MOSAIC MOMENTS

As parents of children with Down syndrome or mosaic Down syndrome we often worry about so many things when they are first diagnosed. Yesterday, I asked what your biggest concern was when your child was first diagnosed. Most of the comments on this question were united in that they worried more about themselves instead of their child’s condition. I thought that was an interesting take on things, but not at all wrong!

When you first have a child, any child, your whole entire life turns around! All of the sudden you are completely responsible for this tiny life and your parenting instincts come into play. However, when you have never had a child before, this can be a very scary experience and it really doesn’t matter if they child has Down syndrome or not! In these instances from our readers these children were their first born. (to the best of my knowledge) So, of course they were worried about how having this child was going to change their life! And, when you add “Dr. I have bad news” into the equation, you are more than likely going to worry all the more! You worry about how it is going to affect your lifestyle. I think the biggest thing that comes to mind is that you wonder if you will have to make changes to the way you live. The answer is in some ways Yes and in some ways No. 

Yes, because you will find that when you have a child, any child, you can no longer jump up at 11pm and say, “Hey, lets go out!” Because with any child, every trip is a planned process of packing half their life into a diaper bag, and still planning around naps, feeding, sickness, weather, etc. And, yes, your life does change when you have a child with any special needs, because you do a few things differently than you would a child without special needs. You may have more doctor appointments. Your child may need therapy to help with developmental delays. You wind up learning a whole new language that only other parents of children with special needs understands! You almost always have a medical degree equivalent to at least an MD, just without the shiny certificate hanging on the wall. Instead, your shiny certificate is that beautiful picture painted, drawn, colored or scribbled that adorns your refrigerator door.

And then, the answer is also No. No because you learn that Life Goes On! And, because no matter what, your child is a child first! Your child will still be mischievous and get into trouble even though they knew better to do what ever it was they ventured out to do. Your child will still smile and laugh and love you unconditionally just like any other child. Your child will frustrate you, worry you, scare you, make you happy, make you proud, and make you wonder what you ever did without them!

I have five sons. Each are a challenge in their own way. And, each have made me angry, embarrassed, sad, frustrated, happy, and extremely proud. 

Is it different to have a child with Down syndrome or mosaic Down syndrome compared to having a child without extra chromosomes? Yes! It is different for sure! But different does not mean worse!

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