Walk of life

The flu has hit out home which is why there has been no postings in the last little while. I, thankfully have been spared for the time being and I have been keeping busy. Most recently I have entered into a walk of life. I am walking 5K to raise money for both the Cardiac Health Foundation of Canada and the Canadian Congenital Heart Alliance. The walk is May 25th and my goal is to raise 1500 dollars for this event. I am attaching a link HERE if you would like to a) donate b) join my team or c) do both.

All of your help would be so greatly appreciated!

Thank you!
Laurie

an open letter to a heart mom

I read a blog post today from a  mom who lost her son when he was just a year or so old to a congenital heart defect; she was talking about how she had been going through posts online and saw the a video about being a 'heart mom' and how that made her cry because she wasn't a heart mom anymore... this just about broke my heart and I decided to write an open letter to her, and to other mothers and fathers out there who have fought along side their children and had to let them go.

Dear Heart Mom (Dad),

You will always be a heart Mom. There is no taking away from the battle you have fought, the tears you have shed, the ache that fills your heart on a daily basis. No one can take from you the love you still hold close to your heart for the child who is no longer in your arms, you are still and will always be his Mom, and that means you are and always will be a heart mom.

There are many people who won't understand what you have gone through, many people who have no idea the pain that you feel, the exhaustion you feel, the penetrating sadness that lurks around every corner. Not many can understand what it is like to watch your child fight with all they have against a failing heart, to see them after surgery, to sign consent to something you know could very well end their lives. Once you become one of these parents, no matter what the outcome, you are a heart Mom.

You have cried tears that no one should have to cry, you have seen things that no one should have to see and the fear you felt, the ache you still feel, those are all things that put you in a category that no one wants to be in, the mother of a 'heart angel'. It's not fair, its not right, in fact it is the worst thing in the world that could have happened to you; but your child was the best thing that happened and regardless of the outcome, however horrible. You were his Mom. You still are his Mom. He was a heart warrior. He fought battles with strength and courage that don't seem right in a child so young but his courage shaped you, changed you. His love shaped and changed you from the day he was born until the day you die. There is no going back from where you are, or where you have been.

You will get up tomorrow, you will breathe, you will laugh, you will cry, you will find new dreams and new hope but it won't change that you carried, birthed and loved one amazing little person who changed your whole world.

Don't ever let yourself believe that you aren't still, that you won't always be, a heart Mom.

Sincerely,
Laurie

6 more months!

So today was ECHO day... I wrote earlier so I this won't be a long post but I do want to update all of you.

Let me start with talking about the fact that we started today by giving over 1300 dollars to the Cardiac Kids that Kaleb's school (Nelson Mandela Park PS) raised during the month of February! That was pretty awesome! Before we got there Josh asked me 'am I a cardiac kid?' and I responded with 'yes'. Then he went on to talk about how he was going to grow up and when he was 41 he was going to be a doctor who helped cardiac kids. Then, for the rest of the day he asked a million questions about how the heart works, he asked the ECHO tech. about the images he saw, what they meant, he asked the nurses about his blood pressure and what the numbers mean, he asked his doctor a ton of questions about it all... it was flat out exhausting answering all those questions! I broke down and bought him a model heart to help him learn more, and we got a book out from the resource center at Sick Kids that teaches all about the body. He's fascinated by it all... definitely a future doctor :)

The ECHO results were good. Not fantastic but good. His Pulmonary valve is looking good and is not showing signs of rejection, his tricuspid valve is leaking a bit more than it was before but it's not something they will do anything about right away, we will keep our eye on it and monitor it. The right side of his heart, the side that was seriously enlarged, has actually gone down in size! This is something we had hoped would happen with two working valves and to hear it is actually working is really good news. So when the doctor turned to Josh at the end of the appointment and said 'So, your ECHO was good, you don't have to come back for 6 months' he smiled really big and gave her the thumbs up... I have to admit I felt like doing the same thing. 6 months!! Add that to the last six months and we will be a full year post op! This is good news!

