solar powered girl

I typically hate cold weather... anything below a comfortable 15 degrees is too cold. I admit, I am a wimp when it comes to cold. I hate it. There is nothing more comforting to me than feeling the warmth of the sun on my shoulders, it eases tension and gives me new life. So you can understand why this winter is starting to wear thin. I am so cold that I am beginning to wonder if I might ever thaw; in all honesty I have considered cramming myself into the microwave for a five minute defrost. Today, as I was getting ready to go back out into the arctic chill to pick Kaleb up from school I actually felt like crying. I am so tired of layering! I hate socks, I hate boots, I hate the look of multiple hoodies under my coat, I hate shoving my hair into a hat, I hate mittens, I HATE winter.

Tomorrow is MARCH and I think that at this point it's fair to say that mother nature is just being mean. It's no longer cute, it's not funny, it's no longer something that I can even pretend will be over in a few weeks... I am starting to think it might never end! Has a new ice age begun? Is this hell, and has it finally frozen over? What did the sun feel like last summer? I can't remember?! The suns rays are now just a vague misty, hazy memory, like a smell that takes you back to a pleasant feeling but you can't place the actual memory.What did it feel like to decide that you want to go out, and you just did. No coat, no boots, no mittens, no hat, not layers! What did it feel like to walk on pavement, or grass? I am so used to the ice now that I no longer need to navigate it carefully... I just march on past it with my head tucked low so the wind won't freeze the tears in my eyes, tears that don't come from emotion, just cold, and wind! What did it feel like to walk in the sand? Hot sand slipping between my toes? What do hot muggy days feel like? I can't remember!!

Every morning Josh asks if it's spring yet... every morning I tell him soon with hope but little expectation. It's wearing on me... my soul is thirsty for the sun! I am a solar powered girl and my batteries are running desperately low.

I had to vent, I just had to rant about this winter because if I don't rant, if I don't make my feeling known I might just explode! I am SO done with winter!

not because I love him less...

I have always spoken about Josh's brave spirit, his strength and his heart (literal and figurative). I sometimes think I haven't told you about how incredible my youngest son is. How brave his is, how strong, how infinitely warm and kind and compassionate he is. If ever there a boy who could steal his mama's heart, the Kaper is him. He is the first to jump in and protect me, the first to stand up for me, and trust me, he will not go against me... even if it's just in a tickle fight between the rest of them and me. If Tim dares try to tickle me, Kaleb jumps in to protect me(sometimes showing his fiercely protective teeth with a growl thrown in for good measure), if Josh says something against me, Kaleb looks at me and says 'I love you Mummy'. He is such a loving little boy, and he loves with his entire heart and soul.

This week Kaleb had to have a needle. He held on to me tightly and when that moment came he simply said 'ouch' and hugged me a little harder. He hasn't had to endure the knocks that his brother has, a needle to him is a big deal and he was so brave, he was also a touch shocked by the pain.

The boys have a book about a bucket. The premise is that each of us has an invisible bucket above our heads; if you are mean, say something unkind or do something unkind then your bucket dips and you have a little less water in it and you empty their bucket too, making you feel bad. However, if you are kind, do something nice for someone then you fill their buckets and yours gets filled too. I don't know what I think of the moral and theological premise of the book but I love that it's teaching my boys the benefits of being kind to people, and to each other. In our house we have bucket fillers and we try to not be bucket dippers. I say all this so that you understand what Kaleb said on the way home from the doctor this week.

We were in the car headed home when he said 'Mummy?' I looked into the rear view mirror and answered him and then he said 'that doctor is a bucket dipper, she hurt me'. While I hate to see either one of my boys hurt I have to say that Kaleb needed this. For too long he has viewed Josh's frequent doctors visits and hospital stays as a good time that Josh was having with his Mum. There is nowhere Kaleb would rather be than with his Mum, I don't say this to bolster myself but simply to state fact. He's my boy, and his favorite spot is with me. So, when I take Josh to all his appointments, Kaleb is left feeling a bit put out. I think he honestly believes that Josh is having a good old time with Mum, and we just don't want Kaleb with us.

