Lydia Rose

This sweet, sweet girl.

I wish everyone could have a Lydia in their life. My feelings for our little one are so tender. This last year has been anything but easy for her. As I have reflected on this last year for her my heart has hurt. She has undergone surgery, is connected to a tube half of the time, has had dozens of doctor appointments, had numerous x-rays, dozens of wires placed on her, been poked and prodded all over, and spent hours and hours and hours in the car and in waiting rooms.

Some days it just hurts. Some days I look into those beautiful eyes and I see the confusion and anxiety and there is nothing more painful as a mother.

But this girl. If we could all be more like Lydia – this world would be a beautiful place. She is the definition of long suffering. She humbly allows all of these things to be done to her. She never fights us.

One of my favorite things about Lydia is she truly just GLOWS. She emits light and goodness and she just draws you in. You want to be with her. And everyone knows Lydie’s job in our home – to boost morale! And she really does! She has super powers with the kids. If one of them is starting to have a negative attitude, we add Lydie to the mix and things turn around REAL fast! They just adore her and she fills our home with LIGHT.

Our world continues to come to a complete stop when Lydia laughs. It is the best sound in the world and we love it. And I have noticed that her two therapists that have worked with Lydia for over a year now, stop every time she laughs, too! It’s just the best. And her two goofy front teeth that make their appearance when she laughs is just THE BEST.

Something we have been working on with Lydia is finding out how she “accesses” things. A common characteristic of Rett Syndrome is non-purposeful hands. Lydia has this very strongly. She wrings and claps her hands almost constantly which makes playing with toys or doing anything with her hands feel almost impossible. And while we have found some things that help a little, we have found her preferred way of accessing toys is with her nose! It is so endearing! I love that cute little button nose.

We are grateful every day for this precious little one. She makes everything better. We love you, sweet girl.