You too? I thought I was the only one.

I just read an article about grieving a child you haven't lost. You can find the article here:  http://themighty.com/2015/08/why-i-grieve-for-a-child-i-havent-lost/?utm_source=Facebook&utm_medium=Mighty_Page&utm_campaign=Facebook_Page

The mom that wrote the wonderful post explains her experience with her 7 year old son. I wept while I read it and although I don't share all of her experiences and my child is only 2, I related to her and I loved her honesty. 

So here is what I'm grieving. I find myself feeling like I am missing out on a typical chatty princess loving 2 year old. But who knows? Maybe she would have been shy and maybe she would have loved trucks. Maybe she does love princesses or trucks or both. But she can't tell me and that hurts.!She can't giggle about it and ask me why that princess has red hair or why that truck is bigger than our van. And it hurts. The unknown hurts. I dream frequently of her little feet running towards me and her little voice telling me she loves me. Yes, I know she may do all of these things but it won't be soon and I grieve that. I'm watching my 10 month old son become a toddler and he is wanting to get into everything. He loves Mickey Mouse Clubhouse and says about the same amount of words as Lottie but he says them more consistently.

When I first found out I was pregnant in the fall of 2012. I immediately wished for a little girl. But I often told people "it doesn't matter as long as the baby is healthy" Side note: I honestly hate that phrase now. When I was pregnant with Max I said "as long as my baby is happy." That is a lot more obtainable I have discovered. 

A couple months later when the ultrasound tech told us that it is was a girl. My heart leapt with joy! I knew I was made to be a girl mom. I couldn't wait for dresses, musicals, tea parties, dance class and a sweet little voice. She was born in July, 6 days before my birthday and she was perfect! My beautiful baby girl. 

As she has grown, we have learned more about her limitations and have heard a lot of big picture theories on who she will become. But that stuff, even the scary stuff doesn't bother me as often as the day to day things that I feel like we are missing. I have great hope that she will walk and talk and choose whether she is a tomboy or a girly girl or somewhere inbetween. But all that doesn't stop the day to day pain of looking at my two year old and longing to talk to her and listen to her attempt to speak properly and maybe even hum Frozen's "Let it Go." 

Last week I observed her in her therapeutic classroom, where all the kids have special needs but she is the only one that doesn't walk. I watched the other kids in the class crawl through a tunnel as Charlotte stood strapped in a stander just watching. I know this bothers only me and not her. She was smiling and laughing at the silly boys. But a part of me broke. She will only be small enough to crawl through that little tunnel for a little while longer and she may never be able to experience that joy or many other physical toddler experiences.

I know this post has been raw and smells a little of self pity. That is not my intention. My intention is to give you a glimpse into a special needs moms world, my world. And so other moms know it's ok to feel sad sometimes. As I'm writing this, I wonder if Lottie will read this one day. If you are reading this my sweet girl, know that I absolutely would not change the last two years. You have taught us so much about how it is ok to be different and you are magical to us. You were born with a terrible disease that I am sure you also don't appreciate . But you are amazing! Your muscles slow you down but you find a way to make things happen. You have doctors and/or therapist messing with you all week, every week and you are still one of the happiest toddlers I know! Your giggle and love for anything sweet tasting brings us so much joy. And the way you look at your brother with a look of pure pride and  excitement is the best gift to me. Yes, I'm mourning the things I wish you could do and maybe you will mourn some limitations someday too. But as long as you are happy a reasonable amount of the time, as your dad and I are, then life for this mommy is good! You are good not just good, perfect and we love you!