Kaleb having a bit of pain, not enjoying the doctor this week means that he also got a small taste of what 'going to the doctor' means for Josh. At the same time it also opened my eyes to a different form of strength, and bravery that rests within the heart of my youngest.

He is the one who has always felt left behind, he's the one that has endured all the same anxiety for his brother but hasn't been able to fully understand all that has happened. Last year was a really hard year for all of us. Josh was so sick for so long, we had appointments several times a week that Kaleb had to go to his Grandparents for. He wasn't told much, we didn't share with him or try to help him understand because he was so young, too young to comprehend it all. The best I can guess is that he must have felt second best, maybe a little bit like a third wheel, and possibly pretty insecure about his place in our family. Yet, despite all that he is strong enough to forgive us, brave enough to love us anyway, and loyal enough to stand beside me despite the ways I have already failed him.

Kaleb is a kid who knows what he wants, he is strong willed, creative and bright. He can challenge me and argue with me but at the end of the day he won't go to sleep without a kiss, he won't let me leave the room until he's told me that he loves me 'so much' and if he senses that I may not be at my best, he makes sure to be the first to hug me, the first to sit in my lap and just be with me. So, while this blog gets a lot of Josh updates, it's not because my youngest isn't one of the most awesome kids in the world, or because I love him any less. He stole my heart four and a half years ago and he's held it in the palm of his hand ever since.

One event down... next one in the planning stages!

Yesterday we hosted an event at Nelson Mandela Park public school to raise awareness for Congenital Heart Defects (CHD) and to help raise money for the Cardiac Kids. It was AWESOME! Carlton and David Clarkson of the Toronto Maple Leafs showed up to say thank you on behalf of Cardiac Kids. Josh played the role of Cardiac kid ambassador... and 'hall buddy' for Carlton. (In Primary school you walk through the halls holding hands with your 'buddy'.)

The whole morning was really awesome. Carlton was a hit with the kids and David Clarkson was there to sign jersey's and answer hockey questions.

When we were leaving I thought to myself 'it was fun, great even, but I don't know if they will remember anything past the Leafs... HOWEVER. When I picked up Kaleb from school a little girl called out to me and said 'I hope Kaleb's brothers heart gets better quickly'. So the message made it to some of the kids and for that I am so grateful! It all starts with knowledge and I think yesterday these kids learned something. The raffle will continue all week, we have leafs tickets, a jersey, a few baskets with toys and a family movie package. I have a feeling we will raise some nice money. (I know I want that jersey!).

I wanted to write a public thank you, to Nelson Mandela Park for hosting us, to Cardiac Kids (Meghan) for helping me with the project, and of course to David and Carlton for being willing to spend their morning with us! The kids really loved the break in routine and were apparently talking about it all day long!

good reports.. tough decisions

Have you ever had one of the moments where you sat and listened to good news, great reports, but at the very same time you feared what it meant? Wondered what comes next or even wished you weren't hearing it?

I had one of those days this past week. I went to Bloorview to meet with the teachers and therapists who are and have been working with Josh since September. The reports were amazing. He no longer needs OT, or PT and his language is finally gaining some ground. All of this is great news!! However (and by the first paragraph you should have known the however was coming), they aren't sure that they are the best place for Joshua anymore. They don't feel he is being challenged enough, and they don't want to 'clip his wings'. This is awesome news, and it's what I have been praying for in many ways; but the truth is I am left with 'what's next?'. As a parent who can see where his weaknesses are, who can see how much this school has done for Josh, who can see how much he LOVES this school, I am feeling a little lost for direction.

The school is NOT kicking him out, they have told us that the ball is in our court and if we decide to leave him for his second year (it's a two year program) then they will do whatever they can to challenge him; but is that what is best for him?

Next week (Wednesday) we will head to Sick Kids for a full neuro-psych test to learn where he is at, where he's gained and what still lacks. From there, we will need what's called an IPRC meeting to see what programs may be good for him from this point. What it means for Josh, is more transitions, more changes both now, and in the years to come. Depending on where they try to place him he will go to a new school next year, and then every year following they will do a follow up IPRC to see if the program is still fitting for him, if they decide it's not, if they at some point decide that he's ready for a full public school experience then he will again move to another school.

