Warrior.

Griffin is now a year old. A whole year has gone by and it almost seems unreal. Most parents get all geared up for the first birthday…planning for weeks, sending invitations, ordering a special cake, getting cute presents, etc. And then there’s us. We didn’t even buy a present, we didn’t even think about it. We sent out a text to family members to be at the hospital by 5pm so we could do a quick “Happy Birthday” and eat some cake. Cake that I bought at Giant Eagle the day of, and had them write a quick little happy birthday message on it. Oh, and balloons. I bought some balloons. The thing is, for days all I could think of was not that he was turning one and we needed to have some lavish party that he would never remember, but that he survived a whole year despite what so many medical professionals thought.

I look at Griffin now and think about the times when NCH had lost all hope for him. They refused to do the surgery he needed. They didn’t think it was a good idea for us to fly to California and get care at LPCH.  Honestly, it was a shit show the first five months of his life. And if we as his parents hadn’t fought so hard, he wouldn’t be here. That thought alone makes me cringe with disgust. And you may be thinking, “Oh I’m sure LPCH was the same way or maybe he was just more sick here than he was there”. But you’re wrong. If you haven’t read my other blogs or you’re not updated on him regularly then I’ll have you know that he went through tremendously more at LPCH than he ever has at NCH.  You may also be thinking that I shouldn’t be bashing or upset with anyone because after all, he’s alive and well. But you’re also wrong. Because a parent shouldn’t have to fight so hard for their child while doctors are discouraging them. If a family has hope, let them have hope. And you better be fighting your damn hardest for them too, otherwise, why are you in the medical field? Fighting for them includes encouraging second opinions with other hospitals, which for the record, they didn’t. We went down that road on our own.

And it makes me irate that at one point, they drove the thought of him dying so far into us that for one second, it flashed through my head that they were right. That we were going to have to let our baby die while we were holding him. Inside these white, sterile hospital walls where he had been since the day he was born. Can you imagine being a parent and asking a doctor if it’s OK if you take your baby outside so he can die in the sunlight instead of inside the hospital? It feels like you’re reaching inside your chest and squeezing your heart so hard that it bursts, draining all the life and happiness out of you.

Without warning they gave us four options after we were already in talks about going to LPCH. We could “put him on the cath table and he would die, put him in a plane and he would die at take off, sedate him heavily where he would have no quality of life until he passed away, or take him off the vent and let him pass away in our arms”. They were giving us options and every one of those options had the same ending (according to them) which was inevitable death. Griffin was two months old at this point. We had already had two months of being his parents. Learning what he liked, what he didn’t like. Taking a crash course in nursing and respiratory therapy because that was our life everyday. But they had no hope, they were giving up. Griffin was desatting (losing oxygen) constantly all day at this point and getting worse as the weeks went on. We were in constant fear and it was only made worse by the lack of confidence in the team caring for him. 

We went home that night and made the joint decision that we weren’t going to do what the doctors wanted. We weren’t going to take Griffin off the vent to let him die. We were going to fight. We were going to put him on that cath table so we could send the results to Stanford. And once that was over we were going to put him on that plane. Because at the end of the day, giving up was not an option. We knew the risks. We knew what the chances of his life were as they were wheeling him away for that first heart cath. While we stood there with our family crying and somberly walked to the waiting area. As we sat, paced, and went outside for some fresh air. For hours we waited, only to prove to everyone that we were right. That he was strong enough. After that, I never faltered again in believing if he was strong enough or not.

Since then he got on the plane they were sure would be certain death and slept the entire time to California. Yes we had an extremely rocky road while we were out there but that road led us to here. A week away from being discharged and taking Griffin home for the first time. He may not have had the normal first year upbringing. He didn’t get the cool sign on his birthday that said what he loved eating, his favorite thing to say, what date he rolled over/walked the first time. But nothing about Griffin is normal. If I had made a sign I would have listed all of the battles he won. The five heart caths, two open heart surgeries, a sternotomy, a tracheostomy, countless imaging procedures…the list goes on.

He’s one year old now and he has the battle scars to prove to everyone that he is a warrior. No one can say anything different.