I've never seen that before...

Not very long ago I shared a post where I spoke about the verses from scripture that God has used to speak to me throughout the last six years in regards to Josh. The main verse that keeps popping up at random yet meaningful times is Joshua 1:9. I have read it thousands of times, I have heard it whispered, seen it on wall plaques, my Bible, or heard it in sermons, or from friends... yet this morning when I saw it posted a friends timeline on facebook I saw something I have never seen before...

 ^"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”

In the many times I have read this verse or heard it, it wasn't until today that I saw 'do not be discouraged'. I don't know why I have missed that before... yesterday I was so discouraged, so angry, so totally overwhelmed. I can't say I feel too much better today either. However, seeing this verse today, hearing that new portion of the verse for the first time, is like God saying it to me for the very first time.

"Laurie, Have I not commanded you? Be strong, be courageous, don't be afraid, don't be discouraged, I am the Lord YOUR God, I am with you, I will be with you no matter where you go." I am still feeling overwhelemed and scared and worried and discouraged and frustrated and tired... but today was a reminder that he is with me, no matter where I go, no matter where Joshua goes, no matter what any doctor says, no matter what report I am handed.

I hold on to that tightly. So, my prayer today is that he helps me with this command, that I can find a way past this discouraging news, this feeling of failure, this feeling being too overwhelmed to move. I don't believe that saying 'God won't give you more than you can handle.. ' It's crap in my opinion. It's when you get to more than you can handle that you let it go and allow God to lead you through it. That's where I am at today... yesterday I felt like God gave Josh the wrong person to be his Mom. I felt like I didn't have the necessary skill set to be the best Mom for him. I am not a teacher, I am not a therapist, I am not a doctor or even a nurse, I have zero training on how to help him... why on earth did God see fit to give Josh to someone so unqualified, he deserves so much more than me. I still feel overwhelmed when I think about all that Josh needs both now and in the years to come, I still question if I was the best choice, but today, I choose to let it go; and it is a choice I can assure you. I am choosing not to listen to the lies, I am choosing to give my fear and worry and feelings of failure to God because I can't let this break me. God for whatever his reasons DID give Josh to me, he saw something that I can't see... so to let it break me would be to let my son down even more. It would be saying God didn't know what he was doing... instead I will choose to give it to him and not question it. I will choose to try and live by this command to not be discouraged.

Today we head into another long day of testing, this time it's his heart. This is the first ECHO since his one week post-op. The swelling has now gone down and we will get a much clearer view of how that surgery in August 'took'. We will find out if he is accepting the valves, if the enlarged part of his heart is going back at all to normal size... please, pray with me for Josh today. I know you all pray for him so faithfully, but today in particular I ask for a special little prayer for both of us. The support I received yesterday was beautiful, all the texts, emails, Facebook messages... I am always surprised by the people who read this... and always blessed. I wasn't in a great place last night and didn't respond to many of you and for that I do apologize; but know that each word I read filled me with love and encouragement. As I said yesterday, I needed a day to just be mad but today is a new day with new battles to face and I am picking myself up to fight again. I couldn't do that without each of you praying us through this portion of our lives.

Many thanks,
L

one stupid clot

This blog has typically been a place for me to share my thoughts about Congenital Heart Defects and how it affects our family, our faith and our journey through life together. It's also been a therapy tool for me, to write out my thoughts and fears into the great abyss that is 'the word wide web' and feel like someone out there has heard me. Today is no different.

I often talk about Joshua's heart, the all consuming problems that lead to multiple surgeries and interventions.. the organ that has caused untold fear, worry, sadness and axiety for him, for us and for his doctors and surgeons. What I don't often talk about though is his brain.

