November 25, 2013
In the day to day of things I don't notice change, growth or movement but if I look back at what was, and see what is, I can clearly see change, growth and movement. On the ship I would be in the dining room and not feel that we were moving but if I stood on the balcony of our room I could look out and see the waves rushing past us. Just because I didn't feel movement in one place didn't mean we weren't actually moving.
Life is like that.
I look back at the summer, I see photos of Josh and I see a boy who was so skinny that you had no fat, I could see his spine, and hip bones clearly pronounced and there was literally no meat on a bum that should have had meat. I think back to the summer and I remember how tired a simple walk could make him, how the simple act of getting up and eating were enough to wear him out for the morning. I didn't see those things at the time, or if I did it, was such a slow transition that I didn't see how bad it had become.
This weekend we celebrated Tim's birthday, and we went to Tim's parents place for dinner. Josh ate three large helpings of beef stew, a piece of bread, two large cupcakes, and a bowl of fruit and custard. He simply ate and ate, and it was amazing to watch. I looked at him more carefully that night while he dressed and got ready for bed. I can no longer see his spine, and his hips are now fleshy, his bum has filled out and there is meat on it where it should be. He looks now, like a healthy young boy. He walks now and there isn't the constant litany of 'can you carry me?'' or 'Im too tired' or 'Can we rest now?' He's got energy, he's got appetite and he's slowly starting to come further in his development.
The other day I looked back through diaries from last year at this time. I read the things that I wrote about Josh saying and I was shocked by how far his language has come in the past year. He sings on a regular basis, he chats non-stop, he strings a few sentences together and just recently he has started to explain words to me that he can't find the right word for... (for example, if he wants to say 'firetruck' but can't find the word because of his processing disorder he will say something like, 'the red truck that comes if a fire happens'). Basically he is slowly learning techniques to overcome his weaknesses.
It's hard to see things on a day to day basis, it's easy to get frustrated by how long things take to happen. This is true in almost every aspect of life. However, move from the center of the ship and stand on the balcony and you will see the movement of the waves, and land is approaching.
November 22, 2013
Taking time to look at the sunset, and sunrise... it's something I haven't done in a long time. While on holiday we had plenty of opportunity to both (though I freely admit I only managed to wake up in time for one sunrise (middle shot). What I found so awesome about it, was that each one was different. Each sunset, each different set of colours, each unique cloud formation, and yet all where no one should really see it. For the most part we were far out to sea, no land for miles and yet so incredibly breathtaking. Why do I find this so awesome? I guess while I was sitting there watching the sunrise one morning it dawned on me that this was created for no one, it is what it is, and it's there just because. How many things on this planet are created this way, long before we were placed on this earth God created the sunrise and sunset, he created the forests, the flowers, the mountains, rivers, oceans, stunning views, breath taking plants and animals. Even now, there are thousands of varieties of sea life, deep in the depths of the oceans that no one has seen.
Walking through the streets of New York City I watched person after person pass by me, bump into me or sit beside me on the subway. I did the same on the ship, and at each port where we stopped. Each face, thousands of faces, all different. Have you ever really stopped to think about that?
The other day I saw a set of photos that someone took, they were macro shots of snowflakes and each one was perfect, each one stunning, each one totally unique. How many snowflakes fall in a winter?
Sometimes I get so busy, so needy or just too tired to really think of God as anything more than someone to turn to when life gets hard. When I am struggling with understanding Josh's health, when I am worried about Kaleb's food allergies, when I am needing strength to get through a hard week. I forget that God is the creator of the universe, that He is the great artist of each tiny snowflake, each beautiful sunset, each stunning sunrise and each unique person.
I forget that he is Majesty. Perfect majesty.
November 6, 2013
Today is the big day! After months of waiting, Tim and I are finally getting the holiday we couldn't have this summer! We fly to NYC today where we will spend four days, and then we get on board a cruise headed to Bahamas (with a stop in Orlando for a theme park - not telling the boys about that one)! I am so excited that I am away as of 3:45! Insanity! (I will not be posting while on holiday)
Quick update. The meeting the other day went very well. I prayed that I would be given understanding and I came out of the meeting having not once bumping into science! :D Instead they actually gave me hope for a better adult care system that may one day be a reality. I can't say much about that now, but I have every intention of writing a post that will be run by them before it's published and then you will get details. All I can say right now is that I have high hopes for the adult system but it will take a lot of work.
The meeting left me with one thing. A goal, direction for my future walk with Congenital Heart Disease/Defects.
I know that a lot of heart parents read this blog and I would like to appeal to you personally in this post. As parents going through this with our kids it's sometimes hard to see past the horror of 'now', we want to help the pediatrics units, we want to give our time and energy to helping make things easier for our kids. All of this is good, and normal. For a moment though, I ask you to think about your son or daughter when they turn 18, and many of them (THANK GOD) will because of the advances in medicine. When they turn 18 two things happen.
