Thursday, May 3, 2012

 Goodness, look how much smaller she was last summer, when we took these pictures for Babiekins Magazine!
 And how much messier her room was, too ;)
It's true what they say, it is absolutely giddying how fast children grow. It's inconceivable. And it's time you'll never get back. How can it possibly go by with such lightening speed? It doesn't seem fair. 

Every now and then, I feel like I ought to address on this blog what it's like to have a child with a medical condition, a handicap, a special need...whatever you want to call it. It's hard for me to remember to talk about it, because - well, because it is such a non-issue in so many ways.

I mean, of course, it is an issue. Mainly, it's an issue in that there are piles of medical bills to pay off (yes, still, from our round of surgeries last summer) that leave us with sweaty palms when we think about them. It's an issue in that she has speech therapy several times a week, but since she is in fulltime preschool this year, that happens during school hours. In the summer, we will once again be taking her to her cleft specialist for speech therapy, and it will be time to address some issues that she needs to focus on in the wake of her last round of surgeries. 

Mainly, I am forced to remember about her speech delay when we meet new people for the first time on the playground, and I occasionally have to explain why her speech doesn't sound like your average 4.5-year-old. And don't get me wrong, she does have a significant speech delay. The sounds that she cannot pronounce are many, and severe. The inside of her mouth is just not built like the rest of us, and no surgery can duplicate the parts of her soft palate that never formed, so she will spend years trying to learn to work around the parts of her mouth that are formed differently, in order to duplicate the sounds that most of us can make without thinking. 

In two to three years, she will have a bone graft to fill the gap in her upper jaw in time for her adult teeth to grown in. That will be a painful surgery, as you can imagine. But for the time being, we are facing a blissful reprieve from surgical procedures, and I can't really express how quickly normalcy closes in when we are not dealing with the hospitals. 

Because we hear her talk all day every day, and because we understand her so easily, it is quite easy to forget on a daily basis that there is anything different about her. And then there is the fact of her personality, which is flawlessly self-confident. She has no insecurities about her differences, and she is supremely confident that she can make anyone, from her peers to other adults, understand what she wants to say, one way or another. Because she is so confident, and because she is so adept at communication, her social interaction is seamless. She has charm. She has confidence. She is popular. So really, when you think about it, this is not a child with disadvantages. This is a child with ADVANTAGES. 

That's all I am going to say about it for now, but I feel like I need to say it in a public forum from time to time, because I know that there are many people who can't imagine taking on a child with special needs. Of course, not all special needs are created equal, and each child handles things differently. 
We are fortunate and so is Q. But I know that, to the uninitiated, the thought of 18-odd years of major surgeries, long, painful recoveries, surgical team meetings and speech therapy sessions might seem like an awfully high mountain to climb.  I am one parent who's here to tell you that it's nothing of the kind. There are far worse problems to have in this world. Far worse. What we have is a happy child, a child brimming with joy who lives each day with vigor and delight, and fills our every waking moment with so much joy that we are full to bursting with it.


  1. Any child with a special need is a challenge, particularly to the child who has to live through it. But as you so wisely have stated, the child itself and its personality must not be overlooked. Adversity shapes many and brings forth reservoirs of resilence we did not know we had. Q is strong and she also loves life and I personally think your parenting has helped her through a lot. Thank you for sharing your story and helping people see children for who they are past their physical disabilites.

  2. Beautiful text! And you and her Dad made Q so confident, so sure on her own two feet, you have been able to instill that joy of living and love for life, laughter and smiles, allowing her to have pain and cry, to love and be loved. This is wonderful! Thank you for sharing sweet Maia. It is always a privilege to come and read your words and see your absolutely stunning photo. Kisses for Q, and please keep some for you.