallot,  or Hypoplastic Left Heart syndrome. There are over 40 types of CHDs and they all have thier own names. What would happen if we knew that all of these reasons for lost lives came under one umbrella name (CHD) and that by raising awareness and throwing funding at it could actually (not hypothetically) save lives? What amazes me is that we DO know this. I have read hundreds of articles, thousands of blogs, and yet the only people who seem to know anything about CHD's are those of us who have been personally affected by it. The parents, siblings, Grandparents, friends etc.

There are walks, corporate sponsors, rides, runs, dinners and countless other fundraisers for many of the big name illnesses, (and I don't begrudge them this at all) but CHD is still maddeningly underfunded. As parents it's fallen to us to care enough to make enough noise that change is forced to happen. I am okay with that, but how? What are we doing wrong that no one notices the leading cause of infant death in our country and many others? 

Obviously as a Canadian I am deeply concerned with our lack of awareness in this country, much less than the that of our neighbours to the South, and if I am honest I have to say I am deeply saddened and at the same times seriously annoyed with the media's lack of concern in this issue. My best guess is that it will take one of the media's own to suffer life with CHD before anyone will hear about it and I wouldn't wish this on my worst enemy.

I am throwing this blog post out into the nether regions of cyberspace, not because I have answers to any of these questions but because I have a deep desire to get some answers, or at least to start the conversation that may lead to some answers. Throw your comments up, weigh in on the conversation. I want to know, what can we do to get the media and the public to stand up and take notice, for the funds to start coming, for the corporations to begin to take notice? What do we, as parents, friends, loved ones do to get the ball rolling?

Okay... GO! :)

The date

The second (or is this the third) stage of waiting is over... we have a date for surgery. July 31st, unless we get a cancellation before that. Now, the final stage of waiting can begin, though I think this is the worst part of it all. The knowing, the dark cloud on the horizon that you know has thunder and lightning hiding in the puffy darkness and it's just waiting for you to look up so it will pour down on you. It sounds dire, it's not as dire as it sounds... I guess I am just feeling introspective about it today.

The reality is that it gives Josh a small amount of summer to enjoy the beach, to play with his brother, to NOT attend school or therapy sessions or appointments. It's a good thing really (if that can be said of something like this?).

My main concern now is Josh. He's getting more and more tired, more and more frustrated with his limitations and though we didn't talk about his heart all weekend he came out from school today frustrated because he was tired and not feeling, in a frustrated voice he asked me when his heart will be fixed. I have changed the word broken to special, but I can't seem find a way to explain why his special heart needs to be 'fixed'? I say things like 'you will always have a special heart but we want to help you find more energy...' but it doesn't satisfy him. He mentioned again that God is sleeping, we had a long talk about it today on the grass mid-way between school and home (he can no longer make the whole distance , about 1.5 blocks, without a break in the middle).  I told him that God never sleeps, that's he's always with us, and he said he would rather he be with Kaleb, not him. So I said that God can be anywhere and everywhere... he asked 'is there two God's?' I had to smile. It's not easy to understand this whole God thing is it? Not even for me and I'm an adult! While his questions cause me angst and worry I also realize that he's expressing some deep and complex thoughts, and this past September he couldn't tell me how his day had gone. His language is ever improving and for that I am so infinitely grateful. I just wish I was better able to answer his tougher questions, and ease his worried little brain.

So, while I realize that July 31st is not that far away, that it gives him a chance at some summer fun, and gets him well enough to attend school on time in September... there is a part of me that wishes that we could do this tomorrow, to have it all behind us and be allowed to move on.

I am still collecting the RED photos (#redforjosh) and will be accepting them until July 1st. At that point I will make the collage and get it printed up before we head north for a couple of weeks of beach time. Please, if you are interested in sending in a red photo for Josh (see the post Will you? for details) send them to horizonsphotographs@gmail.com. Don't forget to share this with those you know who are praying so that they can be a part of this huge show of support for Josh. He knows and understands that people are praying, and now, when he sees anyone wearing Red he asks me if that person is praying for him too. It's been a real encouragement to us and our family but it's also showing Josh how much he's loved, and that people are praying. It's also been a great way for me to explain that with all those voices praying to God, there is no way God would sleep through it. He, we, have been amazed by the response. Thank you. (As I mentioned, I will post the final product here on the blog for all to see).

One of the many pictures that have come in so far