Tuesday, October 1, 2013

31 for 21

October is Down Syndrome Awareness Month. I didn't know this before I had Leighton. Can you believe it is my 3rd time doing the 31 for 21 challenge? I feel like my thoughts and experience over these 2.5 years has grown, and even changed some, but I know I have so much more to learn from other parents that are further along on this journey and even newer parents too.  realize it's hard for other parents, friends, co-workers, and families sometimes to ask questions or approach us "special needs parents" because they don't know what words to use, or how we always feel about the things our child is going through. I have learned every single Mom with a Down syndrome child goes about the experience different. Comments people make sometimes rub some wrong and others might not be bothered. How they feel about studies going on to cure, diagnose, and improve T-21 kids varies greatly. I would never choose to speak for all parents with Down syndrome children because I wouldn't always want another special needs parent's opinions or reaction to be assumed as mine. I also always try to approach the comments, and questions with some Empathy. I don't always know the right words or actions to do in sensitive situations either so I always try to go in the situations with forgiveness before offense. I'm not saying it will always be easy, but that is my goal through this experience. I also decided the first time I really got to hold my Leighton that I would love her with my whole heart. 

That was honestly up on the list as the hardest week of my life. The first days dealing with the reality that this was my knew reality, all the unknowns that were being thrown at me about her health. 

Then the hardest was leaving my baby at the hospital, as I was forced to go home. Seeing all the blankets, burp rags, and clothes I had prepared for her healthy happy arrival that just wasn't. 

The weirdest part was anytime I was in that NICU room with her any sadness or fear was gone. Her presense made it all better. I was instantly happy again from the second I walked back in that door and it was one of the best blessings. Something I haven't told very many people (because its cheesy) about those first days is as I was driving back and forth from the hospital that One Republic, Good Life song was really popular and it played one late night. I don't know why but I was really listening to the words and it was like someone was giving me the best advice (life advice from a random band?? thats why I haven't admitted it much, but it was REALLY good advice) for this new unplanned course of a life and I realized that despite what the doctors said this song's chorus could be right. Those words "This has gotta be a good life, It really could be a good life" really pierced my sole and I chose right then and there I was going to be Happy, I was going to do my best to make this life good, and Leighton's life a really good life. I was going to make the best of this unplanned course that was chosen for me, because that is really the only control I have in this life. I can choose how I react to this situation and any other hard one too. I can choose to be happy, I can help others going through this experience with me, I can take something I thought was a negative and make it the biggest positive of my life. So if I post a little to many pictures of this preciouse little girl or brag about her too much I'm really sorry. I just really have given her my whole heart and she has become the best thing in my life because of all of this. So I guess I might have foggy glasses when it comes to the greatness I think that she is. 

my Lolly girl a little smaller
My goal for my post is to show what life is like raising a child with Down syndrome for me. I hope you see I think this life with our little Lolly in it has been and continues to be pretty sweet.  

1 comment:

  1. Beautifully said and I know you have lived and are living what you wrote above. Love you and your Lolly!