Maddie at 5, with her new to the world siblings.

(This is part of the continuing series on how life is when you add twins to a child with a developmental disability.)

BE CAREFUL WHAT YOU WISH FOR

I always figured I would have one child, with two being the absolute most I could contemplate. For those of you that are unaware, Susan and I had a hard time conceiving a child, as after 5 years and a lot of frustration, we turned to IVF. This is how Madeline was born. Several years later and wanting another child, IVF** became our option again and, considering our ages (we are very old) and certain other factors, we put back three embryos to increase our not so great odds. We did this, despite me always been consistent in my desire not to have twins, as I shuttered at the idea of how much work they would be. You know how sometimes you are dead-wrong about something you were sure about? Well, having twins was not one of those times. It is exhausting. (cue violin) Add to this the immense challenges of a child with special needs and it’s surprising that Susan and I haven’t killed each other. I think what has saved us is we are too worn-out to muster a fight. Our current plight would have sent many couples to divorce court, but we are very logical people. Who would want to get into a relationship with us at this point, anyway? Are you feeling the holiday cheer, yet?
**We realize that the Vatican has condemned IVF, so hopefully you won’t look at us and our children as social lepers. Hey, wasn’t Jesus born in a non-traditional way? Well, I don’t wear a pointy hat, so what do I know.

OK, I’ve got that part of the story out of the way, let me discuss Sam and Mallory. Sam was born vaginally, Mallory was born about 30 minutes later, via C-section. Yes, the double whammy. We must have unknowingly signed a pact refusing to do anything easy when it comes to having children.

I refer to our twins as being like the 2008 New York Yankees. Great individually, but as a team, not working so well together. Sam is built like a middle linebacker, but has a laid-back demeanor. He does want to be held most of the time…not a good trait in our current straits. Quite frankly, when he was born he was a bit goofy looking, but over the past few months, he has blossomed into a very handsome boy. Look at the picture, we make really great-looking children. Our children make us realize that at one point, we must have been pretty good-looking people. This is at least what we tell ourselves, as we know we are a shell of our former selves. Hey, maybe in a couple of years, after some semblance of regular sleep happens again, we can once again find that healthy glow.

Mallory early on was nicknamed, The Pistol, as she is quite the little fireball. She has no problem announcing her desires, especially when she pulls out her cry that reaches levels that only an in his prime Robert Plant could hit. Her hair is like her personality, as it stands straight up in the air and announces I am here and I’m not going to be ignored. She has a look like she should be fronting an 80’s New Wave Band.

Let’s move on to Madeline. 2008 has been a year where she has made immense strides with her speech and language. We will never be able to fully express our gratitude to her teachers and therapists for what they have done in helping us bring out what we always knew was inside her. The autism spectrum is really hard to explain, but as is often the case, with major advances in one area, other challenges come about. Maddie is in constant motion, as her motor runs at full speed from the moment she wakes up. Combine this with an increase in meltdowns and she can be quite a handful. Considering that babies like to scream and cry and Madeline hates loud noises, it’s not a great mix. She is starting to get used to the idea of them around, though.

Since I’m gone so much with my work, Susan has needed someone to help her, as caring for Maddie is a full-time gig in itself. We are incredibly fortunate to have Samantha and Rachael (Instructional Assistants from Madeline’s school) help us in this regard. (Maddie pronounces their names as Sassy and Kee-Coal.) These 2 young women have become like members of our family and we have the highest respect for them as individuals and as care-providers to our daughter.

At the beginning of the year, I was contacted by the social worker who looked after my father. I was informed that my dad didn’t have long to live. For those of you that have read my book, Dysfunctional Thoughts of a 21st Century Man, I had a very tortured relationship with my father. (Me playing the role of the one being tortured.) My dad had a pretty sad life, as his bipolar outbursts made him really difficult to deal with. Things had regressed to the point where he was bed-ridden much of the past few years with dementia taking over as well. For a reasonably young man, 62 years-old, it was sad to see him reach this point, even considering the psychic trauma he inflicted on his family.

I decided that I should see him one more time, to kind of make some kind of peace. I spent about an hour in his nursing home room trying to talk to him. Between his medication and dementia, it didn’t really seem like much was connecting with him. Before I left, I got up, gave him an awkward hug, and whispered in his ear that I regretted that we hadn’t had a better relationship. He responded to this by saying, in a heartfelt way that, “I’m really glad you came to see me. I love you…Jerry.” Nothing in my life has ever resembled a Hallmark original movie. I can tell you that being called Jerry at this moment was one of the funniest things that I’ve ever experienced. If he knew who he was talking to or not, if he meant what he said or not, I just want to say it was about as good as I could hope for. I spent most of my life not feeling that much except anger for my father, but since having children that I love so much, it has changed that rage into sadness for what I missed.

I have never been good at hiding my feelings about my life. Susan is someone who is much more private in what she wants to reveal, so I thank her for letting me share some of the struggles we go through in these letters. I know that what I write is not exactly what you expect from a Season’s Greeting, but it is the only way I know. Let me wrap things up by mentioning that there are 3 people in this world that fill Susan and me with an immeasurable amount of love and pride. They are Madeline, Mallory, and Sam. We continue to struggle with the difficulties that life can bring us, but their sweet faces can make us forget our troubles almost instantly. As overwhelming as things can seem, I wouldn’t want to live in a world without them.

We wish you a happy holiday season. Scott, Susan, Maddie, Sam, and Mallory.