I don't even remember that guy anymore. Will the "pre-Down's diagnosis Tom" make another appearance, or, like New Coke and Michael Keaton, is he gone forever?
This "new" Tom knows only that he needs to keep writing, to frame these days lest they evaporate as quickly as Britney Spear's career. (I'm in the mood to write analogously today, if you haven't noticed)
In the last three weeks, I've:
- been introduced to Down Syndrome, really for the first time in my life (other than half a day spent filming a Special Olympics event for a science program nearly 15 years ago.)
- experienced the shame of feeling relieved that Ian was asleep when I introduced him to my co-workers. He looks "normal" when he sleeps.
- learned that the word "normal" is a loaded and imprecise word.
- had to face all my insecurities about standing out in a crowd.
- been introduced to a new and insightful group of online writers who share many of my feelings and experiences.
- been dismayed by lack of fathers who write about their experiences raising a son or daughter with Down Syndrome. Come on, dads, it's OK to be a bit mushy when it's your kid; your wives dig it when you show some emotions from time-to-time. Trust me on this one.
- felt like a project. "Tom and Annie need our help. They need our prayer. What must they be going through?"
- been incredibly grateful to so many people wanting to offer us their support. To the people who cooked us dinners, sent us money or cards or cards with money (always a favorite), stopped over to see Ian, and even gave us a second car. (More later on how funny it is to see my wife driving a 1992 Buick Park Avenue. Sorry to all the environmentalists out there, but doctor visits trump CO2 emissions these days.)
- experienced more jealousy than when I was dumped by Trish in the 10th grade. "Why do they have a "normal" baby?" (There's that word again.) "I would be a much better dad than he ever could."
- experienced shame because of jealous thoughts.
- been avoided by some people at my work who now seem afraid of me. I'm not going to break if you talk to me, people.
- avoided talking to some people at work because they are now giving me sad, puppy dog smiles all the time.
- tried not to pay too much attention to Ian at the expense of spending time with Silvi. Then have felt guilty for spending too much time with "normal" child at the expense of showing affection to - what do I call Ian - my other child who is a child first (I've been reading, can't you see?) and happens to have been born with Down Syndrome which is NOT a disease but is just a wee extra chromosome that just happens to muck up just about every part of living a "normal" life. Sorry. I started feeling sorry for myself again.
- met my new son and have fallen in love with him. (That's for my wife, but I happen to mean it.)
13 comments:
It has been a very busy few weeks for you.
One of the things I love most about life is being able to reflect on these busy spurts of the past. Those times that have been particularly uncomfortable, confusing, and difficult.
I have had those moments when I am certain that the world is crumbling around at my feet, and yet I have managed and survived. I find it especially valuable to be able to draw upon these times when faced with new challenges in the future. I convince myself that if I was able to manage “x” whatever “x” may be, I can certainly handle the next piece. It may not be easy, but it is possible.
I am glad you are able to do some reflecting while all of this is so fresh, so new. I am certain these first posts in the beginning will give you great strength in the future when you reflect on them as well.
On a side note, about fathers…my husband was unable to accept my child’s diagnosis. Our marriage wasn’t rock solid before her birth, but it was certainly the straw that broke the camels back so to speak. Most of his beliefs were cultural. He was born and raised in Asia, taught that anything less than perfect was not worthy. As if anything perfect exists anywhere.
My point, if there was one, it is obvious that men and women deal with emotional things in life differently. I am quite impressed with your acceptance. I scouted out other dads and sent them to you because I wasn’t sure what to say to a dad (as you can see now by my huge comment I have overcome that concern).
Please let you wife know that if she ever needs to talk I would be more than happy to correspond with her. I’m not sure what her support systems are, but I know talking was a lifesaver in the early months of Miss E’s life. I have moved my personal deep thoughts to a private blog now, but there are plenty of good blog reads of all backgrounds, religions, and ideas.
I hope that she is able to connect with some mamas who have already traveled this path, when she’s ready. There are MANY resources available, something that fits everyone in terms of comfort.
Keep writing, it is a powerful means of therapy, and so helpful to others too.
Ok. Enough of my rambling, now go give Ian a kiss and a hug from Miss E and I.
I wish my husband Dean would write. Maybe someday he will. He's not Angela's father, so he got to CHOOSE Down Syndrome. Well..she and I came together as a package, but he had to be able to accept her in order to have me. He's a wonderful dad, and I'm so very thankful for him.
The emotions we go through in those first weeks are something else. Well, I have many days where I still go through some of them. (especially in the last week!) For the most part, one day you wake up, look around, and realize that it really isn't that big of a deal anymore. Your family takes on a life and rhythm that you never would have imagined would be comfortable.
There are LOTS of things that we, as your new fellow club members, just cannot explain. You just have to experience it.
Don't worry too much about Sylvie. You see, to her Ian is just Ian. She doesn't see what you see. And to her, some things will ALWAYS be "normal". My Angela had a gtube (a feeding tube in her abdomen) until she was 3 1/2 years old. When we had to have it surgically closed there was all kinds of discussion. Her older brother Bryon, then 10, pointed to his belly button and said, "How old was I when I got my tube out?"
At 10 years old he had no idea that "normal" toddlers don't have tubes. It was just normal in OUR house. Didn't bother him one bit.
The time issues with Sylvie will be tough sometimes. Angela had a lot of medical issues, so I arranged to have a babysitter one day a week when I could do stuff with just her 4 big brothers. We called it "adventure Wednesdays" and we built memories with them. For Ian, once you get the medical stuff sorted out (soon you'll know most if not all of what he does/doesn't have) you'll have a better idea of what's ahead for you. Hopefully Ian will be one of those kids with DS who gets to have "just an extra chromosome" and not some of the other complications.