Change isn't easy for Josh, it's not easy for most of us, but it's particularly hard for Josh. It also means more years of not being in the same school as Kaleb, which makes it harder for me.

So now I am trying to sort out Kaleb's school problems as well as Joshua's. I keep wondering... when will things slow down? When will life just be 'status quo' for just a little while...

I am tired.

What's next?

A lot of people are blogging today about what Valentines used to be for them, and what it is since they fell in love with someone who has a CHD. I have done that in the past, feel free to stroll through the last few years of Valentines posts. This year though I would like to skip the tradition and talk about what we are doing this year to make a difference in the years to come. I would like this post to be interactive. I would like to hear from you. You can email or use the comment section.

This year I have taken the very broad topic of CHD and I have narrowed it down to two charities. CCHA (Canadian Congenital Heart Alliance) and the Cardiac Kids (in support of the Sick Kids foundation). I have taken some hits on both fronts for choosing these two charities to work with; at one point nearly causing me to bow out completely and just do my own thing.

Truth: There is a desperate need for support within adult CHD community. Money is so tight that coming up with funds for postage is tough, forget research, events, advertising and marketing. You can't raise money if you haven't got any to start with. This is a problem. If you have money, and you don't know who to support then this is a great (and very needy) foundation.

Truth: Cardiac Kids is a Sick Kids foundation. They have more money than the CCHA. However, that money the Cardiac Kids raises... it goes straight to the Labatt Heart Center, and to the kids who spend more time at Sick Kids than they do just being kids.

Truth: 1 in 100 kids are born with a CHD. By the time I get ready to go for my Valentines day date, 16 kids will have been born with CHD in Canada.

Truth: There are more adults living with CHD than kids. Survival rates are increasing and there just isn't funding or facilities or specialists to help the more than 80,000 adults in Canada who are living with a CHD.

These are just a few reasons that I have finally narrowed my field of vision to these two organizations. The biggest reason? That would be Josh.

One day Josh will turn 18 (God willing) and when he does I want to make sure that I have done absolutely everything in my power to ensure he enters a system that is ready for him. He will need the CCHA to be in a place that they can help him, he will need the plans they are putting in place to help adults get the care and education that they need.

Today, Josh is a kid, an awesome, brave, amazing, happy little boy who has CHD and Cardiac Kids has made him FEEL like a kid. They have made him FEEL special, loved and happy. They found out last April that Josh was having a hard time, so they sent him to meet David Clarkson at the Leafs game (He was a Devil back then). Countless times they have done special things for him (any us, by association).

So. What am I doing this year to make a difference in the years to come?

I am choosing to support two similar but clearly very different foundations. I am helping with the marketing and advertising of the CCHA. I am helping the kids at Kaleb's school to raise funds and awareness for kids like Josh. It's busy this February... (the state of my house reflects this busyness)... I can't choose just one organization, they both mean too much to Josh both now, and in the future.

The interactive part?

I would love to hear ideas... things we can do to help BOTH of these great charities. I would love to know what you are doing in your community. Who do you support? Why?

I would love hear from anyone willing to take up this cause with me. I would LOVE to hear if you have supported either of these charities.

I would like to start a walk, somewhere here in downtown Toronto to raise money for the CCHA... but I can't do it alone. If you are willing, and know how to help. Contact me. If you are willing to host a bake sale, art sale, lemonade stand... anything... contact me.

This year, I am asking for your time, your energy, and yes. EVEN YOUR MONEY. Let's do this thing! Go big or go home right?!

Happy Heart Day everyone.

Markers in time

We all have those moments in life, those big moments that make up the time line of your life. "Before I moved vs. After I moved" or "Before marriage vs. After marriage". When we are trying to remember what year we did something, or when we are retelling a story we often use these moments to gauge when in our lives it happened.

