It is not a secret that when Hailey was born and we heard the words Down syndrome, I was mad at God. I prayed and prayed for a healthy child and I didn't think he fulfilled his end of the deal. I made deals with him with each prayer I said. If she didn't have Down syndrome, I would go to church more. If she didn't have Ds, I would volunteer more. If she didn't have Ds, I would read the bible more. You get the picture. I wanted to give him a chance to fix messing up my prayers the first time around. What did I do in my life for this punishment? What did Hailey do to deserve this? What could this innocent child have done to deserve this?
Minutes passed....hours passed...days passed. Acceptance came over me, reality set in. It was true. She had Down syndrome. I couldn't chnage it. It was true. God did this on purpose. Then the guilt followed (Catholics have a lot of guilt). Fortunately, with the world of Facebook, I was able to reconnect with a priest that we all loved from my childhood. I had a lot of time to communicate sitting in the NICU seven days a week. Hailey couldn't talk back and I needed to clear my head frequently of the beeping sounds and watching the monitors. Father J answered every message I sent him. Thank goodness! He reminded me that God doesn't make mistakes. Hailey wasn't "damaged goods" or "imperfect". He reminded me it wasn't punishment for something Jason or I did during our lives. He didn't judge me for questioning God. His responses were always short and sweet, but they always sent me a wave of calmness.
I'm positive that I prayed more those first few months Hailey was here than I have in my entire life. I prayed the rosary daily (sometimes more than once a day). It was my yoga...my meditation. It calmed my anxiety and slowed down my racing heart. I prayed when I knew things were out of my control...Hailey's heart failure, open heart surgery, etc. I turned to God. I needed him to show me that everything was going to be okay and that he was taking care of my little girl. I needed him to know that I was weak and I needed his strength.
We attend church much more regularly since Hailey's open heart surgery (we didn't prior to it because I kept her away from groups of people as much as possible.) Hailey is quite the hit in church. People go out of their way to shake her hand. One lady repeatedly tells me that Hailey saying "peace" is the highlight of her day and she looks forward to it every week. She says Hi to everyone and even tries to run away occasionally (thank goodness that they catch her every time!).
After I wrote this original post, I finally made it to reconciliation (confession) which is one the seven sacraments of the Catholic church (please, I'm not debating my religion here). I held onto a lot of pain and guilt of questioning God and being mad at God for giving us Hailey who had Down syndrome and then for making Hailey have Down syndrome. It was good for my soul to release that pain. It felt good to have God forgive me, but also for me to forgive myself.
I do believe that Hailey was chosen for us and we were chosen for her. Not because we are special people, but because she fits with us. It was just meant to be.
Here are a couple of pics of Miss Sassy Pants arguing with me. I kept insisting that her baby's bed and blanket were too small for her. As you can tell, she had an opinion about it and never seemed convinced that I was right.