We’d wanted to have a baby since Maggie was 1. I have two brothers (much older) and Jenny has a sister (close in age) and we’re both very appreciative of the relationships we have with our siblings. They challenge us (both my brothers and Jenny’s sister), they help us grow as people (Jenny’s sister), and they put us down when we need humbling (my brothers). But, for a hundred reasons – none of them Rett related (directly) it was impossible for us. The stress of Rett may have been a factor, but whatever it was, it was difficult for us to conceive. About three years ago we made the decision to pursue alternative means of conception and started meeting with fertility doctors. We met with fertility lawyers and fertility agencies and adoption agencies. It was a whirlwind of emotions trying to make decisions while we were grappling with the realities of Maggie’s diagnosis.
Would we be able to handle another child? Would Maggie? Would she still get enough attention to keep her progressing at the same rate she is? Would a second child provide more love for our family or more stress?
These were the questions confronting us when making the decision to pursue growing our family. Not to mention the ever present worry – what if the second child had his or her own health complications. How would we deal with that? You never think going in to child bearing that he or she might not be healthy, but because we had lived through the devastation of finding out our first child wasn’t, it was on our minds.
Ultimately, Rett Syndrome families and typical families alike told us there’s nothing better you can do for your family – the love he or she will fill your house with is unrivaled and a play buddy who fully understands Maggie can only be therapeutic to all.
About a year ago we met a gestational carrier who we immediately clicked with. A gestational carrier is a woman who carries the genetic material of the intended parents – we would implant a fertilized embryo and she would keep it safe for 40 weeks. She wanted to be a surrogate for all the right reasons, she wanted to help us, she had compassion for our situation and the doctor thought she was a good candidate. We thought she was perfect. We signed the papers and started the process.
We had genetic testing done on our own embryo to limit our risk and after all was said and done we had but two viable candidates. Making more would be costly, both in time and money, and we were anxious to get started. We implanted both, at doctor’s orders, and 2 weeks later we were told that one had successfully implanted. We were going to have a baby. After much trial, we were finally going to be able to complete our family with a little boy.
He was due March 4th, and as it turns out, we had a fundraiser for Maggie planned for February 26th. As it further turns out – and as I’m learning about children – plans do not matter and at 11AM on the 26th I got a call from Jenny – AJ, pack your bags, we’re having a baby. I scrambled to make sure that the comedy show was taken care of, leaning on my friends Daniel Kinno and Samee Junio to keep everything running and Dan Levy to host in my stead. Other than that, the show as going to go on. The show must go on. It matters for Maggie.
I headed to the hospital, about 45 minutes from LA. The entire trip I kept thinking about what it meant that I was missing the show. I had 45 minutes to obsess over the fact that I was abandoning this event that we had put together for Maggie to tend to our new child. I was immediately fraught with guilt. This was exactly my fear – and in the first possible opportunity I was presented I was choosing the new baby over Maggie. At least that’s how I thought about it. Maggie wasn’t going to be there. She wasn’t going to know. But she would hear the story. She would hear how I bailed on her fundraiser for him.
I kept my mouth shut at the hospital for as long as I could – about an hour – but when it seemed like this wasn’t going to be a quick delivery, I asked.
“Jenny, if he’s not coming until later, what do you think about me making the show?”
I knew it was an impossible decision and a difficult thing to ask. If it was Jenny giving birth I never would have been able to even ask, but because of our circumstances, there was a shot. The nurse confirmed we had a few hours at least and I grabbed my stuff and hit the road.
I pulled in about 15 minutes before the show, popped up a RettSyndrome.org sign at the front door, took a deep breath and readied myself. I jumped on stage and told this story. I let everyone know that though my wife was at the hospital about to have a baby, I came to this show, to share information about Rett Syndrome with them, because that’s how important this cause is for me.
We made almost $3000 at that show, capping off a whirlwind few weeks where we finally hit our stated goal from two years ago of raising 100k for Rettsyndrome.org through Magnolia’s hope donations and I made it back in plenty of time. Plus I got this sweet shot of Anthony Jeselnik supporting the cause!
Grayden was born at 3:00 AM that morning. He was healthy and the nurses were taking care of him. Again, as a result of our situation, he wasn’t in with Jenny right away and the nurses would take care of him through the night aside from feedings. This gave me enough time to run back to LA to see Maggie before school. So for at least one twenty four hour period I didn’t have to feel like I was choosing. I imagine it will be harder to keep that same level of impartiality, but for one day it worked out for me and Maggie. And when Grayden hears this story, I can’t imagine he’ll feel anything but pride that I cared that much to be a part of both of their stories.
And while I was able to achieve some level of impartiality, Maggie, when she met him for the first time, was less impartial. She will warm up to him as he warms up to her. I imagine she had the same thought my brother Steve had when my brother Rich was born – “I thought I was getting a big brother.”