My life has these moments on my timeline, they are clear breaks in the line that I measure time by. I moved to Stoney Creek when I was sixteen, I went to Europe for a year when I was 19, I went back to Europe for three years when I was 26, I married in 07, I had Josh in 08, Josh's stroke was in late April 08, his first open heart was in July 08, Kaleb was born in 09, Josh's second open heart was in '10, his third was in '11 and his fourth was in '13.  When I think about something, trying to remember when something happened I use those markers to base the time line for the event I am trying to remember.

One of those markers is 'before knowing, after knowing.' Before I knew Joshua had a heart defect and after I knew.

Each of the moments I referred to are big moments in life, they change your course, they shape your dreams and your directions. I started on a path and at each one of these time markers my path came to a blockage and I was forced on a new route. This is life. Not just life with illness, but life in general.

I heard about another woman last night who had her path changed yesterday. Just 48 hours ago she was headed in one clear direction. 30 weeks pregnant, excitedly anticipating her new baby, then the marker came. The conversation that changes everything and you get sent on a new path. 24 hours can change everything. Now she knows. Now she knows that her baby will be born with a heart defect, and her life will always have that knowledge as a marker in her timeline. The before and the after.

Pray for her as she meets with specialists tomorrow. Pray that she is given peace and courage... and endurance. This is not a sprint, it's a cross country race and she needs to set pace now.

CHD can't be stopped, but we can surround the patients and families with all the support we can muster, we can pray for them and wrap them in arms of love and hope and joy. Having a child with a CHD is scary, the unkowns are many, the fear and risks are big, but the rewards are something we wouldn't trade for anything. Has it been hard? Have we cried, been angry, doubted, feared? Yes. BUT...

The battles that Josh (or any heart patient) has won, mean that the victories are even sweeter. His smiles bring more joy because we have seen his tears. Don't feel sorry for heart parents, don't feel sorry for heart warriors and survivors. Stand beside them and fight with them, stand beside them and share the victories, embrace them in the defeats, more than anything. Help them, don't pity them. Pray for them, don't give up on them.

Courageous?

Back when I was pregnant with Josh, after we learned that he had a heart defect; I began to pray. The prayer was simple, 'heal my son'. I believed, I had faith. Yet, the first thing I felt God say to me on the matter was this 'Have I not commanded you? Be strong and courageous! Do not tremble or be dismayed, for the Lord your God is with you wherever you go." (Joshua 1:9) I have to admit... when God tells you not to be afraid... it means there is a reason to fear. I did fear, I did tremble, I was dismayed, even though I believed he would be with me, though I knew he was calling me to be courageous. I was terrified, not knowing where he was leading me to go, not knowing where he was going to 'be with me' or what he would face with me.

One morning I was sitting in the new nursery, rocking in the chair and feeling Josh kicking me. I was again praying, 'heal my son'. That was the morning he gave me a new message. "And looking at them Jesus said to them, 'with people this is impossible, but with God all things are possible'." (Matthew 19:26) As you can imagine this brought more comfort to me than the command to be courageous. I put all of my hope, all of my faith in that promise. It hasn't been easy, my faith has been tested countless times, but always on the back of that promise has been the command to be strong and courageous. I couldn't believe the promise without following his command to me.

Yesterday at church Tim spoke about healing, and while I don't want to rehash the sermon (I will get it all wrong if I tried - but you can look it up on the Little Trinity website) there were things that stood out, things that I felt God was saying.

For the last month I felt very clearly that God has been saying to me 'it's not about your faith'. I spoke about it a few posts ago titled 'learning to cling'. I heard him clearly yesterday reminding me, cling to Jesus in the wait. My prayer from pregnancy to now for Josh hasn't changed 'heal my son'. It's etched in my heart and flows through me whenever I pray for him; yet still we wait, we may never see the healing that we have sought. When the sermon ended, with me staring at the ceiling trying desperately to compose myself so I wouldn't cry in public, the music began. The song was 'Sovereign' I shared a video a few posts ago that I made prior to Joshua's last surgery, a photo montage of Joshua all set to that song. So, yesterday as we sang it was those images that raced through my mind.

As I sat there I began to once again feel fear, I trembled, I grew dismayed. What was God saying to me? What is he saying to me? He's whispering 'cling to me, I am sovereign' but what does that mean?