1) They start making their own choices medically. We were in the Cardiac Critical Care Unit once when a boy who had just undergone one of many surgeries turned 18. The day after his birthday the doctors told him that he needed yet another open heart surgery. Now that he was 18 he would need to sign consent. He refused. For one thing, he was in a great deal of pain, and the idea of going through more surgery didn't sit well with him, and his lack of maturity and normal belief of any teenager that he was immortal left him not realizing the true gravity of his situation. His mother and father begged him for days to sign the forms and thankfully he finally gave in and had the surgery, but it pointed out a glaring flaw in our laws surrounding pediatric care. 18 years of life, old enough to go to war and make your own medical decisions that mean life or death, but you can't drink and certainly don't have the true maturity to understand the ramifications of your decisions for the longer term. Educating our kids is vital, they need to know that their special heart is always something that requires care, it doesn't end when you leave pediatrics.
2) Once you are 18, out there making your own choices medically you are also sent to a new hospital, a new cardiologist, sometimes not even a specialized cardiologist (and I promise you there is a difference between CHD specialized Cardiologist and regular Cardiologist). They don't know your history, your quirks of health... for example. Joshua's doctor has known him since he was born, she knows every possible thing that has ever happened to him, she knows that his valves tend to reject faster than most, she knows that his circulation is different from most, and she knows that Josh is one of those kids who trends towards the rare side of situations. (If they say 1 in 100, Josh is usually the 1). However, when he is 18 he leaves her care and moves on to a new doctor who may not fully understand him, his problems and his history. They enter, at 18, a system that is underfunded, understaffed, and not yet ready for the influx of survivors that are now leaving pediatrics. This is fact, not a random guess.
As Parents of little heart warriors I believe that we have a responsibility to see that our adult health care is ready for our kids. I believe it's our job to ask questions of the politicians, the doctors, the hospitals as to what is being done to get that adult system ready. I believe we owe these kids, who have struggled through more pain and suffering than they should have, to educate them about their special hearts, to teach them about making these tough decisions in life, and to work towards making sure all the years of care we have given them are not wasted when they leave the children's hospitals/wards.
There are a lot of reasons why people give time and money, particularly to children's charity's, I myself support Sick Kids and Cardiac Kids; kids shouldn't have to suffer, they should be living their lives in innocence of this nasty world for as long as possible so we do what we can to make it easier for them, that's just normal. However, the reality is that as parents we should also look forward, we need to see past this horrible 'now' and see our babies at 18. We need to start now so that when they reach 18 they enter a system that is ready for them.
One last thing for the heart patients and the heart parents reading this. I am working on a new project with the Canadian Congenital Heart Alliance - cchaforlife.org - we are asking that you submit a photo of your CHD survivor holding a sign that says "I am 1 in 100" (much like the one below). We are making a video for giving Tuesday (December) and we are hoping to make it viral for February (big goals I realize). Please send the pictures to me by December 1st! send to: firstname.lastname@example.org
Don't hesitate to contact me if you have any questions, want to help, or need to be connected to organizations in your area. I am here to help as much as I can. (though keep in mind I won't respond until I get back into town.
Many blessings friends, I will see you in two weeks! :D
November 4, 2013
This morning I will be sitting down with two of Toronto's most renowned heart surgeons, two of the very few Canadian CHD specialists; the goal? To talk about CHD awareness. I have a number of reasons for this meeting, I have a lot of questions and I won't lie to you I am nervous. I still often feel like the girl I was in the office of the Fetal ECHO lab that day, terrified and totally in over my head.
Sometimes in life we are given the directions, and our only choice to is to move forward on the path we have been placed on. When I was at the end of grade 10 I was failing Science. I hated it so much that if I went to class all I really did was annoy my teacher. One day, I was in the office waiting for something (not sure what all these years later) when my science teacher came in and sat beside me. I looked up at him, we were days away from the exam and I hadn't studied a thing. I remember smiling at him and saying something like this "Sir, you and I were wired completely differently. I hate science, I don't understand it and doubt I ever will. I need to pass grade 10 science to pass high school but we both know that isn't going to happen; which means that next year you will have me in your class again. What would happen if I promised you that I would to never take science again, not here, not in college and not later in life, if you passed me through grade 10?" I can't remember his answer that day but I remember he smiled and moved about his day. One week later I found out that my science mark went from an F (no kidding, it was that bad) to a D, not stellar but a passing mark. I kept my promise to that teacher, I never darkened a science lab's door again. Then that day came when I was sitting at the Sick Kids Fetal ECHO lab, hearing all this confusing talk about science, anatomy and fear kicked in. For whatever reason God saw fit to put that girl who bribed her science teacher to pass her on a path for raising awareness about a medical issue. Research being done now is all science and I feel sometimes that God picked the wrong girl for this. I am on this road blindfolded, but the reality is that I AM on this road and there are no exits coming up for me to get off. Today I will sit with these doctors and pray that God helps me understand, pray that this meeting is fruitful for the world of CHD, particularly in the world of adult care.
I tell you all of this because come ten o'clock this morning I could use any extra prayers you have time to send up on my behalf.