Hang in there, you're doing a great job! The Buddy walk is this weekend at Como park. I know it's soon...but I also know there will be other new families there. If you're interested in going, drop me a note. Angela and I are going alone, so we won't have a big group with us. If it's too soon for you, I understand. It took Angela's dad till she was 2 to attend any events.
We went through some of the same experiences, but with a different syndrome. It does change you forever.
Keep writing. It does help.
Gone forever.
It's not a bad thing, though. Your life has changed a lot; your friends may change. You're probably starting to see why we all fall over ourselves for our kids, as I'm sure you will.
It's part of what you grieve, the life you expected for yourself. That's easy to forget when your instincts are focused on others' needs.
For the scaredy co-workers, you could try "BOO!" It'll either break the ice or they'll have you committed.
Glad you're writing!
It's amazing isn't it? At the moment Ian is just a baby, and if he hadn't been born with DS you would still be doing exactly the same things with him - feeding, holding, reading to him.
Until, or unless, he has any associated medical difficulties, it will be a while before his DS manifests in any kind of noticable difference. It might be longer before he sits up unaided than it was for Silvi, or longer until he learns to walk, but other than that, all babies tend to have the same needs.
It's only because you know he has DS that all the stress is there. And that's all about fear of the future - what if you are unable to cope with (insert fear and uncertainty here)?
But by the time any of these things need to be dealt with, you will be older, wiser, better read, better prepared, have a better support network, be in possession of more knowledge and have a clearer outlook.
In other words, your future self will be far better equiped to deal with any potential difficulties.
So trust him.
Trust yourself to make the right decisions in the future at the point you need to make them.
And do keep writing about it. In the future you will forget large chunks of what you worried about - I know I have and would find it very difficult to write clearly about how I felt on a day to day basis back when Meg was only a few days/weeks/months old.
You'll be a great dad to Ian, Tom, because you want to be.
Rebecca: Really sorry to hear about your husband. I get frustrated when I hear such things because people often don't know that if they would just weather the storm, the rewards are priceless. Again, sorry. And I will let my wife know that you are up to talking; she's got three sisters and a good group of friends who have all been great, but it will help to talk to someone who has gone before on this path. Thanks.
Leah: I have the Buddy Walk as being on the 7th; is that right? We are still up in the air about going; thanks so much for the offer. And I don't mean to be down on dad's who don't write. Most dad's express themselves in a variety of different ways. I just thought that with "350,000" children with Downs that there would be a few more than the half a dozen or so that I've found. Crazy.
And thanks for the thoughts on "normal." Silvi loves her baby brother; her own personal play thing.
Karen: Thanks, and I hope to (keep writing)
Archie: I figured as much, the old life being gone for good. Some of our friends have already been a little "different"; hoping it will pass. And will have to give the "BOO" thing a try; either that or join Kim by skipping through the hall handing out flowers.
Kim: I've always been sort of the worrying type. Maybe that's what all the reading's about, trying to plan for and possibly control the outcome of the future. Wish I could have lunch with "Future Tom" so that he could give me a heads up on how to chill out a bit more. Appreciate the thoughts on being a good dad, too. I'll take all the kudos I can get these days.
Keep writing.
It changes nothing expect ourselves, which is everything really.
To be honest, as you are here, is the truest form of power. And no one can take it away from you.
We have a peculiar habit in our culture of victimizing others with our own insecurity. The puppy dog eyes, the oh poor tom, the pat cliches, they are fumbled attempts at empathy that become pity. which is to make another less than who they are in their fullness. Yes, Ian being born down syndrome was a surprise. Yes this is and will be hard. Yes, you have doubt and fear and love and gratitude and all can coexist. You get to be worried and adoring and disappointed and confused and overcome with love all at once. They do not cancel each other out, though it can feel that way when people either pity you or tell you how lucky you are.
In many ways old Tom is gone and there is grief here. We don't get to go backwards. We can not un-know what we now know. Like Persephone who once again walked on the earth after her descent into the underworld, she carries both within her. Like Christ who died and descended into hell to then be raised again, how could he ever be the same? He was now life and death and new life. I think old Tom is there, but not in the same form, not in the same way. New tom now knows things, holds more of heaven and earth, and there is a price to pay for this kind of wholeness that breaks us open so we might live open. We become whole new people. This is the bad news. This is the good news. this is the mystery I do not understand but know to be true.
Thanks for the great words, Isabel. You've got a talent for capturing little snippets life and emotions on paper (or cyberspace.) Please say hi to Todd and keep laughing with Leo.
I am impressed both with your honest, thoughtful posting and your commitment to your son, but also with the supportive, compassionate comments.
One thing I would add is that the people giving you those sad puppy dog looks just need to be educated. They are merely ignorant about DS and need to learn.
Thanks for the heads up, Mary. I agree. I also knew next to nothing about DS until a month ago.
I can tell you this. I honestly know where you are coming from and what you are feeling. All of it. You are brave, honest, and inspiring.
Thank you, Tricia. You forgot - scared. :)
Scared is good. I was scared when all of my children were born. And when my last was born, with ds, I was scared as much as I was with my first who was typical. When she went through open heart, I was scared to death to hand her over. Scared to death for them to do this little "slice" to her. Scared to death to see her after. But oddly enough, we did it. Through our fears. And today, she is a vibrant little 3 year old. Who scares me because she is so stinkin adorable, I am afraid I will spoil her!!! Fears are real. They change with time. You will too. But all of those changes will be necessary. Not because who you were before was wrong. Or bad. But because who you will become, will be stronger, better, and more real. Enjoy the journey to real. W
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