We are staring down the nose at Josh's next ECHO appointment and I won't lie to you, I am actually afraid.

This is not a post about raising awareness, it's not a post pointing you in the direction of some great charity for CHD, it's not a post about the wonders of science, or the many downsides of life with CHD. It's a post from the heart of a Mom who loves her sons, and if anything it's an honest look at what living with something like this is like.

I have been commanded to be strong, I have been commanded to be courageous, I have been promised he will go with me wherever I go... but if I am honest, some days it's harder to fulfill that command than others. Some days it would be easier to hide; if only there was somewhere that we could go that this didn't follow us...

Not just a dream

The last few days I haven't been able to post... sadly Ive had a sick kid on my hands (Kaleb not Josh) and he's needing extra TLC. I did however have some time earlier in the week to begin this new project for the CCHA. There will be more to come so keep your eyes posted. Remember to share them when they pop up on your news-feeds and twitter accounts. The hardest part of Living with Congenital Heart Defects is that no one knows about them. These kids/adults need specialists, a regular cardiologist won't do. We need people to know, we need people to care. We need funding for research, funding for more facilities, better facilities, and the adult care system in particular needs help desperately! Check out the Canadian Congenital Heart Alliance for more information on how you can help.

My dream for Josh and those like him would be that when he turns 18, nothing changes. He stays within the same walls he's always known, his care doesn't change, his surgeon doesn't change. My dream is not unrealistic. It can happen. You can help.

DISCLAIMER: When I speak about CHD's I am for the most part referring to 'C'CHD's (COMPLEX CONGENITAL HEART DEFECTS) There are some minor heart defects that can be resolved with on procedure or surgery however, for the purposes of this blog they are not what I am speaking about. I am talking about the more than half of kids who are born with defects that will require LIFELONG expert care, I am talking about the kids who won't be cured.

Early Detection matters

 

Josh a few days old, he had so much fluid on board that his tummy actually ripped because the skin stretched so much. To this day he bares the scar. He was 4'11 lbs, when he was born, he got a lot heavier and then and 6 weeks later when we brought him home he was done to 4lbs.

When you are enveloped in the world of CHD you hear a lot about early screening tests, and how they save lives. I had never heard of a pulse-ox and certainly didn't have one. I was however, lucky enough to have an ultra-sound that detected an abnormality (a two vessel cord instead of the normal three vessel cord), this had the doctors sending me for follow up tests and it was those tests that led them to discover Joshua's heart defect. By knowing about Joshua's heart defect we were able to take measures to save his life. Joshua almost came on January 1st 2008 (He was due in March). Thankfully, we knew that if he was born that early with a heart condition he wouldn't make it. As it was he still came three weeks earlier than the doctors wanted to ensure his viability. The following is the recount of the day he was born, written in the months following his birth.

"When I woke up on January 31^st 2008, I went about my normal morning routine with Tim, but before he had even left for work I had to go lie down again. I didn’t feel right; although I couldn’t name the problem I thought if I just rested I would be okay. By one o’clock that afternoon I was worried, I hadn’t felt the baby moving for a couple of hours, despite trying to wake him up with sugary drinks and chocolate, even throwing in some very loud U2 music for him to listen to. Nothing was working, and at around 2 in the afternoon I began to cramp. I phoned the church, but Tim was in a meeting and I didn’t know if this would classify as an emergency or not. Although looking back that really is as stupid as it sounds.  I left a message asking that he call me as soon as he could and I sat waiting with the phone in my hand. I phoned twice more before the receptionist finally asked ‘is everything okay? Is this an emergency and I said very quietly that I thought it might be”. Tim was on the phone within minutes. He had the car at the office so he felt it would be faster if I took a cab to the hospital and he would meet me there.

Having a plan helped, I got up, got my coat from the closet and my purse from the hook and I called the cab company. The wait for the cab was probably one of the longest of my life. When he finally got to the house I locked the door and calmly waddled to the car. I explained that while this was not an urgent situation I was indeed pregnant and I did need to get to the hospital in the timeliest manner he could manage. I smiled when he simply responded with ‘Oh my God!’ and stepped on the gas. I had to reiterate a few times on the drive that I was not in labour and he didn’t need to break laws to get us there. He almost didn’t want to take my money; he was so busy trying to get me out his cab that I had to remind him that I owed him twenty bucks.

