Last year when Josh was being wheeled into the OR a song started repeating in my head, actually it wasn’t a song so much as a line from a song, one that got stuck on repeat in my brain throughout the entire time he was in the OR and in the days that followed. I didn’t know the song but when I did a Google search later I discovered that it actually was a song, and though I didn’t know it I had the lyrics right and the tune correct.
“This is where the healing begins, this is where the healing starts”...
I don’t know what I expected from that little message, perhaps I secretly harboured a hope that we were leaving all this uncertainty behind us, or that at the very least we would have years of good reports ahead of us. Maybe we still do, but maybe we don’t.
All summer I have lamented the fact that Josh has gone through another growth spurt, he’s jumped 2 shoe sizes and is quickly shooting up... now I see how it’s not just the sadness of seeing my baby getting so big that is a problem... with height change comes heart change. Josh’s latest ECHO (done on Wednesday) shows that his Tricuspid valve has moved from a mild to a severe leak; and the right side of his heart which had been shrinking in his ECHO in March is now larger again. The Pulmonary valve is still holding and his heart function is okay. So what do we do? He is Asymptomatic at the moment so there is nothing to do about it except wait... and that is tough.
Last week I read a blog post by a fellow heart Mom, she wrote about what it’s like to wait when you are talking about CHD. She wrote that you are waiting for your child to start dying so that they can go in and fix it... and she was bang on. Basically we are waiting for Josh to go into heart failure again so that they can intervene. Do you know what it's like to wait for your child to start dying? Maybe some of you do, maybe some of you also understand that pain, the fear.
I keep going back to that song, what did it mean? It seemed so heaven sent at the time of the surgery and it comforted me through the days and weeks following post op, but what if it was wishful thinking and not God at all? What if, somewhere along the line I had heard that song and it registered in my subconscious mind only to emerge when it seemed fitting? I am not sure.
How many times have I asked God to confirm his words to me, not just these but other things I have thought he said to me? Yet I am met with a form of silence? Does that mean he’s just waiting, or that he just can’t confirm the words? I’m at a loss...
This week I spoke with someone who is going through so pretty insanely hard stuff, he has some tough decisions to make and he expressed himself with the words “I am just so tired”. I feel that this week. Tired.
When I was in Austria I would use my days off to head up to the pass and try my hand at snowboarding, I still remember the very first time I got off the chair lift at the top of that mountain and stood in awe of the view before me. Mountains for as far as the eye could see, peaks and valleys for miles. It was awesome, and a little scary. One wrong turn and down the wrong side of the mountain and you would be hooped. I look at where Josh is and on one hand I am so thankful, so fully aware of the blessings and miracles we have received in our lives, and on the other hand I see the mountains ahead of us and I am exhausted and a little scared when I see what still lies ahead of us. Not just Josh’s heart, but his brain too.
I was challenged this week on Facebook to do that gratitude challenge. 5 days of thinking on the things you are thankful for and I have to be honest, it’s been a tough week for it. Yet, I am really glad that I did it, glad that I was forced at the end of every day to sit and take stock of the blessings because if not for those quiet moments of introspection I would have struggled to see any good. The news about Josh should have been expected I suppose, valves don’t last and Josh has a history of rejecting them quickly... but I had hoped, really hoped that this time would be different.
With all that being said; and in the vein of the gratitude challenge I will end saying this. We have 6 more months until our next ECHO and barring him becoming symptomatic in that time we can enjoy those 6 months. I’ve often said that in our world, six months between appointments is a huge blessing. It should also be said again that the pulmonary valve is still holding and as long as it’s holding it is keeping the heart functioning well enough. I knew loving this much would hurt, that it would be hard, I just never realized how much or how hard, but this pain, this difficulty, proves that I love, and that is not something I should lament but rather celebrate. Josh, Kaleb, Tim...Those three men who have changed me with their love; I don’t need a five day challenge to know how blessed I am to be loved by them.