Man, I've got to shake this off! Yesterday was my "pity party" day. Poor Tom. Moping around, throwing tantrums, little fits that would make my two-year-old daughter proud. Reading depressing poetry. Blogging about it. I'm resolved to not blog when I'm in one of those moods again.
I'm blessed. I've got an amazing wife of 14 years, a beautiful little girl and an incredible new son. No more pouting.
That said, I wonder if anyone has some advice about making life decisions after learning your child has Down Syndrome. The reason I ask is that, even though it's only been two weeks, I've found that I've lost some interest in abstract philosophy, which is rather unfortunate being that I've just started a company to teach philosophy.
The day after Ian was born, I, not knowing the first thing about Down Syndrome, googled the condition. I'm a little embarrassed to admit it, but I didn't search for medical information or living with a "disability", etc. I researched Ian's potential ability to grasp abstract thought. One of my dreams has always been to share a deep appreciation of film, music, Story, theological and philosophical discussions with my children. One of my favorite things to do is to sit in a cafe and talk about the Big Questions.
Ian may never be able to participate in these kinds of interactions. I'm OK with that - now. I really am. But it leaves me in a quandary: What will I care about in the coming weeks and years? Now that I want to experience life with Ian and Silvi, to share in the things that they enjoy.
I was just wondering how life with Down Syndrome changed what you care about... and how it will change how I view life and the things that matter.
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My life before Elainah included one full-time job, one part-time job, and college full-time. I haven't worked since. I did continue to go to school, at least the first summer and fall after her birth, then I lost interest.
In the first year of her life all of my energy was focused on keeping her alive.
Her entrance into the world was free of the medical environment, born in a water birth, attended only by a few. Her birth plan went just as I had anticipated, problem free. My midwife and I knew immediately she had Ds, but it didn't send me to the hospital. She was one and a half days old when she was admitted for "failure to thrive". It was a rough first few weeks, filled with disappointment, grief, and more tears than I even knew possible. Each precious breath more valuable than anything I could have ever imagined before she arrived. She had multiple anomalies, most of which were not directly related to the extra chromosome.
As she grew older I adjusted to all of the extra things our life entailed. Before long the awkward feelings about how I was going to manage all of the challenges was replaced by an unexpected comfortableness. I think it was at least six months before I felt comfortable out in public with her. I wasn't ashamed of her. Although, I did worry about the potential staring, comments, or those awful stereotypes I didn't want to hear.
I never worry about the perspective of another these days, and honestly, I don't have many days where I think about the things she may not do as a result of that little bit of something extra by way of a triplicate chromosome. She is as much a part of our family as anyone else. Her personality shines in everything she does. She may not be the best communicator, but oh this girl can charm people. She is a very active little girl with strengths and weaknesses just like all people.
I do still worry about her education. I do think about how she will be accepted by her peer and teachers. I think all parents do this.
I have learned many unexpected lessons about the real meaning of life through the beauty of my youngest child.
You have just begun a journey, give it some time, what was important before may change, but no matter the results the value will be the same.
Before I had Joey, I had just moved up to CT with my husband... I started working at a medical office full time to save some money and I was planning on going to back to school. I didn't plan on getting pregnant 2 months after our wedding, but it was a very happy, welcomed suprise. We found out prenatally that Joey has DS so we had months to prepare before his arrival.
For me now, I am not only a full time, stay at home mom, I now think of myself as a full time advocate for people with Down syndrome and other disablities.
When I watch Joey achieve a new milestone, I appreciate it more and know how it took him a little longer than it would have with most other babies. The look of determination on his face brings a smile to my eyes everytime I see it.
Just take each day with Ian as it comes and enjoy each and every minute of it as you would with any baby.
Rebecca: Thanks for the thoughts and encouragement. I hope that Elainah embraces her education and meets some good friends as well.
Jessica: I'm glad there are people out there who are advocates for people like Ian. And thanks for the advice - One day at a time is about all I can handle right now.
Nothing wrong with a few pity party days - it's perfectly natural; it's a lot to wrap your brain around for a while. My only advice on life decisions is don't make any major ones for a little while.