I got into the hospital and went to the 7^th floor, where they have the labour and delivery which brings me to an entirely separate point of why they make pregnant women who are often in labour when they are headed to their department go all the way to the 7^th floor? I understand that the first floor needs to be ER but why not have maternity on the second floor? Why do we need to go to the 7^th floor? That is a lot of floors when you are cramping and scared! When I finally reached the triage area they informed me that I had needed to get admitted, which happens on the first floor. I could have cried, and while I don’t remember it very well I think I might have done so in the privacy of the long elevator ride back down to the first floor. As I turned the corner to admitting I saw Tim standing there waiting for me, I can’t tell you how wonderful it is to see the face of the man you love, your partner and the parent of the child who’s life you are so afraid for standing in front of you, offering his arms to you. Never have I felt so safe, never has it taken so much courage to leave that safe place. The funny part is that it was around this time that the cramps had stopped and I began to feel very silly. Had I dragged Tim out of a meeting, worked myself up to a frenzy, almost got a cabbie arrested for reckless driving and all of it for nothing? Would the doctors look at me and see a panicky new mother to be and dismiss me as silly? I was hoping that this would be true but at the same time feeling very stupid at the same time.

We got admitted and made the trek back up to the seventh floor. The triage nurse came in and hooked me up to a monitor and quickly ordered that an Ultra Sound machine be brought in to my bed. They did a scan and then called in the doctor. Not our usual doctor, this one was named Doctor K and he was much more uptight, he seemed to think this was bad, and he had me come to another machine so that they could have a better look, but again, he said it doesn’t look good. ‘We are going to have to take this baby’, the flow on the cord was going backwards, the baby was starving because the placenta was failing him.  I looked at Tim in shock, this was just unreal, we had had an ultra sound just the day before and they hadn’t seen anything wrong. What had happened?

I didn’t know Dr. K. This was my first interaction with him and he was fairly high strung, although to be fair I know him; I have since had a chance to get to know him after he started coming to our church and he isn’t that way normally, it was what the situation called for. At the time though it made me nervous, I wanted my calm Dr. R to come in and give me his advice, if he, in all his calmness agreed with Dr. K then I would agree to the procedure. Even before the thought was fully formed Dr. R came in, he had been on his way home when word came to him that we were there, he spoke with Dr. K and he agreed. Josh wanted to join us now and we couldn’t wait. The surgery would happen, regardless of the outcome. Joshua would be born that night. Tim made phone calls to parents, I sat paralyzed with fear, the doctors had said he couldn’t come early hadn’t they? All the paediatricians’ had agreed that with Josh’s heart problems that he wouldn’t survive an early birth, what did all of this mean? If Dr. R was no longer calm, what did it mean for Joshua?. People were surrounding me, prepping me for surgery, asking questions about when I had eaten last, what allergies I had and any other number of other questions. After our parents were called Tim was stuck at the foot of the bed, he tried unsuccessfully to reach me but when he saw my fear he got annoyed and yelled, ‘let me get to my wife, she’s scared.’ I have had a million moments in our marriage where I have felt safe and loved but this one stands out so clearly to me. It was like he was my own knight, slaying dragons to get to my side and protect me. A pediatrician came in and started talking about risks, it was pretty dire. With his heart condition his survival chances were low, if he had any to begin with. All I could think about was the doctor who had warned me to bring a camera when the baby was born because it would most likely be my one chance to have a photo of my son. My heart filled with panic, I had not brought a camera. I needed a camera. It is amazing what happens in the face of fear, the things you think about.  They gave Tim the consent forms to sign and started to wheel me away but Tim stopped them and asked for a moment to pray with me. I don’t remember the prayer per say, but I do remember feeling peace. This was it, our moment of truth. Miracle or no miracle we would find out tonight."

