I admit it! I was obsessed with Leighton's Birthday this year. I thought about it, and stressed about it for months. It had to be bigger then any other first birthday I've done. I knew she didn't need a lot of people, not in that way, but I wanted it a big deal. I was contributing my obsession to her pending surgery. I thought that must be why I was so adamant that I put a lot of effort into this party. Then last week I finally came to the realization that it came from her birth.
Her birth wasn't celebrated in the normal way. I got a lot of presents for her and a lot of congratulations. But I also received a lot of sympathy cards, phone calls, and comments. I know some of them were for her being in the NICU and sick, but also, there were some that were more of the...Sorry for your stroke of bad luck. Undertones of I'm glad it's you and not me (can you imagine). By the way I'm not trying to hurt anyone's feelings, but this was our reality.
I've been reading Bloom by Kelle Hampton, and her sister said it best (at least in my mind). She said society conditions us to think having a baby with "special needs" is unlucky. I cried over it (Ds) not very long. My trauma was more over how society would react to her, and me. I never pictured my self as that type of Mom, and I had to adjust my outlook on the mother I was and was going to be. I was over it, that Ds thing. I was worried about her health and some of the worst news was when my nurse informed me she wouldn't leave the NICU until she was discharged (around a week) she would NOT be coming to my room, EVER. I loved her, and she was so cute. I just wanted my baby girl with me, and coming home with out her was the worst moment of my life.
(we teased she was enjoying the tanning bed a little too much,
because she had to stay under the light 5 days).
I think I must feel guilty for the tears that were shed at her birth. They were unnecessary, but how was I to know? How is anyone to know when society tells you that your new child is a defect, and most of the population would have aborted the fetus if they knew.
I don't think I can truly convince anyone of this fact, unless their in this same ride as me. I don't know if people will fully ever believe it, unless their this kind of a Mom too. This Ds thing is insignificant, Leighton is perfection. I get the "I bet she will be high functioning, she looks like it's a mild case, you can't even really tell, and she exceptionally cute, that were lucky of that" a lot. My husband and I talk about all the Ds kids we meet, and see, and really aren't they all cute, and amazing? Yes we certainly think so. Society perceives these kids a certain way, and I'm sure I can't change societies views. I just want to be happy with our little bug, and give her a good life. She has an amazing family, and extended family that love her.
(her adoring brother)
(her silly sis)
(the big family)
One of my favorite examples of this is My little brother. He never shed a tear over Leighton's diagnoses. He held her for us when she was first being admitted to NICU, and they were stabilizing her oxygen. I was to numb (epidural, and after birth stuff) to go with her, and her Daddy was in shock from the news. He celebrated her life, and was excited for her, from the moment He got the phone call.
My Mom and little brother call me everyday to bring her over.
(the two teaching Leighton how to lick the frosting off the candle)
They want to hold her and make her smile. They miss how happy she makes them feel. If my Mom has a bad day she calls me to bring Leighton over to make her feel better. She just does, make your day bright, that is!
(her favorite present of the night)
This really has been the best year. There has been a lot of ups, and downs with her medically (heart surgery mostly), but she is our little sunshine, and that song is truly about her. Were so happy to have her, she makes our family whole. It's the best.
Every year I will celebrate it in a happy way. She is amazing, and I'm so happy to have her.