Monday, July 12, 2010

Of course I want another 'like him'

Today we have a guest blog from Brittany Ross of Winnipeg, Manitoba. She writes about her life with her adorable son Skyler (above) at Taking it Day by Day. Thank you Brittany!

Of course I want another 'like him'
By Brittany Ross

When I was younger I used to dream of having the perfect family. There would be me, a loving husband, and a bunch of rugrats to chase after. My dreams started to come true in my early 20s, when my loving husband and I got pregnant. However we didn’t expect what was about to come and how others would react to our decision to have more children. Ever since the birth of our first child other people have become judgmental and accusative with questions like: “Are you sure you want to have more kids? What if they’re like Skyler?” My answer to these rude questions is always the same: “Well I am hoping for a girl this time around but if we have another boy we will be just as happy and blessed.”

Why would people ask this question at all? It’s simple: my son has special needs. He was born with a rare condition that prevents him from producing most of the hormones our bodies need to keep us alive, and along with it comes underdeveloped optic nerves. The condition he has is called Septo-Optic Dysplasia. What this means in a nutshell is that our son is legally blind and requires daily medicines to live. He’s also at risk of going into adrenal failure, seizures and death if we don’t monitor his cortisol levels carefully. Now while logically this explains why people wonder why I’d want more children, it doesn’t explain why they think they have the right to ask such questions.

Is it fair to my child to imply that there’s no reason for his parents to want another child like him? I suppose it’s important to point out that the people who ask this question have never had a child with special needs themselves. So I guess they just don’t get it. I still don’t think this excuses their behaviour. My son happens to be the happiest, sweetest, funniest, and definitely cutest toddler I know! Of course I want another child like him -- I should be so lucky.

Don’t get me wrong. I’m not going to gloss over the facts and say that it’s not hard being a parent to a child with special needs. There are appointments after appointments, there are nurse practitioners, pediatricians, endocrinologists, ophthalmologists, cardiologists, neurologists, physical therapists, occupational therapists, speech and language pathologists, just to start. There are tons of things to learn about like assistive technology, audio books, Braille, tactile illustrations, orientation & mobility with and without a cane, how to administer meds orally, how to administer meds with a syringe, where to inject the meds, when to call the ER. Not to mention all the developmental and social aspects!

And yet, we do want another child. Even if there is a possibility that our next child will have the same special needs as Skyler. We already have all the supports in place, we are mastering the learning curve for his disabilities, we’re on top of his med schedule and all of his therapies. If the next child has the same issues, well that just makes it easier for us since it’s something we’re already familiar with. While it is hard at times, it’s also overwhelmingly rewarding. Our son is a wonderful ray of sunshine on a dreary day. He lights up our lives and those of everyone he meets. So to answer those questions, yes I hope that our next child is just like our first!


Hi Brittany,

Reading about you and Skyler was an absolute joy, as I pray that you, your husband and your children to come share a lifetime of happiness together.

In addition to this, I'm also writing to tell that although your son will forever life with certain disabilities, science is unable to calclate or explain the value of the human spirit or the depths of a mother's love. For instance, when I was born, doctors told my Mom that I would not talk, walk, or move from the neck down. However, my Mom refused to believe this and taught me how to crawl. Talking, using a wheelchair and eventually walking with crutches would slowly follow. Today, despite having to undure many bumps and bruses along the way, as I've been bloodied and on my kness more than once, I will never allow a disability or few words which are written on a piece of paper define who I am. May your son do the some, as things hopefully become easier for him, day by day.

God bless and thank you,

Matt Kamaratakis

I just wanted to touch on this whole idea of how people, some we know in our lives, and some we don't, walk pass that barrier (often without grace) and ask us questions that ultimately devalue our children. I struggle with this continuously and I have to commend you on your conviction. Your Skyler is beautiful, by the way, and I think you make a wonderful family!

thank you for writing about already having the supports in place and mastering the learning curve in providing care for your son's specific needs as a benifit when considering a second child. I am in a similar situation and realize our next child will very likely face the same issues as the first. This does not stop me for an instant is saying I want the next CHILD (as a person to love and watch grow up), and we will deal with the needs as they come.

Thank you for the wonderful comments everyone. They mean a lot to me.

I fully support you Brittany. Parenting is always a big unknown. What is perfect anyway? I would say that in matters of the heart, your sweet son is more than perfect. WE never know what we will get or what our kids will do in the future (whether we like it or not!!) We just love them. Period. That's what it is to be a parent in my books.