Josh was born at 8:50 PM on January 31st 2008. He was blue and not crying. The nurse held him up briefly for me to see and when I looked at him his eyes were open and we made eye contact with each other. I didn't see him again until almost midnight, after he had been stabilized enough to move to Sick Kids.  When I think back on those moments of not knowing if he was alive or not, when I remember that empty feeling when I touched my abandoned womb, I still tear up. However, when I think back to all the things that led us to that surgery, that day. The cramps that led me to the hospital, the previous hospital stays where I was injected with steroids so his lungs would grow, the knowledge of his CHD and the preparations that were made for his delivery. I can see how each thing, each person, each prayer was answered. Now, 6 years later I too spout off about early screening because although we didn't have pulse - ox, we knew, and in the knowing we saved our sons' life.

Heart Mom

I found this on Youtube and it said many of things I feel and think... I just had to share!

WARNING: This may bring on a sudden onslaught of tears, watch at your own risk with kleenex handy.

Sovereign

This is going back in the archives but the song has been floating in my head all weekend so I thought I would share this with you.

a look back...

 
As we move into Heart month I am thinking about all the moms (and dads) out there who are at the very start of their CHD journey. Just today I was reading about a woman who has just learned that the child she carries will be born with a congenital heart defect. It brings it all back and I remember how lost and alone I felt at the start of this journey. I was once asked 'what would you say to another Mom about to face this?'... My response was simple. "You aren't alone. You can't do this all by yourself." 

I started a book a while ago (I was even finished it until Josh went into heart failure again) and I recently read through the beginning of it again and thought that I would share my thoughts about what it was like at the very start of this journey of the heart. The following is a portion of what I wrote in the months following Josh's diagnosis. It's dark, because those were dark days for me, but if you really want to know what life is like with CHD you need to look at the dark stuff and see the dirty parts in order to fully understand and celebrate the victories. If you want to know what faith is like, you need to journey to the places where the seed of faith was stretched and fed so that it could become a shoot.

"I am the pastor’s wife, people look to Tim and I as examples, we aren’t supposed to falter. We aren’t supposed to fall. (This is of course just my perception of how we were viewed, it's not necessarily how it really is) We live public lives in so many ways and this is one of them. There is an ownership that people have over him and by association me, everyone knows us because of his job, and because of his job everyone expects high standards of faith and morality. I knew what I was getting into before marriage, I was fully aware of what would and wouldn’t be expected of me and I signed the marriage certificate. The reality though, of trying to suffer the doubts and frailties of life in plain view of those who either look to you for guidance or who look to you to fail is something that no one can prepare you for. Not that I would have made a different choice, I wouldn’t have. It just means that there is an added element to suffering and that is that you keep it quiet, you hide your doubts, you stifle your anger and you weather the storms with a big smile on your face and hope nobody notices the cracks.

I don’t know how it happened, but I slowly closed up. No longer an open and warm person I began to hide, I began to pretend. I didn’t want pity; I got angry when people said ‘I am so sorry about your son”.  How dare they? I wasn’t sorry about him! He’s my son, I wanted him, I loved him, why would I be sorry about him? No one understood, except Tim but even he didn’t have the same feelings for Josh yet that I did. I felt alone, more alone than I have ever felt in my life. People would ask how I was doing and I would smile and say that I was well, that everything was okay. What was the point in telling them how I felt? I could barely put it into words myself, let alone tell someone else how I was feeling, how I was coping or what was going on in my head.  Was I okay? I don’t think I even knew that I wasn’t ; worse,  I didn’t know then how ‘not okay’ I really was. Something happens when you become a mother (or mother to be), suddenly your world shifts and you are no longer at the center of it, but this new little life is. Everything you want, everything you feel, everything you do is put second to your child. You make them your center, not that this is right or even healthy, but it happens. This little life is put into your care and you get a God complex, believing that you are solely responsible for their well being, their happiness, and ultimately for how they turn out when your job is done. This is usually the point in which God slaps you up side the head and reminds you that he alone is God.  God didn’t smack me in the head until much later. He allowed me to move along in this lie for quite sometime, like an illness it took over completely. I started to believe it must be my fault somehow. Had I eaten something bad at the beginning of the pregnancy? Had I done something in the past that had caused this? Had I committed some horrible misdeed that I was being punished for? I began to bargain with God, begging him to make Josh well at all costs. I used all the manipulation tools that I had in my arsenal. When nothing worked, when Joshua was born barely clinging to life I began to seriously question my faith, my theology, and the cracks got deeper, the armor I wore became tougher, my smile and false front of strength became my shield against the pain." 

