When Andrew was 20 months old and we had just moved to San Antonio he was in a constant state of frustration and confusion. At that time the only things that could calm him down were music and food. There were some days of poor parenting where we did just let him eat all day. Music was and still is the number one calmer for him, and it actually lowers his heart rate. I had downloaded a song called Just Breathe by Anna Nalick before our move. I initially heard this song on Grey's Anatomy. I had no idea that during those first few months in our new home that this would be the song to keep our family dancing, and connected. In the midst of Andrew's meltdowns, which we now know was him dealing with the regression part of the syndrome, we would all stand in our office listening to this song on itunes and dancing together. It was definitely a difficult time for all of us. We knew he still needed us and loved us and knew who we were but at that time he could no longer show that. We have come to a better place of understanding now and I have no doubt that he knows who we are and that he loves us. I think this was harder for Felt to come to than me, but maybe I'm wrong. I was reminded of this song today as Andrew threw down some major tantrums because he just couldn't fall asleep. I started to sing this song in my head and just like it always worked for Andrew, it worked for me.
I was talking with some friends of ours this weekend about life's trials and challenges. I realized in talking with them that I have shared specifics on how our lives have changed but have not shared the important parts. I don't know why Andrew had to go through all of the illnesses, appointments, surgeries, tests, and now diagnosis of Rett Syndrome. However, I can say that we are better people because of all that he has been through. I think we are more patient, calm (Felt is still red headed, what can you do?) loving and have less anxiety and fear about the future. I know God has a plan in all of this and I am thankful that our faith in Him has seen us through these trials. I know my God is faithful and I truly believe that Andrew and all of the other children with Rett Syndrome will be cured one day. God is good and I can really say that even days like to day, life is good! Things haven't always been this good and during Andrew's initial diagnosis of Autism we both hit some dark places and thoughts where we could sit an entire weeknd in front of the tv and pretend to be in a different life. I am so thankful that we are on the other side of that hurdle and in some weird way I am thankful for Rett Syndrome and the way our family has grown because of it.
On another note- after lots of discussion of pros and cons we have both decided to adopt. Our daughter, yes it is a girl, is two years old and we have named her Lucy. She is a great dane and we adopted her from the Animal Care Services of San Antonio. I went to visit the dogs last weekend with a friend and you know the story- you can't go without coming home with one. She has done very well since Thursday and seems to enjoy being part of the family. When Andrew first saw her he looked at her and giggled. We have spent some time with him sitting and petting her and she is very good with him, letting him eat his meals unlike our other dog Maddie.
Rett Syndrome. One year Post Surgery
4 months ago