The brain is a funny thing. It can have damage done, a wound, a death, damage and you can't see it. The fact that we caught his stroke is amazing given his age when it happened. I still remember the day we were told he had suffered a stroke. It baffled me to no end that a baby could even have one. I thought it was for old people... I had so much to learn back then and still so much more to learn. They told us that he would probably be fine, that we may never see any signs of the stroke and so we went on with our lives not knowing the devastation that lay hidden within Josh's brain. It wasn't a wound we could see, there was no blood and gore to put a bandage on or sew up. In fact, it's not something that anything can really fix, and this is rub for me. I want to fix my son and I can't. That is where I ache the most. The cardiologist is in charge of his heart, they know what is wrong and they know the steps that are required to make it right; however awful those steps prove to be for him, at least I know that it's being handled and dealt with. Josh's brain is a different story.

Two weeks ago Josh spent 7 hours in testing at Sick Kids, it's called psychological testing, and it's long and it's intensive. It brings to light all of his strengths and clearly details his weaknesses. With all the glowing praise we have been getting from the school I was left unprepared for the reality that exists for Josh. He's bright, he's made a lot of gains, he's improved in many areas, he's smart and funny but he's still language impaired He still is well below average or even borderline in his processing of information, his abstract language, his comprehensive skills and other areas all surrounding his language. 

A new and budding concern is that they are seeing signs of what is called 'acquired ADHD' though they are not ready to diagnose at this point and will not likely medicate because of his heart issues. The center of the brain that had the injury is where language, literacy, and attention all live. Thus it's acquired and not developed. There is also deep concerns regarding his anxiety levels and basic emotional health in relation to his self confidence. Many of these things I knew, I am not blind to the things I see in Josh. Anxiety certainly isn't a shock to me, his attention and constant movement wasn't a surprise, but to see it written on paper, to hear the doctor speak about it in the light of day...

Today, I feel like a million shades of failure. I know that reasonably this isn't on me. I didn't do this to him, I didn't cause the stroke, I didn't not do something I should have done... but I can't fix my son and I feel like a failure. I see who he is under the injury, I see his intelligence, I see how smart he is, I see his talents and I struggle to understand how this happened to him. One stupid blood clot and his life is forever changed. I hear people tell me things about him, trying to convince me or themselves that he's smart and I want to scream. He's very smart, there is no need to convince me, he just can't process as fast, he can't verbalize as quickly, and because of that his intelligence is questioned and that just makes me angry. If I am really honest I will say this whole thing makes me angry, I know life isn't fair sometimes, I get that, but it doesn't make it feel any better. I am still mad, I am still unable to heal Josh, I am still left feeling like I should have done more, I should do more, I still feel like I have failed him, I still feel guilty for signing consent that day, I still feel like I should have asked more questions, gotten intervention earlier, done SOMETHING differently. No amount of talking is going to change that. Owning what I feel doesn't even help, right now it's just a big empty spot where the questions sit unanswered.

When I ask a Cardiologist 'will this fix him' she can answer me. She can say with confidence how much time it should buy him. Whenever I ask a Psychologist or Neurologist or Therapist 'will he ever be 'fixed' the answer is always the same 'we don't know'. Will he ever be able to stand with his peers and have a normal conversation? I don't know. Will he ever be able to sit in a normal classroom? I don't know. Will he ever be teased, bullied, made fun of, because one day when he was three months old a tiny blood clot went the wrong direction and wreaked havoc on his life? I just don't know. It's the not knowing that makes all of this so much harder. How many times have I prayed that Josh would be healed? How many times have I touched his little head in the spot of the stroke and prayed for him... I can't even count the times anymore. It's beyond measure.

This is one of those days when the post is dark. I know that tomorrow I will see all the things in the report that are positive, I will see the areas (like his vocabulary) that have made significant gains. - vocabulary for example registered at a two year old level the last time we were there, the spring before he went to JK, today he is at a five year old level - significantly higher, significant gains. Tomorrow I will see these gains and I will gather myself up to fight another day but today I need a day to mourn what could have been, to allow myself to be mad about that day in April 2008.