We have now been living with CHD for more than 6 years. We have seen a lot, grown a lot, found strength, comfort and eventually peace. This is what I have learned as a response to what I wrote back then.  Peace & strength comes in waves, just as the worry, fears and doubts do. I can go a full week without thinking about CHD and then one day Josh will look pale, or he will say he's tired and the doubts come, the fear and worry threatens. Tim and I will hear Josh say 'I am tired' and though it could be a totally normal response to a full day we will still share a secret look... the look that says 'is it starting again?'. Just as the moon has phases so does our emotions surrounding CHD and Joshua, so does our faith. The story of any family living with CHD is not static, it's fluid. You have to expect movement, you have to expect waves, the best you can do when the waves are high is hold on and ride it out.

What remains unchanged between then and now, what will remain unchanged from now until the day I die is this: CHD has not and will not break us, we will not give up, we will continue to fight for Josh and kids like him (those here and those not yet born). We will continue to have faith, we will continue to seek answers and hope and we will NEVER be in control, we will never have all the answers, we will always need to lean on our faith put all of our hope and belief in the God who is sovereign, the God who created Joshua just as he is, and who loves him much more than I ever will. 

It's February!

It's February 1st. I find it ironic that I spend the last day of January celebrating the life of my heart warrior and then the month of February fighting to raise awareness for congenital heart defects (CHD). Before Josh I had never even heard of CHD, I had no idea that kids were dying all over the world, daily, because they were born with broken hearts. I thought heart problems stemmed from blocked arteries & poor health choices and I thought kids who died from health problems had cancer or cystic fybrosis or some other ailment that could be caught, and fought. I had no idea and I know that there are still millions who still have no idea. CHD doesn't discriminate, and it can't be cured, there is no prevention and if you ever sit in the fetal ECHO lab and get the news your world will never be the same.  That one conversation changes all your hopes and dreams, it changes the path you were on, it changes your relationships, it changes the very core of who you are.

Just this past 2 months alone I have heard from 3 families (in my small circle alone) who have lost their little warriors to this often fatal illness. It's path of devastation reaches all corners of the world, it touches the wealthy and poor alike, and anyone touched by the hand of CHD, the kids, the parents, the friends, the Grandparents, the aunts, uncles, sisters and brothers all face the battle together and yet they also fight it many times alone; because unlike most childhood illnesses, CHD is not a 'known' illness. The kids look (for the most part) like any other normal child. You just have to look at Josh to see the truth of that. When he is playing with his friends or running around the house you would never know that deep within his chest cavity rests a broken heart.

The sad part of CHD comes in the knowledge that there is no cure. You can't take a pill or start a treatment program to make it all go away. You won't go into remission, you won't one day get a test result saying you have beaten it. The best outcome you can hope for is time, time between surgeries, time for the doctors to research, time to live. The lucky ones (and that number grows as research progresses) live to see their adult lives, but then of course they face the uncertainty of life in the adult care system. A system I will discuss in more detail as we move deeper into 'Heart Month'.

This February I ask you to take some time out to learn more about CHD, to read what I post here regarding CHD and pass it along on Facebook, twitter, email and any other social media you may use so that together we can raise awareness. With awareness comes knowledge and with that comes hope. Hope for more funding, hope for more research, hope for more kids living to see adulthood, and hope for an adult system that can take care of these special hearts. Heart families do not need to be alone in this fight, you don't need to wait to have a child born with a broken heart to spread the word.

I am not asking for money. I am asking for your time, and I am asking for a simple click of your mouse (or finger) to share each post regarding CHD. (Though if you do have spare cash around and are looking for a good cause I have many organizations that I would happily direct you to.

Many blessings friends. I value each of you and your loyalty to this blog and to our family. I look forward to sharing all that I can with you about this killer that stalks my son and many other kids like him.