Wednesday, January 25, 2012

How having a child with a disability has changed me

When I first found out that my daughter would have a disability, I knew that it would change my life. What I did not know was the extent of how deep some of those changes would be.

At times, some of these changes are negative things. When people complain about relatively minor issues, I can be less tolerant than I used to be. Particularly when they are complaining about issues related to parenting or medical stuff. I try to not let it get to me, but I often think "If only you knew how minor that issue is compared to others..." (and by others, I don't mean me - I know that there are MANY people in MUCH more difficult situations than mine. I met a lady last week with a 14 month old who has been inpatient for more than 12 of those 14 months. And I still get upset thinking about our 4 month NICU stay! I, too, need to put my issues into perspective...)

I think that as a whole though, the changes that I've had as largely positive. One of the major changes is that I am a lot more aware of others with disabilities. I used to avert my gaze or not even think about such issues, but I remember even being pregnant with Maddy and seeing people with disabilities in the street. I would look at them and smile and wonder how life has treated them. I wouldn't wonder so much "what is wrong with him?" but instead, I would wonder how they had been treated by peers, what services they were offered, whether they could live independently, whether they had been taken advantage of or discriminated against because of their disability. I would look at their parents or carers and wonder how their lives had changed, whether they had come to accept the disability, what kinds of joys and heartaches they might have had because of their child's disability.

Multiple times over the past two years, I have had interactions (or sometimes just observations) with people who had a disability that have reduced me to tears. I wrote about one such event that happened in Disneyland here.

Another time, I was at the hospital with Maddy and was looking out the window into the car park. I saw a man pushing a lady in a wheelchair. I presume she was his wife. As they got to the high wall, the man picked his wife out of the chair and held her high to see the gorgeous view that she couldn't see while seated. It wasn't until he put her down that I noticed that both her legs had been amputated at the knee. Witnessing such a simple gesture and thinking of the marriage vows that say "in sickness and in health" had me sniffling and wiping away tears in the crowded waiting room.

In addition to increased empathy, my knowledge about different disabilities has also increased. I read many blogs and one major "genre" (if you could call it that) that I read is special needs parenting. I find that I have so much in common with many of them, even though the diagnoses of our children may be drastically different. In reading their stories, I also learn a bit about a wide range of different disabilities, including cerebral palsy and Down syndrome.

NICU still gets me too - one of my friends has a daughter who is now about 7. She was born at 28 weeks gestation and spent months in NICU before coming home. Before Maddy was born, I saw those pictures and thought "Wow, she was tiny!" and not much more than that. After Maddy was born, I saw the same pictures and cried because then, I could feel it. I hear of friends who have babies in NICU and the same thing happens - I am so moved by their story because I've walked that road. The same for people who have troubles in their pregnancy - people who have poor prenatal diagnosis or who are unsure of the health of their babies.

I never expected that having Maddy would change me in all of these ways, but it has. And I'm glad that it has...


  1. I suspect that pre-Maddy you were a pretty special person!

    Forward me those references when you get a chance.

    Love Kate

  2. Just your post has me in tears. I feel the exact same way about everything you wrote. Since having Madilynn in our lives I have seen things through new eyes. I remember going in to one of our many appointments at the hospital and seeing a little girl about 4 years old and she had a huge red growth on her face (the size of a grapefruit) and before Madilynn I would have looked away to not embarrass her or her family......but I looked right at her, in her eyes and had a conversation about her super cute Dora shoes. Her moms face lit up as if to say "thank you for seeing my little girl, not her growth". It has truely been life changing for us, and mostly in the good ways!!!

  3. I loved reading this post. I am currently 26 weeks pregnant with a son that has been diagnosed with a skeletal dysplasia. We don't know what type yet, but I'm trying to prepare myself for a wide variety of potentials. Even though my son isn't even born yet, I find myself way more engaged in the "special needs" area and I'm no longer afraid of looking at someone that is beautifully unique in their own way. I also used to avert my eyes but I feel so much more empowered now to reach out and try to learn more about them. Thank you for sharing your experiences. I hope I can learn more things and get some more encouragement from your great blog! You can check out mine, too, if you want. I'm blogging about our pregnancy journey (