Even if Ian doesn't grasp existentialism anytime soon, I'm sure there will still be plenty of people in your life to enjoy a deep chat with. And who knows? I'd recommend a post I found recently from a defunct blog by Michael Berube for a possible glimpse into the future.
I haven't had any fundamental changes in my beliefs or views since Lili's birth, but I have some very different priorities. I actively want to be an advocate for Lili and anyone with a disability; a bit more focused than my earlier desires to save the world...
And, I'm glad you shared your pity party day - it prompted a reread of Hopkins' God's Grandeur (my father wrote a piece for the New Hampshire Music Festival based on it). That poem always takes me through a rapid cycle of despair and hope.
Your worry is the same worry the rest of us had. Those who've gone before you, and those who will come after you, will all experience it.
If you haven't already found them on my blog, go here and watch some videos of things Angela has accomplished.
http://gardenofeagan.blogspot.com/2007/04/heres-cute-angela-video.html
Don't think I don't still worry on occasion. Angela is soon headed to middle school, and she's well into puberty which scares the crap out of me to be honest. I have always tried to worry about things in steps. Like, "Ok, I don't have to worry about who she's going to marry yet, but it's appropriate to worry about weather or not she'll be swimming for REAL next year.
Silly things I know, but I worry about them! Isn't that our job as parents?
Hey Tom,
Those questions your asking in this entry are abstract, are they not? I thought about those questions as well when I learned about Ian having Downs Syndrome (and at some level am still asking). But the best questions don't have answers. Rather they tend to open us up to reality, even when words fail to describe that which we feel so deeply.
Ian chose some cool parents. Also, never forget the peace in the room when he was born. That seems significant in all that comes along your journey.
I think about you and pray daily.
Okay, good night.
Brtet
Archie: Thanks for the article link; pretty amazing knowledge of The Beatles. I'll have to check out Hopkin's poem.
LeahI'll check out the video today; looking forward to seeing what Ian might accomplish. And I'll definitely pick up a copy of your book.
BrtetThanks, man. I already love Ian and all he does is sleep and... well, you have a son, you know the rest. Trying not to think too much about what might be lost with Ian as opposed to helping him be all that he is supposed to be. And he's got a big sis who is anxious to teach him about the finer points of somersaults.
I think you will be surprized. Avery is my most intuitive, most sensitive child. (he also happens to have DS). I think your son will teach you philosphy on a new level.
But he's just a tiny baby! That's a lot to put on any child, I apologize!
My husband and I are both writers. When we were still in the NICU, one of the nurses said something to the affect of how sad it was that Avery would never read our books. At the time, it felt like a devastating predicion.
Four years later, I can say she was just flat-out wrong. If you wanted any advice, which maybe you don't, I would say just take it one day at a time, and let your son show you who he is, and what he loves, and what his potential is, before you make any life assumptions for him, or for you...
Blessings to you and your family!
If you're reading all you can lay your hands on about DS, then I'm sure you'll have come across the fact that it's extremely common for parents to go through a form of mourning for the child they expected to have, and this is usually accompanied by a strong sense of guilt as it feels like a bit of a betrayal for the child you do have.
The point being, go easy on yourself - whatever you feel is perfectly natural.
As for loss of interest in abstract philosophy, I think that happens when you're faced with practical realities that tend to blot out everything else for a while. When I was studying philosophy at university, my wife was fond of saying, "It's all very well you sitting around and pontificating about the universe, but the washing basket still needs to be emptied."
Don't worry, once you've had time to allow your thoughts and emotions to settle, your love for abstract thought will still be there.
After reading this post, I wondered for some time about what might have changed for me after Meg was born. The big change for me didn't happen immediately after her birth, but 5 months later when she had to have open heart surgery and I had to face the very real possibility I might lose her. I wrote a bit about it in my post Losing my religion, if you're interested.
Kim,
I left my response on your blog posting "Losing my Religion." Cheers.
Tom
Don't ask me I still can't decide!
Peace.
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