I think there's many stages to this. I guess it's kind of like grieving in a way, despite the fact that my daughter is actually happy and mostly healthy. I think I was grieving the loss of what normal was. I was grieving at the many changes that came with bringing Mallory home from the hospital. I was grieving because my boys spent the whole summer cooped up due to daily trips to the hospital. Grieving for the normal life my daughter may not have.
My first stage was anger. I didn't want to see pictures of other people and their perfect little baby girls. I hoped that any newly pregnant friends were going to have boys because I thought I might cry knowing someone else might give birth to a totally normal little girl. It's totally irrational and selfish and it's not even how I really feel, but I still felt it. There are days anger still rears it's ugly head, but mostly this has passed and I'm so not the type to want to deny anyone any happiness.
The next stage was fear. I was afraid for what the future held. For Mallory, for our family, for our finances. I was afraid she wouldn't make it home from the hospital. I was afraid I wouldn't be able to take good care of her. I was afraid I may mess something up.
Then came blame. I wanted to blame everyone. Anyone who may have hated me. God. Even a family member that made me feel really badly about myself. I was convinced he cursed my pregnancy. So silly, right? But I had to find someone to be angry at. That irrationality again.
At the end of all of this though, I have Mallory. She's sweet and adorable. And the fear is replaced with joy and love when I hear her little voice and see her smile. The blame was replaced with acceptance. Acceptance that not every life has to be written exactly the same. Mallory's story is special and whether others will see it or not, she's an inspiration. If to no one else, at the very least, she is to me. The anger was replaced with happiness. Hers and mine. She's strong and happy and so, so very loving. I couldn't ask for a more perfect little girl. She makes all of the hard work so worth it.
So back to the question of why. Well, I didn't really know and had discarded the question to the back of my head until I read another Mom's blog today. To the Troll Who Called My Son Ugly is the blog if you want to read it. In a nutshell, the blog is about how she posted a photo of her son with down syndrome on Instagram with the hashtag #downsyndrome. Some idiot human being commented on the photo 'ugly'. This person had to actually look up the hashtag to find these pictures of these beautiful children to insult. My first unthinking reaction was that maybe those 'trolls' would sing a different tune if they ever had a child with special needs. Then, I turned my brain back on and realized that a child as special as these kids, as my daughter, doesn't deserve to be parented by such ugly human beings. Sure, maybe some of them would be capable of change and truly be sorry for their ignorant behavior, but my guess is that they are too cowardly and weak to be able to take on such an extraordinary challenge.
I'm no gem. Believe me. I'm a royal pain in the ass. I'm stubborn. My mood swings are something else. But I was chosen. Frank and I, we were both chosen for this extraordinary challenge. To be Mallory's parents. Not because we are perfect parents and do everything right all of the time. We don't even come close to that description. No, we were chosen because we have love and compassion in our hearts. We don't seek out to hurt others and we teach our children the same. We were chosen because we are brave and we can teach Mallory to be brave. We were chosen because we don't see her as her disability (Pfeiffer Syndrome) first, we just see her as our daughter. We love her more than words can express.
Every parent I've met along this journey has met that exact description as well. Although, I can't speak about their mood swings, but most definitely the loving and compassionate part... with a bit of awesomeness thrown in. That is my answer to the 'why' question. We are the right ones for the job. Plain and simple. Our kids are extraordinary, so we have to be as well.
Chin up to all of you parents out there raising these special kids... or any kids really. It's a job that requires a lot of devotion and love. You fight others' ignorance with confidence. Anyone that can insult a child doesn't deserve a second glance. Those internet trolls don't know what kind of love they are missing by being so closed off and ignorant. I feel sorry for them. They are most definitely not worth my time or Mallory's. Not to mention, my baby girl is too good and too beautiful for them!