A Dad's Perspective
Today, I am so so excited to have my favorite person to guest post for Down syndrome awareness month. I love when my husband writes for my blog. He is always so honest and direct, and I think that is one of the things I love most about him. I asked him to write from a dad’s perspective- what it is like raising two sons with Down syndrome. So without further ado, here is my love, talking about our two little loves.
Elizabeth asked me to write a blog post from a dad’s perspective about raising a child with Down syndrome. If you know me, everything below will make sense. If you don’t know me, I am sorry. Here are some random and loosely connected thoughts on raising a child or children with Down syndrome.
Finding out our son had Down Syndrome
First of all, let me say I have two sons, 7 and 2 years old, and both of them have Down syndrome. I mention this because it is really all I know as a dad. I can view other families that have children without Ds, or even those who have both, but my perspective is only having children with Down syndrome. That being said, I don’t consider myself a parent of special needs kids. I consider myself a dad of two boys... who happen to have Ds.
Let's go back to the moment I found out our first child had Down syndrome. Dex is adopted, which some of you already know, but we did not know he had Ds until about 2-3 weeks prior to him being born. One of the most interesting calls I have ever received was the agency asking me, “Do you still what him?” I thought this was a strange question. Without hesitation, I said, “yes” though my tone was more like, “well, of.. freaking... course we still want him.” I have to emphasize, just because I was confident in moving forward with the adoption, it did not mean I wasn’t scared shitless.
I was scared because I was not sure I was qualified to raise this child. His birth parents were gifting him to us in hopes he would have a better life with more chances to thrive, and with that great honor, I could not help but wonder if I was capable of living up to their hopes and dreams. But at that moment, it was as if Jesus said, “You’re fine.” Yes, it was that simple, like “Calm down bro, he is a human like everyone else.”
That confidence from God means something different now that Dex is seven years old and we also have Gus who is two years old. In the beginning, it was as if I was going to devote my life to raising this “special” child. A child who would obviously need “special” parents. How arrogant does that sound? People reinforced that by telling us how special we were and how great we were to take on something so hard (with the best of intentions of course). Looking back, it makes me sad to think about. What people are really saying is, “It is noble for you to inconvenience yourself and raise this child.” I say this not to offend anyone because I thought the same thing prior to our experience and even early on as a parent. But we found out super quickly that we are truly the lucky ones, not the other way around.
It is common in our culture to see humans who do not contribute to the economy or require more resources as burdens. You have to really ask yourself if you believe in the intrinsic value of each human, regardless of their abilities or needs. In my very strong opinion, our kids are kids and your kids are kids. I meet parents of all types of children who have hardships and victories. It baffles me how the medical community and our society can test women who are pregnant and because of a Down syndrome diagnosis, recommend the child be terminated because they may be a burden on society. If you know me, then this comment will come as no surprise, “Crony capitalism is a burden on our society, not my kid!” We will save that conversation for another day:).
The joys of raising kids with Down syndrome.
I have been married for thirteen years and each year is better than the last. I have been a father for seven years and each year is better than the last. I love the honor of being the dad of these boys. I absolutely do not consider raising children with Down syndrome an act of charity, but an honor and a joy. They do not hold me back, if anything, I hold them back. We laugh, we play, we learn and explore together. Someone times we just party. We turn on loud music and dance around the house. I am not a stressed-out parent, I don’t try to live my life through my kids. I know they may act a little nontypical in public, but to be honest, I just don’t care what people think. Life is short, and my boys are my kids. I hope to provide as many joyous experiences as I possibly can.
The fears of raising kids with Down syndrome.
Being the main provider of the family can be pretty intimidating. Before I explain my fear, it must be said, I would be totally fine to be a stay at home dad and my wife be my sugar momma:). That being said, my kids have what they need each moment of their lives because Elizabeth and I are blessed to be able to provide for them. It is faith to have total confidence in God who provides for us, but it doesn’t mean that fear does not creep in. We use costly formula, we have extremely high medical bills without really good insurance and secondary coverage, we take the boys to endless therapies and sometimes spend weeks in the hospital. My greatest fear is my son looking me in the eyes starving because I was unable to provide for him.
Another fear I have is who will die first. Our kids or us? If our kids die first, we will always be there for them. If we die first, how will they navigate this crazy world? How would they handle another great loss in their life? I know my kids. I know when something is not right. I know when they are not being treated at school like they should. Even if my boys can’t communicate with words, I can feel when something is not right. Will anyone else be able to do that? This fear is a huge one that Elizabeth and I both have.
Lastly, one of my greatest fears is someone taking advantage of my boys because of who they are. Makes me sick, but happens to people with special needs every day.
The One Thing
Society makes people think that raising a child with special needs is so hard and burdensome, that you will have to put your life on hold. I think that is bullshit. I love my wife, I love my boys and I love my life. I am an entrepreneur, I go out and do more things than many other dads I know. Don’t use your kids as an excuse to not live your life. It is not always easy, but it is totally worth it.
I can write for hours. If you are reading this and you have specific questions, ask. I will write another post.