This year has been full of challenges, triumphs, and joys. We have been bone crushingly tired (and remain mostly so). We have spent days in the hospital. We have cried, but not as much as the first year. We have laughed. We are in awe of just how beautiful Lily is, how perfect.
…how she smiles sweetly as she drifts off to sleep
…how she loves to snuggle with Daddy
…how she only pops her jaw when she’s happy or content, or to get a reaction from people
…her little coos, that are sometimes very loud!
…finding out what toys she likes
…her excitement when anyone in the family comes by
…that she loves kisses
There is a lot that you have to come to terms with as a special needs parent. Will she? Won’t she? Does it matter? I admit it is still difficult to see children about the same age as Lily doing what she would have been doing. It’s hard to see little babies doing things that she can’t. There are definitely some challenges to having a two year old that is more like a four month old. And there are joys.
I think that’s what I wish that the doctors had told us the day they gave us the Officially Official news. Yes, tell us that it looks bad. Tell us what it might mean. But then don’t leave it there and ask if we’d like to go into the other room to cry. Tell us that we will love her fiercely and that we will find the joy, the hope. That the little things she does will be cause for great excitement (even though that will sound bad at the time). That we’re going to meet people along this path who will comfort us, encourage us, and help us. That we’re not alone. No, we didn’t ask for this, didn’t plan for this. That it’s going to be hard- so so hard… and that it will be beautiful, so very beautiful.
Happy 2nd Birthday, Lily Bean. We love you more and more each day.
St. Lillian, St. Faustina, Our Lady of Loreto, and her Holy Angel, pray for her!