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.