And We're Off!

Blogging is new to me.  My husband has written some pretty awesome children's books, and I have said to him "you should start a blog!"  And he hasn't.  But now I am.  Not to post his children's books, but because I want to have a place to put down some things that swirl around in my head.  I hope that some other moms/dads/people in general will be able to relate to what I write...

I am the lucky, proud mama of two kiddos.  I have a 4 year old daughter, who we accidentally happened to start calling "Bug," and a 2 year old son, lovingly referred to as "Mister."  So, there's the explanation of the name.  Welcome to my blog.  :)

The inciting incident that caused me to finally start this happened on Sunday.  The kids and I went to my sister's church (my husband works on Sundays and could not join us).  Bug is a bit different from other four year olds.  She has developmental delays that we noticed around 4 months, and her official diagnosis is static encephalopathy.  What that means is that she has some sort of as-yet unnamed genetic condition which has caused her to develop at her own pace.  She also has hypotonia (low muscle tone) and dystonia (involuntary muscle contractions), making moving her body more difficult than most kiddos.  She talks all the time, but many of her words are not ones we understand.  

Let me be clear - Bug is a gift from God.  One of my closest friends says "she gives love."  Her smile lights up the room.  She is kind, sensitive, happy, and so loving.  Having a child with special needs does make life a bit unique at times, however.  

So, we were at church, and I dropped off Bug and Mister in the nursery.  It is technically for children ages 3 and under, but Bug cannot attend church school like her peers.  And the nursery ladies allow me to have both of my kids in nursery.

There happened to be a baptism on Sunday, and the pastor asked the children to come forward and sit on the floor in front of the baptismal fount.  My beautiful 4-year-old twin nieces headed up to participate, and I started to cry.  Baptisms make me cry anyway, but this time I was crying for the same reason I often cry when things like this happen.  I am heartbroken that Bug cannot participate.  She wasn't there to know what she was missing, but too many times I have watched her expectant little face as she observes others play or do something she'd like to do, and my heart breaks each and every time because she is unable to participate.    Being perfectly honest, I am also sad for me.  And that makes me feel selfish and guilty.

When Mister was born, Bug was 23 months and had just started walking.  He is such a cool guy, and he's a fast learner.  Before Mister came along, Bug was our "normal."  Then he started to pass her developmentally.  I am so proud of him!  He is such a wonderful brother; he takes his sister's hand when I ask him to help make sure she doesn't fall.  He gives her hugs when she's sad.  He is a typical 2 year old, though, and I have to say - it's nice that Bug didn't give us some of the fits we currently get from Mister.

All in all, I remind myself daily that we are so blessed.  We have two amazing children who are relatively healthy.  I often tell my husband that our problems are small potatoes compared to so many people out there.  But, there are days that it is hard to remember that.  I worry about what Bug's future holds.  I pray that God will "cure" her, then I feel like a terrible parent for praying she were any different than she is.  And I feel badly for being so proud of Mister, as if I am dishonoring Bug.  Not to say we don't celebrate her achievements, too.  Getting food on a fork and then getting it in her mouth is rewarded  by lots of cheering in our house.  But I still always feel guilty.

So that's the crux of why I am writing this blog.  We'll see how it goes!