Don’t be afraid of being outnumbered. A lion walks alone while the sheep flock together.

Tightrope.

“Patience is a virtue”…the thought runs through my head as I quickly run through everything happening in life. Having a child in the hospital, having kids at home waiting on us to return, having a fiance being spread as thin as a piece of paper to keep bills paid and still see all of his kids, including the one in California. Meaning constantly going back and forth. He gets to be in California and be with Griffin and I, and then he’s back in Ohio to be with the other kids and to work. I don’t give him enough credit, no matter how many times I tell him how proud I am of him, it just doesn’t suffice. It’s more than just being away from the kids, he deals with the little things that pile up, that I would normally be there to take care of with him. And to top it off he has court for custody stuff that should be over (because we were awarded full-custody for good reason back in July). Unfortunately, some people are just so full of hate and jealousy that trying to remove their negativity is like trying to pry out a splinter that has been lodged for far too long, festering under the skin. He’s been working on that metaphorical splinter for what seems like decades but it’s a slow, painful process. So the result of our current “waiting period” is all the same, extraordinary amounts of stress. Stress from Griffin, stress from court, stress from the kids being upset about us gone, stress from normal life things such as bills, etc. It’s all a mess.

So back to “patience is a virtue”. How can one feel as though they’re able to be patient with what feels like the entire world on their shoulders? Tell me, please. Because if anyone has some superior enlightenment on how to be tension-free with everything that’s going on, I’d love to hear it. The problem is, if you’re not in my shoes, and you try to give me advice on our situation, the value of the advice is masked with ignorance. Not for lack of trying to understand what we’re going through as a family but just not being involved. No one is as deep in these trenches as Jarryl and I. It’s our son, ours and the kids lives that have been turned upside down. The best anyone can do is offer kind words soaked in positivity. It might sound as though I don’t want that, it’s just that it’s all I’ve been hearing for months and it gets to the point that it’s like a broken record. I know I’m strong, I know Griffin’s strong, I know Jarryl’s strong, I know the kids are strong, it just doesn’t mean that we should have to be. We should be at home, cuddled under blankets on the couch because it’s snowing and the house is chilly. Holding Griffin while listening to the kids argue over someone laying too close to the other one, or deciding what movie to watch next.

The point is, virtues suck. I don’t want to be patient. I want to have a plan. I want to know the next steps instead of being stuck in this unending game of unknown resolutions. But it’s not that easy, there are a ton of variables to consider before deciding on our next steps in this medical journey. The pacemaker hasn’t been placed back in yet, we’re still operating on temporary wires. Temporary wires, wires that are connected to his heart but advance through his abdomen and exit through his belly to connect to an external pacemaker. The wires are secured with only stitches and tape. Stitches and tape are keeping my child alive. Let that sink in.

Do we place a bigger shunt when the new pacemaker goes in? Do we wait and just place the pacemaker and do nothing else? Do we wait two more weeks or four more weeks? Do we continue to make progress on the vent or ease up a bit? Do we want to ween more sedation before the next surgery or leave it alone so he doesn’t withdrawal so bad? We’re literally walking a tightrope. One bad decision can have us falling off and plummeting to the unknown.  The questions and fear are endless, and this will never end. CHD is not curable, Griffin will never be “fixed”. A full repair does not mean he will not be back. There will be surgeries his entire life, for every child with this loathed disease.

And I might just be feeling extra irritable about the waiting game because yesterday was a milestone birthday. Yesterday I turned 30. And yesterday I didn’t have my family with me. I did, however, have my best friend. Flying 2,456 miles to make sure I didn’t spend my birthday alone. It’s an undeniable act of loyalty and friendship and I couldn’t love her more for it. She tried her best at keeping me happy and she succeeded, until I decided it was a good idea to get a couple drinks and cried at the bar once I started thinking about Jarryl and the kids. Ugly cried, I never cry when I drink, ever. Props to her again for helping me come out of it.

At the end of the day I just want Griffin to be as healthy as possible so we can make the journey back to Ohio. I’m just sucking at the waiting part.

Patience is the calm acceptance that things can happen in a different order than the one you have in mind. – David G. Allen